Valuing Indigenous Peoples in Health Research

December 2015, Volume 10, Issue 2 Valuing Indigenous Peoples in Health Research

Editorial

1-2 Editorial: Valuing Indigenous Peoples in Health Research Dr. Charlotte Loppie, IJIH Editor Namaste Marsden, IJIH Manager Editor Articles

3-20 Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions–Their Reality and Resilience C. Bourassa, M. Blind, D. Dietrich, E. Oleson

21-32 Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia H.G. Harder, T. Holyk, V.L. Russell, T. Klassen-Ross

33-50 The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Health Providers’ Pain Assessment M. Johnson-Jennings, W. Tarraf, H.M. González

51-65 Orthodontic Treatment Need of Adolescents in the Island Community of Haida Gwaii, Canada A. Karim, J. Aleksejuniene, E.H.K. Yen, M. Brondani, A. Kazanjian

66-87 Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model E. Lincoln, B.A. Liang, T.K. Mackey

88-101 Formative Evaluation to Assess Communication Technology Access and Health Communication Preferences of Alaska Native People R.F. Robinson, D.A. Dillard, V.Y. Hiratsuka, J.J. Smith, S. Tierney, J.P. Avey, D.S. Buchwald

102-116 Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia C. Rojas, D. Castro, N. Gómez, M. Lozano, J. Congote, S. Paris, M. Soto, G. Yagarí, J. Mignone

117-131 The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities C.P. Shah, A. Reeves

132-150 Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions M. Stewart, H. Castleden, M. King, N. Letourneau, J.R. Masuda, L. Bourque Bearskin, S. Anderson, R. Blood

151-165 Defined by 0.11%: Policies Delimiting Access to Prescription Drugs for First Nations People in British Columbia E. Wale, J. Lavoie

December 2015, Volume 10, Issue 2 The International Journal of Indigenous Health is a peer-reviewed publication of the Aboriginal Health Research Networks Secretariat (AHRNetS), Centre for Aboriginal Health Research at the University of Victoria.

Copyright/Permission to Reproduce The International Journal of Indigenous Health has an exclusive license for the articles published herein, limited to first right of publication granted by the author(s) who hold copyright. The AHRNetS at the Centre for Aboriginal Health, University of Victoria provides free, open access to the articles herein. Publisher Articles herein are covered by applicable copyright law and Creative Commons Aboriginal Health Research Networks license granted to the International Journal of Indigenous Health by the Secretariat, Centre for Aboriginal Health author(s) that allows readers fully credited use and reproduction, and prohibits Research, University of Victoria any derivative or commercial use of the article(s) published in the International Journal of Indigenous Health. Editor Charlotte Loppie Disclaimer Managing Editor The International Journal of Indigenous Health is funded in part by the Namaste Marsden Canadian Institutes of Health Research - Institute of Aboriginal Peoples’ Health. Production of this Journal has been made possible through a financial Editorial Assistant contribution from the Public Agency of Canada through the National Alexa Norton Collaborating Centre for Aboriginal Health. The views expressed herein do not Editorial Advisory Board necessarily represent the view of the Canadian Institutes of Health Research or Heather Castleden the Public Health Agency of Canada. The articles represent the views of the Suzanne Christopher authors and do not necessarily reflect the views of the AHRNetS. AHRNetS at Margo Greenwood the University of Victoria assumes no responsibility or liability for damages Maura Hanrahan arising from any error or omission, or from the use of any information or Rod McCormick advice, contained in this publication. Jennifer Poudrier Charlotte Loppie Julianne Sanguins Subscription The International Journal of Indigenous Health is distributed free of charge Copy Editor through its website, which is online and open-access. If you wish to receive an Dawn Loewen email with the Table of Contents of newly released publications, please sign-up at http://journals.uvic.ca/index.php/ijih/user/register. Cover Design and Layout Rayola Creative Submissions Logo Artwork The International Journal of Indigenous Health accepts article submissions on Jensen Group the topic of Indigenous health globally. All submissions should be submitted via email to [email protected], or online on the Journal website http://uvic.ca/ijih Contributors C. Bourassa, M. Blind, D. Dietrich, E. Oleson, H.G. Harder, T. Holyk, V.L. Russell, T. Klassen- Ross, M. Johnson-Jennings, W. Tarraf, H.M. González, A. Karim, J. Aleksejuniene, E.H.K. Yen, M. Brondani, A. Kazanjian, E. Lincoln, B.A. Liang, T.K. Mackey, R.F. Robinson, D.A. Dillard, V.Y. Hiratsuka, J.J. Smith, S. Tierney, J.P. Avey, D.S. Buchwald, C. Rojas, D. Castro, N. Gómez, M. Lozano, J. Congote, S. Paris, M. Soto, G. Yagarí, J. Mignone, C.P. Shah, A. Reeves, M. Stewart, H. Castleden, M. King, N. Letourneau, J.R. Masuda, L. Bourque Bearskin, S. Anderson, R. Blood, E. Wale, J. Lavoie

Editorial Office International Journal of Indigenous Health Centre for Aboriginal Health Research, University of Victoria PO Box 1700 STN CSC Victoria, BC, Canada V8W 2Y2 http://uvic.ca/ijih

ISSN 2291-9368 (Print) 2291-9376 (Online)

Editorial

Valuing Indigenous Peoples in Health Research

Welcome Indigenous and allied readers, researchers, and communities. We are very grateful for your interest in and support of the International Journal of Indigenous Health (IJIH). This edition of the IJIH presents a breadth of research-based articles that examine health inequities, promising practices generated by population health perspectives, and community-based research partnerships that focus on specific health issues in culturally and geographically defined communities. With innovative submissions from researchers, community-based practitioners, and students, IJIH hopes to continue to publish excellent research that informs positive changes to the public health system for Indigenous patients, and research grounded in Indigenous knowledge, ways of being, and knowing. IJIH in particular encourages submissions that discuss the results of research rooted in Indigeneity and therefore ancient knowledge that is new to some readers and researchers. Indigenous knowledge and perspectives help expand Western academic discourse about how we conceptualize illness, healing, and wellness through Indigenous languages, cultures, and diverse Indigenous perspectives. The final edition of the National Aboriginal Health Organization’s Journal of Aboriginal Health (NAHO JAH) was a very Special Issue on Inuit Health and Well- Being, which was released during the summer of 2015. This excellent Journal edition, co-edited by Chris Furgal and Dianne Kinnon, included community-based stories and artistic expression and is an amazing contribution to published Indigenous knowledge in English, was fully translated into Inuktitut syllabics. If you missed this Special Issue we encourage you to take the time to download the full edition, read, refer to, and enjoy it. In this most recent edition, contributing authors share a wealth of Indigenous community- based health knowledge, experience, and innovation in the areas of mental health, dental health, and chronic illness, along with issues of racism and cultural safety in health care as well as technological and jurisdictional barriers to care. Carrie Bourassa and colleagues examine the physical, mental, emotional, and spiritual impacts of neurological conditions on Aboriginal women and their caregivers. Henry Harder and colleagues investigate the effectiveness of community-based interventions in preventing youth suicide in Carrier and Sekani nations. Michelle Johnson-Jennings and colleagues examine the influence of Indigenous racial concordance and patient ethnic salience on health providers’ assessment of chronic pain in the United States. Asef Karim and colleagues conduct a prevalence study of malocclusion and orthodontic treatment need among schoolchildren on the island community of Haida Gwaii, British Columbia, Canada. Elizabeth Lincoln and colleagues review the interculturality of Indigenous Mapuche healthcare in Chile’s Makewe Hospital. Renee F. Robinson and colleagues explore whether Alaska Native and American Indian people have access to health communication technologies available through a patient-centred medical home. Carlos Rojas and colleagues conduct the first prevalence study on HIV in an Indigenous community in Colombia. Chandrakant Shah and colleague report on the innovative Aboriginal Cultural Safety Initiative (ACSI) curriculum, delivered to students in health sciences programs in colleges and universities in Ontario, Canada. Miriam Stewart and colleagues conduct a multi-method, multi-site participatory research project to examine support interventions that focus on the unique support needs of parents of Aboriginal children affected by asthma. Emily Wale and colleague explore the ambiguities embedded in the Non-Insured Health Benefits (NIHB) and provincial pharmaceutical benefit policies to better understand the prescription dispensing processes for

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Editorial

First Nations people in British Columbia, Canada. We hope you enjoy these excellent and informative articles from diverse cultures, regions, countries, health priorities, and research areas. The IJIH is online, open-access, and free. You can support the IJIH by making a donation, signing up to receive updates on the IJIH website, citing IJIH articles in your research, making a submission, and becoming a peer reviewer. IJIH is supported through small contributions from various research grants, so your support is very much valued to continue this important service to the Indigenous health and research community. On behalf of all contributors to this Edition, we thank you again for your interest and support, and hope that you will find the knowledge and learnings shared by the authors useful in your work to improve the health of Indigenous peoples. In health and healing,

Charlotte Reading – Editor Namaste Marsden – Managing Editor

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Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions—Their Reality and Resilience • Carrie Bourassa, Melissa Blind, Devin Dietrich, Eric Oleson Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions—Their Reality and Resilience REVISED REFERENCES, 04/13/2016

Abstract The “Understanding from Within” (UFW) project was part of the National Health Population Study of Neurological Conditions (NHPSNC), a 4-year study aimed at better understanding the scope of neurological conditions in Canada, and funded by the Public Health Agency of Canada. The goal of the UFW project was to develop a better understanding of how Aboriginal people conceptualize neurological conditions and the impacts on their families and communities, and the resources and supports needed to provide culturally safe and appropriate care. The research was qualitative and used an Indigenous Research Methodologies (IRM) approach to guide the design, collection of data, and analysis. Two methods were used to collect information: in-depth interviews and research circles (focus groups). A total of 80 people participated in the research, 69 women and 11 men. In-depth interviews were undertaken with key informants (22), with Aboriginal people living with a neurological condition (18), and with Aboriginal people caring for someone with a neurological condition (40). This paper examines the physical, mental, emotional, and spiritual impacts of neurological conditions on Aboriginal people, primarily women. It also examines other themes that emerged from the narratives, including recommendations to healthcare providers and cross-cutting themes that are relevant to culturally safe care and how it relates to neurological conditions. Keywords Dementia, caregiving, Indigenous health, cultural safety, neurological degeneration, colonialism, healthcare, women’s health

Authors Carrie Bourassa, PhD, professor, First Nations University of Canada. Dr. Bourassa is a Métis academic specializing in Indigenous community-based research methodologies as well as Indigenous health. Melissa Blind, research associate, Centre for Rural and Northern Health Research, Laurentian University. Melissa is Cree and Ukrainian and is a member of the George Gordon First Nation in Saskatchewan, Canada. Melissa contributed to the data collection, data analysis, and writing on this project. Devin Dietrich, community planner, Manitoba Municipal Government, Province of Manitoba. Originally from Winnipeg, Manitoba, Devin is Métis and a member of the Manitoba Metis Federation (MMF). For this project, Devin brought expertise in qualitative data management and analysis. Eric Oleson, Indigenous health research supervisor, First Nations University of Canada. Eric contributed to the data analysis and writing.

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Acknowledgements Funding for this research was provided through the National Health Population Study of Neurological Conditions by the Public Health Agency of Canada.

Introduction In 2010 the Native Women’s Association of Canada obtained funding through the Public Health Agency of Canada to undertake a research project entitled “Understanding from Within: Developing community-driven and culturally relevant models for understanding and responding to neurological conditions among Aboriginal Peoples (UFW).” The project was one of 13 that were funded as part of the 4-year National Health Population Study of Neurological Conditions (NHPSNC), focused on filling gaps in knowledge about individuals with neurological conditions, their families, and caregivers. The UFW team received funding, over the course of 27 months, to study the impacts of neurological conditions on Aboriginal women, their families, and their communities. The research team looked at the impacts of neurological conditions, the risk factors associated with neurological conditions, and at health services utilized, including any gaps in services. Fourteen conditions1 were selected, according to NHPSNC specifications based on the lack of knowledge and potential population disease burden. However, the UFW research team and advisory committee, both comprising Aboriginal and non-Aboriginal individuals experienced in Aboriginal research, neurological research, and traditional methods of gaining and translating knowledge, recognized that there is a huge knowledge gap in regard to neurological conditions among Aboriginal people and did not limit the scope of the study to the prescribed 14 conditions. The UFW team expanded the scope to include any conditions that impact the brain, the spine, or the nervous system. Literature on the impacts of neurological conditions on Aboriginal people is lacking in spite of the fact that they have higher rates of chronic diseases (Loppie-Reading & Wien, 2009) and bear a disproportionate burden of mortality and morbidity (Tjepkema, Wilkins, Senécal, Guimon, & Penney, 2009). It is imperative that a full range of the social determinants of health be included when looking at the health and well-being of Aboriginal peoples.

Aboriginal Women Experiencing Neurological Conditions Aboriginal women were the focus of our study because they have a longer lifespan than Aboriginal men (O’Donnell & Wallace, 2011) and also represent the majority of caregivers in Aboriginal communities, whether they are formal or informal, paid or unpaid (Hennessy & John, 1995; Hennessy & John, 1996; Korn et al., 2009). Specific data regarding Aboriginal neurological health is very limited. A detailed environmental scan and literature review revealed little in the way of data for the neurologic conditions defined for the project by the Public Health Agency of Canada. Dr. Janet Smylie completed a scan of available literature and data and confirmed that only three Canadian datasets had disaggregated Aboriginal neurologic health data: the Canadian Community Health Survey (CCHS), First Nations Regional Longitudinal Health Survey (RHS), and the National Population Health Survey (NPHS) (First Nations Centre, 2005; First Nations

1 Alzheimer’s disease and related dementia; amyotrophic lateral sclerosis (Lou Gehrig’s disease); brain tumours; cerebral palsy; dystonia; epilepsy; Huntington disease; hydrocephalus; multiple sclerosis; muscular dystrophy; neurotrauma (including brain and spinal cord injuries); Parkinson’s disease; spina bifida; Tourette syndrome.

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Information Governance Centre [FNIGC], 2012). Of these three, only the RHS has readily accessible Aboriginal data currently available. We were not able to identify Aboriginal data tabulations for the CCHS or the NPHS.

Colonization in Canada Aboriginal women are the most marginalized population in Canada. They experience higher rates of poverty, ill health, and violence when compared to the general Canadian population (Bourassa, McKay-McNab, & Hampton, 2009). This disparity can be attributed to the colonial experience in Canada, which is unique to Aboriginal Peoples. The forced removal of children from families to be stripped of their identities in residential schools, outlawing of traditional ceremony and practices, and the stripping of power from people and communities caused intergenerational trauma for individuals, families, and communities, the effects of which are apparent in the health outcomes of Aboriginal people. Aboriginal women have been targeted through colonial policy, which has served to marginalize them and make them a particularly vulnerable population. Prior to contact, Indigenous societies valued both men’s and women’s roles. Those roles changed when patriarchal systems were introduced accompanied by sexist legislation (Amnesty International, 2009). The Indian Act was used to “define who Indians were and were not; manage Indians and their lands; concentrate authority over Indian people (Indians were to be civilized and Christianized)” (Wotherspoon & Satzewich, 2000, p. 30). This legislation was sexist in that between 1876 and 1985 Status Indian women would lose status if they married Non-Status men. The same was not true for Status Indian men (Bourassa, 2010). The removal of children through the residential school system and the “Sixties Scoop” also contributed to the marginalization of Aboriginal women (Amnesty International, 2009; Kubick, Bourassa, & Hampton, 2009). The mandate behind the residential schools was to “kill the Indian and save the child” (to paraphrase Richard Pratt, the army officer who developed the first American Indian boarding school). The Sixties Scoop further contributed to the cultural genocide of Aboriginal people, by removing Aboriginal children from their families and communities. According to the Royal Commission on Aboriginal Peoples report (1996), placements in non-Aboriginal homes typically ranged from 70 to 90 percent in most provinces. The only exception was Quebec, where Cree and Inuit child placements, reported separately, were almost entirely in Aboriginal homes that were usually in the children’s home communities. Many parents did not know why their children were taken away from them. “The grief and anguish birth parents suffered often led to the abuse of alcohol as a way of trying to cope with the situation, which often led to the removal of additional children” (Royal Commission on Aboriginal Peoples, 1996). As Amnesty International (2009) notes, “…the mass removal of Indigenous children from their families and communities have all undermined the traditional cultural and subsistence activities of Indigenous societies in Canada” (p. 6). Racism and sexism combine to create greater inequalities for Aboriginal women. In fact, Voyageur (2000) indicates that the situation of Aboriginal women can be referred to as “multiple jeopardy” because these women experience multiple economic, social, and political barriers within and outside Aboriginal communities as a direct result of colonization. Brasfield (2001), Corrado and Cohen (2003), and Robertson (2006) refer to the intergenerational impacts and symptoms associated with the schools as residential school syndrome (RSS). They state that RSS is somewhat similar to posttraumatic stress disorder (PTSD) but differs in the cultural impacts. Brasfield (2001) states:

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The residential school syndrome diagnosis is different from that of post-traumatic stress disorder in that there is a significant cultural impact and a persistent tendency to abuse alcohol or other drugs that is particularly associated with violent outbursts of anger. (Symptomology section, para. 6)

Brasfield (2001) further recognized that an individual could still suffer from RSS even if he or she did not suffer from a specific traumatizing incident:

A. The person has attended an Indian residential school or is closely related to or involved with a person who has attended such a school. (1) The school attendance was experienced as intrusive, alien and frightening (2) The person’s response to the school attendance involved fear, helplessness, passivity, and expressed or unexpressed anger (Table 1)

Indian residential schools were a place of terror for many Indigenous people. The legacy surrounding the schools has had a great impact on former students, their families, and their communities. As one of our co-researchers (a key informant) stated:

We talked about the impacts of the residential school, the cross-generational impacts, and so much of the work on residential school is to compensate the people, to have them disclose and come to some terms of understanding about what happened to them. But there is . . . the destruction of families and the loss of . . . the majority of them fit in the loss of culture which you’ll want to deal with, the breakdown of families and dealing with emotions, and dealing with mental.

The loss of culture and breakdown of families, along with the physical, mental, emotional, and spiritual abuse experienced as a result of the residential schools, continue to impact Aboriginal families and communities. This impact is seen in the disproportionately high levels of abuse that continue to plague our communities in terms of addictions, violence, and suicide. In order to stop this cycle of abuse and trauma, healing needs to occur on all levels including individual, family, community, and nation. Contemporary Aboriginal women experience “multiple jeopardy” in their everyday lived experiences. For example, according to the Canadian Research Institute for the Advancement of Women (CRIAW, 2002), 43 percent of Aboriginal women live in poverty. CRIAW (2002) also notes that Aboriginal women have lower incomes, less formal education, poorer housing, lower health status, and a greater chance of becoming lone parents than Aboriginal men or non- Aboriginal women in Canada. Status Indian women are five times as likely as non-Aboriginal women to be nonparticipants in the labour force. Aboriginal women are also more likely to experience emotional abuse than non-Aboriginal women are. The complicated dynamics of racism and discrimination, as well as cultural values and beliefs, frequently make it difficult for Aboriginal women to disclose abuse to both formal services (i.e., police, shelters, and healthcare professionals) and informal supports (i.e., family and relatives). Some Aboriginal women are afraid of disclosing abuse to formal services for fear they will have their children removed, and some may not have support where they are living. If they moved from the reserve to the city, they may not have family support. If they live on a reserve, they may not have access to formal support systems, or fear others will find out about

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Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions—Their Reality and Resilience • Carrie Bourassa, Melissa Blind, Devin Dietrich, Eric Oleson their situation in a small community. Many Aboriginal women living in northern and remote communities are faced with the additional challenge of finding services specific to Aboriginal culture and with an awareness of the harmful effects of colonization (McGillivray & Comaskey, 1999; Thomlinson, Erickson, & Cook, 2000). Many Aboriginal women who do find the courage to fight for services are often faced with other barriers and challenges, such as discrimination and racism within the healthcare system. Most of the Aboriginal women that we spoke with shared that they were more willing to continue fighting for services for their children than they were for themselves, especially when faced with rude or judgmental providers. For example, one co-researcher shared how she would push back and stand her ground in fighting for services for her daughter, even when faced with ignorance or discrimination:

When this first started happening I was very young, so I was in my late twenties, early thirties, and I was thinking like I’m young, First Nations, single parent, and they don’t really know what Rett syndrome is because the pediatrician didn’t really know a lot of the symptoms. I felt like I was being judged. It was frustrating and it was hurtful, but at the same time I felt more mad about it and when it comes down to it, it doesn’t matter what they’re trying to think, I’m going to get whatever done that my daughter needs. And I wasn’t going to let anyone’s ignorance stop me. And so I just started being really hard, like, it’s almost like I would go into communicating-with-a-difficult-person mode and I’d get this really—I could feel the really hard exterior; it’s like I had to really stand my ground and show that I wasn’t going to back down or I wasn’t going to go away or that I wasn’t going to bend.

Standing one’s ground in fighting for services takes a lot of strength and determination. Unfortunately, not everyone has that ability to advocate for themselves and would rather try to take care of any health issues on their own than face any kind of judgmental behaviour from healthcare staff or providers. For example, one of our co-researchers stopped going to her doctor because of the way the nurse spoke to her:

She kind of scared me—that’s why I don’t go and see my doctor anymore . . . I don’t know; it’s just the way her voice scared me inside, so I said, “That’s it; I’m not going to see the doctor.”

These types of stories are documented in Allen and Smylie’s (2015) report and help explain why Aboriginal women experience a greater burden of ill health than other Canadian women. According to Mann (2005), in 1999–2000 life expectancy for First Nations women was 76.6 years and for Inuit women in Nunavut 70.2 years, compared with 81.8 years for Canadian women in general. Aboriginal women have higher incidences of diabetes, tobacco addiction, and HIV/AIDS. They are also more likely to be affected by drug and alcohol abuse than are other Canadian women. Aboriginal women also have a suicide rate up to eight times that of other Canadian women, depending upon age (Native Women’s Association of Canada, 2004; Prentice, 2005). According to the Regional Health Survey, Aboriginal “women are more likely than [Aboriginal] men to experience difficulties with: long waiting lists; the availability of a doctor or nurse in their area; seeking approval for NIHB covered services; arranging for and costs of

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Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions—Their Reality and Resilience • Carrie Bourassa, Melissa Blind, Devin Dietrich, Eric Oleson transportation; and the costs of childcare” (FNIGC, 2004, para.14). Not being able to access services in a timely manner, as well as not having access to culturally safe care, can put Aboriginal women at greater risk for acquiring a neurological condition. For example, prevalence rates for diabetes, obesity, depression, and substance abuse are higher for the Aboriginal population than the general population. If Aboriginal women do not feel safe or secure in accessing treatment for these conditions, they will end up waiting until the situation becomes more dire. Doing so can have serious implications for neurological health, especially in terms of cognitive function, dementia, or strokes (Pollitt, 1997; Smith et al., 2010). Allen and Smylie (2015) state: “Racism serves as a serious barrier to health care access that can lead to delayed treatment or a lack of treatment altogether, either of which can have devastating effects on Indigenous people, their families and communities” (p. 27).

Process: Methodology, Methods, and Analysis This research was qualitative and used an Indigenous Research Methodologies (IRM) approach to guide the design, collection of data, and analysis of the research. The four Rs of research involving Aboriginal Peoples—respect, reciprocity, relevance, and responsibility, described by Kirkness and Barnhardt (1991)—provided a simple framework for understanding and engaging in research in a culturally appropriate and safe manner. These principles were actively considered when purposefully engaging the expertise of the advisory committee to add community voice to the project (the committee provided guidance throughout the project). These principles were also considered when creating safe environments for Aboriginal people to share their stories and experiences. The choice to use a narrative approach to analyze data collected for this project emphasized the need to allow the participants to tell their story. This approach also privileged that “story” as a culturally informed interpretation process. The research was then capable of yielding findings that provided an accurate interpretation of the information that was gathered and that reinforced the views of Aboriginal women living with a neurological disorder. Narrative analysis emphasizes a story-based approach to understanding a given phenomenon by taking, as its object, the “story” (Liamputtong & Ezzy, 2005). This is consistent with and respectful of the oral tradition of storytelling as a method of transferring knowledge among Aboriginal people (Kovach, 2009). The advisory committee supported the idea of drawing out and analyzing the participants’ knowledge in the form of stories. Taking the advice of the committee was one way to ensure respectful research was undertaken and that the project remained relevant to the Aboriginal communities under study. Through following Indigenous research methods that support and uphold a narrative approach, we were able to hear about the impacts of living with a neurological condition or caring for a loved one with a neurological condition, as well as participants’ experiences in navigating their way through the healthcare system. For some, getting a diagnosis and eventual treatment plan took a lot of strength and determination in terms of getting second opinions, asking for referrals, and fighting for services. This information is not always captured in health system reports or case studies.

Methods Data were collected from two distinct groups: key informants (KI—knowledge holders, health administrators, or health practitioners) and Aboriginal people experiencing a neurological condition or Aboriginal people caring for someone with a condition (ID – individual interviews). The process used two different methods of collection: in-depth interviews and research circles.

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In-depth interviews allowed us to gain insight into a person’s lived experience and to hear their story by allowing a less structured process in guiding the questioning of participants (Kovach, 2009). Research circles were also undertaken with those experiencing a neurological condition and their caregivers but not with key informants. Research circles are based on the sharing circle used within Aboriginal cultures for sharing and gathering knowledge, which was adapted for research purposes (Kovach, 2009). It works like a focus group. Instead of trying to get people in the group to build dialogue through discussion, it is more aimed at letting a person tell their story and then passing the floor to the next participant (Kovach, 2009). The UFW research team worked with a community contact person to ensure the research circles were culturally appropriate for the region and traditional protocols were followed. Where appropriate, Elders were presented with tobacco, cloth, and an honorarium to open and close the circle with a prayer. These offerings are a part of the protocols followed within many Aboriginal communities.

Analysis: Collective Coding, Reducing, and Contextualizing The qualitative data collected for this project was collectively coded by research team members into logical chunks or pieces of a story. These pieces were organized into nodes (subthemes) using the qualitative analysis program NVivo. The nodes, which are collections of coded data organized for similar content, were summarized. Continual reconsidering and re- coding of the data resulted in at least 60 nodes for each of the KI data and the ID data groups. The KI data were then further reduced by the research team into eight overarching theme areas by combining similar or related nodes into major theme areas. The ID data were put through a second phase of collective analysis utilizing the entire research team and some members of the advisory committee. This paper is based on one of the major themes that developed during this process and was one of the major discussion points during the reflection aspect: Colonial and Systemic Factors.

Discussion: What Their Stories Told Us This research revealed incredible stories of strength from our participants. It also exposed barriers and truths that healthcare providers, policymakers, and educators need to hear and understand. We are honoured to share their stories and experiences so that we might learn how to improve health outcomes and experiences for Aboriginal women with neurological conditions.

Cycle of Trauma Prior to asking the women how neurological conditions impacted their lives, we asked them to tell us a little about themselves. This open-ended question allowed the women to share as much or as little as they wanted about their lives, their families and communities, their neurological conditions, and how long it took for them to get a diagnosis. The caregivers of those with a neurological condition would often share a bit about their lives and their relationships with those suffering from a condition. Many of the women spoke about their experiences and separated their life story in terms of before the symptoms started and after the diagnosis. Being diagnosed with a neurological condition is a traumatic experience for the individual and for family members. Evans-Campbell (2008) describes a traumatic event as being “outside the normal range of an individual’s experience and constituted for that individual, an exceptional mental and physical stressor” (p. 318. This sentiment is echoed by one of our co- researchers:

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She [the counsellor] asked me what I thought what a trauma was, and I thought if someone had an accident and they have a blunt-force trauma for one, watching CSI and stuff like that and they get hurt. And she was like: “Well, that’s partly right, but it’s something that [is] more than one person can handle. And, like one time I understood what she was talking about and I could feel that happening, and I could recognize when it was happening and I realized that I was going through these cycles. I felt like I was getting depressed and feeling anxiety, and I wanted it to stop; what could I do to make it stop? But then it was just kind of understanding that it’s like an overflow of trauma, like more than I could handle, and I just had to go through the cycle and stop resisting it.

For this caregiver, along with many of the other women we talked with, these traumatic stressors are complex in that they are often ongoing and are not just a one-time occurrence. Trauma at the individual level is often characterized as being simple, as in a one-time occurrence not involving physical or sexual abuse, or complex, as in occurring repeatedly or cumulatively, and may involve physical or sexual abuse (Evans-Campbell, 2008; Haskell, 2009). For many Aboriginal women we spoke with, the traumatic event of coming to a diagnosis was often compounded by past traumas experienced at the family, community, and multigenerational level. Many of the women we spoke with talked about the legacy of colonization in terms of the abuses and traumas that impacted their lives, their families, and their communities. The legacy of colonization can be looked at in terms of the historical trauma, a “collective complex trauma inflicted on a group of people who share a specific identity or affiliation. . . It is the legacy of numerous traumatic events a community experiences over generations” (Evans-Campbell, 2008, p. 320). For Aboriginal Peoples the legacy of colonialism is still felt far and wide. Wesley- Esquimaux and Smolewski (2004) state, “Aboriginal people never had enough time, between various sequences of new world epidemics, genocide, trauma, and forced assimilation to develop tools for passing through the periodic social and cultural disintegration of their nations” (p. 77). Intergenerational and multigenerational trauma happens when the effects of trauma are not resolved in one generation. “When trauma is ignored and there is no support for dealing with it, the trauma will be passed from one generation to the next” (Aboriginal Healing Foundation, 1999, p. A5). Many of the women we spoke with talked about the intergenerational impacts of the residential schools. In the words of one co-researcher:

Anyways, after the funeral my mom didn’t return back to work ever. After that she kind of went crazy, she didn’t have much support and she didn’t like talking about our problems and I was always severely beaten and told not to talk about this and that. It wasn’t until I was older I realized my mother was a product of residential school abuse.

The residential school experience left a lasting scar on Aboriginal people, impacting multiple generations. For this co-researcher the trauma her mother experienced at the residential school carried over to impact upwards of four generations. Many of the women talked about how they dealt with some of their traumatic experiences. Some used drugs and alcohol as a way to mask the pain of experiencing various levels of trauma throughout their lives. One co-researcher recognized she was using alcohol as a way to mask her pain:

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Well, you know how, when I went to that treatment centre, you know they looked at things from that First Nations perspective and that was so healing for me, and again alcoholism it is another disease you know and I believe that, I believe that it’s a disease of the mind and our emotions and our mind and our spirit is so confused and suffering . . .

This co-researcher was able to recognize that she was using alcohol to mask the pain from the various levels of trauma that she experienced throughout her life. Unfortunately, not everyone has this level of awareness. Many of the women were further traumatized by their interactions with the healthcare system. The following section looks at some of the stories that resulted from dealing with the healthcare system and its practitioners.

Racism, Stereotyping, and Discrimination Our participants’ revelations strongly reinforce the assertion that colonization has shaped their experiences. Racism and sexism combine to produce poorer health outcomes and experiences for them in the healthcare system. Racism itself is increasingly being examined as an underlying root cause of ill health among Indigenous populations around the world (Larson, 2007). Many co-researchers described their experiences in the healthcare system and were explicit about systemic racism. One co- researcher shares her experience:

But they’re deeming them disabled. They say well, you Indians should—you guys should be out there working. You’re able to work. I will not do this for you. That’s the comeback they get. Then they come and they’re discouraged and they want to be suicidal.

Another co-researcher shared a similar story describing her experience with racism and discrimination:

You’re repeatedly going to the doctors and you’ve got these symptoms and nobody is really . . . you know, especially in our communities there is a lot of . . . in the hospital system there is a lot of racism and discrimination and stuff and people prejudge and say, “Well, you know . . . ”; they chalk it up to other things as opposed to what . . . you know, instead of looking a little bit deeper and really exploring what the issues could be.

Some co-researchers provided recommendations to healthcare providers. They spoke about the need to reduce discrimination and stereotypes and to treat each person with dignity and respect. Practicing culturally safe care means providing a healthcare environment that is free from systemic racism and stereotyping. It is about respectful communication, self-reflection, and understanding the colonial underpinnings of the institutions within which we work (Aboriginal Nurses Association of Canada, 2009; Health Council of Canada, 2012). This co-researcher shared her feelings:

Get rid of the stereotypes and treat people with dignity and respect. The healthcare practitioners need to listen and hear what people are saying to them. They need to be respectful of other ways of being and doing things. Also they need to stop giving Indians crappy providers, just because they [the doctors] are there. For example, a lot of doctors get signing bonuses to work in the north.

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Similar to the in-depth interviews with co-researchers, the interviews with key informants, who included healthcare practitioners also revealed systemic inequities linked to colonization, such as systemic racism, discrimination, and stereotyping within the healthcare system. Many spoke to the need for the implementation of culturally safe care. One key informant shared:

Let’s get to the issue at hand, which is: What can we do together or what can your agency do to help us out? So, if you were visiting with a neurological ward, I’m sure that the staff there would say to you: “Well, why don’t Aboriginal people do this and that and this?” And then, they’ll say: “Ok, now what can we say or do to actually help the people here who are actually Aboriginal and have neurological disorders.” And that would be a new question . . . they’ll say: “I never thought about that!” That’s neglect and I mean neglect, it’s actually part of [a] history of neglect where institutions and policies are set up without consideration of us. So they have to be reminded, but that’s actually part of our colonial experience. And it must not continue, and if they continue to do that then we will stop and come back when they are ready to talk, or we will work against their current lack of policy, which is a form of violence and racist. It’s a colonial, racist, thing for them to not consider us, because we are an important part of the population.

Others spoke about stereotyping directly affecting their healthcare. Some described their experiences in obtaining accurate diagnoses when seeing physicians and specialists. They often referred to their condition as an “invisible disability” and described the impacts it had on them. First, they had difficulty obtaining the diagnosis and were often labelled as hypochondriacs or depressed. Second, they continued to be labelled even after a diagnosis, because the disability is not overtly visible. One co-researcher shared her experience:

This can be termed an invisible disability in terms that I can do things until I can’t. Other people can’t understand it and it’s hard to get a diagnosis. It’s really hard to get people to understand why I can’t do certain things, or why I can do those things sometimes and then not again. There’s a lot of labelling associated with having an invisible disability. A lot of people don’t take you seriously and think that it’s “all in your head” or that you are overexaggerating or depressed. Stigma Stigma is a related subtheme that emerged throughout the research. The co-researchers expressed that stigma was an important issue that many of them experienced on a daily basis. While racism, stereotyping, and discrimination are often systemic, stigma is more of a sociocultural construct. One caregiver shared:

There needs to be more awareness and education about conditions like his because of all the stigmas that are attached to it—the dementia, the HIV, and the hepatitis C. I feel like we’re being treated differently and he is too, but we need to be telling people and family and educating them so that there aren’t any of these stigmas and fears.

Many of the co-researchers indicated that they experienced being stigmatized in healthcare settings and in everyday life situations, whether it was going to the grocery store or taking their

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Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions—Their Reality and Resilience • Carrie Bourassa, Melissa Blind, Devin Dietrich, Eric Oleson child for a walk. The need for greater awareness, education, and respect emerged, as this co- researcher shared:

More awareness and I feel that there’s a stigma towards epilepsy. Some people see it as a disease of alcoholism. My husband once said to me that I got seizures because I’m an alcoholic; he was being mean. It’s just downright cruel to say. I told my doctor about this and she said that she would confirm this, that my condition has nothing to do with alcoholism, if I ever needed it. Resiliency Aboriginal Peoples have endured over 500 years of colonial policies and practices aimed at destroying their cultural practices. While the assaults on culture may not be as overt as they were even 60 years ago, they are still seen in terms of the inequities of government funding of Aboriginal-specific initiatives relating to education, healthcare, and housing (Best Start Resource Centre, 2012). The stories in the previous sections touch on the historical and contemporary forms of colonialism Aboriginal people face. There were also amazing stories of strength and resiliency interspersed throughout these narratives. While the UFW project did not seek out narratives of resiliency, they did emerge as one of the subthemes during the analysis. This is not really surprising given the fact that Aboriginal people have continued to survive and thrive in spite of the colonial assaults on their minds, bodies, and spirits across multiple generations. Many Aboriginal people use their life stories and stories of their ancestors as a source of strength. Denham (2008), drawing from Neimeyer and Stewart (1996), states, “Trauma narratives transmit strength, optimism and coping strategies that family members internalize and use to ‘employ’ their own narratives, or organize life events and experiences into a coherent and ever-evolving story” (p. 360). These narratives can be seen as a source of strength in terms of recognizing what one is capable of doing during times of hardship. This strategy was used by one of our co-researchers in overcoming her fears of presenting:

When I started going to university, I hated doing presentations, I hated them and I sat down and said you’ve been through the residential schools—if you can go through that you can go through anything. That’s how I overcame my fear of presenting.

The co-researcher used her residential school experience to push her forward in accomplishing her goals and conquering her fears. We need to keep in mind, though, that not everyone has the ability to use experiences as a way of moving forward and overcoming challenges. Another one of our co-researchers states:

You know, some of us are stronger than others, some of us could’ve been sexually abused and hurt in a thousand ways and they seem to be able to function and learn and to grow. Others don’t have that, you know, so why condemn them because they don’t have that? Thank the Creator that some of us have strength to help the ones that don’t.

The ability to function, learn, and grow in the aftermath of personal trauma and intergenerational trauma takes a tremendous amount of strength and perseverance. Having a strong connection to family, community, or other trusted people helps some in talking about certain traumatic experiences and aids in their healing process. Other individuals may find great solace in taking part in cultural practices and teachings (Lalonde, 2006).

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The women who shared their stories with us talked about the coping mechanisms they used in various situations. They also spoke of the protective factors they drew from in order to deal with living with a neurological condition or caring for someone with a neurological condition. One co-researcher drew heavily on her family and her upbringing:

I don’t know, like I said, you have to believe and I think in my darkest hours that’s where you got to dig down and you really got to remember like where you came from, who your parents were, your family, friends.

Another co-researcher drew strength from following her traditional ways, while incorporating the songs from the church:

I guess my adversity that I’ve had to deal with—the Anishinabe ways helped me the most, they’ve been the strongest and then my mother playing the organ in church—I’d really like to go there and sing the songs—that helps me a lot as well.

After speaking about the impacts of a neurological condition on their life, family, or community, many of the participants would talk about how they dealt with certain situations and what coping mechanisms they used to get through their day. One co-researcher, who cares for her mother and her sister, spoke specifically about drawing strength from her family and their upbringing. She spoke of how her family used humour to deal with painful or frustrating situations:

I get angry and resentful sometimes about what I’ve got to do and why I have to do it. I get mad, but I’m better at sorting it out because, like she said, we have a pretty humorous family. We are always making silly jokes, always, constantly; constantly, and it keeps the mood up all the time. You can’t get too far into depression because that is just how they’ve always been, and my grandparents were like that. I know that you don’t dwell on those negative emotions; they’re always looking for the bright side and I think that’s because of the adversity we’ve always faced as a people; it’s that humour that’s really important. And you know, I never would have appreciated that unless we hadn’t been going through all this.

This ability to use humour in an otherwise stressful situation demonstrates the strength and resiliency of the family unit over time. Other caregivers spoke about personal strength and the need to be strong for their family members who were living with a condition. One co-researcher, who is a caregiver of a young child with a severe neurological condition, states:

The only person that I’m bending to, I thought in my mind was S—, and also in my mind I thought no matter how wrong this person’s being or the situation is. The worst thing already happened to me and that’s when S— was diagnosed. I felt like you can’t take anything away from me, you can’t hurt me, so in a way almost gave me strength. In addition to putting up a strong front for her family, the co-researcher also talked about focusing on the good because the ability to focus on the good in one’s life plays a tremendous role in keeping a positive attitude:

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So I feel like I’m at a point now where I can see and experience so much and that I have to just take myself out of there and just try to turn a blind cheek, but that’s nearly impossible for me to turn a blind cheek. So I just try to focus on the positive and the good. So that’s when I switched things and completely focused things on my son and S— .

Resiliency on the individual level was also seen throughout the narratives shared. One of our co-researchers, who lives with ataxia, told the research team what she did to keep her body, mind, and spirit active in response to the physical toll her condition was taking on her ability to be independent:

My sons are very helpful, they seem to really want to help, but I want to do it myself. My husband changed our shower to add a rail and a seat for me to sit on. I exercise every day—I was at risk for osteoporosis and now I have it, so I exercise daily. I walk on the treadmill every other day for 30 minutes, and every other day I do weights. I meditate for half an hour every day. I devour books, I still feel like I’m going to university—always studying and doing researching. I love jigsaw puzzles, the really challenging ones. They absorb my attention, I don’t want to just sit there and wallow in self-pity.

This narrative is important in that the co-researcher recognizes that she has a choice in how she lives her life in spite of her condition and the impacts it has on her mobility and her ability to be independent. In choosing to focus on what she can do, the co-researcher is taking steps to protect her health and well-being.

Conclusion: Moving Forward While colonization has shaped the experiences of many Aboriginal women with neurological conditions, it does not define them. Aboriginal women are strong and resilient, and they have much to offer society. The women we spoke with shared stories of strength and hope and had a vision for the future through incredible words of wisdom and advice for change. This is not to say that they did not and do not experience barriers on a daily basis. Their stories reveal severe hardship, and many of the issues they face are intricately linked to the colonial experience. Issues regarding racism, stereotyping, and discrimination are institutional and intimately linked to Canada’s history of colonization. Experiences regarding abuse and trauma are intergenerational in nature and also linked to colonization. A 2012 Health Council of Canada study documented widespread racism and stereotyping within the healthcare system and noted that many Aboriginal people do not seek treatment as a direct result:

It is well documented that many underlying factors negatively affect the health of Aboriginal people in Canada, including poverty and the intergenerational effects of colonization and residential schools. But one barrier to good health lies squarely in the lap of the health care system itself. Many Aboriginal people don’t trust—and therefore don’t use—mainstream health care services because they don’t feel safe from stereotyping and racism, and because the Western approach to health care can feel alienating and intimidating. (p. 4)

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These issues arose time and again throughout the experiences shared not only by Aboriginal women who had neurological conditions or were caregivers, but also by key informants, many of whom work within the healthcare system. The recommendations made by both those experiencing the healthcare system and those providing care in the healthcare system were around providing culturally safe care. Key informants spoke about institutional racism and stereotyping within the healthcare system and in medical school and to the need for more Indigenous-specific curricula and training given the growing health disparities between Aboriginal and non-Aboriginal people in Canada. Specific recommendations concerned more education and awareness training within medical schools and healthcare that focuses on cultural safety, where institutional racism and systemic barriers are addressed. This is where the personal biases and attitudes of healthcare providers are challenged as the providers undertake a process of self-reflection and examine the political and social structure within which they work (Aboriginal Nurses Association of Canada, 2009). The Canadian Nurses Association (Aboriginal Nurses Association of Canada, 2009) acknowledges that colonization has contributed to the ill health of Aboriginal people and that intergenerational and historic trauma transmission and the direct and contemporary effects of colonization are experienced by Aboriginal people. They acknowledge that part of enacting culturally safe care is for healthcare providers to understand the intergenerational cycle of abuse and the effects on Aboriginal people and families and realize that Aboriginal people have strength that they have drawn on to survive these traumas. In 2013 the Royal College of Physicians and Surgeons of Canada released a document aimed at advancing the new strategic plan of the college to improve the health status of Indigenous people (Royal College of Physicians and Surgeons of Canada, 2013a). The College also created the Indigenous Health Advisory Committee, comprising Indigenous health physicians, researchers, educators, and allies, to guide the College as it develops education policies and curricula and implements its strategic plan with the goal of improving Indigenous health and improving patient care. According to the Royal College of Physicians and Surgeons of Canada (2013b):

Physicians who apply critical thinking and self-reflection, within a context of social justice, are better equipped to practise cultural safety and deconstruct misinformation about indigenous health; they are more inclined to understand upstream factors (e.g., government policies, racism, historical legacies) and their connection to the downstream effects influencing the health and healing of populations at risk. (p. 2)

The College has made cultural safety education and training a strategic priority by framing it into its CanMEDS Intrinsic Roles (Royal College of Physicians and Surgeons of Canada, 2015). Since cultural safety exposes systemic health inequities, including racism and oppression, this connection of values and principles to CanMEDS facilitates transference into professional practice and should result in better patient care. Our co-researchers said that culturally safe care must be practiced; racism, discrimination, and stereotyping must cease; respectful communication and dialogue between patients and healthcare providers must occur; stigmatizing patients must stop; and healthcare providers must learn more about the Aboriginal people they are caring for. These recommendations were echoed in the 2012 Health Council of Canada report, which noted that, for some Aboriginal people, the Western healthcare system can “feel alienating

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Understanding the Intergenerational Effects of Colonization: Aboriginal Women with Neurological Conditions—Their Reality and Resilience • Carrie Bourassa, Melissa Blind, Devin Dietrich, Eric Oleson and providers can seem judgmental and arrogant” (p. 10). The authors stated that Aboriginal people “may have a heightened sensitivity to practices that are a routine part of hospital life” (p. 10). The report also highlighted that Aboriginal people have experienced trauma, including abuse in residential schools, and that healthcare providers must be aware of this in order to provide appropriate care. The recommendations made in the report point to the need for greater education and awareness for healthcare providers and suggest that healthcare providers must take this education and awareness a step further. They should be “encouraged to think about their own cultural beliefs and biases, their power and privilege” (p. 12) and how these influence their interactions with Aboriginal people. The report recommended that cultural safety be prioritized by health regions across the country. It is something that must happen. It is about institutional reform and commitment to creating safe environments for Aboriginal people that will require, the Health Council says, “a culture shift” (Health Council of Canada, 2012, p. 15).

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Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia • Henry G. Harder, Travis Holyk, Virginia L. Russell, Tammy Klassen-Ross Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia REVISED REFERENCES, 04/13/2016

Abstract This youth suicide prevention research project is an example of a partnership between Carrier Sekani Family Services (CSFS) and the University of Northern British Columbia (UNBC), funded by the Canadian Institutes of Health Research (CIHR), Institute of Aboriginal Peoples’ Health, that directly responds to goals of ethical research conducted in First Nations’ communities. Through the use of mixed methods, the project investigated the effectiveness of community-based interventions in preventing suicide and tracked youth self-esteem, depression, and other indicators over the course of the project. The knowledge gained from this research project will help guide CSFS and its member communities in offering programs and services that will assist in reducing incidence of suicide.

Keywords Community-based intervention, youth suicide, cultural continuity, First Nations, mental wellness, mental health, suicide prevention

Authors Henry George Harder is an Indigenous scholar at UNBC. He is a professor in the School of Health Services and a registered psychologist. He has been living on Lheidli T’enneh territory for the past 14 years and has been assisting CSFS in their research for the past 12 years. Travis Holyk is the executive director of Research, Primary Care, and Strategic Services at CSFS, where he has been since 2002. Holyk along with Darcy Dennis, member of the Lake Babine Nation and research manager for the youth suicide research project, developed and participated in all of the culture camps and canoe journeys with Carrier and Sekani youth conducted as part of the study. Virginia Russell is a scholar with Métis heritage and a doctoral student in the School of Health Sciences at UNBC. She was raised in northern BC and spent time living and working in the Tsay Keh Dene community. She has been on Lheidli T’enneh territory for the past 7 years. Tammy Klassen-Ross was raised in Vanderhoof, BC, on Saik’uz territory and has lived on Lheidli T’enneh territory for 8 years. She is a graduate of UNBC and is now an instructor in the School of Health Sciences. While we four have worked together on writing about this research, many others were also involved over the 6-year course of the work.

Acknowledgements The authors would like to acknowledge and thank the leadership of Carrier Sekani Family Services who conceptualized and supported this research. In particular we would like to acknowledge the great work, support, and generous spirit of the Elders and youth members of the Leadership Advisory Council without whom this work would not have been possible. Finally, we

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Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia • Henry G. Harder, Travis Holyk, Virginia L. Russell, Tammy Klassen-Ross would like to thank the Institute of Aboriginal Peoples Health - Canadian Institutes of Health Research for funding this work. Mussi Cho!

Introduction “I used to be so ashamed of being native and now I’m not … so yeah, it made me happy for who I am and where I come from.” (Participant 2)

Aboriginal1 Peoples’, and specifically First Nations’, health is deeply impacted by social determinants including those related to the impacts of colonization and its resultant intergenerational traumas (Hankivsky & Christoffersen, 2008; Marmot, Friel, Bell, Howeling, & Taylor, 2008). As a result, Aboriginal Peoples in Canada experience a unique set of mental health challenges (Loppie Reading & Wien, 2009). Mental illness and social issues such as substance abuse, addiction, and suicide are particularly high among Aboriginal Peoples (Royal Commission on Aboriginal Peoples, 1996). Post-traumatic stress disorder, substance misuse disorder, and depression and other mood disorders are common types of mental illness among Aboriginal Peoples, often associated with colonial trauma and the effects of residential school and/or the foster care system; these illnesses are also frequently misunderstood by the general population (Adelson, 2005; Aguiar & Halseth, 2015; Blackstock, 2011; Chansonneuve, 2005). Suicide rates among First Nations people in Canada are extraordinarily high in comparison to the general population (Chandler & Lalonde, 1998). These disparities are particularly evident for young First Nations men. For example, First Nations male youth (ages 15–24) have a suicide rate of 126 per 100,000, which is roughly 5 times the rate of non–First Nations youth. Similarly, young First Nations women have a suicide rate 7 times higher than non–First Nations women. Suicide and self-inflicted injuries are a leading cause of death for Canadian First Nations youth and young adults (Health Canada, 2010). The Mental Health Commission of Canada (2012) outlines the importance of cultural competence and safety as well as the integration of traditional knowledge, customs, and practices when addressing mental health problems for Aboriginal Peoples. The commission further stresses the substantial role that the intergenerational and vicarious nature of trauma plays when addressing community wellness (Mental Health Commission of Canada, 2012). The Carrier Sekani First Nations of northern British Columbia (BC), Canada, have their own institutions for maintaining language, governance, health, and knowledge related to all aspects of life. Carrier legal systems, such as the bah’lats, are situated to address governance of knowledge generated from within their communities and provide mechanisms for the protection of individual and community knowledge. The suicide prevention research project described in this paper promoted Carrier systems as the core intervention strategies, including the development of a community-led suicide intervention resource manual based on Carrier values and the creation and provision of what became known as “culture camps.” Background This project represents the ongoing partnership between Carrier Sekani Family Services (CSFS), an organization responsible for health, social, legal, and research services for 11

1 The term Aboriginal refers to persons who self-identify as First Nations (North American Indian), Métis, or Inuit and/or are treaty or registered Indians as defined by the Indian Act of Canada (1867) and/or are members of an Indian band or First Nation (Statistics Canada, 2011).

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Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia • Henry G. Harder, Travis Holyk, Virginia L. Russell, Tammy Klassen-Ross member First Nations organizations, and the University of Northern BC (UNBC). As much as the research, funded by Canadian Institutes of Health Research (CIHR), was about addressing suicide, it was also about building capacity of nations to define the issue of suicide through their lens and to develop community-specific interventions. Carrier and Sekani people maintain that they have an inherent Aboriginal right to be self-determining, which includes the ability to use Carrier and Sekani institutions in maintaining social order in their communities (Holyk, Shawana, & Adam, 2005). Assuming responsibility for the care and protection of children, as well as the maintenance of family structures and governance systems, is an expression of self- determination that was supported by the research team both in the manner the research was carried out and the structure of the team. The connection to community was developed through such measures as the establishment of a Leadership Advisory Council (LAC), consisting of Elder and youth representatives from each of the 11 communities who guided the research and intervention each step of the way, resulting in the continuity of interventions as well as relationships with community members. Bringing Western and Indigenous ways of knowing together has been and continues to be a struggle, and we are actively engaged in that struggle. As a research team focused on Indigenous issues, comprising Indigenous and non-Indigenous persons, we are committed to placing Indigenous epistemology and ontology at the core of our work. The province of BC is home to 203 First Nations groups, the highest number of nations in comparison to all other provinces and territories in Canada. Aboriginal people in BC represent approximately 5.4% of the total population, with the highest number residing in the northern part of the province (Statistics Canada, 2015). Even within the many First Nations in BC, there are further language and cultural groupings with diversity even among sub-groups. This is reflected within the Carrier and Sekani nations, where there are distinct groupings that maintain geographic, cultural, and linguistic variation. According to Carrier linguists and community members, there are six distinct Carrier linguistic dialects: Babine, Cheslatta, Nakazd’li, Saik’uz, Lheidli T’enneh, and Wet’suwet’en. Much like diversity in language, there are important nuances in the Carrier clan structure and bah’lats system. In 1990, in response to the social and health challenges facing First Nations and as a way to re-establish control over health and social systems, 11 Carrier and Sekani nations formed the organization presently named Carrier Sekani Family Services. CSFS has worked hard to reassert control in areas that have been sources of attack on community values and teachings, such as maintenance of Carrier governance systems, community wellness, and preservation of family and guardianship of children. The key governance structure among the Carrier Sekani people is the potlatch or bah’lats system. Bah’lats are organized around a clan system and are the core cultural, economic, political, social, legal, and spiritual institution of the Carrier Sekani people. While protocols are flexible and adaptive to the differing systems of each community, the guiding principles of the bah’lats system are shared among the communities (Holyk, Shawana, & Adam, 2005). The bah’lats is inclusive of all members of the nation with all members belonging to a clan. There are four primary clans, Bear, Caribou, Frog, and Beaver, each with several sub-clans. Generally, there is one head clansman for each primary clan, and a hereditary chief who holds rank in the bah’lats as a wing chief represents each sub-clan. These positions are passed down through family or clan lineages as well as resulting from selections guided by clan Elders. As with many First Nations communities, leaders express concerns about the disconnect between elders and youth and the impacts it has on Carrier Sekani society.

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BC Aboriginal populations are, on average, younger than all other ethnicities, with a median age of 29 compared to 42 in the general society (BC Statistics, 2013). Similar to provincial population statistics, one quarter of the population on reserve represented by CSFS are youth aged 13–25 years.

Table 1 Total and Youth Population on Reserve by CSFS Community Community Name Total Population Youth (Ages 13–25) Saik’uz (Stoney Creek) 437 116 Wet’suwet’en 97 24 Burns Lake Band 48 0 Cheslatta 166 36 Nadleh Whut’en (Nautley) 240 59 Stellat’en (Stellaquo) 219 50 Takla Lake 401 114 Skin Tyee 59 10 Yekochee 102 24 Nee Tahi Buhn 56 22 Lake Babine Nation 1447 379 Source: Aboriginal Affairs and Northern Development Canada, 2012

Research Methodologies and Methods This project employed a mixed-methods approach. Quantitative data gathered from questionnaires (pre- and post-intervention) were entered into and analyzed using a statistical analysis program In addition to quantitative questionnaires, the research team completed qualitative interviews with the majority of youth participants as well as elders and leadership. Once the project was complete in 2013, the qualitative data were coded and analyzed. For the interviews the analysis followed a thematic analysis approach (Braun & Clarke, 2006). The thematic analysis of the interview data was informed by interpretive phenomenology (Lopez & Willis, 2004) and decolonizing and critical Indigenous methodologies (Battiste, Bell, & Findlay, 2002; Denzin, Lincoln, & Smith, 2008; Smith, 2012). The overall project was completed using community-based participatory approaches (Brown, 1991; Israel, Schulz, Parker, & Becker, 1998). In keeping with the principles of participatory research, the project began in December 2006 with a community consultation meeting with the goal of seeking input around issues related to youth suicide in community and to begin a process of selecting individuals who would be able to assist in developing the research project. The research team provided invitations to Chief and Council to recommend participants from groupings of youth, Elders, and traditional knowledge holders to attend the consultation meeting. A total of 68 community members participated in the meeting, one half of whom were youth. Key messages that formed the foundation of the project included: • Culture is a key to addressing healing. • Drug and alcohol abuse must be addressed. • Physical, sexual, mental, and emotional abuse are significant factors.

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• There is a disconnect between elders and youth due to child apprehensions and residential school. • There is a lack of healthy activities for youth in community. Stemming from the meeting, a LAC with one Elder and one youth representative chosen by and from each participating community was formed to provide project guidance. Community leaders as well as the LAC were involved in all aspects of the project from design to dissemination. The research team also included members of nations who participated in the camps and youth suicide manual training and who assisted with administering the questionnaires, data entry, and dissemination. Participants took part in events such as culture camps and helped develop and implement a youth suicide prevention manual, measures that were determined by the LAC to be means of addressing the key messages. These materials are available to all member nations. Beginning in 2007, youth between the ages of 13 and 25 were recruited to this study from communities served by CSFS based on the recommendation of community leaders, the LAC, and individuals on the research team. Standardized measures inquiring about depression status, suicide ideation, and self-esteem were administered to youth prior to and upon the completion of the cultural event. For the standardized tests, youth were tested the first day of camp and either the day they left camp or the night before they left. Interviews and focus groups with youth and communities were also used to better understand if and how engagement in these activities improved participants’ understanding of their traditional culture, overall well-being, and ability to form a more comprehensive picture of their collective experiences. The findings from the qualitative data were reviewed and their interpretation agreed upon by the LAC. The LAC played an instrumental role in the development of the suicide awareness and prevention manual entitled Nges Siy (I love you). After a great deal of discussion, examination of other traditions, and consultation the LAC decided that the training and resulting manual should be organized around eight strong Carrier Sekani values: Respect, Compassion, Wisdom, Responsibility, Caring, Sharing, Harmony, and Balance. These values were interwoven into intervention materials. Members of the LAC participated in interviews as part of the manual’s development and also met to provide feedback on each draft of the manual.

Measures All participants in this research study gave written consent to be involved in the study, including the assessment process. Consent was obtained before every separate assessment occasion. In the case of minors, consent was obtained from the parent or guardian. After a thorough and extensive search for Indigenous measures, it was decided to use the following, most widely accepted assessment measures. These measures are not Indigenous, and this is a major limitation of this study. There is a clearly demonstrated need for more appropriate instruments and/or assessment procedures to be developed and accepted. • The Beck Depression Inventory-II (BDI-II) is a 21-item self-report inventory that assesses the presence of symptoms associated with depression. Participants were asked to indicate the degree of each symptom as it applies to them on a 4-point Likert-type scale from not present (0) to severe (3) (Beck, Steer, & Brown, 1996). • The Beck Scale for Suicide Ideation is a 21-item self-report instrument for assessing and monitoring suicide risk. The scale is divided into three sections: 1) attitudes toward living and dying, 2) suicidal ideation and anticipated reactions to those thoughts, and 3) previous suicide attempts and seriousness of intent (Beck & Steer, 1991).

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• Developed from the BDI-II, the Beck Hopelessness Scale (BHS) is a 20-item self-report instrument used to assess hopelessness, particularly in relation to suicide risk. The three major aspects measured with this instrument include feelings about the future, loss of motivation, and expectations (Beck & Steer, 1988). • The Rosenberg Self-Esteem Scale is one of the most commonly used self-esteem measures in social science research. The 10-item scale measures global self-worth, examining positive and negative feelings about the self. Items are answered on a 4-point Likert scale ranging from strongly disagree (4) to strongly agree (1) (Rosenberg, 1965).

Results and Discussion Participants A total of 130 youth (62 males and 68 females) from Carrier Sekani communities, with an average age of 14.85 years (SD = 1.88), participated in nine separate cultural camps (see Table 2); many youth participated in more than one camp. Activities within these camps focused on traditional food gathering techniques, language, survival techniques, clan affiliation, and the bah’lats system.

Table 2 Number of Youth per Cultural Activity Camp Date Males Females Total Summer 2007 7 5 12 Winter 2008 6 4 10 Summer 2008 7 7 14 Winter 2009 8 13 21 Summer 2009 7 13 20 Winter 2010 2 8 10 Summer 2011 7 0 7 Summer 2012 11 9 20

Quantitative Results To determine if youth participation in culturally appropriate activities would reduce levels of depression, hopelessness, and suicide ideation and increase levels of self-esteem, four separate one-tailed paired sample t tests were conducted on the Beck Depression Inventory, Beck Hopelessness Scale, Beck Suicide Scale, and the Rosenberg Self-Esteem Scale (see Table 3 for means and standard deviations). Results indicated that levels of depression, t(109) = 4.00, M = 2.55 (SD = 6.69), p < .01; levels of hopelessness, t(118) = 2.71, M = 0.91 (SD = 3.65), p < .01; and levels of suicide ideation, t(116) = 3.06, M = 1.15, (SD = 4.08), p < .01 significantly decreased after youth participated in culturally appropriate activities. Furthermore, results indicated that levels of self-esteem significantly increased after the youth participated in culturally appropriate activities t(116) = –3.02, M = –1.36 (SD = 4.87), p < .01. These results indicate that prior to engaging in culturally appropriate camps, youth self-reported higher levels of depression, hopelessness, and suicide ideation than when they left camp; furthermore, youth self-reported higher levels of self-esteem after they engaged in the culturally appropriate camps than when they arrived at camp.

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Table 3 Means and Standard Deviations for Standardized Measures Measure Pre-Camp Post-Camp Mean SD Mean SD Beck Depression 10.04 12.46 7.48 11.98 Inventory Beck 4.09 3.95 3.18 3.02 Hopelessness Scale Beck Suicide 2.38 4.71 1.23 3.62 Scale Rosenberg Self- 20.56 5.76 21.91 5.63 Esteem Scale

To further determine if cultural activities increased youths’ level of identification and knowledge of their traditional culture, a survey was administered upon the conclusion of the activities. Of the 130 total youth who participated in the activities, 58 youth completed the survey. Frequency analysis indicated that 87% of the youth felt their knowledge of the Carrier language had improved, 96% indicated their knowledge of their traditional culture had improved, 92% indicated their connection to the community Elders had improved, and 90% indicated that their opinion of themselves had improved. In regards to risk-taking behaviours, frequency analysis indicated 55% of youth had a reduced desire to drink alcohol and 58% of youth had a reduced desire to take illegal drugs.

Qualitative Data Analysis of the interview and focus group data eventually coalesced around three themes.

Cultural awareness, connection, and identity. “After the camp I felt very good, like I learned more about what culture is and who I actually am.” (Participant 3)

In the context of suicide prevention, increased cultural awareness and connectivity can serve as extraordinarily important protective factors (Chandler & Lalonde, 1998). In our results, both qualitative and quantitative data sets demonstrated that participants experienced increased awareness about and connectivity with their culture, customs, and practices as a direct result of attending and engaging in the culture camps. Participants made reference to various activities and practices that were culturally specific and culturally significant. Many participants spoke of how hearing and learning more about their culture and background added to their sense of belonging and identity. Some participants even went as far as to state that their sense of pride in themselves and their heritage and culture increased as a result of engaging in the project. For example, when speaking about the camp experience a participant said: “I was happy that I got to learn who I was as an Aboriginal youth. I used to be so ashamed of being native and now I’m not … so yeah, it made me happy for who I am and where I come from” (Participant 2). Youth gained stronger connections with elders and culture and reported that this new-found awareness had a positive impact on their sense of identity. When asked about elder connections, Participant

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10 said, “[Grandmothers] are something really close to our culture and to have that, to feel it, that unconditional love, is the most powerful thing in the world.” Having a sense of belonging to or being part of their culture appeared to be important in that it helped participants feel they were part of something bigger than themselves; that they now “belonged” to a larger group, had a more defined place in society, a particular ancestry, history, heritage, which in turn helped the participants see themselves as more than just an individual. Participants made reference to their exposure to and learning about their culture, including: learning and speaking their language; engaging in “traditional” maintenance activities and practices such as catching, gutting, and smoking fish; cultural celebrations such as singing, drumming, and dancing; and gatherings such as potlatches. Youth felt activities were useful in increasing knowledge of traditional culture. There was a reported improvement in traditional language and enhanced relationships between elders and youth as a direct result of being involved in the project.

Self-awareness, enhancement, and discovery. This theme is concerned with how, according to the participants, engaging and participating in culture camp added new layers of meaning to their lives. Participants made reference to experiences of self-awareness, enhancement, and discovery. They spoke of how culture camp helped them redefine themselves, their identity, and their place in the world. Participants also pointed out how in discovering more about themselves, their sense of self- esteem was increased, for example: “Prior to camp, I didn’t really feel that good about myself. Once I started going to camp, I began to feel very good about myself” (Participant 3). Some participants went as far as to say that being at culture camp at times felt like their home, or rather being at home. Clearly, culture camp was for some participants a place of safety, a place of grounding, as it provided an increased sense of well-being. There were also references made to the new, cultural, and fun activities which served as adding meaning to participants’ lives, giving them purpose and connectedness. While talking about becoming involved with the drumming group through culture camp, a youth said, “Friends are complimenting me on stuff [drumming] … I’m hearing all these good comments and it’s making me feel better about myself” (Participant 9). Participants referred to their growth and movement away from “childish” attitudes and reactions; for example a youth said that “after the camp I realized you have to give back for what you took and give thanks” (Participant 5).

Attitudinal, behavioural, and developmental changes. This theme is concerned with how engaging and participating in culture camp had an effect on the youth’s attitudes and behaviours regarding substance misuse and, more broadly, experiences of positive personal growth, development, and maturity. In regards to risk-taking behaviours, more than half of the youth indicated a reduced desire to drink alcohol and a reduced desire to take illegal drugs following camp. It should be acknowledged that the evidence pertaining to decreased substance use was not rich, as it was for our other themes; nevertheless, some participants made reference to how they learned new perspectives on drug and/or alcohol misuse or abuse as a direct result of listening to information provided during the camps. Participants made reference to how their views and behaviours were informed as a result of listening to the (often chilling) testimonies of recovering substance abusers. This real-world testimony appeared to be particularly compelling, given who was informing the participants (e.g., senior and influential figures in the cultural community); these individuals were described

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Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia • Henry G. Harder, Travis Holyk, Virginia L. Russell, Tammy Klassen-Ross as highly respected or “looked up to” by the youth. Some participants reported feeling hopeful they could become an integral and senior member of the cultural community (similar to the leaders) despite having a background or history of substance misuse. Drinking—at times to excess—was not an uncommonly reported experience for some of the participants; in fact, substance use/misuse was seen as “ok,” “acceptable,” and even “cool” and a normal part of being a grown-up member in community. However, following culture camps, youth reported feeling challenged and impacted by the leaders (counsellors and elders) and their stories. Participant 2 described the experience of camps by saying, “… if I hadn’t done any of the camps, I would probably have ended up going down the wrong path.” Participants made reference to activities and practices which were culturally specific and culturally significant and how they learned a great deal and grew as a result: not only learning about their culture and background, but also learning more about themselves. Personal growth, positive development, self-awareness, and identity were all commonly related to the acquirement of new skills (e.g., drumming; drying meat) and connections made (e.g., elders; cultural activities). Youth spoke about a number of unexpected developments including feeling more confident and less shy, being able to apply for paying jobs, changing their views and opinions about themselves, and inevitably moving from more negative and limiting views to more positive and encouraging views of self. A participant who attended five camps spoke about the positive impact and experiences directly related to the skills learned and relationships made, saying, “I would always be really sad to leave … I thought it was better to do everything off the land and not have electronics … just traditional music and that’s it. I learned about my traditions … fishing, medicines, music, language, canning, smoking … you all have responsibilities that you have to get done by the end of the day … and now I feel like, I don’t know, I feel like I’m a role model to other kids now” (Participant 5).

Challenges and Opportunities Chapter 9 of the Tri-Council Policy Statement on research ethics (TCPS2, 2014) is clear on the need to consult with Aboriginal communities prior to beginning any research study. Such consultation is meant to be meaningful and not cursory. Conducting such consultation with geographically widespread groups in northern British Columbia was a large challenge. People travelled great distances on bad roads in all kinds of weather to participate in the consultation, and their insights and wisdom were invaluable. The cost of such consultation was significant and involved a major part of our budget and thus would be difficult to replicate without a significant financial contribution. Indigenous research methodologies require that benefits accrue to the Indigenous communities participating in the research. As a research team we were determined that this should happen. However, this concept is difficult for tri-council funding agencies, such as CIHR, to accept as they are vested in Western approaches to research. This tension was evident throughout the study. However, in the end we believe that both the communities and the academy at large benefited from these efforts. During the period of this study and directly associated with the methods employed, community support for the research and understanding of suicide prevention grew in each of the communities. Due to many competing factors such as meeting the needs of their home communities, it was a challenge to have Carrier First Nation members of the research team continue on to graduate school as proposed in the study design, but the project increased their knowledge of Western academic research theories and methods and several have now taken on substantial leadership roles in their communities. As part of the knowledge exchange, non-Carrier members of the research team grew in their knowledge and

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Nges Siy (I love you): A Community-Based Youth Suicide Intervention in Northern British Columbia • Henry G. Harder, Travis Holyk, Virginia L. Russell, Tammy Klassen-Ross understanding of Carrier Sekani practice as well as Indigenous research methodologies. This coming together of local community members with the academic community was a strength of this study. There is a tendency in Canada to lump all Indigenous people into one category and apply a one-size-fits-all solution to whatever problem is being addressed. This is evident when phrases like “an epidemic of Aboriginal teen suicide” are used to describe the issues or even using the term “culturally appropriate” within diverse communities. Some Indigenous communities have serious and tragic issues with suicide, while others have limited or no encounters with suicide. It seems grossly unfair to lump all into one category, especially when this results in one type of intervention that is employed to “solve” the problem. In the case of suicide prevention, Western approaches are “indigenized” and heralded as the solution to the problem. In fact, such approaches are worse than nothing. They foster colonization and the power of the dominant culture, in that they do not recognize the worldview of the particular Indigenous culture. Interventions, including suicide prevention for Indigenous Peoples, must be based on Indigenous epistemology and ontology if they are to be effective.

Conclusions Culturally appropriate and culturally specific interventions can be created that have an impact on reducing adolescent Aboriginal suicide. By fostering good mental health and wellness, including pride in who one is and where one is from, leading indicators of suicide risk can be influenced in such a way that the person affected is less likely to make an attempt at suicide. Interventions must be designed uniquely for each community, and a pan-Indigenous approach must not be used. Such an approach takes time and commitment, but canned quick-fix interventions will not adequately address the root causes of suicidality that originate in historical trauma and the sequelae of colonization. Wellness of communities must take a holistic approach and absolutely must address all aspects of wellness, including health and wealth. Chandler and Lalonde (1998) argued that cultural continuity and self-governance are a hedge, a preventative protectant, against suicide. We would add that it is hope for the future and how one fits into that future, while understanding and accepting one’s own culture, that is a determinant of Indigenous community wellness and that this is the true mitigator of Aboriginal youth suicide.

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment REVISED REFERENCES, 04/13/2016

Abstract Indigenous persons suffer from among the highest rates of chronic pain in the United States. Using a relationship-centered medical decision-making framework, this study sought to examine the influence of Indigenous racial concordance and patient ethnic salience on providers’ assessment of pain. From May to October 2010, pre-identified healthcare providers working exclusively with Indigenous patients in the United States were randomly assigned an online clinical case vignette presenting an Indigenous patient reporting chronic lower back pain. A 2 × 2 analysis of variance, between-subjects design, was conducted with the predictor variables racial concordance and patient ethnic salience on the outcome measure of providers’ ratings of patient’s pain on a visual analogue scale. We found a significant interactional effect between racial concordance and patient ethnic salience on providers’ pain assessment ratings. Indigenous providers tended to rate the patient with higher Indigenous ethnic salience more congruently with the self-reported pain ratings, perhaps due to perceived similarities and lowered unconscious bias. This is the first known study to examine racial concordance of the healthcare provider and ethnic salience of the patient in pain care. This study informs healthcare provider practice and consideration of patients’ racial/cultural attributes and possible influence on assessment bias, which may be particularly relevant among Indigenous patients. More research is needed to identify specific interventions to improve cultural awareness and sensitivity for Indigenous persons who suffer from pain. Keywords Indigenous health, pain, pain disparities, patient–provider relationship, racial concordance, patient ethnic salience, American Indian health, pain assessment, medical decision-making

Authors Michelle Johnson-Jennings, PhD, (Choctaw Nation tribal member)—founding director of the Research for Indigenous Community Health (RICH) Center, Associate to the Dean for Indigenous Health, assistant professor, and License Eligible clinical health psychologist at the University of Minnesota—served as first author in developing the research design, implementing the project, and writing the manuscript. Wassim Tarraf, PhD, assistant professor, Wayne State University, served as statistical consultant and edited the manuscript. Hector M. González, PhD, associate professor, Michigan State University, served as senior author, offering guidance during the research design and editing the manuscript.

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Acknowledgments Gratitude and appreciation are extended to the Indian Health Services and medical health providers who served as the medical panel of experts for this study; to the Indigenous community member panel; and to Dr. Bruce Wampold and committee members at University of Wisconsin–Madison for their guidance. This work was supported by the National Institutes of Health, National Institute of Mental Health, National Centers on Research Resources, IDEA Network Biomedical Research Excellence (P20 RR16455), National Institute of Mental Health (MH 084994 – HMG) and National Heart Lung Blood Institute (HC 65233 – HMG), NIH Native American Research Consortium on Health (NARCH) Great Lakes Intertribal Consortium Intern Funding, NIH IHART grant, and Amy Hunter Wilson Dissertation Fellowship.

Introduction American Indian Alaska Natives, or as herein referred to, Indigenous populations, experience significantly higher chronic pain rates than other U.S. racial groups (Jimenez, Garroutte, Kundu, Morales, & Buchwald, 2011; Wilson et al., 2011). Pain disparities in Indigenous populations may stem from their shared history of oppression and systemic discrimination, which subsequently set a path toward health disparities for present generations (Evans-Campbell, 2008; Sotero, 2006; Yellow Horse Brave Heart, 2003). This deliberate, prolonged mass trauma inflicted on Indigenous peoples and others is commonly referred to as historical trauma and results in social, environmental, and psychological responses that are transmitted intergenerationally (Sotero, 2006). Not only has historical trauma disrupted Indigenous healing practices and lowered well-being, it further appears to intensify the effects of lifespan traumas leading to increased stress and stress syndromes, which have been associated with higher reports of pain (Anderberg, 1999; Buchwald et al., 2005; Gatchel, Peng, Peters, Fuchs, & Turk, 2007). Given these intergenerational effects, it is not surprising that Indigenous groups presently seek pain treatment more often than other U.S. races (Deyo, Mirza, & Martin, 2006). However, systemic barriers within Western medicine may interfere with receiving effective pain care. Systemic Discrimination Healthcare delivery discrimination and cultural differences can contribute to health disparities, such as with pain (Indian Health Service [IHS], 2013). During medical office visits, Indigenous patients have reported higher rates of healthcare discrimination as compared to Whites1 (Euro-Americans), Blacks (Afro-Caribbean Americans), and Asians (Asian-Americans) (Johansson, Jacobsen, & Buchwald, 2006). Given that racial discrimination can serve as a mechanism for increased stress, and that stress increases pain rates, racial discrimination significantly correlates with higher rates of pain impairment among Indigenous groups (Chae & Walters, 2009; Johnson-Jennings, Belcourt, Town, Walls, & Walters, 2014; Walters et al., 2013). Hence, Indigenous patients seeking pain care may leave a healthcare setting in more pain than when they arrived, as found by Miner, Biros, Trainor, Hubbard, and Beltram (2006).

1 While these are ambiguous and disjointed concepts, the racial/ethnic titles are created within the history of the US, used presently, and influence our social structure today. Each group serves as a proxy for cultural background and is used in medical clinics and on forms.

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González The nature of pain assessment may further introduce systemic biases. The extant research suggests that providers tend to assess Indigenous patients’ pain as lower than that of other U.S. racial groups (Jimenez et al., 2011; Tait, Chibnall, & Kalauokalani, 2009). Some providers are more likely to dismiss Indigenous patients’ reported pain levels or see them as overreporting their pain compared to patients from other racial groups (Bernabei et al., 1998; Miner et al., 2006). This dismissal may arise from providers struggling with the idiopathic nature of pain and attempting to categorize pain through an objective lens. However, pain is a subjectively experienced phenomenon that is culturally bound and varies cross-culturally in assigning of meaning, coping styles, and expressions of pain (Callister, 2003). Therefore, attempting to use an objective lens to assess another person’s pain may dismiss cultural nuances and related barriers. The providers’ pain assessments then affect their medical decision-making, and if inaccurate, patient health outcomes are likely to suffer (Miner et al., 2006). Hence, provider pain assessment for Indigenous patients requires consideration of multiple, interacting factors in the healing relationship, including cultural barriers and often hidden, unconscious biases.

Relationship Barriers in Pain Assessment The extant literature suggests that cultural barriers in communication impede the patient– provider relationship and subsequently reduce effective pain care among Indigenous populations (Jimenez et al., 2011). Given that pain is culturally experienced and communicated (Callister, 2003; Carlsson, 1983; Cintron & Morrison, 2006; Crowley-Matoka, Saha, Dobscha, & Burgess, 2009; Gatchel et al., 2007), cultural differences between providers and patients may interfere with understanding patients’ pain symptoms. While Western medicine distinguishes between physical and mental pain, some Indigenous patients may communicate pain as a function of mind, body, spirit, and social relationships (Pelusi & Krebs, 2005; Sobralske & Katz, 2005). Additionally, some Indigenous women have reported not discussing their pain due to blocking; that is, choosing not to verbally recognize the pain in fear that speaking of it will cause it to remain (Struthers, Savik, & Hodge, 2004). In this case, the women expected the provider to have enough empathy to recognize and assess pain levels through nonverbal communication. Meanwhile, providers may remain unaware of nonverbal cues and miss culturally bound pain symptoms. Providers may also possibly misunderstand stoicism, or restrained physical expressions of pain, among Indigenous patients and consequently underreport their patient’s pain (Bernabei et al., 1998). On the other hand, providers who are familiar with varying Indigenous cultural groups, tribes, and languages may be more effective in assessing nonverbally communicated pain, as compared to those providers who are unfamiliar. Therefore, cultural differences between the patients and provider may create challenges in patient–provider interactions (Burgess, van Ryn, Crowley-Matoka, & Malat, 2006; Cooper, Beach, Johnson, & Inui, 2006; Laveist & Nuru-Jeter, 2002). If not adequately addressed, these challenges can create cross-cultural, diagnostic, and therapeutic difficulties (van Ryn & Burke, 2000) in pain care and the overall healing relationship. Relationship-Centered Medical Decision-Making Framework We propose a relationship-centered decision-making framework for assessing pain in Indigenous populations (see Figure 1), a framework anchored in social-cognitive theory and previous medical decision-making research (Burgess et al., 2006; Deyo, Mirza, Turner, & Martin, 2009; McCarberg, Nicholson, Todd, Palmer, & Penles, 2008; Tait et al., 2009).

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Figure 1. Relationship-centered medical decision-making framework

This framework explains how healthcare providers may experience cognitive dissonance, stress, or fatigue, which then increases their likelihood to rely on preformed, unconscious beliefs to make sense of complex cross-cultural clinical encounters. As considered in this framework, the etiologic ambiguity of chronic pain and perceived patient–provider racial differences, including cultural and linguistic differences, are likely to contribute to increased stress and cognitive dissonance for the healthcare provider and patient. Under such stress, a provider might unknowingly rely on preformed beliefs, such as racial stereotypes (Bonham, 2001; Burgess, Fu, & van Ryn, 2004; Burgess Phelan, et al., 2014; Burgess et al., 2006; Gatchel et al., 2007; Tait et al., 2009; van Ryn & Burke, 2000). At this point, preconceived or unconscious views of Indigenous persons, or stereotypes, are often based on the media (King, 2013). If uninformed regarding tribal cultures, providers may unknowingly dismiss culturally bound pain expressions and rely on preformed stereotypes. Given the provider would likely be unaware of this unconscious action, he or she would be less able to refute unconscious biases, unless trained otherwise (Burgess et al., 2008; Burgess et al., 2004; van Ryn & Burke, 2000). Furthermore, because race is defined as a historical, sociopolitical construct between groups that are often identified via physical appearance and ethnicity, race may serve as a proxy for an individual’s cultural, national, and political affiliations (Ezenwa & Fleming, 2012). The Institute of Medicine suggests that if providers are influenced by unconscious biases, they may ignore relevant patient characteristics that are unrelated to race and could subsequently act on biased medical decision- making, particularly in assessing pain (Smedley, Stith, & Nelson, 2003). Though the Institute of Medicine described unconscious bias as different from direct racism or prejudice in intentionality and awareness, it nonetheless has a potentially large influence on pain care (Smedley et al., 2003).

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Solutions for Unconscious Bias: Racial Concordance The Institute of Medicine (Smedley et al., 2003) and several healthcare entities (American Medical Association, 2003; Cone, Richardson, Todd, Betancourt, & Lowe, 2003; U.S. Commission on Civil Rights, 2004) have argued that racial concordance (i.e., when patient and provider self-report the same race) could reduce healthcare inequities through increasing familiarity, positive communication, and overall quality of care (Saha, Komaromy, Koepsell, & Bindman, 1999; Street, O’Malley, Cooper, & Haidet, 2008). However, research is inconclusive about the influence of racial concordance on medical decision-making and patient-health outcomes (Meghani et al., 2009). Many racial concordance studies have focused on Black and Latino populations and have not included Indigenous persons (Saha, Arbelaez, & Cooper, 2003). While racial concordance has been associated with perceived ethnic and cultural similarity (Bonham, 2001), we propose that a patient’s ethnic salience may vary from the patient’s self-reported race. We define patient ethnic salience as the provider’s perception of a patient’s degree or intensity of ethnic and cultural affiliation that is relevant to the exam room, applying the psychological definition of ethnic salience (Phinney & Ong, 2007). A provider may perceive two Indigenous patients quite differently based on their perception of the patient’s ethnicity, especially since many Indigenous patients differ in appearance and cultural affiliation depending on the tribe, region, and personal factors. Though individual Indigenous patients may share more or less of the provider’s cultural health beliefs regardless of their appearance, the provider’s perceptions of a patient’s ethnic salience may influence the provider’s communication and sense of cultural similarity. Thus, patient ethnic salience may influence provider pain assessment more than race alone. Overall, despite the high disease burden of pain among Indigenous groups, research including pain assessment and providers’ perceptions among Indigenous patients has been neglected (Jimenez et al., 2011). Such research is needed because underestimation of patients’ pain could decrease effective pain care (Green et al., 2003; Jimenez et al., 2011; Tait et al., 2009). However, a paucity of research exists for the influence of racial concordance and patient ethnic salience on pain assessment. In this study, as guided by the relationship-centered decision- making framework, we examined both patient–provider racial concordance and patient ethnic salience associations with pain assessment. We predicted, first, that under conditions of patient- provider racial concordance, a provider’s pain assessment would be more similar to the patient’s self-report (i.e., indicating a severe pain rating), regardless of patient ethnic salience. Second, we expected that high patient ethnic salience would be associated with lower provider pain ratings, regardless of racial concordance. Last, we expected that the combinations of racial concordance/ high patient ethnic salience and no racial concordance/ low patient ethnic salience would increase pain ratings to similar to the patient’s self-report of severe.

Methods To test our expectations in regards to how racial concordance and patient ethnic salience relate to providers’ pain assessment, we used two secure, online case vignettes about an Indigenous patient with severe pain complaints. Patient Ethnic Salience Both vignettes presented the same fictitious medical record and narrative for a new Indigenous patient. Patient Aki Turtlebear’s name and image were designed to portray high Indigenous ethnic salience, and patient Bob Smith’s name and image were designed to portray

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González low Indigenous ethnic salience. Both digitally manipulated images were created from the same photo of an Indigenous male actor whose face is partially obscured (Figure 2).

Aki Turtlebear Bob Smith

Figure 2. Photographs of Indigenous patients with high (left) and low ethnic salience Pilot testing of patient ethnic salience. A panel of Indigenous and non-Indigenous social science researchers and community members (n = 10) confirmed the validity of ethnic salience for each photograph (Figure 2) posted online with names, by rating them from 1 (definitely not appearing Indigenous) to 5 (appearing definitely Indigenous). The high ethnic salience photo scored a mean of 4.3 out of 5, and the low salience photo scored a mean 1.5 out of 5.

Clinical Case Description The case description followed the United States Preventive Services Task Force (Chou et al., 2007) clinical guidelines for nonspecific chronic lower-back pain management. It included the patient’s gender, marital status, occupation, age, audio and text versions of a patient

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González narrative, and a medical chart. The medical chart displayed the patient’s present pain as 9 out of 10 on a visual analogue scale (VAS), and for the previous three months varying between a 9 and 10 with concomitant occupational and social interference. Pilot testing of clinical vignette. The two vignettes were pilot tested by a team of primary care medical experts that included a convenience sample of eight physicians (four Indigenous and four non-Indigenous) in various specialties (i.e., family practice, internal medicine, and pediatrics). Based on the experts’ feedback, the simulated patient’s symptoms and medical history were manipulated reflecting a consensually agreed upon presentation of severe, chronic lower-back pain.

Study Participants G*Power software (Faul, Erfelder, Lang, & Buchner, 2007) computation required a sample size of 88 to detect a moderate effect size of 0.67, with a critical F (1, 85) = 3.95 (Cohen, 1977). IRB approval from UW-Madison and the national federal Indian Health Service (IHS) was received. From May to October 2010, healthcare providers (i.e., physicians, nurse practitioners, and physician assistants) who work exclusively with Indigenous patients were recruited in IHS service facilities across the United States, including 15 IHS hospitals, 221 health centers, 34 urban clinics, and 176 Alaska village clinics (Wilson et al., 2011). To help maximize anonymity and expand the study’s geographic range of provider representation, IHS headquarters sent a recruitment email to district chief medical officers, who asked clinical directors to forward the message to providers. In all, 145 providers completed questionnaires, and 109 completed the pain assessment questions (Table 1). Table 1 Demographics for Health Care Providers Working in Indian Health Service Facilities, Responding to an Online Clinical Case Vignette Questionnaire on Provider Assessment and Treatment of Chronic Pain Racially non-concordant Racially concordant Total n % n % N % Medical Provider Status Physician’s assistant 4 3.6 2 6.1 6 4.1 Nurse practitioner 19 17.0 2 6.1 21 14.5 Medical doctor (MD, DO) 82 73.2 25 75.8 107 73.8 Student, other 7 6.3 4 12.1 11 7.6 Gender Male 54 48.2 11 33.3 65 44.8 Female 58 51.8 22 66.7 80 55.2 Race/Ethnicity Hispanic/Latino 6 5.4 — — 6 4.1 East Indian 2 1.8 — — 2 1.4 Black 1 3.6 — — 4 2.8

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Non-Hispanic White 52 75 — — 84 57.9 Asian, Pacific Island 4 5.4 — — 6 4.1 Other 6 8.9 — — 10 6.9 American Indian — — 33 100.0 33 22.8 Age 18–30 years 3 2.7 4 12.1 7 4.8 31–40 years 19 17.0 11 33.3 30 20.7 41–50 years 36 32.1 7 21.2 43 29.7 51–60 years 38 33.9 11 33.3 49 33.8 61–75 years 16 14.3 0 0.0 16 11.0

Data Collection Instruments were available online through a university-affiliated Qualtrics software site (Qualtrics Labs, Provo, UT), and all participant responses were anonymous. Practicing providers selected the embedded link leading to the questionnaire website. On average, participation required 8 to 15 minutes to complete, simulating the average time allocated for patient–provider encounters (Mechanic, McAlpine, & Rosenthal, 2001). After giving informed consent, providers were randomly assigned to the vignette with either high or low ethnic salience (see Table 2). Table 2 Assignment of Healthcare Providers to Online Clinical Case Vignettes for an Indigenous Patient Racial concordance Ethnic salience Non-Indigenous Indigenous Total N (%) n n Low 36 11 47 (43.1) High 49 13 62 (56.9) Total N 85 (78.0%) 24 109 (%) (22.0%) (100.0)

Participants completed a demographic questionnaire, including racial self-identification; viewed one of two randomly generated “Indigenous patient” clinical case vignettes; and completed a pain assessment scale for the patient and pharmacological medical decisions that exceed the scope of this paper. Participant incentive was a $1 donation to a scholarship fund for each completed questionnaire.

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Outcome measures. The outcome measure was the providers’ perception of patient pain on an 11-point visual analogue scale (VAS) ranging from 0, no pain, to 10, most severe pain, as is commonly used to quantify patient pain levels in medical clinics (Chibnall, Tait, & Ross, 1997; Zalon, 1993). The Cronbach’s alpha for a VAS is .83 and has high internal (Guyatt, Townsend, Berman, & Keller, 1987) and external validity and reliability (Carlsson, 1983). Provider perceptions of patient pain on the VAS were measured by comparing providers’ ratings of the patient’s present pain with the patient’s self-report.

Primary predictors. Patient–provider racial concordance and ethnic salience were the study’s primary predictors. The self-identified Indigenous providers were considered racially concordant, with all other providers being considered non-concordant. Patient Indigenous ethnic salience referred to the varying vignette conditions for the Indigenous patient; that is, high: Aki Turtlebear or low: Bob Smith.

Data Analysis A 2 × 2 analysis of variance (ANOVA), between-subjects design, was conducted. Patient–provider racial concordance was the first independent variable. Patient Indigenous ethnic salience, the second independent variable, was determined by randomly assigning providers to the vignette with either high or low Indigenous ethnic salience. Independent-variable main and interaction effects were assessed on the outcome measure of providers’ VAS ratings of the patient’s pain.

Results Pain Rating (Providers’ Perceptions of the Patient’s Pain VAS) The providers rated the patient’s pain at a grand mean of 4.32 (1.54 SD). This result demonstrated that all providers, regardless of race or patient ethnic salience, rated the patient’s pain on the VAS lower than the patient’s current self-rating of 9 out of 10. The racially concordant, or Indigenous, providers showed no significant difference from the non-Indigenous providers on their ratings of either Aki Turtlebear or Bob Smith. Furthermore, the providers did not significantly differ in pain assessment for Aki Turtlebear or Bob Smith, regardless of patient ethnic salience. However, as seen in Table 3 and Figure 3, the interactional effect between racial concordance and ethnic salience on provider pain assessment was significant (F = 4.56 for a moderate effect and η2 = 0.04 nearing a medium effect size [Cohen, 1977]). Racially concordant (Indigenous) providers rated the high ethnic salience patient, Aki Turtlebear’s, pain higher than that of the low ethnic salience patient, Bob Smith.

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Table 3 Healthcare Providers’ Pain Ratings on a Visual Analogue Scale (VAS) for an Indigenous Patient Presenting With Pain: 2 × 2 Interaction Effect for Racial Concordance and Patient Ethnic Salience Source Partial SS df MS F Prob > F Model 15.80 3 5.27 2.3 .08 Racial Concordance 3.65 1 3.65 1.59 .21 Ethnic Salience 2.23 1 2.23 0.97 .33 Racial Concordance × Ethnic Salience 10.45 1 10.45 4.56a .04 Residual 219.96 96 2.29 Total 235.76 99 2.38 aCritical F = 2.70, N = 96. Total variance accounted for ω2 = 0.03; η2 = 0.04 nearing a medium effect size (Cohen, 1977)

Figure 3. Healthcare providers’ pain assessment for an online clinical vignette for an Indigenous patient presenting with pain: interaction effect for racial concordance and patient ethnic salience

Discussion Due to historical trauma and ongoing oppression and marginalization, Indigenous populations experience higher levels of pain than other populations, consequently elevating the need for effective pain care (Jimenez et al., 2011). This is the first known study to examine the relationship between healthcare provider racial concordance and patient ethnic salience in pain care, particularly among U.S. Indigenous patients. Healthcare providers often rely on well- informed methods, such as the VAS pain scales, to make quick clinical decisions and ensure high-quality care for patients of all races. Our findings imply that shared race and the degree to

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González which a patient appears Indigenous, or patient ethnic salience, does not appear to affect pain assessment alone. Overall, all providers ranked the Indigenous patient’s pain lower than the patient’s VAS. This finding suggests that Indigenous patients’ self-reported pain may be discounted by providers, regardless of the provider’s race and patient’s ethnic salience in the exam room. However, when the provider and patient are both Indigenous, providers may be more likely to perceive highly identifiable Indigenous patients’ pain as more congruent with their pain report, as opposed to patients who may be perceived as belonging to another racial/ethnic group(s). Our findings support the relationship-centered decision-making framework in that providers may vary in their assessment of severe pain based on provider-perceived similarities, as suggested by other researchers (Burgess et al., 2004; Burgess et al., 2006; Tait et al., 2009). As guided by the relationship-centered decision-making framework, our findings suggest that a provider’s tendency to underrate a patient’s pain may be influenced by unconscious bias, which has been seen to negatively affect quality of care. Hence in order to provide unbiased, effective pain care, providers must consider the historical and cultural variables that influence pain care decision-making. Historical Systemic Variables Providing culturally appropriate pain care to Indigenous persons may be impeded by historical and present cultural barriers in the healthcare system. During the 19th century Indigenous healing methods were deemed illegal and Western medicinal treatment was used as a tool of assimilation, thereby increasing mistrust and poor patient–provider relationships (Warne & Frizzell, 2014). Throughout the years Indigenous healthcare has vastly improved and is often administered through or in partnership with tribal entities seeking to increase culturally appropriate care. However, cultural barriers may still exist between present Indigenous health beliefs and Western medicine approaches (Warne & Frizzell, 2014). Culturally Bound Variables Because Indigenous and Western cultural beliefs differ, providers may have difficulty in assessing Indigenous cultural expressions of pain and providing culturally appropriate treatment. Several Indigenous health frameworks stress the importance of relational aspects in healing, including respect, connection, trust, and spirituality (Cross, 2003; Hovey, Delormier, & McComber, 2014; Lowe & Struthers, 2001). First, Indigenous traditional healing practices often emphasize collective, holistic approaches for healing mind, body, and spiritual pain, which may differ from Western medicine that often focuses on the individual and physical aspects alone (Struthers, Eschiti, & Patchell, 2004). Additionally Indigenous patients may not express high ratings on a pain scale if they believe pain is a natural part of life (Sobralske & Katz, 2005). As a result, providers may lower their pain ratings for such patients. This thereby lowers the providers’ perceived need for treatment. Second, Indigenous verbal descriptions of pain symptoms (e.g., using metaphors referring to relationships between objects in the environment) may differ from descriptions typical of Western medicine, (Gahlinger, 2006). This cultural expression demonstrates the Indigenous patient’s interconnectedness with the world, which does not easily fit into a linear pain scale like the VAS. Thus, Indigenous patients’ pain may go undetected, be misunderstood, or be underrated (Gahlinger, 2006). When an Indigenous person’s pain report is not understood or trusted by their provider, both the provider’s and patient’s perception and trust of one another are likely to suffer. Providers must remain aware of these differences in culturally bound pain expressions when making treatment plans. Providers may reduce barriers in pain assessment and build their healing relationship if they inquire about

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González cultural healing beliefs and practices and consider the influence of pain on the mind, body, and spirit. Implications for Pain Care Decision-Making Pain assessment remains of high importance because it determines medical decision- making for pain care, including whether or not a provider prescribes analgesic medications (Bartfield, Salluzzo, Raccio-Robak, Funk, & Verdile, 1997) or makes referrals. However, the more a provider trusts a patient and the reported pain level, the more she or he may bridge cultural differences and empathize, which has been argued to moderate potential biases in provider pain assessments (Drwecki, Moore, Ward, & Prkachin, 2011; Tait et al., 2009). Some researchers have promoted building cultural empathy to improve healthcare, which involves drawing from knowledge about the patient and his/her culture and building skills to remain aware of cultural differences in health beliefs, communication regarding health, and expectations for care. All the while, the provider focuses on becoming empathetic to a patient in order to bridge cross-cultural differences to provide effective treatment (Dyche & Zayas, 2001). Through more research among other tribal groups and healthcare providers, effective pain care strategies can be identified. Limitations Several limitations existed within this study. First, the online case vignette design may lack external generalizability to clinical settings given the small sample size. Second, as is common with Internet-based questionnaires, this study used a convenience sample of providers working only with Indigenous patients and having high patient loads. This selection likely decreased response rates and increased the possibility of sampling bias, even though participants were randomly assigned to the vignettes. Third, the results were examined as aggregated data by design; however, regional, tribal, and clinical differences may exist. Last, only providers’ self- reported race, not ethnic identity and degree of cultural adherence, was measured, which may have influenced the responses. Despite these limitations, this is the first known study investigating the influences of racial concordance and patient ethnic salience on pain assessment among chronic pain patients and among Indigenous patients.

Conclusions We found that providers’ assessment of a patient’s pain varied according to if the provider is Indigenous and by the patient’s ethnic salience. Our findings imply that Indigenous healthcare providers and patient ethnic salience interact and affect providers’ assessment of Indigenous patients’ pain, perhaps related to unconscious biases. This study informs provider practice by considering the relationship-centered medical decision-making framework and the potential influence of providers’ race, potential unconscious biases, and the patient’s ethnic salience, which may be uniquely relevant when providers treat Indigenous patients. Given that cross-cultural trainings and educational interventions for healthcare providers can lower occurrences of unconscious bias related to race/ethnicity (Davis, 2009; Edwards, Davies, & Edwards, 2009; Tait et al., 2009), providers require training to build skills to identify, address, and lower unconscious biases. This could then increase effective care for Indigenous patients and other racial ethnic minorities. Hence, future research on other tribal populations, the patient experience, and barriers to the healing relationship is needed to identify mechanisms to reduce pain disparities. Furthermore, awareness of the clinical decision-making complexities introduced

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González during time-pressured conditions and by cultural dissimilarity may help mitigate the untoward effects of healthcare disparities among Indigenous populations.

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Burgess, D. J., van Ryn, M., Crowley-Matoka, M., & Malat, J. (2006). Understanding the provider contribution to race/ethnicity disparities in pain treatment: Insights from dual process models of stereotyping. Pain Medicine, 7(2), 119–134. doi:10.1111/j.1526-4637.2006.00105.x

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Guyatt, G. H., Townsend, M., Berman, L. B., & Keller, J. L. (1987). A comparison of Likert and visual analogue scales for measuring change in function. Journal of Chronic Diseases, 40(12), 1129–1133. doi:10.1016/0021-9681(87)90080-4

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The Healing Relationship in Indigenous Patients’ Pain Care: Influences of Racial Concordance and Patient Ethnic Salience on Healthcare Providers’ Pain Assessment • Michelle Johnson-Jennings, Wassim Tarraf, Hector M. González Meghani, S. H., Brooks, J. M., Gipson-Jones, T., Waite, R., Whitfield-Harris, L., & Deatrick, J. A. (2009). Patient-provider race-concordance: Does it matter in improving minority patients’ health outcomes? Ethnicity & Health, 14(1), 107–130. doi:10.1080/13557850802227031

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Abstract The aim of this study was to determine the prevalence of malocclusion and orthodontic treatment need according to the Index of Complexity, Outcome, and Need (ICON) among schoolchildren of the island community of Haida Gwaii in northwestern British Columbia, Canada. Two elementary and two high schools in Haida Gwaii were approached for census sampling. Out of 535 schoolchildren, 215 (90 boys and 125 girls) agreed to participate (40.2% response) in this cross-sectional epidemiological study. A trained examiner assessed orthodontic treatment need in children employing the ICON score and the ICON complexity grade. The mean age (N = 215) was 12.9 ± 2.8 years. Of the examined schoolchildren, 67% had Aboriginal ancestry (at least one Aboriginal parent). The mean ICON score (N = 215) was 43.5 ± 26.2. There were no statistically significant differences in ICON scores for gender (t test, p = 0.207), ethnicity (t tests: paternal ethnicity, p = 0.886 and maternal ethnicity, p = 0.389), or school (ANOVA with post hoc Bonferroni adjustment, p = 0.317). Overall, 43.7% of the surveyed Haida Gwaii adolescents needed orthodontic treatment (ICON > 43). Based on the ICON complexity grade, 31% of the schoolchildren had moderate to very difficult malocclusions; therefore, specialty orthodontic services are recommended in this remote community.

Keywords Aboriginal, Haida Gwaii, malocclusion, orthodontics, adolescent, Skidegate, Masset, ICON

Authors Asef Karim, DMD, MPH, MSc Candidate and Graduate Orthodontic Resident, Department of Graduate Orthodontics, Faculty of Dentistry, University of British Columbia, #210 6180 Blundell Road, Richmond, BC, V7C 4W7, (604)-261-8833, [email protected]. Dr. Karim played a primary role in all aspects of this master’s thesis research, including analysis, article development, and revisions. Jolanta Aleksejuniene, DDS, MSc, PhD, Assistant Professor, Chair, Preventive and Community Dentistry, Faculty of Dentistry, University of British Columbia. Dr. Aleksejuniene provided expertise in methodological design, statistical analysis, article development, and revisions. Edwin H. K. Yen, DDS, Dip. Ortho, PhD, Professor, Department Head, Graduate Orthodontics, Faculty of Dentistry, University of British Columbia. Dr. Yen provided expertise in study design, methodology, and article development. Mario Brondani, DDS, MSc, PhD, Assistant Professor, Dental Public Health, Faculty of Dentistry, University of British Columbia. Dr. Brondani provided expertise in recognizing public health issues related to orthodontic clinical care. Arminée Kazanjian, Dr.Soc., Professor, School of Population and Public Health, Faculty of Medicine, University of British Columbia, and Research Associate, BC Cancer Agency,

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Sociobehavioural Research Centre. Dr. Kazanjian provided expertise in incorporating a broader public health approach to providing orthodontic treatment to an isolated population.

Acknowledgements The authors would like to thank UBC Dentistry and Dr. Jim Rogers from Health Canada for their input and guidance in this study. We are also grateful to the Haida bands in Skidegate and Old Massett, Lauren Brown, Michelle Condrotte Brown, and all the Haida Gwaii schools for welcoming us into their communities. Heartfelt thanks to Kimi Evans for coordinating from UBC, Dr. Seema Basati for administration in Haida Gwaii, and Goldie Swanson in Masset for making us feel like family.

Introduction The crowding or malalignment of teeth, commonly called malocclusion, can be a health problem (Shaw, O’Brien, Richmond, & Brook, 1991). Malocclusion can lead to problems with oral function (chewing, swallowing, and speech), difficulties in jaw movement, discrimination due to facial appearance, and greater risk for trauma, periodontal disease, or tooth decay. Its etiology is multifactorial and is influenced by genetic and environmental factors (Shaw et al., 1991). A recent Canadian Health Measures Survey (CHMS) conducted by Health Canada in 2007–2009 included an oral health component that measured malocclusion (Health Canada, 2010). Occlusal conditions, including crossbite, severe crowding/spacing, and excessive overbite/overjet were recorded and the prevalence of malocclusion (less than acceptable occlusion) among all 12- to 59-year-old Canadians was 24.0%, 95% CI [20.9, 27.5]. Malocclusion among all young adults (20- to 39-year-olds) was 24.3%, 95% CI [21.2, 27.6], while it was less prevalent at 18.5%, 95% CI [15.2, 22.3] among adolescents 12 to 19 years old (Health Canada, 2010). Limited studies document malocclusion among Aboriginal Peoples in Canada. Zammit (1993) discovered that 95% of Labrador Inuit youth had some degree of malocclusion and a need for orthodontic care. Harrison and Davis (1996) documented that First Nations adolescents in British Columbia had more crowding, Class III dental relationships, and anterior open bites than their Euro-Canadian counterparts. In 2002, Cadman, Glover, Heo, Warren, and Major compared 60 First Nations orthodontic patients to 60 non–First Nations orthodontic patients; the First Nations patients had greater pretreatment malocclusion as evidenced by their significantly higher pretreatment Peer Assessment Review (PAR) scores compared to the non–First Nations patients. Currently, British Columbia ranks second provincially in absolute numbers (196,795) of Aboriginal people (Ontario: 242,495, Alberta: 188,365, and Manitoba: 175,395) (Statistics Canada, 2007). Among the Aboriginal population in British Columbia is the island community of Haida Gwaii, previously known as the Queen Charlotte Islands. This archipelago lies off the north coast of British Columbia and has a population (mostly Aboriginal) of approximately 4,700 (Go Haida Gwaii, 2012). The islands are connected to mainland British Columbia by daily scheduled air service from two small airports and by year-round ferry service (Go Haida Gwaii, 2012). There are two dental clinics (affiliated and run by the University of British Columbia’s Faculty of Dentistry) in Haida Gwaii, one in the northern town of Masset and the other in the southern town of Skidegate (General Practice Residency [GPR] Programs at UBC, UBC

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Dentistry Impressions fall 2012); each is staffed by a receptionist and a dental assistant. Haida Gwaii residents receive regular dental care (hygiene services, preventive care, direct restorations, root canal treatment, extractions, crowns, bridges, etc.) from dental residents of the Graduate Residency Program at the Faculty of Dentistry, University of British Columbia (UBC; GPR Community Programs at UBC, 2012). At present, orthodontic services are not provided at these dental clinics; individuals have to go off island for orthodontic treatment. The aim of this study was to conduct a cross-sectional epidemiological survey of Haida Gwaii adolescents to determine the prevalence of malocclusion and orthodontic treatment needs. The results of this assessment could help to strategize the on-island implementation of orthodontic services by expanding current dental outreach services provided by UBC.

Methodology Ethics and Memorandum of Understanding A Memorandum of Understanding was signed by the local Haida Gwaii band leaders, the UBC Graduate Orthodontics Department, and the UBC Dental Graduate Residency Program. The study was also approved by the Clinical Research Ethics Board at UBC (Certificate Number H11-02446).

Study Population Two elementary and two high schools in Haida Gwaii were approached for census sampling of adolescents. Letters were sent to the principals, schoolteachers, and parents or guardians of the children, to inform them about the examination procedure, to assure them of the confidentiality of the information collected, and to seek consent for the children’s’ participation. Posters were put up in the schools and community centres. A 10-dollar iTunes card was given to every participant. Out of 535 schoolchildren, 215 (90 boys and 125 girls) obtained parental consent and agreed to participate (40.2% response rate). The age range of the schoolchildren was 7–18 years. Criteria for exclusion of any participant included previous orthodontic treatment, cleft lip or palate, and any other relevant syndrome.

Clinical Examination The index used to assess malocclusion in this adolescent population was the Index of Complexity, Outcome, and Need (ICON; Brook & Shaw, 1989; Daniels & Richmond, 2000). The ICON was developed to assess orthodontic treatment need, treatment complexity, and treatment outcome. The ICON scoring system evaluates five clinical traits: dental aesthetics by the Aesthetic Component of the Index of Orthodontic Treatment Need (IOTN), upper arch crowding or spacing, crossbite, incisor vertical relationship (open bite or over bite), and buccal segment (anteroposterior relationship). Once all categories are scored and appropriately weighted, they are summed for a total ICON score. The ICON scoring can be done on mixed dentition or permanent dentition either clinically or on study models with accompanying orthodontic photographs. A score greater than 43 indicates that the components of the malocclusion are complicated enough and that orthodontic treatment is needed. The ICON categorizes how difficult or complex a malocclusion is to treat as follows: < 29 = easy to treat, 29–50 = mild complexity, 51–63 = moderate complexity, 64–77 = difficult to treat, and > 77 = very difficult to treat (Daniels & Richmond, 2000).

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Prior to the clinical examinations in Haida Gwaii, intra-examiner reliability was tested. A total of 35 patients from the UBC Graduate Orthodontic Clinic were examined and re-examined two weeks later (using standardized digital pretreatment orthodontic study models and photographs) with the ICON. No radiographs or previous dental records of the participants were used. The Pearson correlation coefficient was between .87 and .98 (p < 0.001) for the five traits being measured by the ICON, indicating a high level of agreement, that is, reproducibility of the ICON scores. In Haida Gwaii, a single trained examiner (graduate orthodontic resident) conducted the examinations in a well-lit room at each school. A simple chair was provided for participants to be seated during the examination, and disposable gloves, measuring probes, and tongue retractors were used for the direct examination in the knee-to-knee position. A community health worker was paid a daily stipend for assistance. Participants were not immediately informed of the results of their assessment. Once all the data from the examinations were collected and processed, a list was generated for each school principal showing the need for orthodontic treatment for each participant. Participants with high ICON scores were encouraged by notification from the principal to get dental checkups to further assess their orthodontic needs.

Statistical Analyses Data from the examinations at the schools were recorded on examination forms and then entered into Microsoft Excel. Data processing and analyses were carried out using the Statistical Package for Social Sciences, version 20.0 (SPSS Inc., Chicago, IL). For the descriptive statistics, categorical variables were expressed as percentages and quantitative variables as means and standard deviations. Gender- and ethnicity-related differences, with respect to ICON scores, were tested by the independent sample t test. To compare schools, age groups, and ancestry categories, analysis of variance followed by post hoc Bonferroni adjustment was used, and the complexity scores relative to gender were analyzed by the Pearson chi-square test.

Results The mean age of the examined population (N = 215) was 12.9 ± 2.8 years; for males it was 13.5 ± 2.6 years and for females it was 12.6 ± 2.9 years.

Orthodontic Treatment Need Orthodontic treatment need (as indicated by an ICON score > 43) was found in 43.7% (94) of the 215 examined adolescents. The mean ICON score (N = 215) was 43.5 ± 26.2. In Table 1, analysis of variance showed no statistically significant differences between the age groups; however, the eldest age group (16- to 18-year-olds) had the highest ICON score. Figure 1 shows the range of ICON scores related to gender. Although females tended to have lower ICON scores than males, there were no statistically significant differences in ICON scores regarding gender; the mean ICON score for males was 46.1 ± 26.6 and for females, the mean ICON score was 41.5 ± 25.9 (independent sample t test, p = 0.207). Elementary schools had lower ICON scores than their respective high schools; however, these differences were not statistically significant.

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Table 1 Orthodontic Treatment Need Relative to Age as Assessed by ICON Age Group Number of Students examined (%) Mean ICON Score ± Standard Deviation <10 y 28 (13) 44.4 ± 25.2 (6-10) 10-12y 50 (23) 36.3 ± 21.9 13-15y 91(42) 44.1 ± 27.1 16-18y 46 (21) 49.4 ± 28.3 Total 215 (100) 43.5 ± 26.2 ANOVA One way P=0.158; Post Hoc Bonferroni adjustment P=0.139

Figure 1. Orthodontic treatment need ICON scores for male and female adolescents in Haida Gwaii

Independent sample t-Test, Mean ICON score for males = 46.1 ± 26.6 and females = 41.5 ± 25.9, P=0.207; circles represent outliers.

With respect to ethnicity, 67% of the examined adolescents were of Aboriginal ancestry (32% had one parent who was Aboriginal and 35% had two Aboriginal parents) and 33% were non- Aboriginal. Table 2 shows that adolescents with Aboriginal fathers had similar ICON scores to those with non-Aboriginal fathers Table 2 Orthodontic Treatment Need Relative to Paternal and Maternal Ancestry as Assessed by ICON Parental Ancestry n (number) Mean ICON Score (Standard Deviation) Paternal Aboriginal 108 43.7 (26.8) Non-Aboriginal 107 43.2 (25.6) Total 215

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Independent sample t test, p=0.886 Maternal Aboriginal 113 45.0 (27.9) Non-Aboriginal 102 41.9 (24.4) Total 215 Independent sample t test, p=0.389

Adolescents with Aboriginal mothers had slightly higher ICON scores than those with non- Aboriginal mothers, but the difference was not significant. Analysis of variance showed that there were no significant differences among adolescents having two Aboriginal parents, one Aboriginal parent, or two non-Aboriginal parents (Table 3).

Table 3 Orthodontic Treatment Need Relative to Parental Ancestry as Assessed by ICON Aboriginal Ancestry n (number) ICON Score (Standard Deviation) Both parents Aboriginal 75 45.9 (28.3) One parent Aboriginal 69 40.9 (25.2) Both parents non-Aboriginal 71 43.3 (25.0) Total 215 One-way ANOVA p = 0.524; post hoc Bonferroni p = 0.769

Orthodontic Treatment Complexity Table 4 shows the overall grades of orthodontic complexity and orthodontic complexity by gender. Moderate to very difficult complexity grades were found for 31% (66) of the examined adolescents and easy to mild complexity grades for 69% (149). The Pearson chi-square test revealed no statistically significant gender differences in complexity grades.

Table 4 Orthodontic Treatment Complexity Relative to Gender as Assessed by ICON Adolescents by Gender Total Adolescents Male (n / %) Female (n / %) (n / %) ICON Complexity Grade Easy (< 29) 28 / 31.1 44 / 35.2 72 / 34 Mild (29–50) 31 / 34.4 46 / 36.8 77 / 35 Moderate (51–63) 6 / 6.7 10 / 8.0 16 / 7 Difficult (64–77) 8 / 8.9 9 / 7.2 17 / 8 Very Difficult (> 77) 17 / 18.9 16 / 12.8 33 / 16 90 / 100 125 / 100 215 / 100 Pearson chi-square test p = 0.750

Limitations This study examined 40.2% of the school population through census sampling. Given this response rate, there is a possibility that the examined adolescents (N = 215) may not accurately reflect the orthodontic treatment needs of all adolescents in Haida Gwaii schools. A power calculation suggested that the appropriate sample size should consist of 502 males and 502 females; however, this was not feasible as the total number of Haida Gwaii adolescents was 535.

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Orthodontic Treatment Need of Adolescents in the Island Community of Haida Gwaii, Canada • Asef Karim, Jolanta Aleksejuniene, Edwin H. K. Yen, Mario Brondani, Arminee Kazanjian

Given the limitations of a relatively small cohort size in Haida Gwaii, enhanced recruitment to include all Haida Gwaii adolescents should be considered. Another potential selection bias relates to gender distribution in the present study, as there were more girls (N = 125) than boys (N = 90). A possible explanation for the gender difference is that females may be more concerned about their facial appearance and dental status than males, and consequently females were more likely to seek a checkup in anticipation of treatment.

Discussion Orthodontic Treatment Need of Haida Gwaii Adolescents This is the first study to assess the malocclusion of adolescents in the remote island community of Haida Gwaii and to establish that a significant number of these adolescents need orthodontic treatment. The prevalence of malocclusion (as defined by an ICON score > 43) in the examined Haida Gwaii adolescents was 43.7%, more than double that reported in all Canadian adolescents in the CHMS (18.5%) (Health Canada, 2010). This variance may be explained by differences in sampling. The CHMS had a sample of 6- to 19-year-olds that was approximately 95% non- Aboriginal and 5% Aboriginal (Health Canada, 2010), while the present study of 7- to 18-year- olds had 67% Aboriginals and 33% non-Aboriginals. As such, it appears that Haida Gwaii adolescents (majority with Aboriginal ancestry) have a higher orthodontic treatment need than most Canadian adolescents (CHMS). Comparative data from the CHMS confirm this: Non- Aboriginal adolescents had a malocclusion prevalence of 17.0%, while Aboriginal adolescents had a malocclusion prevalence of 43.1% (Health Canada, 2010). As we explain below, factors other than race/ethnicity per se are the likely root cause of this variance. Our results are consistent with studies that found no statistically significant differences in gender when assessing orthodontic treatment need with the ICON (Aikins, daCosta, Onyeaso, & Isiekwe, 2011; Liepa, Urtane, Richmond, & Dunstan, 2003; Ngom, Diagne, Diop-Ba, & Thiam, 2007). Although the difference was not statistically significant, potentially due to a relatively small sample size, our results show that males tended to have higher mean ICON scores than females (46.1 versus 41.5) and more “very difficult” malocclusions (19%) to treat than females (13%). This difference is clinically relevant given that orthodontic cases with higher pretreatment ICON scores take longer to treat (Onyeaso & BeGole, 2006; Richmond et al., 2001). Thus, adolescents with higher ICON scores should be informed that their orthodontic treatment will probably take longer than average compared to those with lower ICON scores. Assessing orthodontic treatment need in the larger context of overall oral health is important. Good oral hygiene and freedom from caries (cavities) is the foundation for good oral health and successful orthodontic treatment; if an adolescent has compromised oral hygiene or caries, malocclusion can result (Shaw et al., 1991). Some studies reported that the presence of malocclusion and orthodontic treatment need are closely related to dental caries and poor oral hygiene (Gabris, 2006; Nobile, Pavia, Fortunato, & Angelillo, 2007). Gabris (2006) showed that Hungarian adolescents with malocclusion had statistically significant higher caries rates (using the decayed, missing, and filled permanent teeth [DMFT] index) and more plaque (using the visible plaque index [VPI]) than adolescents without malocclusion. Nobile et al. (2007) showed that Italian adolescents with a higher DMFT were significantly more likely to require orthodontic treatment. These studies indicate that adolescents with compromised oral hygiene and more

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Orthodontic Treatment Need of Adolescents in the Island Community of Haida Gwaii, Canada • Asef Karim, Jolanta Aleksejuniene, Edwin H. K. Yen, Mario Brondani, Arminee Kazanjian caries consequently exhibit early loss of deciduous teeth and subsequent drifting and crowding of teeth, both contributing to malocclusion (Gabris, 2006; Nobile et al., 2007). Although our study did not assess the prevalence of dental caries, several Canadian studies have reported the high prevalence of dental caries in Aboriginal youth (Peressini, Leake, Mayhall, Maar, & Trudeau, 2004a; Peressini, Leake, Mayhall, Maar, & Trudeau, 2004b; Schroth, Moore, & Brothwell, 2005; Schroth, Smith, Whalen, Lekic, & Moffatt, 2005; Zammit, Torres, Johnsen, & Hans, 1994). Early childhood caries (ECC), defined as the presence of one- or-more decayed, missing (due to caries), or filled tooth surfaces in any primary tooth in a preschool-aged child, is high among Aboriginal children in Canada (Schroth, Harrison, & Moffatt, 2009), approximately 87% of whom have caries by age five (Leake, Jozzy, & Uswak, 2008). There is a multitude of behavioural, environmental, and socioeconomic risk factors associated with early childhood tooth decay (Leake et al., 2008). Research has revealed that the greatest risk factor for ECC in Aboriginal children is poverty and that about 52% of Aboriginal children live in poverty (Canada National Council of Welfare, 2007; Irvine, Holve, & Schroth, 2011). The CHMS reported that Aboriginal youngsters (6–11 years old) had a mean dmft (decayed, missing, and filled primary teeth) and DMFT of 6.62, while non-Aboriginal youngsters had a combined dmft and DMFT mean of 2.28 (Health Canada, 2010). Thus, according to the CHMS, Aboriginal youngsters had close to three times the caries experience of non-Aboriginal youngsters. This difference in caries severity between Aboriginal and non-Aboriginal youngsters coincides with the higher prevalence of malocclusion in Aboriginal youngsters (43.1%) as compared to non-Aboriginal youngsters (17.0%) in the CHMS (Health Canada, 2010). Based on the above information, one can question whether Haida Gwaii adolescents also have high caries rates that have contributed to the prevalent malocclusion (43.7%) in this population. Our results showed that 16- to 18-year-olds had the highest mean ICON score of 49.4, whereas the younger age groups had lower mean ICON scores (36.3–44.4). This trend of older adolescents having higher orthodontic treatment needs was also observed among the schools, where adolescents from both high schools had higher ICON scores (49.9 and 43.5) than adolescents from corresponding elementary schools (38.4 and 41.3). Could compromised oral hygiene, and caries leading to the loss of primary and permanent teeth be contributing factors to changes in the dentition and future malocclusion or worsening of the malocclusion in these adolescents? In order to answer this question and assess the impact of caries on Haida Gwaii adolescents, further information would be required. Such information would include reports on family income, parental education levels, oral hygiene habits with respect to daily brushing and flossing, dietary habits and food availability, community water fluoridation, community oral health education, and access to timely oral health care. With respect to ethnicity or parental ancestry, there were no statistically significant differences in our study. Based on the above discussion, one would expect adolescents with Aboriginal ancestry to have more malocclusion and higher ICON scores than adolescents with non-Aboriginal ancestry. One explanation for the lack of observed differences between Aboriginal and non-Aboriginal adolescents is the physical remoteness of the community and the scarcity of local dental specialty services like orthodontics. In essence, the geographical location of Haida Gwaii is a significant barrier to health care access, equally affecting children of Aboriginal and non-Aboriginal backgrounds. The lack of access to timely dental care in remote Canadian communities is influenced by several factors, including transportation costs, economic constraints, commuting time, and

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Orthodontic Treatment Need of Adolescents in the Island Community of Haida Gwaii, Canada • Asef Karim, Jolanta Aleksejuniene, Edwin H. K. Yen, Mario Brondani, Arminee Kazanjian personal factors (Survey, 2012). The closest orthodontic office for any Haida Gwaii resident is a six-hour ferry ride or a plane trip away. As such, Haida Gwaii residents seeking orthodontic treatment must consider the financial strain of long-distance travel over a long period (comprehensive orthodontic treatment can last on average about two years). Studies have revealed that populations in remote communities cannot afford the transportation cost to access dental services (Survey, 2012). Additionally, adolescents may need to take time off school to travel off island, and their parents or guardians may need to take time off work for the commute and possibly make arrangements for care of other children who stay on island. These difficulties as well as economic constraints may prevent residents of Aboriginal and non-Aboriginal ancestry alike from travelling off island for orthodontic treatment. Another important consideration for the provision of orthodontic care locally in this remote community is the orthodontic treatment complexity. Approximately 67 of the examined adolescents (31%) had moderate, difficult, or very difficult malocclusions to treat. This is clinically relevant because almost one out of every three adolescents had a malocclusion that requires the skills and technical expertise of an orthodontic specialist. This finding supports the case that Haida Gwaii dental clinics should establish specialty orthodontic care and not deliver orthodontic services from existing general dentist residents who may not be comfortable and skilled with the diagnosis and treatment of complicated orthodontic cases.

Options for Orthodontic Care in Haida Gwaii This study has revealed that many of the adolescents in Haida Gwaii have a clinical need for orthodontic treatment. Below are several options that explore the possibility of creating sustainable orthodontic care in Haida Gwaii, from most to least preferable. Option 1: Orthodontist establishes private practice in Haida Gwaii. The closest orthodontic office to Haida Gwaii is in Prince Rupert, which is either a short flight away or a six-hour ferry ride away. Because the population of Haida Gwaii is small (about 4,700), there may not be a large enough pool of potential patients to keep an orthodontist busy in the long term if he or she were to live in Haida Gwaii and set up a full-time private orthodontic practice in Masset or Skidegate. Alternatively, an orthodontist could set up a part-time practice in Masset or Skidegate and spend a couple of days a week in Haida Gwaii and the rest of the week elsewhere in BC in another practice; or he or she could live outside of Haida Gwaii and set up a satellite practice in Haida Gwaii, flying in once every four to six weeks for a couple of days to provide care. Such alternatives would require extensive planning for the orthodontist and the staff. Treatment delays might result if there is not an office that is open on a daily or weekly basis to deal with orthodontic emergencies. For example, if a patient’s bracket falls off and the patient has to wait three to five weeks to get the bracket rebonded, the tooth may move in an unwanted direction and treatment may need to be stepped back in order to accommodate the change; ultimately, this could cause a delay in treatment. For the satellite practice, another drawback is that the orthodontist would not have an opportunity to fully integrate into the local society and culture. Initially, the community may consider the “fly in” orthodontist as an outsider; however, with regular visits providing continual care over the long term, the orthodontist would have the opportunity to gain the respect and trust of the local residents and be regarded as a dedicated health care provider. Regular care by the same orthodontic team (the orthodontist and staff), whether they lived in Haida Gwaii or flew in, would be the best option for orthodontic care. Such a setup

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Orthodontic Treatment Need of Adolescents in the Island Community of Haida Gwaii, Canada • Asef Karim, Jolanta Aleksejuniene, Edwin H. K. Yen, Mario Brondani, Arminee Kazanjian would establish genuine commitment to a remote community and would ensure consistency in treatment philosophy and care over time. Option 2: Graduate orthodontic residents from UBC do clinical rotation in Haida Gwaii as part of their residency. Several Canadian dental schools require their students to participate in community-based dental programs that serve disadvantaged and remote populations that are unable to access dental care (Brothwell, 2009; Woronuk, Pinchbeck, & Walter, 2004). For example, the dentistry programs at the University of Alberta and the University of Manitoba have successful decades- old dental outreach programs that provide students with external placements in local community dental centres (Brothwell, 2009; Woronuk et al., 2004). These dental centres are usually satellite clinics of the university’s main dental clinic and have modern equipment. UBC’s Faculty of Dentistry also has a record in developing and implementing community-based dental outreach programs (UBC Faculty of Dentistry, 2015), including those at existing health clinics at Masset and Skidegate. There would be many benefits to having UBC orthodontic residents provide orthodontic care in rotations at the Masset and Skidegate dental clinics as part of their graduate residency. A clinical rotation to Haida Gwaii would widen the scope of the residents’ educational experience; they would have the opportunity to travel to a remote part of BC to provide care to a community and its individuals who otherwise may find it difficult to seek orthodontic services. Such community-based dental education and service allows students to “appreciate the diversity and challenges that health care providers encounter in everyday practice in different community environments” (Brondani, Clark, Rossoff, & Aleksejuniene, 2008, p.1160). Furthermore, by providing treatment outside of the university dental clinic setting, students can improve their sense of cultural awareness and communication skills with different populations and community members and can begin to identify and understand the social and behavioural determinants underlying personal health care decisions in different communities (Mouradian, Berg, & Somerman, 2003; Mouradian & Corbin, 2003; Strauss, Stein, Edwards, & Nies, 2010). Ultimately, experiences in Haida Gwaii may inspire residents to work in smaller communities rather than in large urban centres once they graduate from their orthodontic residency. In developing an orthodontic outreach program in Haida Gwaii, there would be many challenges and potential obstacles, including facility cost; cost of necessary orthodontic equipment and instruments; program funding; supervising the graduate orthodontic residents over the course of treatment with experienced and caring orthodontists; maintaining a consistent standard of care with the graduate orthodontic clinic at UBC; introducing a new set of residents into the clinics every year; coordinating schedules with the existing Haida Gwaii dental clinics so that other dental services are not disrupted; training appropriate staff to assume roles in orthodontic patient care and management; and collaborating with other dental specialties (pediatric care, oral surgery, and periodontics) to ensure that orthodontic care is delivered with consideration to the overall dental and general health and well-being of the patients. One of the most important considerations in developing a new university-based outreach program in a predominantly Aboriginal community would be the possible perception among community residents that they are being exploited or experimented on by students. To avoid this, developing and strengthening existing local partnerships would be essential. Partnering with local stakeholders such as the Haida Gwaii bands and collaborating with the newly established First Nations Health Authority would help to ensure that a culturally appropriate program is created to suit the needs and desires of the community. The existing relationships developed

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Orthodontic Treatment Need of Adolescents in the Island Community of Haida Gwaii, Canada • Asef Karim, Jolanta Aleksejuniene, Edwin H. K. Yen, Mario Brondani, Arminee Kazanjian with UBC dental students would aid as a successful foundation for new programs and increased services. Furthermore, engaging the schools and community centres to conduct orthodontic health education and promotion would provide more information and assist in improving oral health. With considerate and meaningful collaboration, a university-based graduate outreach program could be developed to help the Haida Gwaii dental clinics ensure that there are sustainable orthodontic services with a perpetual source of professional providers for care. Option 3: Haida Gwaii residents continue to go off island for orthodontic care. For Haida Gwaii residents, orthodontic services off island require time off school or work (on a regular monthly basis for a long period, usually two to three years), travel (by either plane or ferry), and potential lodging at a hotel. In addition, residents who do not have any dental insurance or government funding must cover the cost of the orthodontic treatment in addition to all the travel expenses associated with the dental appointments off island. Over time, patients may experience burnout from all of the trips off island and consequently may miss appointments. Absenteeism may delay completion of treatment. Ultimately, if compliance is poor, a patient’s treatment may be discontinued (either by the patient or by the orthodontist). Studies have shown that poor patient compliance results in treatment taking longer and can contribute to discontinuation of treatment (Beckwith, Ackerman, Cobb, & Tira, 1999; Fink & Smith, 1992; Fisher, Wenger, & Hans, 2010; Skidmore, Brook, Thomson, & Harding, 2006; Vu, Roberts, Hartsfield, & Ofner, 2008). Orthodontic emergencies (loose brackets, loose bands, loose or poking wires, or other problems) may be a challenge to address quickly when orthodontic care is off island. Such situations may create discomfort for the patient and have the potential to delay treatment. If patients choose not to complete their care, they may not fully benefit from the orthodontic treatment and their occlusion may not be stable in the long term. For the orthodontic provider, the termination of a case earlier than expected has several implications. First, it may be professionally dissatisfying to be unable to finish a case to the best of one’s ability. Second, the orthodontist may have lost valuable working time due to missed appointments from one patient that could have been devoted to other patients. Third, if an orthodontic provider is being reimbursed for care through a government program and the patient stops treatment, the orthodontist may lose revenue because payment through a government program is based on a structured schedule rather than being issued monthly (Health Canada, 2004).

Conclusions There is a need for specialty orthodontic treatment in the island community of Haida Gwaii based on the following:  According to the ICON, 43.7% of examined adolescents needed orthodontic treatment.  Of all examined, 31% of the adolescents had complex malocclusions to treat (16% very difficult; 8% difficult; 7% moderately complex).  Males had higher mean ICON scores than females (46.1 ± 26.6 versus 41.5 ± 25.9), though this difference was not statistically significant.  Males had more complex malocclusions than females (19% very difficult versus 13% very difficult), though this difference was not statistically significant. Currently there is not a dedicated orthodontist (local or fly-in) in Haida Gwaii; establishing such a practice would be the best option for this community. A reasonable alternative would be to

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model REVISED REFERENCES, 04/13/2016

Abstract This study examined interculturality of Indigenous Mapuche healthcare in Chile’s Makewe Hospital. We conducted a descriptive, qualitative, semi-structured, cross-sectional pilot study interviewing key stakeholders, resulting in 11 interviews of patients, Mapuche and occidental providers, public health professionals, administration, and community leaders. We focused on six topics: services and preferences, community participation, interculturality, access to culturally appropriate care, government integration of Indigenous culture and interculturality promotion, and the future of Indigenous care. All groups believed in the need for both kinds of care. However, for community participation, Mapuche indicated no knowledge of interculturality in healthcare, nor any participation, compared with some professionals who believed there was a focus on it. Interculturality expressed by respect for Mapuche ethnomedicine was uniform; however, integration did not appear to Mapuche as effective, whereas professionals and administration interpreted interculturality as a philosophical goal. Regarding culturally appropriate access, Mapuche responses were focused on practical issues, whereas administration and professionals responded by explaining exclusion of Mapuche machi providers as being sensitive to community desires. Government promotion of interculturality was uniformly agreed to be poor. Finally, the future of Indigenous care was seen by Mapuche both optimistically and pessimistically, due to concerns regarding general cultural preservation, whereas professionals emphasized the need to promote preservation. These results indicate a fractionated understanding of definitions and goals among stakeholders. Future policy should focus upon a broader group to implement interculturality, including nongovernmental organizations, academics, and cultural advisors, combined with community-based participatory research, to promote evidence-based, efficient policy efforts and implementation for interculturality in health for the Mapuche.

Keywords Intercultural healthcare, healthcare policy, Indigenous Peoples, Mapuche, Makewe Hospital, traditional medicine

Authors We note that with respect to author contributions, Elizabeth Lincoln (EL) conceived the study, and EL, Bryan A. Liang, and Tim K. Mackey jointly performed research, conducted analysis, and wrote and edited the manuscript.

Acknowledgements The authors would like to thank all the participants in this study as well as the community of the Makewe.

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Introduction The Mapuche are the largest group of Chilean Indigenous people (Park & Richards, 2007). Despite their numbers, they have faced tremendous social and economic challenges within the dominant Chilean society, including healthcare (Bolados, 2009). The concept of interculturalidad, or interculturality, is often emphasized by the Chilean government and policymakers in programs aimed at incorporating Mapuche culture into various sectors of Chilean society. Since interculturality began as a policy objective, the government has created intercultural offices and policies, including situating hospitals within predominantly Indigenous communities (Bolados, 2009). Interculturality has many definitions and interpretations, depending on context and applicability to particular segments of society. Intercultural health generally refers to methods used in the health sector to incorporate traditional Indigenous medicine and occidental (Western) practices in a complementary manner, emphasizing “mutual respect, equal recognition of knowledge, willingness to interact, and flexibility to change as a result of these interactions” (Mignone, Bartlett, O’Neil, & Orchard, 2007, n.p.). Overall, intercultural health attempts to incorporate and integrate use of traditional medicine within the public health system. The Chilean government has created various programs attempting to address existing health inequities of Indigenous populations lacking access to adequate healthcare services (Boccara, 2007; Organización Panamericana de la Salud, 199). Unfortunately, areas with the highest density of Indigenous people continue to have the worst health outcomes. For example, in the IX Region, which has the highest concentration of the Mapuche, health outcomes are the worst in the country (Rojas, 2007). This condition is exacerbated by socioeconomic inequities between the Mapuche population and their non-Mapuche counterparts, another key social determinant of health (Torri, 2011). Rojas (2007) asserts that persistent disparities among the Mapuche likely reflect a history of discrimination in healthcare provision, lack of culturally appropriate approaches, and ongoing economic disadvantages. Historical events that have led to the overall erosion of Mapuche culture in Chilean society has created the need to promote interculturality to the Mapuche community, specifically in healthcare. At the core of Mapuche medicine are the protocol and ceremonies of the machi, the Mapuche healer (Avendaño, 2013). Any system attempting to incorporate Mapuche ethno- medicine into its framework must involve machi authority. The intercultural hospital is one care- delivery model that has emerged to meet this demand. An example of this intercultural concept is the Makewe Hospital, which has attempted interculturalidad through a culturally competent model of healthcare. The Makewe Hospital is located in the territory of Padre Las Casas, where most of the population identifies as Mapuche. It is situated in a rural setting 12 km away from the nearest major city, Temuco. Of the approximately 10,000 people in the catchment served by the hospital, 95% are Mapuche. The hospital was founded in 1927 by the Anglican Church and since 1999 has been overseen by a local Mapuche Association (Boccara, 2002). The hospital’s services include specialized treatment programs for infants, adults, women, and the elderly, oral health, tuberculosis, as well as drug and alcohol addictions. The hospital also has programs for promotion and recognition of Mapuche identity, which includes training for physicians and involvement of community leaders within the hospital. Although the hospital is occidental, strategies to promote intercultural delivery system values include actively involving Mapuche in health policies; advising educators; and providing Mapuche patients with various comforts such as signs in Mapudungun (the Mapuche language), other bilingual

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey materials, comfortable rooms with culturally specific accommodations, and coordination of therapy and specialists (Turina, 2009). Workers at the Makewe Hospital have a special relationship with the machi in the territory and can assist patients with transport to the machi’s locations for treatment off site, which can otherwise prove to be an obstacle for patients who wish to use traditional treatment but lack transportation. Keeping the machi in his/her traditional locale is one way Makewe Hospital attempts to respect the machi within the appropriate and effective context, rather than in the occidental hospital setting (Torri, 2011). Despite such efforts, little is known of differing stakeholder perceptions of the relative effectiveness of this approach to interculturalidad among this Indigenous population, to gauge its possible application more broadly. Hence, we wished to determine views held by the Makewe Hospital’s patients, Mapuche and occidental providers, administration, public health professionals, and community leaders in regard to this model of interculturality. We did this by assessing these various stakeholders’ reactions to modalities of intercultural healthcare delivery.

Methods General Approach We employed a semi-structured qualitative survey to obtain descriptive information of preferences and perceptions of interculturality at the Makewe Hospital by those who use its services and are part of its infrastructure. We wished to obtain pilot information on patients, Mapuche and occidental providers, administration, community leaders, and public health professionals of the IX Region in Chile. These last professionals were surveyed to obtain a third- party perspective regarding the functionality of Makewe Hospital, relative to other policy objectives and hospitals in the area. Using a consensus process between investigators and Makewe Hospital administration, we identified several stakeholder groups to interview. These included Makewe patients in the community served by the Makewe Hospital, professionals from Servicios de Salud Araucanía Sur (Health Services of South Araucanía), a community representative, a lawentuchefe (Indigenous herbal expert), occidental hospital professionals, and the hospital director. Participants were recruited using a convenience sampling methodology and served as volunteers for the study. We note here that the participants as a group are not necessarily representative of the entire population, nor are individual participants representative of others in their stakeholder group; however, they fulfilled our overall goal of obtaining a diverse sample of perspectives and experiences of Makewe Hospital stakeholders. The interviews were performed in Spanish between May 11 and 22, 2013. They took place on site in the hospital users’ homes, at the Makewe Hospital for professionals and community leaders, and in the city of Temuco, Chile, for the health service professionals. This region was selected for its high concentration of Mapuche and the presence of the rural community of the Makewe Hospital. The result was 11 interviews of various individuals, carried out by one of the authors (EL) who was temporarily living in the community. These interviews were then transcribed, analyzed, and separated into themes by the interviewer.

Survey Instrument The survey is reproduced in Appendix A. A semi-structured interview approach was adopted. The structured questions served as a guide in combination with open and follow-up

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey questions, depending on responses. For each participant, the interviewer used a series of questions that were subject to change or modified in order to remain appropriate for the position and experience of the respondent. The questions were predetermined and edited with assistance of the hospital director, as well as academic professionals from SIT World Learning to ensure cultural sensitivity and appropriateness. No monetary incentive was provided. In some cases, a recorder was used during an interview, and in others, the interviewer took notes, depending on the respondent’s preferences as determined at the beginning of each interview.

Analytic Approach We were interested in exploring the following topics in this work: services and preferences, community participation, interculturality, access to culturally appropriate care, government integration of Indigenous culture and interculturality promotion, and the future of Indigenous care. We then constructed themes encompassing those topics with at least seven of the 11 interviewee responses. Within these themes the responses of groups such as users, occidental health professionals in the hospital, health service professionals, and community leaders are hence reported. “Community leaders”, when used collectively, refers to the Hospital Director, community representative, and lawentuchefe participants. After the interviews, themes (in the table below) were created based on participant’s responses. Ethics We employed informed consent principles from SIT World Learning, as an introduction before interviews (Appendix B). The project also received Institutional Review Board approval in Chile through officials associated with SIT World Learning. The IRB documentation was completed before the study was conducted, detailing in both English and Spanish the specific project proposal, the informed consent process the interviewer intended to pursue, instructions to participants, an interview guide with detailed questions, and the survey instrument. We did not use a signature form for documenting informed consent for Mapuche interviewees because such systems are not deemed acceptable in the Mapuche culture. To respect these norms, the interviewer obtained informed consent orally from subjects before the interviews. This method of obtaining informed consent in a culturally appropriate manner was specifically reviewed during the IRB approval process. The informed consent process employed an introduction for each interview explaining the nature of the study, the anonymity of responses, and the ability for the subject to refuse to participate or to terminate participation at any time.

Results Interviewees and Themes We interviewed 11 individuals for this study. Interviews lasted between 20 and 60 minutes depending on responses. The subjects included three hospital professionals (one general practitioner, one psychologist, one social worker), three hospital users (patients), the hospital director, two health service professionals from Servicios de Salud Araucanía Sur, one lawentuchefe, and one Indigenous community representative (dirigente comunitario). We found that all six identified themes of interest were discussed by a majority of respondents in this study (Table 1). This did not vary with respect to Mapuche versus non- Mapuche respondents, professional status, or patient status.

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Table 1 Perspectives of Interviewed Stakeholders on Six Themes Relating to Culturally Appropriate Healthcare in Makewe Hospital, Chile (Translated from Spanish)

Theme 1: Two Systems of Care Interviewee Comment User X “I prefer both services, I use both.” “You can only use the machi for ‘the evil.’” “I go to the hospital exclusively for bone pain, cancer, blood issues, breast cancer.” User Y “I have never used the services of the machi, but when my father was sick we went to the machi two times.” User Z “It depends on how I feel. I go to the hospital for stomach pain, but if I take pills and the pain still exists, I go to the machi.” Social Worker “Personally, I do not go to the machi. I am agnostic.” General Practitioner “I have never gone to the machi, I only use occidental medicine, but I accept that my patients use the Mapuche medicine and the machi.” Health Service Professional X “Both, depending on the illness. If I have an infection, I go to the occidental hospital. If it is of the Mapuche origin, I go to the machi.” Health Service Professional Y “The hospitals need to respect the equilibrium. When it is necessary, go to the machi or the doctor. But, in my opinion, none of the systems can improve the health completely without the help of the other, we need each other.” Community Representative “We prefer both, depending on the family.” Lawentuchefe “I am not against pills, I understand that they can help, but in small doses and small quantity, because the person can become dependent on them. We forget that we are not made of metal, we are made of sensible elements within our bodies, and yes they will be thrown out [wasted]. I am sure that what will improve the hypertension will surely give us a gastric ulcer, a stomach ulcer, and if not it will turn into cancer. This is, more than anything, my message: Use the pill on the first day in smaller quantity, because it will have a rapid effect, and you will soon forget the pain. But after that use the herbs, because the herbs will make you better in a way that is not caused by medication, it will improve it more effectively. So treat first with the pills, and afterwards with the herb.” Hospital Director “I know when I need to go to one and when I need to go to the other.”

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Theme 2: Impressions of Hospital or Machi Interviewee Comment User X “[Makewe Hospital] needs a machi in the hospital. The machi is too far. The vehicles bring the people to the machi, but it is better in the hospital.” User Y “The doctors have always been very nice to me at Makewe.” “I do not feel different in Makewe than other hospitals. I do not have this experience [of interculturality].” User Z “The doctors are good, they accept the Mapuche medicine.” “There aren’t any problems.” Social Worker “You have to know the territories; … the criticism is, how do we demonstrate a complementary hospital? … They protect the protocols.” General Practitioner “Makewe Hospital is the most near to the Mapuche population. We are poor in infrastructure and resources, and there are many policies, but it is close to the community.” Psychologist “This program is not intercultural. Because the government brings the same program here as in Arica, all the way to Punta Arenas. We do not have the requirements to be intercultural.” Health Service Professional X “They never wanted a machi in the hospital, and they do not have one.” “Makewe is special, within the community.” Health Service Professional Y “And the hospital can help the people to evaluate the machi in their location of value, not in the hospital.” “For Makewe, their energy is not in the hospital, health is in the community.” Community Representative “Makewe has the best health system in this territory.” Lawentuchefe “Good in the sense that there is no discrimination, there is respect. They do not interfere in what I do. […] There are some that are completely the contrary, and say that, ‘yes, take advantage of the herbs.’” Hospital Director “What happens is that each community has its own autonomy, with its lonkos, it has its people who decide, and if there is a transgression, in terms of bringing the machis to the establishments of occidental health, someone will pay for the transgression. I pay for mine [transgressions].”

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Theme 3: Challenges Interviewee Comment Social Worker “We have culturally appropriate locations to welcome these people [older people of the community]. This role is not private, this is the role of the state. We have a role as a state, as a society. The state gives us resources, and the state has to give them to the most vulnerable people.” General Practitioner “The challenges are because we cannot do the exams, we need to wait and we tell our patients that they need to go to Temuco for their exams. Other challenges are the poverty in the community, problems with child nutrition, and a lot of alcoholism in this region, too.” Psychologist “The program of mental health that is established here is very oriented to the statistics, the numbers, and not to the reality of the population. … There should be more intervention. … Here the work is, for example, 80% here and 20% in the community; it should be at least 50/50.” Health Service Professional X “For Chile in general, there have been initiations in different establishments with intercultural advisors and facilitators, and space for interculturality within the hospital. In some there are more, in others none—it depends heavily on the directors. The directors need to be the initiation of the intercultural program, but we currently lack more people for this.” “To improve the inequality, so that the advisors have good teams, and more respect in the system. I try to organize the advisors.” Health Service Professional Y “The most important is the formation of the conscience, especially for the chronic illnesses, because they are not defined in Mapuche terms, it isn’t Mapuche in nature, it is of the occidental world. Then the occidental world needs to communicate in a clear manner for the Mapuche people.” Community Representative “We have good communication, familiarity, our community is familiar and communal. But we lack the economic resources, the money, the instruments for the doctors.” “The users do not understand our mission […] but they are happy with the system.” Lawentuchefe “Personally, I think that there is no interculturality because to have interculturality there needs to be rights.” “Nothing is Mapuche.”

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Hospital Director “The people are not content with the lack of specialists. […] On the other hand, we put our position within the Mapuche medicine, that the people have the possibility to obtain their own remedies.”

Theme 4: Government Interviewee Comment Social Worker “Unfortunately, poor … I believe that in the next few years, a political orientation will incorporate the concept of interculturality. […] There is a reality in the countryside that is distinct from the city.” General Practitioner “Yes, there is governmental assistance [but] … none are effective.” Psychologist “The government brings the same program here as in Arica, all the way to Punta Arenas. We do not have the requirements to be intercultural. But, yes, what we can do is to be open to this, to facilitate it, to understand it, and to comprehend the traditional medicine.” Health Service Professional X “The government helps with a quantity of resources for cultural advisors, but it depends on the municipality. There are enough programs, and they work decently well. Sure, there is a policy there. Also, there is an opening, to have people with true understanding of the Mapuche, and to create satisfaction.” Health Service Professional Y “In the government, one has gained the space in this era [for intercultural programs/attention]. The truth is that we have two systems of healthcare in Chile, and we have factors to protect. It is all complementary, all in the duality of the Mapuche worldview. Our survival and understanding is alive.” Community Representative “The politics are complicated, there isn’t much to say. They say one thing and do another.” “Our interaction with nature is very important, but they [the government] always take the economic perspective and disregard respect for our land.” Lawentuchefe “Every government that comes here tells the foreigner that they have here the Mapuche culture, that a community is given millions of dollars for beneficiary programs for the Mapuche, but I don’t see it. I will give you an example. They are talking about how they are forming a subsidy of land for the Mapuche community. What land subsidies? The land is ours. They took the land away from us. From 100% of the land, we have 5%. So the land is not subsidized. It is not a subsidy.”

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Hospital Director “The state looks at us as numbers, the people, not as people. So the state is a cold state that doesn’t care if the people are poor.” Theme 5: Definitions of Interculturality Interviewee Comment Social Worker “It is important to have a compromise that this person needs healthcare, within their capacity to receive it.” General Practitioner “The relationship between doctor and patient is the most important, for a personal relationship of the two cultures and worldviews, because they have the same objective, their objective is progress in the health of the person. The [Mapuche] society, according to the community, accepts the differences [in systems of medicine] for the human relations.” Psychologist “When one is offered interculturality, it is noted, and they like it, but you have to show it. When it is presented to them, they value it. In this moment one remembers that it exists, and they appreciate it, and they use it, they ask for it.” “I don’t have very much clarity with respect to interculturality, but from what I understand, the best comparison is with the Mapuche because they are intercultural …and this I have learned a little here, day by day. The most important is to understand them, in the totality of the word.” Health Service Professional X “The importance of interculturality is to truly understand the Mapuche culture—or other Indigenous groups—it is not only to understand the machi, but his or her protocol, the worldview of the Mapuche, too.” Community Representative “The medical team needs to work together and accept the Mapuche preferences.” Lawentuchefe “Personally, I think that there is no interculturality because to have interculturality there needs to be [human] rights.” Hospital Director “What we want is that the complementary method is to improve the quality of life of both populations; there does not exist another interest.” “The interculturality I understand is not only the respect, but whoever wants to speak about interculturality should speak by actions and should practice it every day.”

Theme 6: Future Interviewee Comment User X “If the parents do not talk with their kids, the medicine will disappear. That is why we talk a lot with our kids about the medicine and culture of the Mapuche.”

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“Makewe helps to avoid the loss of culture and medicine for the Mapuche.” User Y “I am scared that no one will know about the herbs, and they will only go to the hospital. It is bad for themselves [the young people] because they should know. But there will always be plenty of people looking for remedies and they will use Mapuche medicine.” User Z “I hope that the medicine continues [to be used] and is valued; I don’t worry, the medicine is well established. For the young people, it depends on their parents: if they have the rights to use it, they will not pay attention to use it.” Social Worker “In some areas it is maintained, in others it isn’t. But more than this, the people have the ideas of the city [as opposed to the countryside]. My vision for the future is that where there are machis, where there are lonkos, one will maintain the culture. Where there is one, it is much stronger than the culture that, for example, we have surrounding the hospital.” General Practitioner “The Mapuche medicine has a lot of value in the community, but it is very traditional and it is not going to change; there are never changes in the treatment. The strength is to maintain the traditions for the people.” Health Service Professional X “The preservation of the Mapuche medicine depends greatly on the community: the adolescents, the machi, the lonko. All of the people are involved in the process to preserve it; the protection of the areas with Mapuche medicine, and to protect the forest is very important.” Health Service Professional Y “The system [of interculturality in health] currently works for definite protection, to defend the Mapuche medicine. The problem is the lack of native plants, and now the machis cannot find the plants that they need. […] Because of the destruction of land … the food now has more fat, cholesterol; now this is accessible but bad for our health. But I think that our culture is strong, and we will advance.” Community Representative “We always return to the topic of the land. It is impossible to have representation because our system is very focused on the state. The politics are not public, we do not have senators, and on the political scale there are the politicians, afterwards the Chileans, and lastly the Mapuche. We live in a planet [world] that is far from the land.” Lawentuchefe “What will happen with the reduction of land, because the cake is being divided, for me, for my brother, but the part for me, for my kids and their kids, they won’t have

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anything. If we have an animal, where will we raise it? I will preserve the medicinal herb there in my land, and I will not eat? So the issue needs to be evaluated. Or to clean the land, and sacrifice the medicinal plants, and cultivate food to eat? Or to leave the medicinal plants as they are, and not cultivate anything, and die of hunger?” Hospital Director “I believe that this will be the next conflict between the state and the Indigenous groups of Chile. … In the future, because if we maintain our stance firmly, in what we want, in what we want to do, we will maintain it. If the contrary happens, we will suffer.”

Services and Preferences We found somewhat unexpected agreement across professional, administrative, and Indigenous user respondents with regard to services and preferences. All Makewe Hospital users, health service professionals, and Makewe community leaders preferred both healthcare system delivery options: Mapuche and occidental. This perspective appeared driven by context; all subjects identified different situations of necessity for Indigenous versus occidental care. For example, one user indicated the Indigenous machi’s services are used when one has mal (evil), while she indicated other situations and conditions more appropriate for occidental treatment (User X, Table 1, Theme 1). The only respondents, who said they do not use the Mapuche health system, or the machi, were occidental professionals of Makewe Hospital (none of the three interviewees who were healthcare providers identified themselves as Mapuche). In another interesting finding, the lawentuchefe discussed the presence of new disease states in the Mapuche. He observed that these previously perceived non-endemic diseases, known as winka diseases, had been impacted by changing cultural dynamics leading to the recognition of these new disease states in the Mapuche community. These diseases include diabetes, cancer, obesity, and HIV/AIDS. Consequently, he does not advocate for occidental medicine but accepts its necessity within the community and advocates complementary use of both:

I am not against pills, I understand that they can help, but in small doses and small quantity, because the person can become dependent on them. We forget that we are not made of metal. … This is, more than anything, my message: Use the pill on the first day in smaller quantity, because it will have a rapid effect, and you will soon forget the pain. But after that use the herbs, because the herbs will make you better in a way that is not caused by medication, it will improve it more effectively. So treat first with the pills, and afterwards with the herb. (Table 1, Theme 1)

Community Participation Indigenous users provided a mixture of responses regarding Indigenous community participation at the Makewe Hospital. Users generally had positive impressions of the hospital and were satisfied with its system and healthcare delivery. However, respondents indicated they were not aware of any intercultural work carried out by the hospital or government... The medical and health service professionals, in contrast, described the Makewe Hospital as having a focus on interculturality and close relationships with the local Indigenous community. This contrast may reflect the fact that interculturalidad is a Western concept and

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey therefore not a term or concept Mapuche patients recognize separately or within the healthcare delivery context. Similar differences arose between Western professionals. When interviewing the Makewe Hospital social worker and psychologist, the former discussed modifications the hospital made to accommodate ancianos (older people of the community) as an effort to engage the Indigenous people. He also discussed how important it is for Chile to allocate resources to communities to allow them to assist vulnerable Indigenous populations there. In contrast, the psychologist interviewee indicated the distinct lack of interculturality in the hospital’s mental health program, which is primarily run by the national government. He stated that government overgeneralization of Indigenous Peoples is the primary factor preventing a culturally appropriate health delivery system. He stated, “Because the government brings the same program here as in Arica, all the way to Punta Arenas[,] [w]e do not have the requirements to be intercultural” (Table 1, Theme 2). Thus, there appears to be a lack of agreement even between occidental stakeholders regarding interculturality and its integration success at Makewe Hospital. With regard to community participation, Indigenous community leaders expressed that the Mapuche community respected work done by the hospital. However, they did not discuss any active community-based participation in developing and integrating Mapuche identity into hospital operations or programs. Yet, the hospital director, a Mapuche, was more inclusive in his interpretation of “community”; he indicated that the hospital’s mission always involves the community and saw inclusion of Mapuche as within the scope of broader community participation. This may or may not comport with the broader Indigenous stakeholders’ perspectives, given the limited mention of community engagement by individual Indigenous users, as well as the integration of the Mapuche hospital director into occidental systems, its norms, and its cultural assumptions.

Interculturality When directly discussing the concept of interculturality, all respondents indicated there is respect for Mapuche ethno-medicine within the Makewe Hospital. However, substantive integration of Indigenous care services does not appear to exist. Administrators expressed interculturality as a goal or philosophy rather than a reality based on actual care integration; for example, the hospital director stated, “The interculturality I understand is not only the respect, but whoever wants to speak about interculturality should speak by actions and should practice it every day” (Table 1, Theme 5). The lawentuchefe indicated his work at the hospital (now terminated due to lack of funding) represented an aspect of interculturality, but he did not believe the concept actually exists presently due to lack of respect or empowerment of Mapuche medicine by the occidental world. He stated, “Personally, I think that there is no interculturality because to have interculturality there needs to be rights” (Table 1, Theme 3). The views of Mapuche patients may indicate potential for interculturality, as by the respect accorded traditional medicine, but limited as an unfamiliar occidental notion, because none of the users specifically recognized or referred to the concept in interviews. Overall, results indicate that users are satisfied with the health system at the intercultural Makewe Hospital but do not perceive that it is different as a result of its efforts at being intercultural.

Access to Culturally Appropriate Care When assessing practical aspects of Indigenous care, Mapuche patients noted at least some access to Indigenous-based care at Makewe Hospital. Indigenous interviewees frequently expressed opinions concerning practical aspects related to the absence or presence of a machi in

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey the hospital. For example, User X said she would like a machi to provide services within the hospital because transport to the machi is often too difficult. In this context, it is important to note the difference between Indigenous care access—the ability to receive traditional Mapuche remedies within the hospital (including access to a machi)—versus Indigenous accommodative access—changes made to provide access and comfort of Indigenous users receiving occidental care. Hence, it appears that accommodative access rather than intercultural Indigenous care access is the norm at Makewe Hospital. The professional participants had similar perceptions of access to culturally appropriate care—focused on the presence of machi. For example, the hospital director, lawentuchefe, social worker, and health service professionals all had justifications for Makewe Hospital’s policy to exclude machi. These interviewees discussed the need for preservation of machi traditional protocol outside the hospital. In a more indirect fashion, the hospital director emphasized the autonomy of the community in keeping the machi in his/her own location, rather than in the hospital—a foreign, occidental establishment that may potentially alter the effectiveness of machi treatment. This is in contrast with at least one Mapuche patient who indicated Indigenous care access within the hospital would be desirable.

Government Integration of Indigenous Culture and Promotion of Interculturality in Health Consistent and significant dissatisfaction was expressed across stakeholders regarding government activities promoting Indigenous care integration as part of interculturality. Similar to sentiments expressed in a survey by Organización Panamericana de la Salud in 1996, none of the interviewees were content with governmental support for intercultural health programs generally, nor specifically for initiatives at Makewe Hospital. Even occidental professionals, who recognize and support health ministry programs, indicated “none [of the intercultural programs] are effective” (General Practitioner, Table 1, Theme 4) and that programmatic rules are not community oriented (Psychologist, Table 1, Theme 3), despite the importance of public health as the government’s role, especially in providing resources for the most vulnerable citizens (Social Worker, Table 1, Theme 3). The social worker bluntly described government assistance as “unfortunately, poor” (Table 1, Theme 4), although he (and other professionals) seem optimistic for the future. No Indigenous respondent expressed such optimism. Health service professionals recognized the need for the government to improve aid for Chile’s Indigenous groups. They expressed more optimism for aid and effectiveness of programs than respondents directly engaged in or receiving healthcare services, including administrators, occidental professionals, and the Makewe community leaders. The latter note the misinterpretation of the Mapuche culture and their lower socioeconomic status in Chile as a primary problem and reason for limited responsiveness of government. Similarly, the Mapuche community representative, hospital director, and lawentuchefe are less sanguine regarding government intercultural efforts. Most have had negative interactions with governmental representatives, whom the lawentuchefe described as attempting to resolve complex issues with simplistic solutions such as misplaced land subsidies and a strict economic perspective on the issue. By the same token, these respondents often identify the greatest challenges for the hospital as being financial. Almost every response to the question about challenges resulted in commentary about the lack of financial resources for Makewe Hospital from the government. Descriptions of limited financial resources often led to discussions about the reduction of land for Mapuche and lack of government support for integration of Mapuche perspectives, needs, and communities. The lawentuchefe concluded, “nothing is Mapuche” in

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey reference to the lack of Mapuche culture in schools and governmental representation (Table 1, Theme 3). He also noted that limited cultural understanding might lead to communities’ loss of Indigenous medicine and even survival. He asked:

What will happen with the reduction of land, because the cake is being divided for me, for my brother, but the part for me, for my kids and their kids, they won’t have anything. If we have an animal, where will we raise it? I will preserve the medicinal herb there in my land, and I will not eat? So the issue needs to be evaluated. Or to clean the land, and sacrifice the medicinal plants, and cultivate food to eat? Or to leave the medicinal plants as they are, and not cultivate anything, and die of hunger? (Table 1, Theme 6)

Future of Indigenous Care The future of Indigenous care integration was also a prominent topic and evoked a variety of responses. On one level (similar to discussion of the lack of financial resources) many remarked on the history and future of the Mapuche population, and their struggle for equity, rights, and especially land in Chile. For example, the Mapuche community representative commented,

We always return to the topic of the land [when talking about Indigenous culture]. It is impossible to have representation because our system is very focused on the state. The politics are not public, we do not have senators, and on the political scale there are the politicians, afterwards the Chileans, and lastly the Mapuche. We live in a planet [world] that is far from the land. (Table 1, Theme 6)

On another level, there was a mix of optimism and pessimism among the patients, specifically about ethno-medicine; they are concerned that Mapuche medicine will disappear, but they have confidence that if the traditions have a space within each home and family, it can nevertheless be preserved. The social worker and general practitioner were also hopeful Mapuche medicine will not disappear, because these traditions are strong, and as long as there are lonkos (traditional leaders) and machis in the community, there will be a Mapuche culture and hence its form of ethno-medicine. The health service professionals focused on preservation of Mapuche medicine as a community responsibility. For Health Service Professional X, similarly, the future is deemed dependent on this community conscientiousness, but primarily for adults to focus on the preparation of the environment for the next generation of their Indigenous communities. While the lawentuchefe discussed his fears for the future of Mapuche medicine, the hospital director predicted that the conflict between the Mapuche and the Chilean government will be more important in affecting the future of Indigenous care.

Limitations This study represents pilot work assessing Indigenous–occidental interculturality efforts in a single facility for the Mapuche. Low sample size may limit the generalizability of the findings. It could, however, provide a baseline of stakeholder perceptions useful contextually in additional work. In the future, studies looking to further explore this issue in detail should aim for a larger sample size of participants. Further, because we are not members of the Mapuche, our relationships with the Mapuche may have resulted in different responses than if we were part of the Indigenous group.

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As well, our cultural heritage originating outside Chile could also influence our ability to obtain relevant perceptions of stakeholders and to fully interpret the findings. A common public health bond and fluency in Spanish of the interviewer may have mitigated this concern somewhat. Finally, the concept of interculturality may itself be a limitation, because many of the Mapuche population do not recognize this predominantly occidental concept. We sought to assess characteristics of importance such as access and perceptions of satisfaction to address this concern, but there may be other factors and characteristics that are more important for the Indigenous Mapuche hospital users, or there may be alternative concepts within the Mapuche culture that express satisfaction for cultural efforts more appropriately. These are areas for additional work in this and other Indigenous settings.

Discussion In our stakeholder interviews regarding interculturalidad and perceptions of the intercultural healthcare delivery model applied by the Makewe Hospital, we found Mapuche users, community leaders, and professionals are interested in using both the occidental and traditional methods for healthcare needs. We found that the Makewe Hospital experiences difficulties in supporting its mission and intercultural initiatives, owing primarily to economic deficiencies as well as generalization of policies that do not leave professional time for community pertinence. Additionally, as is shown in Makewe Hospital’s decision to exclude the machi from the hospital, with both support for and complaint about this form of access by Indigenous users, Mapuche communities are not uniform in opinion and make decisions based on their autonomy and unique perspectives. We found none of the interviewees are content with the current government aid, nor efforts to engage in interculturality, although professionals at the government’s Servicios de Salud Araucanía Sur were more positive on the issue. Fundamentally, it seems poorly understood. Mapuche diversity and perspectives appear to have limited acceptance or understanding within government and occidental entities, which may be thwarting effectiveness of programs designed to promote interculturality. Indeed, it appears there is no universal agreement across stakeholders as to interculturality, Mapuche ethno-medicine locale, or success in implementing intercultural programs in the Makewe Hospital. Perceptions of medical and public health professionals were much more optimistic regarding interculturality than those of Indigenous patients themselves. But even among healthcare providers there was discord, with social worker and psychologist perceptions of interculturality engagement diverging. Even the fundamental concept of access to culturally appropriate care differed, focusing upon the need for machi to remain outside the hospital for cultural reasons; however, at least one user indicated the practical need for lawentuchefe in the hospital while another pointed to transportation concerns to receive such care. Consequently, Mapuche Indigenous care is at a crossroads. Joint Mapuche and occidental care is accepted by most but does not appear to have been effectively implemented in practice or to jointly agreed-upon standards. Fragmented stakeholder perspectives regarding participation, the intercultural concept in healthcare, and needs of the community seem to have resulted in different goals amongst stakeholders. To promote and achieve goals of Mapuche interculturality in healthcare, first, using the Makewe Hospital’s experience, Indigenous health policy should have a broad community focus rather than a narrow hospital-based one for providers. Whether it is an urban, mixed, or rural community, each professional and worker in the hospital should have relevant training

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey concerning the worldviews, lifestyles, preferences, and practices of the local Indigenous community and society they serve. Professionals must understand the people of the community and their context (i.e., the mix of cultures, preferences, and practical concerns), and should consistently involve community members. Doing so can develop shared expectations through participation, understanding, and respectful governance systems, and can favor success as defined and agreed upon by these groups. For generalizable and evidence-based policy, these efforts should mirror ongoing engagement in community-based participatory research in global health that aims to improve health and quality of life in local communities (Betancourt, Green, & Carillo, 2002; Godkin & Savageau, 2001). Governments should also shift their limited partner engagement to broader community entities in countries such as Chile, where intercultural efforts such as the Program of Integral Development for Indigenous Communities, also called Origenes, are a mainstay. Yet past sponsored programs, including those in the Makewe Hospital, are largely absent of Indigenous representation, as noted in this study, and have limited coordination of community resources. By using partnerships that include civil society, nongovernmental organizations, academia, and the private sector, a full collaborating group of stakeholders and activities can result in continual evaluation, feedback, and improvement in ethno-medicine-focused healthcare delivery models (Liang, 2011; Mackey & Liang, 2012). For example, specific sensitivity training can integrate these groups in the orientation and continuing education of hospital providers and staff (Cianelli et al., 2008). Beyond simple “Mapuche identity” efforts, integrating nongovernmental organizations, academics, and others with experience in Indigenous and occidental health settings can facilitate mutual communication and engagement, particularly between providers from each, and establish respect within the team of health professionals and with the community, including its individual members (Bacigalupo, 2007; Cianelli et al., 2008). Expanded use of asesores culturales, or cultural consultants, should also be explored (Nicholson & Schmorrow, 2013). In our data, one health service professional did refer to this concept, and its drawbacks, in the Chilean system:

For Chile in general, there have been initiations in different establishments with intercultural advisors and facilitators, and space for interculturality within the hospital. In some there are more, in others none—it depends heavily on the directors. The directors need to be the initiation of the intercultural program, but we currently lack more people for this. (Health Service Professional X, Table 1, Theme 3)

Dedicating additional resources for cultural advisors may hence be a key component moving toward an equitably balanced healthcare system. In addition, professional engagement and government policy should integrate protected, additional time for Indigenous activities promoting interculturality. This avoids challenges to time (as well as financial) resources that may assume allocated periods based on occidental encounters are adequate for Indigenous patients. With Indigenous-based, reserved, integrated, community-focused time, professionals can tailor interculturality approaches to the reality of the community and mix of people(s). We emphasize, however, that generalization of policies must be sensitive to the communities at hand—their specific context. Policies cannot consider all “Indigenous Peoples” or “vulnerable groups” homogeneously; discrimination can occur when assuming all underserved populations have the same needs. Indeed, underserved groups such as the Mapuche are the most

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Interculturalidad and Chilean Health: Stakeholder Perceptions and the Intercultural Hospital Delivery Model • Elizabeth Lincoln, Bryan A. Liang, Tim K. Mackey vulnerable due to their economic inequality, and consistently have poor health status (Rojas, 2007). As a general matter, addressing their needs will require additional resources. Yet the Mapuche themselves have a spectrum of differing needs, requiring acknowledgment of the unique context driving the needs of specific Mapuche communities. Each is dependent upon other critical factors such as location (e.g., the Makewe Hospital is in a rural setting), resources, and public health needs in that community. Employing policies permitting flexibility by community, while simultaneously encouraging intercultural sensitivity, should be prominent in programmatic efforts. This, too, is an area for potential inclusion and integration of academic and global health community resources.

Conclusions The study of the interculturality model of Makewe Hospital is ultimately the study of the traditional Mapuche community in today’s society. The challenge of integrating an Indigenous perspective into public health and the healthcare system is reflective of policymakers attempting to integrate an Indigenous People into occidental governance and healthcare norms while attempting to maintain cultural identity and heritage. Interculturality, consequently, requires a multitude of resources and a shared sense of ideals. Hence, employing a broader set of engaged participants may promote policy goals in interculturality in healthcare.

References Avendaño, F. M. “Sistema de Salud Mapuche” Public Lecture at Makewe Hospital, Temuco, Chile, [Month, Day, 2013].

Bacigalupo, M. (2007). Shamans of the foye tree: Gender, power, and healing among the Chilean Mapuche. Austin: University of Texas Press.

Betancourt, J. R., Green, A. R., & Carillo, J. E. (2002). Cultural competence in health care: Emerging frameworks and practical approaches. New York: Commonwealth Fund.

Boccara, G. (2002). The Mapuche People in post-dictatorship Chile. Études Rurales, 163–164 (Terre, Territoire, Appartenances), 283–304.

Boccara, G. (2007). Etnogubernamentalidad: La formación del campo de la salud intercultural en Chile. Chungara: Revista de Antropología Chilena, 39(2), 187–207. doi:10.4067/s0717-73562007000200003

Bolados, P. (2009). ¿Participación o pacificación social? La lógica neoliberal en el campo de la salud intercultural en Chile: El caso Atacameño. Estudios Atacameños, 38, 93–106. doi:10.4067/s0718-10432009000200007

Cianelli, R., Ferrer, L., Cabieses, B., Araya, A., Matsumoto, C., & Miner, S. (2008). HIV issues and Mapuches in Chile. Journal of the Association of Nurses in AIDS Care, 19(3), 235– 241. doi:10.1016/j.jana.2008.03.002

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Godkin, M. A., & Savageau, J. A. (2001). The effect of a global multiculturalism track on cultural competence of preclinical medical students. Family Medicine, 33(3), 178–186.

Liang, B. A. (2011). Global governance: Promoting biodiversity and protecting Indigenous communities against biopiracy. Journal of Commercial Biotechnology, 17(3), 248–253. doi:10.1057/jcb.2011.16

Mackey, T., & Liang, B. A. (2012). Integrating biodiversity management and Indigenous biopiracy protection to promote environmental justice and global health. American Journal of Public Health, 102(6), 1091–1095. doi:10.2105/ajph.2011.300408

Mignone, J., Bartlett, J., O’Neil, J., & Orchard, T. (2007). Best practices in intercultural health: Five case studies in Latin America. Journal of Ethnobiology and Ethnomedicine, 3(31). doi:10.1186/1746-4269-3-31

Nicholson, D. M., & Schmorrow, D. D. (Eds.). (2013). Advances in design for cross-cultural activities. Part II. Boca Raton, FL: CRC Press.

Organización Panamericana de la Salud. (1996). Primer Encuentro Nacional Salud y Pueblos Indígenas: Hacia una Política Nacional Intercultural en Salud. Servicio de Salud Araucanía IX Región, Ministerio de Salud.

Park, Y., & Richards, P. (2007). Negotiating neoliberal multiculturalism: Mapuche workers in the Chilean state. Social Forces, 85(3), 1319–1339. doi:10.1353/sof.2007.0050

Turina, B. J. (2009) Historia Hospital Makewe. Biblioteca Ministerio de Salud. Gobierno de Chile. 1-16.

Whitehead, M. (1990). The concepts and principles of equity and health. Copenhagen: World Health Organization.

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Appendix A: Survey for Makewe Hospital Stakeholder (Translated from Spanish) I. Introduction: Hello, my name is Elizabeth and I am a student here in Chile for the semester. I study public health, and for one month I have the opportunity to conduct research on a topic of my choice. I am studying the concept of interculturalidad in this community. I hope to learn how the health system of Makewe Hospital functions and how it appears to the patients, doctors, and other health workers in the community. If you are comfortable, I would like to speak with you in order to learn more regarding your opinion of the efficacy of Makewe Hospital and your experiences there. If you are not comfortable with any questions at any moment, please tell me and we will stop the conversation. I will not use any of your responses or name without your consent.

II. Interview Guide Users 1. How many years have you used the services at Makewe Hospital? 2. In general, do you prefer to use the services in the hospital, the services of the machi, or a combination of the two? 3. On average, how many times per year do you use the hospital services? 4. What type of services do you use in the majority of your visits to Makewe Hospital? Your treatment with the machi? 5. How do you feel about your experiences with the doctors of Makewe Hospital? 6. How would you characterize the quality of services in the hospital? Which aspects need the most improvement? What are the best aspects? 7. Can you compare your experience in Makewe with other hospitals? 8. What are your projections for the future of Mapuche medicine? Do you think that hospitals like Makewe Hospital help the Mapuche preserve their medicine?

Occidental Professionals 1. Where did you complete your medical training? 2. What is your specialty or title? 3. How many years have you worked at Makewe Hospital? 4. Why did you choose to work at Makewe Hospital? 5. For your own health, do you prefer the hospital or the machi? 6. How would you characterize the quality of services in the hospital? 7. How do you feel about the importance of having a hospital with the philosophy of Makewe Hospital? 8. How would you characterize governmental assistance for the philosophy of Makewe Hospital? 9. What are the greatest challenges for a professional at Makewe Hospital? 10. Do you have experiences in other hospitals? How would you compare other hospitals to Makewe Hospital? 11. Have you seen a change in the preferences of Mapuche patients for treatment with the presence of Makewe? 12. How do you define your own concept of interculturalidad? 13. Do you think that the model of Makewe Hospital could potentially function in other locations in Chile or for other Indigenous groups?

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14. How do you feel about the future of Mapuche medicine? 15. How would you characterize community participation for the administration of Makewe Hospital, or other projects with the goal of interculturalidad?

Community Representatives/Lawentuchefe 1. What is your speciality or title? 2. How many years have you worked with Makewe Hospital? 3. Why did you choose to work for Makewe Hospital? 4. For your own health, do you prefer the services of the hospital or the machi? 5. How would you characterize the quality of services in the hospital? 6. How do you feel about the importance of having a hospital with the philosophy of Makewe Hospital? 7. How would you characterize governmental assistance for the philosophy of Makewe Hospital? 8. What are the greatest challenges for your work with Makewe Hospital? 9. Do you have experiences in other hospitals? How would you compare other hospitals to Makewe Hospital? 10. Have you seen a change in the preferences of Mapuche patients for treatment with the presence of Makewe? 11. How do you define your own concept of interculturalidad? 12. Do you think that the model of Makewe Hospital could potentially function in other locations in Chile or for other Indigenous groups? 13. How do you feel about the future of Mapuche medicine? 14. How would you characterize community participation for the administration of Makewe Hospital, or other projects with the goal of interculturalidad?

Professionals from Servicios de Salud Araucanía Sur 1. What is your specialty or title? 2. How many years have you worked in the healthcare field? 3. Why did you choose to work in this field? 4. For your own health, do you prefer the services of the hospital or the machi? 5. How would you characterize the quality of services and reputation of Makewe Hospital? 6. How do you feel about the importance of having a hospital with the philosophy of Makewe Hospital? 7. How would you characterize governmental assistance for the philosophy of Makewe Hospital? 8. What are the greatest challenges for your work with intercultural healthcare? 9. How would you compare other hospitals to Makewe Hospital? 10. How do you define your own concept of interculturalidad? 11. Do you think that the model of Makewe Hospital could potentially function in other locations in Chile or for other Indigenous groups? 12. How do you feel about the future of Mapuche medicine? 13. How would you characterize community participation for the administration of Makewe Hospital, or other projects with the goal of interculturalidad?

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Appendix B: Informed Consent Form for Makewe Hospital Survey Participants Formato de consentimiento informado Nombre del estudio:…………………………………….. Formulario de Consentimiento (Para los participantes del programa)

Descripción y Propósito del Proyecto El objetivo de este estudio es…………….. El propósito de este estudio es también enseñar a los estudiantes la planificación, diseño y ejecución de un estudio y la redacción de un informe completo. Se le pedirá responder a preguntas que ayudarán a la investigadora a lograr los objetivos de este estudio. Sus respuestas a esta entrevista serán recogidas por la investigadora en la forma de tomar notas y/o grabación de audio, si usted lo autoriza. Todas las notas de las entrevistas y grabaciones serán utilizadas exclusivamente para los fines de este estudio. Esta entrevista o cuestionario (según sea el caso), tendrá una duración de aproximadamente……. minutos, dependiendo de sus respuestas. Evaluación de Riesgos y Beneficios Este estudio está diseñado para representar un riesgo mínimo para sus participantes. Las preguntas están diseñadas para no requerir divulgar cualquier información que pueda ser perjudicial para usted. Los Investigadores Principales El investigador principal es………, una estudiante de la Universidad de…… y una estudiante con SIT Chile: Salud Pública, Medicina Tradicional, y Empoderamiento Comunitario. Ella/El puede ser contactada por correo electrónico a…………… Además, si desea ponerse en contacto con SIT, puede hacerlo poniéndose en contacto con la Directora Académica del programa en Chile. Participación Voluntaria Usted debe tener 18 años para poder participar en este estudio. Su participación en este proyecto es voluntaria y usted es libre de retirar su consentimiento y descontinuar su participación en el proyecto en cualquier momento sin penalización. No es necesario responder a cualquier pregunta que usted no desea responder. Uso de la Información y Los Datos Recogidos La información recopilada en este estudio se utilizará en forma agregada. Los datos serán utilizados para escribir un informe de clase. Habrá tres copias del documento: una para el investigador principal para mantener, una para la biblioteca de SIT Chile, y una para ser enviado al asesor en el país y/o para la organización involucrada. Una presentación oral resumiendo los hallazgos será presentado a una comisión académica de SIT Chile y a los otros estudiantes que participan en SIT Chile. Confidencialidad de Los Expedientes Sus resultados individuales serán confidenciales. Sólo los resultados agregados se informarán en un reporte que forma parte del curso de Estudio Independiente a través de SIT Chile. Información sobre Los Derechos del Participante Si usted tiene alguna pregunta sobre sus derechos como un participante, puede comunicarse con la Directora Académica del programa en Chile. El Consentimiento del Participante

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El estudio se ha descrito a mí y entiendo que mi participación es voluntaria y que puede terminar mi participación en cualquier momento. Yo entiendo que mis respuestas se utilizarán como se describe. Al participar, doy fe de que soy mayor de 18 años y que doy mi consentimiento para participar en este estudio.

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Abstract Objective: Information technology can improve the quality, safety, and efficiency of healthcare delivery by improving provider and patient access to health information. We conducted a nonrandomized, cross-sectional, self-report survey to determine whether Alaska Native and American Indian (AN/AI) people have access to the health communication technologies available through a patient-centered medical home. Methods: In 2011, we administered a self- report survey in an urban, tribally owned and operated primary care center serving AN/AI adults. Patients in the center’s waiting rooms completed the survey on paper; center staff completed it electronically. Results: Approximately 98% (n = 654) of respondents reported computer access, 97% (n = 650) email access, and 94% (n = 631) mobile phone use. Among mobile phone users, 60% had Internet access through their phones. Rates of computer access (p = .011) and email use (p = .005) were higher among women than men, but we found no significant gender difference in mobile phone access to the Internet or text messaging. Respondents in the oldest age category (65–80 years of age) were significantly less likely to anticipate using the Internet to schedule appointments, refill medications, or communicate with their health care providers (all p < .001). Conclusion: Information on use of health communication technologies enables administrators to deploy these technologies more efficiently to address health concerns in AN/AI communities. Our results will drive future research on health communication for chronic disease screening and health management.

Keywords Healthcare communication, technology access, colorectal cancer, disease screening, Alaska

Authors All correspondence should be directed to Renee F. Robinson, Southcentral Foundation, 4105 Tudor Centre Drive, Suite 200, Anchorage, Alaska, USA; [email protected].

Acknowledgements This research was supported by the National Cancer Institute funded Regional Native American Community Network.

Introduction Southcentral Foundation (SCF), a nonprofit tribal healthcare organization, serves more than 65,000 Alaska Native and American Indian (AN/AI) people living in SCF’s region of Alaska, including Anchorage, Alaska and 60 rural villages (D. Eby, 1998; D. K. Eby, 2007). SCF is an urban, tribally owned and operated health center that provides prepaid primary care

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Formative Evaluation to Assess Communication Technology Access and Health Communication Preferences of Alaska Native People • Renee F. Robinson, Denise A. Dillard, Vanessa Y. Hiratsuka, Julia J. Smith, Steve Tierney, Jaedon P. Avey, Dedra S. Buchwald services. Given its service population, SCF is committed to recruiting AN/AI employees, who make up 54% of a total workforce of approximately 1,400. Through patient engagement, SCF has developed a unique healthcare delivery system, the Nuka System of Care, based on the patient-centered medical home model (D. K. Eby, 2007; Thompson, 2008). This system involves patients, their families, and their providers in every stage of healthcare delivery, while taking into account cultural traditions, social circumstances, family situations, personal preferences and values, and lifestyles (Burke, Menachemi, & Brooks, 2005; Sepucha et al., 2008; Thompson, 2008). A focus on patients drives clinical practice, system redesign, and program implementation at the SCF. To bring tangible improvements in healthcare, new technologies must be acceptable to the target population, which includes providers as well as patients, and must respond to community healthcare needs (Brown, Copas, Stephenson, Gilleran, & Ross, 2008; Sahm, MacCurtain, Hayden, Roche, & Richards, 2009). Equally important, technological innovation must address the so-called digital divide, which is defined as inequalities in access to information and communication technology stemming from socioeconomic status and geographic residence (Hsu et al., 2005; Kind, Huang, Farr, & Pomerantz, 2005; Wagner, Bundorf, Singer, & Baker, 2005; Whaley, 2004). The digital divide is especially significant in rural communities, whose residents often lack access to information technologies and have little experience using them (Dick, Manson, Hansen, Huggins, & Trullinger, 2007; Wang, Bennett, & Probst, 2011). Nevertheless, healthcare communication technologies (HCT), including email, text messaging, social networking platforms, videoconferencing, and the Internet, are vital to rural health. Promoting their use is a priority for both the Department of Health and Human Services and the Indian Health Service (Carroll et al., 2011; Sequist, Cullen, & Acton, 2011; Sequist, Cullen, & Ayanian, 2005; Sequist et al., 2007). HCT has been successful in engaging community members with regard to health and well-being in a variety of resource-limited healthcare settings (Armstrong et al., 2009; Buchanan, Morris, & Kauley, 1999; Burdette, Herchline, & Oehler, 2008; Cegala, Street, & Clinch, 2007; Geraghty, Glynn, Amin, & Kinsella, 2008; Hammel, 2003; Jackson et al., 2008; Kleiboer et al., 2010; Lorence, Park, & Fox, 2006; Menachemi, Prickett, & Brooks, 2011; Salovey et al., 2009; Sequist et al., 2005; Street, Gordon, & Haidet, 2007; Street, Makoul, Arora, & Epstein, 2009; Street, O’Malley, Cooper, & Haidet, 2008; Zolfo et al., 2010). The SCF uses a wide array of technologies to deliver and support healthcare services. Initiatives for meaningful use of HCT include developing web-based tools (Doorenbos, Demiris, et al., 2011; Doorenbos et al., 2010; Doorenbos, Kundu, et al., 2011; Garritano & Goldenberg, 2011; Hild, 2004; Kokesh, Ferguson, & Patricoski, 2004, 2011; Patricoski, 2004) and collaborative initiatives to improve the delivery and quality of healthcare services for our patients, including physical, mental, social, and spiritual care (Carroll et al., 2011). However, these tools and initiatives are effective only if they reach their target population and are tailored to meet that population’s health needs. Colorectal cancer (CRC) is one of the leading causes of cancer-related deaths among all US residents, including AN/AI people (Jemal, Siegel, Xu, & Ward, 2010; Kelly, Alberts, Sacco, & Lanier, 2012; Swan & Edwards, 2003). Joint consensus guidelines recommend regular screening for asymptomatic adults 50 years of age and older (Levin, Lieberman, McFarland, Andrews, et al., 2008). CRC screening has been shown to reduce both the incidence of and mortality from CRC, but despite its effectiveness, screening uptake remains suboptimal, and current low-tech interventions such as telephone and postal mail reminders may not address the needs of AN/AIs (Brouwers et al., 2011; Doorenbos, Jacobsen, Corpuz, Forquera, & Buchwald,

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Formative Evaluation to Assess Communication Technology Access and Health Communication Preferences of Alaska Native People • Renee F. Robinson, Denise A. Dillard, Vanessa Y. Hiratsuka, Julia J. Smith, Steve Tierney, Jaedon P. Avey, Dedra S. Buchwald 2011; Lee, Groessl, Ganiats, & Ho, 2011; Naylor, Ward, & Polite, 2012; Redwood et al., 2011; Sarfaty et al., 2012; Sequist, Zaslavsky, Marshall, Fletcher, & Ayanian, 2009; Yabroff et al., 2011). Computerized reminders and other HCT have been shown to improve healthcare delivery in a subset of patients with specific health conditions and to assist providers with panel management, such as tracking patient outcomes by provider and monitoring the usage and delivery of screening services. Several studies have shown that automated messaging can improve care and screening for chronic diseases, including cancer (Armstrong et al., 2009; Feldstein et al., 2009; Greaney et al., 2012; Stone et al., 2002; Williams et al., 2011). SCF plans to implement an HCT intervention that includes reminders for chronic disease screening. The intervention will begin with messaging on CRC screening. However, it is unclear whether AN/AI people, especially those older than 50 years, have access to the HCT required to use such a service (Carroll et al., 2011; Dick et al., 2007; Rushing & Stephens, 2011; Sequist et al., 2011; Sequist et al., 2005; Wood et al., 2003). According to the principles of patient-centered care, health system changes should be driven by desired outcomes and align with patient preferences. The outcomes desired by SCF provide an initial framework for developing a formative evaluation, identifying key stakeholders (e.g., patients, providers, and leadership), formulating CRC screening messages, and implementing the intervention. In 2011, SCF conducted a survey on communication technology to determine whether AN/AI people in SCF’s region of Alaska have access to the HCT needed for the planned CRC screening intervention. The results will help to determine the potential reach of the intervention, maximize its success, and lead to improvements in monitoring and managing AN/AI population health.

Methods Study Design We performed a nonrandomized, cross-sectional, self-report survey of HCT among AN/AI adults. The survey was administered on paper to SCF patients in the health center’s waiting rooms. The survey was written in English, the language predominantly used at the SCF. The survey was also distributed electronically through Survey Monkey to SCF staff. Survey administration to patients began in mid-February 2011; electronic recruitment of staff began on March 4. All surveys were completed by March 18, 2011. Eligibility criteria included a self-reported age of at least 18 years and current eligibility for care at SCF. As an incentive, all participants were entered in a draw to win one of six $50 gift cards. SCF is an Alaska Native owned and managed regional health corporation operating under the tribal authority of Cook Inlet Region, Inc. SCF and Alaska Native Tribal Health Consortium (ANTHC) approved all aspects of the study in accordance with requirements for tribal review of research. Additionally, SCF and ANTHC provided prepublication review and approval of this manuscript prior to peer review. The Alaska Area Institutional Review Board of the Indian Health Service also approved all aspects of the study.

Study Instrument The study instrument was a 15-item survey developed to ascertain health information, technology access (e.g., Internet, mobile phone), use of specific services (e.g., email, text

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Analyses We used SAS (Version 9.2) for data manipulation and statistical analysis. Descriptive statistics were calculated and gender associations with availability and use of technology were assessed with chi-square tests. Because CRC screening is recommended on the basis of age, we present results for the entire sample as well as for the subsample of participants aged 50 years and older. Associations were considered significant for p values less than .05.

Results Our recruitment methods resulted in a convenience sample of 673 participants (Table 1). Ninety-six percent reported gender, among whom 79% were women. Most participants were employees at the SCF (84%) and of AN/AI descent (72%). The demographics of the full sample were similar to those of the subsample of participants aged 50 years and older (n = 168). In the older subsample, 75% were women, 74% were SCF employees, and 68% were AN/AI.

Table 1 Demographic Descriptive Statistics Entire sample Sample ≥ 50 years Characteristic (N = 673) (n = 168) n %a n %a Gender Female 511 79% 107 75% Male 135 21% 36 25% Employment at SCF Yes 540 84% 104 74% No 102 16% 36 26% Ethnicity Alaska 460 72% 97 68% Native/American Indian Not Alaska 183 28% 46 32% Native/American Indian aMissing count and percentage are not presented, thus n will not add up to N. The percentage is of those who specified gender, employment at SCF, or ethnicity.

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Table 2 Reported Technology Access and Use by Age and Gender Entire sample (N = 673) Sample ≥ 50 years (n = 168) Female Male pb Female Male pb n (%a) n (%a) n (%a) n (%a) Computer availabilityc Yes, every day 440 (86) 115 (85) 89 (84) 26 (72) Yes, but not every 61 (12) 12 (9) .011 15 (14) 5 (14) .016 day No 8 (2) 8 (6) 2 (2) 5 (14) Email use Yes, every day 397 (78) 102 (76) 76 (72) 22 (61) Yes, but not every 102 (20) 23 (17) .005 25 (24) 7 (19) .011 day No 10 (2) 10 (7) 4 (4) 7 (19) Mobile phone access Yes, I have a 459 (90) 105 (78) 89 (84) 26 (72) monthly plan Yes, I have a 25 (5) 16 (12) < .001 6 (6) 5 (14) .198 prepaid plan No 25 (5) 14 (10) 11 (10) 5 (14) Mobile phone 296 (61) 67 (56) .332 45 (47) 12 (40) .480 Internet access Number of text messages sent 10 or more daily 201 (42) 40 (33) 9 (9) 2 (6) 1 to 9 daily 119 (25) 31 (26) 16 (17) 6 (19) Some messages 125 (26) 32 (26) .074 50 (53) 11 (35) .202 but not daily I never send texts 38 (8) 18 (15) 20 (21) 12 (39)

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Most participants in the full sample reported that they found the following options useful and would probably use them at least sometimes: email communication with their healthcare providers (78%), online appointment scheduling (76%), online medication refills (75%), and text or email screening reminders (70%). Within the older subsample, slightly smaller majorities reported the same preferences: email communication with their healthcare providers (71%), online medication refills (68%), online appointment scheduling (62%), and text or email screening reminders (61%). SCF employees were more likely than non-employees to anticipate use of HCT to schedule appointments, refill medications, receive text or email screening reminders, and communicate by email with healthcare providers (p < .001, p < .001, p = .002, and p < .001, respectively; data not shown). The preferred method for receipt of health information did not appear to differ between the full sample and the older subsample, except that a smaller percentage of the older subsample preferred text messages (p < .001). When we examined age distributions at a more granular level (16–25, 26–45, 46–64, and 65–80 years), people in the oldest age category (65–80) were significantly less likely to anticipate using the Internet to schedule appointments, refill medications, or communicate with their providers (all p < .001).

Limitations A key limitation of this study is our use of a convenience sample to increase the speed and ease of data collection and reduce administrative cost. Participants may have self-selected on the basis of interest in technology and may therefore overrepresent technology use in the community. In addition, the large proportion of SCF employees in our sample may have elevated results for HCT access and use. Nevertheless, 84% of SCF employees are also SCF beneficiaries, so their participation may not affect the representativeness of our study sample. An additional limitation of the study was that the survey was offered only in English, and AN/AI people who were not as comfortable or fluent in English may have chosen not to participate.

Discussion Americans depend on technology to receive and communicate information (Denizard- Thompson, Feiereisel, Stevens, Miller, & Wofford, 2011; Miller & West, 2009; Salovey et al., 2009). However, widespread, equitable access to information technology has been limited by a knowledge divide as well as a digital divide (Goodall, Ward, & Newman, 2010; Haughton, Kreuter, Hall, Holt, & Wheetley, 2005; Hsu et al., 2005; Lorence et al., 2006; Salovey et al., 2009). Those most at risk of poor health outcomes are likely to fall farther behind as health systems increasingly rely on HCT for communication (Sarkar et al., 2011). For example, adoption of digital technologies by older adults has increased, but it is still limited and based on the perceived utility of these tools (Heart & Kalderon, 2013; Tran, Buckley, Bertera, & Gonzales, 2009). Among AN/AI people aged 50 years and older, our study found rates of access and of reported and anticipated use of digital technologies that were higher than we expected (Goodall et al., 2010; Haughton et al., 2005; Lorence et al., 2006; McNeill, Puleo, Bennett, & Emmons, 2007). Computer access and email use appeared consistent across the entire respondent

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Conclusion Information on technology access and use enables healthcare providers and administrators to deploy HCT more efficiently and cost-effectively to address health concerns and disparities in AN/AI communities. Outcomes of this formative evaluation will drive future qualitative research on HCT. Our results will facilitate the identification and subsequent engagement of key stakeholders in HCT interventions and contribute to the meaningful use of clinical data. In particular, our findings will assist in developing a telecommunication messaging initiative to promote CRC screening and to better manage and monitor AN/AI population health.

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Formative Evaluation to Assess Communication Technology Access and Health Communication Preferences of Alaska Native People • Renee F. Robinson, Denise A. Dillard, Vanessa Y. Hiratsuka, Julia J. Smith, Steve Tierney, Jaedon P. Avey, Dedra S. Buchwald Williams, L. S., Ofner, S., Yu, Z., Beyth, R. J., Plue, L., & Damush, T. (2011). Pre-post evaluation of automated reminders may improve detection and management of post- stroke depression. Journal of General Internal Medicine, 26(8), 852–857. doi:10.1007/s11606-011-1709-6

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia REVISED REFERENCES, 04/13/2016

Abstract There are 87 Indigenous ethnic groups in Colombia, representing 3.4% of the country’s population. Poverty, forced displacement, and social and health inequities place Indigenous communities at increased risk of HIV/AIDS. However, little is known about the prevalence of HIV in this population. The objectives of this study were to estimate the prevalence of HIV and other sexually transmitted infections in an Indigenous community in Colombia, and to assess community members’ knowledge about the disease and its risk factors. The study, conducted in 2010, was initiated at the request of the leadership of the community of Cristianía and involved community members in all stages of the project. HIV prevalence data were gathered through rapid testing of a random sample of 295 community members between the ages of 15 and 49 years. As well, researchers administered a survey related to sexual behaviours and knowledge about HIV. Findings revealed 3 cases of HIV, a prevalence of 1.02%, 95% CI [0.21, 2.94]. The 3 cases were women. The majority of individuals sampled had heard of HIV or AIDS, but their level of knowledge about the mechanisms of virus transmission varied substantially. The results of this study, the first to explore the prevalence of HIV among Indigenous people within a community in Colombia, suggest a need to investigate HIV prevalence within other Indigenous communities in Colombia. Keywords HIV/AIDS, Indigenous communities, Colombia, HIV prevalence, community-based HIV research, HIV knowledge

Authors Carlos Rojas is a professor at the School of Public Health, Universidad de Antioquia, Colombia. His areas of interest are the prevention and control of infectious diseases of public health importance. He has been working with Colombian Indigenous communities affected by HIV since 2005. He designed the study, wrote the Colciencias grant, and wrote the first version of this article. Diana Castro is an associate researcher at the School of Public Health, Universidad de Antioquia, Colombia. Her areas of interest are the conduction of socioeducative process and the empowerment of deprived communities. She has been working with Colombian Indigenous communities affected by HIV since 2010. She reviewed the Colciencias grant and designed and managed the project activities in the community. Natalia Gómez is an associate researcher at the School of Public Health, Universidad de Antioquia, Colombia. Her areas of interest are health information systems and data managing and analysis. She has been working with Colombian Indigenous communities affected by HIV since 2010. She collected and analyzed data for this study. Mauricio Lozano is a former associate researcher at the School of Public Health, Universidad de Antioquia, Colombia. His areas of interest are the diagnosis and treatment of

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone HIV and sexually transmitted infections. He conducted the rapid testing and was responsible for the medical aspects of the study, as well as working on drafts of the article. Jhojandrelli Congote is a former research assistant at the School of Public Health, Universidad de Antioquia, Colombia. His areas of interest are health information systems and data managing and analysis. He collected and analyzed data for this study. Sara Paris is a retired professor from the School of Medicine, Universidad de Antioquia, Colombia. Her areas of interest are the immunology of tuberculosis and the diagnosis of infectious diseases. She advised in the design of project activities and conducted the rapid testing. Mónica Soto is a professor at the School of Public Health, Universidad de Antioquia, Colombia. Her areas of interest are the prevention and control of infectious diseases of public health importance and occupational epidemiology. She advised in the design of project activities and medical aspects and conducted the rapid testing. Gladis Yagarí is a member of the Indigenous community of Cristianía. Her areas of interest are the arts, health education, and community development. She advised in the design and planning of the study, assisted with research activities, collected data, and discussed findings. Javier Mignone is an associate professor at the University of Manitoba, Canada. His areas of research are Indigenous health, HIV/AIDS, social epidemiology, social development, and program evaluation. He has been working with Colombian Indigenous communities since 2006. He assisted with the design of study, advised with project activities in the community, and worked on several versions of the article. Correspondence should be directed to Javier Mignone, Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada. Phone: 204-474-8065, email: [email protected]

Acknowledgements The authors wish to thank and pay tribute to Pedro Pablo Yagarí, Traditional Authority and leader of Cristianía and co-investigator in this project, who sadly died in a tragic way prior to the drafting of this manuscript. The study benefited from his wisdom. We would like to thank the community of Cristianía and its authorities for having participated in and supported this project. We also wish to thank Dr. John Wylie for his advice during the epidemiological survey, and Dr. Rafael Tovar for his advice on statistical analysis. Our thanks also extend to Colciencias, the National School of Public Health at the University of Antioquia, the Indigenous Organization of Antioquia (OIA), the ESE Hospital Gabriel Peláez Montoya from the Jardín municipality, the EPS of the Cauca Indigenous Association (AIC), the Foundation RASA in Medellín, and the Intersectoral Antioquia Committee of HIV and STIs. The present study was funded by Colciencias, Project “Epidemiología, prevención y control del VIH/SIDA y las infecciones de transmisión sexual en una comunidad indígena de Colombia,” code 111549326088, contract 487-2009, and by Universidad de Antioquia, Estrategia de sostenibilidad CODI 2011–2012.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Introduction According to the United Nations program on HIV/AIDS (UNAIDS, or Spanish ONUSIDA, 2014), by the end of 2013 there were 35.3 million people in the world living with HIV. That same year, 2.1 million new cases were reported, and 1.5 million people died of AIDS- related illnesses. These figures reveal a decrease in the epidemic, mainly due to the increase in access to antiretroviral therapies (ONUSIDA, 2014). In 2011, the estimated HIV prevalence rate within the general population of Colombia was 0.52%, representing 152,620 people living with HIV, many of them unaware of their infection due to barriers to diagnosis. The prevalence in Colombia appears to be stable and displays the pattern of a concentrated epidemic, as it is below 1% in the general population, with rates among men having sex with men reaching more than 5% (Ministerio de Salud y Protección Social, 2012). Although reports on the global and national spread of HIV are timely and informative, they often overlook specific ethnic populations. For instance, UNAIDS provides data by region and country, while Colombian governments report only by department (similar to a state or province) and city. Consequently, there is a gap in our knowledge about how HIV is affecting the Indigenous Peoples of Colombia. Since 1996, international literature has drawn attention to the emergence of HIV within North American Indigenous populations, who represent approximately 4.3% of the overall population in Canada and 2% in the United States (Duncan et al., 2011; Kaufman et al., 2007; Mill et al., 2011; Tseng, 1996). Yet in Latin America, home to almost 50 million Indigenous people, much less is known about HIV within this population, even though “some authors believe HIV will have the same effect on Indigenous peoples as the original epidemics brought by the conquistadores” (Montenegro & Stephens, 2006, p. 1864). Indeed, the emergence of HIV within Indigenous populations in Brazil (Wiik, 2001), Mexico (Hernández-Rosete, Maya, Bernal, Castañeda, & Lemp, 2008), and Peru (Bartlett et al., 2008) supports this prediction. In a study of risk for HIV and other sexually transmitted infections (STIs) among Indigenous communities in the Peruvian Amazon, Orellana, Alva, Cárcamo, and García (2013) highlight a number of structural factors. Similarly, Negin, Aspin, Gadsden, and Reading (2015) identify colonialism and racism as embedded in the social and economic determinants that increase the risk of HIV among Indigenous Peoples. There are currently 87 Indigenous ethnic groups in Colombia, with a total population of 1.4 million people, accounting for 3.4% of the national population (Organización Nacional Indígena de Colombia [ONIC], 2012). Indigenous people live in 27 of the 32 departments of the country, with roughly 80% residing in resguardos (Indigenous communal lands that have constitutional recognition of territorial integrity and autonomy, akin but not identical to First Nations reserves in Canada or American Indian reservations in the United States; ONIC, 2012). Despite progress in recent years, access to healthcare remains difficult for most Indigenous groups in Colombia (Montenegro & Stephens, 2006). National public health surveillance systems do not report by ethnicity, and consequently there are no reliable statistics on the national health status of the Indigenous population. According to the Indigenous Organization of Antioquia (OIA), the first case of an Indigenous person with HIV was reported in 2000 in the Cristianía resguardo in the Antioquia department (personal communication with G. Tascón, former president of OIA, June 2006). Between 2000 and 2009 (before the study reported here was conducted) a total of seven cases of HIV were reported in Cristianía, of which three persons are deceased. A recent review of the

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone literature revealed only three previous studies about HIV in Colombia, one in an Indigenous resguardo in the northern Cauca region, which explored beliefs and perceptions of HIV (Consejo Regional Indígena del Cauca [CRIC], 2004). The second was part of the 2007 Colombian National Health Survey, which revealed an overrepresentation of Indigenous people among those reporting having a STI in the past year, yet this disparity did not exist among those previously diagnosed with HIV (Soto & Rojas, 2010). The third study examined HIV risk factors within the Indigenous population of Colombia (Betancourt & Pinilla, 2011). None of these studies provided sufficient information about the characteristics of HIV among Indigenous people in Colombia. This study proposed to fill that gap in knowledge.

Methods Population and Research Area Cristianía is an Indigenous resguardo of the Embera Chami ethnic group located in the southwestern department of Antioquia, in the municipality of Jardín. The first Indigenous people settled in this region in 1874, making it one of the oldest Indigenous resguardos in the department, located on 400 acres with a population of 1,749 people, 55.6% between 15 and 49 years and 48.4% female (Cataño et al., 2015). The resguardo is in a mountainous area, with low population density. Given the proximity to and contact with Medellín and other municipalities of Antioquia, most of the inhabitants of Cristianía speak Spanish and have similar customs and lifestyle to that of the general peasant population. It is a low-income community with few stable jobs, except for temporary work. The main economic activity of the inhabitants of Cristianía, particularly men, is coffee harvesting. Younger women also are employed in coffee harvesting, and older women often work creating handicrafts that are sold to visitors. Women are responsible for most of the work in homes, associated with a traditional maternal role in the family. All of the inhabitants are affiliated with the national health social security system, with about 90% of them being members of an Indigenous EPS (health promotion entities that provide health insurance; Mignone, Nállim, & Gómez Vargas, 2011). The leadership of Cristianía approached academics from Universidad of Antioquia with their concern about the number of community members who had been diagnosed with HIV/AIDS. After several conversations, a partnership was established to conduct a community- based participatory research project. As such, a community committee, including representation from Elders, leadership, men, women, and youth, was established to oversee the project and make key decisions. Community members were employed by and/or volunteered to work with the project, and the initiative involved active participation of youth, as well as traditional healers.

Sampling and Recruitment A sample size of 300 people was calculated to estimate an HIV prevalence of 1%, with a confidence interval of 95% and a margin of error of 1%. A stratified random sample was used, representative of sex, age group (15–17, 18–24, and 25–49 years), and area of residence within the resguardo. The sampling frame was based on the 2010 community census. Those selected were invited to participate by written communication delivered personally to their homes by two Indigenous community leaders. In the case of minors, invitation to participate was given initially to the parent or guardian. People who did not respond to the first invitation were invited once or twice more. Those who did not respond to any of the invitations or failed to meet all the inclusion criteria were replaced with people from a second random sample of 223 participants.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Design This prevalence study of HIV infection was conducted on a stratified random sample of the population aged 15 to 49 years. Researchers also administered a survey regarding sexual behaviour and HIV knowledge. Participants’ first contact was with a community member of the research team who assigned them a time for their survey interview. Participants went to the local health centre for the interviews, where a member of the research team conducted each interview in a private workstation. Before beginning the survey interview, participants signed a consent form in front of two witnesses. In order to help participants feel more comfortable, the gender of the interviewer was matched to the gender of the interviewee. After the survey was administered, each participant had the rapid tests performed by two members of the research team, preceded by a short counselling session. The result, which took approximately 30 minutes to receive, was provided in private by one member of the research team, followed by further counselling. Participants who received negative results were asked by a community member of the research team to evaluate the experience. Those who received positive results were referred, following counselling, for confirmatory testing at the hospital. All surveys were conducted in private settings at the health centre and, in the case of minors, were conducted by a researcher who is also a psychologist, to ensure their emotional safety.

Inclusion Criteria To be included in the study sample, individuals had to be between 15 and 49 years of age, reside in Cristianía, have been sexually active for at least six months, speak Spanish, and agree to sign the informed consent form before participating in the study. Participants’ age during data collection was calculated from the date of birth recorded in the community census of 2010, which was also used for verifying the community residence criterion.

Rapid Tests The Determine HIV-1/2 rapid test by Inverness-Orgenics was used to measure the presence of antibodies to HIV-1 and HIV-2 (sensitivity 100%, specificity 100%). The Determine Syphilis TP test was used to measure the presence of antibodies against Treponema pallidum (92.3% sensitivity, 100% specificity). Finally, the Determine HBsAg test was used to measure the presence of the hepatitis B surface antigen (sensitivity 98.4%, specificity 100%). Trained professionals (two doctors, two bacteriologists, and a nurse) conducted the tests individually, in private, and following the protocol described by the manufacturer. The research team had no connection with the manufacturer; the test kits were purchased with grant funding.

Survey The survey included a total of 60 items relating to (a) sexual behaviour that impacts HIV risk and (b) knowledge about HIV. Most of the items were validated nationally (Ministerio de Protección Social, 2009); some were not validated but were included as they are relevant to the community context. The survey was administered face to face by a researcher from outside the community and lasted approximately 20 minutes. The questions and response options were read aloud by the researcher, who also completed the written form according to the participant’s responses. The survey did not include questions that would elicit responses likely to identify any of the participants.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Confirmation of Positive Results All participants with a positive HIV rapid test result were referred to the laboratory at Jardín’s hospital, where they underwent confirmatory testing, the cost of which was covered by the study. New confirmed cases of HIV, syphilis, and hepatitis B were referred to the participants’ respective healthcare providers. The research team followed the cases and sometimes accompanied participants to verify that they were properly attended.

Data Analysis Quantitative data were analyzed using the SPSS software package. Frequencies and proportions were calculated for categorical variables, and measures of central tendency and dispersion for continuous variables. For prevalence estimates 95% confidence intervals were calculated, and for comparing proportions chi-square and p values were calculated.

Ethical Considerations Indigenous leaders of Cristianía and the Ethics Committee of the National School of Public Health at the University of Antioquia provided formal approval for this study. Participation in project activities was voluntary, and all participants signed informed consent forms before two community witnesses prior to participating in the rapid tests and the survey. In order to protect their privacy, researchers had minors (15–17 years) who met the inclusion criteria sign their own consent forms (rather than their parents).

Results Participants In June and July of 2010, 523 community residents between 15 and 49 years of age were randomly selected and invited to participate in this study. Three hundred eighty-two (382) people responded (73%), of which 87 were excluded as they had not yet initiated sexual practices and were mainly minors. The main reason cited for not accepting the invitation was absence from the resguardo on data collection days, mainly for work reasons. A total of 295 people participated in both the rapid HIV test and the survey. Table 1 presents participants’ demographic characteristics and rapid test results. The sample corresponds to the community’s profile for the age group of 15 to 49 years.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Table 1 Demographic Characteristics of the Study Participants and Positive Rapid Test Results for HIV, Syphilis, and Hepatitis B, by Gender Men Women Total Variable (n = 140) (n = 155) (N = 295) n % 95% CI n % 95% CI n % 95% CI Age group 15–17 8 6 11 7 19 6 18–24 39 28 36 23 75 25 25–49 93 66 108 70 201 68 Positive rapid test results HIV 0 0 [0.00, 2.60] 3 1.94 [0.40, 5.55] 3 1.02 [0.21, 2.94] Syphilis 2 1.43 [0.17, 5.07] 6 3.87 [0.51, 7.23] 8 2.71 [0.69, 4.74] Hepatitis B 0 0 [0.00, 2.60] 0 0 [0.00, 2.35] 0 0 [0.00, 1.24]

Rapid Test Results Three people were found to be HIV positive, which corresponds to a general prevalence for the population aged 15 to 49 years of 1.02%, 95% CI [0.21, 2.94] (Table 1). All positive cases were women, two of whom already knew they were HIV positive and were receiving antiretroviral treatment. The third woman’s status was confirmed by the ELISA and Western blot tests, and she was referred to her healthcare provider to start medical treatment. The prevalence in women was 1.94%, 95% CI [0.40, 5.55]. The woman’s sexual partner was an incidental case that was not part of the sample and was not considered in the prevalence calculation, but was tested and found to be HIV positive. Eight people tested positive for syphilis, which corresponds to a general prevalence for the population aged 15 to 49 years of 2.71%, 95% CI [0.69, 4.74] (Table 1). All cases confirmed by VDRL and FTA-ABS tests received antibiotic treatment provided by the study, with the appropriate response. Six of these cases occurred in women, corresponding to a prevalence of 3.87%, 95% CI [0.51, 7.23]. Two of the positive cases for syphilis were also HIV positive. None of the participants tested positive for the surface antigen of hepatitis B. No technical difficulties occurred in the delivery of the rapid testing process in the community. The tests were well accepted and no adverse effects were associated with their use.

Genitourinary Symptoms During the survey, 72 participants (24.4%) reported the presence of at least one symptom suggestive of an STI (complete results not presented). The most common were nonspecific symptoms such as burning during urination (14.9%), lower abdominal pain (11.9%), and genital pruritus (9.1%). Other, less frequently occurring symptoms included genital secretion (eight cases), genital warts (four cases), and genital ulcer (one case). All symptoms occurred more frequently in women, with the exception of genital warts (three cases in men) and a genital injury case. In all of these cases the presence of infection was ruled out during follow-up by a medical doctor, and all participants’ symptoms disappeared spontaneously without treatment. None of the participants with a positive test result for syphilis reported genitourinary symptoms.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Sexual Behaviour The average sexual initiation age for men and women was 16 years. Numbers of affirmative answers to yes/no survey questions regarding sexual behaviour are shown in Table 2. The majority of respondents reported that, in the past year, they had one sexual partner. Most of the participants reported being sexually active during the data collection period, but 54% never used condoms, and significantly more women (63%) than men (43%) never used them, p < .05. History of sexually transmitted infections was reported in a small proportion of both men and women. A higher proportion of women (74%) reported having had a prior HIV test, compared to men (39%), p < .001. Almost half the men mentioned having had sex under the influence of alcohol. Finally, a history of sex between men was reported by five male respondents. Not shown in the table, but a relevant result, is that none of the participants interviewed reported injection drug use.

Table 2 Sexual Behaviours by Gender Sexual behaviour Men Women (n = 140) (n = 155) pa n %b n % Currently you have a sexual partner 101 72.1 126 81.3 .085*

You never use a condom when you are having sex 60 42.9 98 63.2 .0007**

You have had sex while under the influence of alcohol 60 44.8 28 18.1 .0000**

You have had a sexually transmitted disease 5 3.6 4 2.6 .88

You have been HIV tested before 55 39.3 115 74.2 .0000**

You have had sex with other men 5 3.6 [1.17, 8.14]c

Note. Only affirmative/agree responses are reported. a Chi-square test b Percentages may vary despite similar n due to differences in the denominator (i.e., some items were not answered by 100% of the sample) C Confidence interval calculated for the proportion of men who have had sex with other men. *Statistically significant at 10%. **Statistically significant at 5%. + HIV Knowledge Numbers of affirmative answers to yes/no survey questions regarding HIV knowledge are shown in Table 3. Almost all participants had heard of HIV or AIDS prior to this study, and 69% reported knowing someone living with HIV or who had died from AIDS. Respondents showed average level of knowledge about the major routes of HIV transmission, including unprotected sex, intravenous drug use or blood transfusions, and vertical transmission from a pregnant woman to the fetus. However, participants showed lower levels of knowledge about the ways HIV cannot be transmitted; this lack of understanding was more pronounced in men than in

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone women. Finally, it is worth noting that all but three respondents indicated that HIV/AIDS is a “fatal” disease (Table 3).

Table 3 Sexual Knowledge by Gender

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Knowledge statement Men Women (n = 140) (n = 155) p n %a n %a You have heard of HIV/AIDS 130 92.9 146 94.2 .82

You know someone who has HIV/AIDS or who 93 66.4 112 72.3 .34 has died from this cause You have heard of sexually transmitted infections 99 70.7 109 70.3 .96

HIV is transmitted by having sex without a 127 94.8 139 91.5 .78 condom with an infected person

HIV is only transmitted by having oral sex 70 52.2 80 52.6 .96

HIV is not transmitted by hugging or shaking 83 61.9 120 78.9 .002* hands with an infected person

HIV is transmitted using infected sharp objects 122 91.0 136 89.5 0.80

HIV is not transmitted through a mosquito bite 29 21.6 38 25.0 0.60

HIV is transmitted through the transfusion of 125 93.9 140 92.1 0.70 infected blood

HIV is not transmitted by sharing a meal with 35 26.1 81 53.3 0.000* someone who is infected

HIV is transmitted when injected with needles 130 97.0 137 90.0 0.04* that have been previously used by an infected person

HIV is not transmitted when using public 35 26.1 51 33.6 0.22 restrooms

HIV is transmitted from an infected woman 112 83.6 125 82.2 0.89 during pregnancy to her baby

HIV is not transmitted by kissing an infected 36 26.9 54 35.5 0.15 person

HIV is transmitted from a mother to her baby 100 74.6 100 65.8 0.13 through breast milk

HIV/AIDS is not a fatal disease 1 0.8 2 1.3 0.93

Note. Only affirmative/agree responses are reported.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone a Percentages may vary despite similar n due to differences in the denominator (i.e., some items were not answered by 100% of the sample) *Statistically significant at 5%. Limitations Response accuracy to questions about sexual behaviour may have been affected through either nonresponse or underreporting, as these questions are often considered intimate and sensitive. In particular, we cannot rule out social desirability bias. Using validated questions from previous studies conducted with non-Indigenous populations could represent a potential limitation of the study, as it implies that this Indigenous community had similar concepts of sexuality, which may not be the case (Organización Panamericana de la Salud [OPS], 2003). A future study exploring Indigenous concepts of sexuality is warranted but was outside the scope of this study. However, findings from several focus groups conducted during the data collection period (unpublished results at present) suggest that concepts of sexuality among individuals in this community do not differ significantly from those in neighbouring non-Indigenous communities. Another potential bias created by the sampling strategy relates to participation by those who were not harvesting coffee during the time of the study, as there might be differences in sexual behaviour between those who work in this industry and those who do not.

Discussion This is the first study to report on the prevalence of HIV in an Indigenous community in Colombia. The community of Cristianía was fully involved in all stages of the project, and a particular strength of the study was that it was community-driven. In fact, a central feature of this study is its initiation at the request of community leadership. The commitment of this Indigenous community is demonstrated not only by its awareness of HIV but by its strength and cohesion in confronting a potentially serious community health concern. Previous research has referred to the occurrence of HIV among Indigenous people or drawn attention to the vulnerability of Indigenous people and the potential impact of the epidemic in this population (Betancourt & Pinilla, 2011; CRIC, 2004; Ministerio de Protección Social, 2009). Yet the results of this study reveal a prevalence in the population aged 15 to 49 years (1.02%) that is higher than the estimated general prevalence for this age group in Colombia in 2010 (0.57%; Ministerio de Salud y Protección Social, 2012). Another key finding is the disproportionate number of women testing positive for HIV— all of the cases in our sample. While this may be the result of random sampling, it is unlikely. This finding supports as yet unpublished research that indicates that women account for 50% of the total HIV cases reported in this community. This contrasts with 2011 figures for Colombia, where women accounted for only 28% of cases (Ministerio de Salud y Protección Social, 2012). Similar findings to those of this study have been reported in studies within Canada (Roger, Migliardi, & Mignone, 2012). It is unclear why women are overrepresented in HIV cases among Indigenous communities. However, we suspect that many are infected by a male partner who does not use condoms and who has other sexual partners (female or male). As well, as shown in our findings, a smaller proportion of women use condoms when compared to men. Other aspects related to this situation are “machismo,” alcohol abuse of the male partner, and domestic violence against women. Studies conducted in Mexico among Indigenous women suggest that they are at increased risk of HIV as a result of having partners who are migrants who cyclically

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone return to the home (Hernández-Rosete et al., 2008; Maier, 2007). This aspect of risk among Indigenous women merits further research in Colombia. Almost all of the study participants indicated that they had heard of HIV and/or knew someone with HIV. This is not surprising as, during the last decade, an average of one new case of HIV was reported each year in this community of only 1,749 inhabitants. In addition, several educational activities to promote health and prevent disease have increased knowledge regarding the main mechanisms of HIV transmission. There is drug use among some community members, yet it is mainly through smoking or aspirating marijuana and crack. Therefore, sexual intercourse appears to be the main mode of HIV transmission. Although no substantial differences in sexual behaviour risk were found between women in this study and those from the last national demographic and health survey in 2010 (Ministerio de la Protección Social, 2011a), having these data is useful in guiding the design and evaluation of future community educational interventions. With the exception of the eight syphilis cases identified (two of them with HIV co- infection), results from rapid tests (as well as from studying people who reported the presence of genitourinary symptoms) failed to identify the presence of other STIs. However, this study did not test for chlamydia or gonorrhea, which have been reported in other Indigenous populations such as American Indians and Alaska Natives (Kaufman et al., 2007) and are of key public health concern in Colombia. Exploration of genitourinary symptoms did not reveal new STI cases, likely because the symptoms were general and unspecified and could have been caused by other general health issues. It is also possible that participants did not fully understand the meaning of the symptoms. Furthermore, the questions prompted for the presence of symptoms, which may elicit different responses than when patients visit a doctor’s office with specific concerns about symptoms. This has been shown to be the case with the syndromic approach to sexually transmitted infections, which has been successful in many regions of the world (Choudhry, Ramachandran, Das, Bhattacharya, & Mogha, 2010). Of the published studies on HIV among Latin American Indigenous populations, the only comparable study is that of Bartlett et al. (2008) in Peru. They engaged 282 Indigenous people in four remote communities of the Peruvian Amazon and reported a prevalence of 0.7% (2 cases) and 3.2% (9 cases) for HIV and syphilis respectively. These findings reveal lower rates of HIV but higher rates of syphilis than in Cristianía. The two HIV cases in Peru were men, both with a history of having sex with other men, while all three cases of HIV in Cristianía were women. Syphilis was found in men and women in both studies, yet no cases of HIV co-infection were reported in Peru, while in Cristianía there were two. Although there are similarities in the findings of these two studies, results may not be comparable as the Cristianía study was restricted to people aged 15 to 49 years and these participants were randomly selected, while the Peru study included a larger age range (15–75 years) and participants were selected among people who attended a community meeting in a local health centre. Nonetheless, both studies clearly demonstrate that HIV is present in some Indigenous communities in South America and therefore is an important public health concern. Similarly, studies involving Indigenous people in other countries provide additional evidence of an emerging epidemic. For instance, in Canada, Indigenous people represent only 4% of the country’s population yet are overrepresented in new HIV cases, accounting for 27% (Duncan et al., 2011). In particular, Indigenous women have been identified as having one of the highest rates of HIV infection in Canada (Roger et al., 2012).

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Conclusions A unique contribution of the Cristianía study is made through survey findings of a randomly selected sample of Indigenous people aged 15 to 49 years, in HIV prevalence studies, as the use of random selection in these types of studies has been very uncommon. Moreover, this study sampled a relatively small community, which was geographically concentrated and had recent available census data, which was used to create the sampling frame (Silva, 2000). Researchers also gained experience in the use of rapid tests, which provides evidence of test reliability as well as wider acceptance by the population, and the feasibility for usage at the community level. The findings of this study have implications for the Indigenous community of Cristianía, as they more accurately represent the extent of HIV in the community. They also serve as a baseline for evaluating interventions to reduce transmission and improve HIV knowledge. As well, the rapid testing with pre and post counselling had a beneficial effect on participants; the in counselling in particular which can be a powerful educational strategy (Ministerio de la Protección Social, 2011b). At the national level, the findings help raise awareness about the exposure of Indigenous peoples to HIV and the importance of including an ethnicity variable in national HIV observatories (Ministerio de la Protección Social, 2008). Currently an ethnicity variable is not recorded, thus hindering the government’s capacity to monitor and address HIV within Indigenous, Afro-descendant, and other ethnic minority groups.

References Bartlett, E. C., Zavaleta, C., Fernández, C., Razuri, H., Vilcarromero, S., Vermund, S. H., & Gotuzzo, E. (2008). Expansion of HIV and syphilis into the Peruvian Amazon: A survey of four communities of an Indigenous Amazonian ethnic group. International Journal of Infectious Diseases, 12(6), e89–e94. doi:10.1016/j.ijid.2008.03.036

Betancourt, C. F, & Pinilla, M. Y. (2011). Apreciaciones sobre el contexto sociocultural del VIH/SIDA en las comunidades indígenas en Colombia [Understanding the sociocultural context of HIV/AIDS in Indigenous communities in Colombia]. Desacatos, 35, 75–86.

Cataño, J. U., Duque, J., Naranjo, C. A., Rúa, D. C., Rosique, J., García, A. F., . . . Pizano, N. D. (2015). Prevalencia de factores de riesgo cardiovascular en indígenas Embera-Chamí de Cristianía (Jardín), Antioquia [Prevalence of cardiovascular risk factors among Embera- Chamí Indigenous people of Cristianía]. Iatreia, 28(1), 5–16.

Choudhry, S., Ramachandran, V. G., Das, S., Bhattacharya, S. N., & Mogha, N. S. (2010). Pattern of sexually transmitted infections and performance of syndromic management against etiological diagnosis in patients attending the sexually transmitted infection clinic of a tertiary care hospital. Indian Journal of Sexually Transmitted Diseases and AIDS 31(2), 104–108. doi:10.4103/0253-7184.74998

Consejo Regional Indígena del Cauca (CRIC). (2004). Reducción del riesgo de VIH/SIDA en comunidades indígenas del Cauca [Decrease in HIV/AIDS risk in Indigenous communiites of Cauca]. Financed by the Programa de las Naciones Unidas sobre el VIH- SIDA. Popayán, Colombia: Programa de Salud del Consejo Regional Indígena del Cauca.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Duncan, K. C., Reading, C., Borwein, A. M., Murray, M. C., Palmer, A., Michelow, W., . . . Hogg, R. S. (2011). HIV incidence and prevalence among Aboriginal Peoples in Canada. AIDS and Behavior, 15(1), 214–227. doi:10.1007/s10461-010-9792-y

Hernández-Rosete, D., Maya, O., Bernal, E., Castañeda, X., & Lemp, G. (2008). Migración y ruralización del SIDA: Relatos de vulnerabilidad en comunidades indígenas de México [Migration and rural AIDS: Narratives of vulnerabilities among Indigenous communities of Mexico]. Revista de Saúde Pública, 42(1), 131–138. doi:10.1590/s0034-89102008000100017

Kaufman, C., Shelby, L., Mosure, D., Marrazzo, J., Wong, D., & De Ravello, L. (2007). Within the hidden epidemic: Sexually transmitted diseases and HIV/AIDS among American Indians and Alaska Natives. Sexually Transmitted Diseases, 34(10), 767–777. doi:10.1097/01.olq.0000260915.64098.cb

Maier, E. (2007). Educación para la prevención del VIH-SIDA para inmigrantes indígenas en Baja California [Education for the prevention of HIV/AIDS among Indigenous inmigrants of Baja California]. Región y Sociedad, 19, 3–37.

Mignone, J., Nállim, J., & Gómez Vargas, J. H. (2011). Indigenous control over health care in the midst of neoliberal reforms in Colombia: An uneasy balance. Studies in Political Economy, 87, 93–107.

Mill, J. E., Wong, T., Archibald, C., Sommerfeldt, S., Worthington, C., Jackson, R., . . . Myers, T. (2011). “AIDS is something scary”: Canadian Aboriginal youth and HIV testing. Pimatisiwin, 9(2), 277–299.

Ministerio de la Protección Social. (2008). Grupo de trabajo intersectorial en VIH y SIDA: Plan nacional de respuesta ante el VIH y el SIDA Colombia 2008–2011 [Intersectorial working group on HIV and AIDS: National plan in response to HIV and AIDS in Colombia 2008-2011]. Bogotá, Colombia: Ministerio de la Protección Social, Dirección General de Salud Pública, Programa Conjunto de las Naciones Unidas sobre el VIH/sida Grupo Temático para Colombia.

Ministerio de la Protección Social. (2009.) Protocolo estudio comportamiento sexual y prevalencia de VIH en mujeres trabajadoras sexuales [Protocol of study on sexual behaviour and HIV prevalence among female sex workers]. Bogotá, Colombia: Fondo de Poblaciones de las Naciones Unidas, Ministerio de la Protección Social.

Ministerio de la Protección Social. (2011a). Capítulo XII: Conocimiento del VIH/Sida y otras ITS: Formas de prevención [Chapter XII: Knowledge of HIV/AIDS and other STI: Forms of prevention]. In Encuesta Nacional de Demografía y Salud ENDS 2010 Colombia, [ ] (pp. 305–361). Bogotá, Colombia: Profamilia, Ministerio de la Protección Social, Bienestar Familiar, USAID.

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Prevalence, Risk Behaviours, and HIV Knowledge in an Indigenous Community in Colombia • Carlos Rojas, Diana Castro, Natalia Gómez, Mauricio Lozano, Jhojandrelli Congote, Sara Paris, Mónica Soto, Gladis Yagarí, Javier Mignone Ministerio de la Protección Social. (2011b). Pautas para la realización de Asesoría y Prueba Voluntaria para VIH (APV) [Criteria for conducting assessments and voluntary testing for HIV]. Bogotá, Colombia: Ministerio de la Protección Social, Fondo de Poblaciones de las Naciones Unidas.

Ministerio de Salud y Protección Social. (2012). Informe UNGASS 2012: Avances en la lucha contra el Sida en Colombia: Seguimiento de la Declaración de compromiso sobre el VIH/SIDA [UNGASS Report 2012: Advances in the fight against AIDS in Colombia: Follow-up to the Declaration of Commitment on HIV/AIDS]. Bogotá, Colombia: Author.

Montenegro, R. A., & Stephens, C. (2006). Indigenous health in Latin America and the Caribbean. Lancet, 367(9525), 1859–1869. doi:10.1016/s0140-6736(06)68808-9

Negin, J., Aspin, C., Gadsden, T., & Reading, C. (2015). HIV among Indigenous Peoples: A review of the literature on HIV-related behaviour since the beginning of the epidemic. AIDS and Behavior, 19(9), 1720–1734. doi:10.1007/s10461-015-1023-0

ONUSIDA. (2014). Informe de ONUSIDA para el día mundial del SIDA 2013 [HIV/AIDS report for AIDS world day 2013]. Geneva, Switzerland: Programa de las Naciones Unidas sobre el VIH-SIDA.

Orellana, E. R., Alva, I. E., Cárcamo, C. P., & García, P. J. (2013). Structural factors that increase HIV/STI vulnerability among Indigenous people in the Peruvian Amazon. Qualitative Health Research, 23(9), 1240–1250. doi:10.1177/1049732313502129

Organización Nacional Indígena de Colombia (ONIC). (2012). Bogotá: Pueblos indígenas [Bogota: Indigenous Peoples]. Retrieved from http://cms.onic.org.co

Organización Panamericana de la Salud (OPS). (2003). Promoción de la salud sexual y prevención del VIH-Sida y de las ITS en los pueblos indígenas de las Américas: Abya- Yala Kuyarinakui [Sexual health promotion and prevention of HIV/AIDS and STIs among Indigenous peoples of the Americas]. Washington, DC: Author.

Roger, K., Migliardi, P., & Mignone, J. (2012). HIV, social support and care among vulnerable women. Journal of Community Psychology, 40(5), 487–500. doi:10.1002/jcop.20529

Silva, L. C. (2000). Diseño razonado de muestras y captación de datos para la investigación sanitaria [Logic design of samples and data collection for health research]. Madrid, Spain: Ediciones Díaz de Santos SA.

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Tseng, A. L. (1996). Anonymous HIV testing in the Canadian Aboriginal population. Canadian Family Physician, 42, 1734–1740.

Wiik, F. B. (2001). Contact, epidemics and the body as agents of change: A study of AIDS among the Xokleng Indians in the state of Santa Catarina, Brazil. Cadernos de Saúde Pública, 17(2), 397–406.

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities REVISED REFERENCES, 04/13/2016

Abstract Objectives: The Aboriginal Cultural Safety Initiative (ACSI) created at Anishnawbe Health Toronto offers an innovative curriculum to address gaps in postsecondary health sciences curricula in this area for future healthcare providers. Participants: Evaluations were collected from 1,275 students in health sciences programs in colleges and universities in Ontario. Setting: Trained volunteer Aboriginal instructors were invited as guest speakers to college and university classes in various health science disciplines. Intervention: Our instructors offered a 2- to 3-hour teaching session to health sciences students that included 3 modules on the health of Aboriginal peoples: (a) The impact of colonial and postcolonial policies on social determinants of health, (b) Contemporary health determinants and health outcomes, and (c) Aboriginal concepts of health and healing practices. Outcomes: The ACSI was able to impart the intended learning objectives to a wide array of students across health sciences disciplines, as demonstrated in the student evaluations. A significant number of students reported that their knowledge of, and interest in, Aboriginal health increased substantially when compared to their prior knowledge and interest. Conclusion: The success of this program suggests that, in the absence of Aboriginal faculty members in postsecondary health sciences departments, a committed cadre of volunteer Aboriginal instructors can improve student knowledge around issues related to Aboriginal health and can influence student attitudes through the inclusion of personal experiences in the teaching session. A lack of availability in curriculum time continues to be the largest obstacle to including content on Aboriginal cultural safety in health sciences programs.

Keywords Cultural safety, cultural competency, postsecondary education, health education, medical education, Indigenous health services

Authors Chandrakant Shah, M.D.,O.Ont. and Allison Reeves, PhD, Anishnawbe Health Toronto, 225 Queen St. East, Toronto, Ontario, M5A 1S4. Dr. Shah played a primary role in all aspects of the research. Please address correspondence to C. Shah, [email protected].

Acknowledgements First and foremost, we would like to thank our 32 Aboriginal instructors. This initiative would not have been a success without the tireless volunteer efforts and dedication of all of our instructors. This program was funded by the Ontario Trillium Foundation and the Ontario Ministry of Training, Colleges and Universities, and we thank them for their support. Finally, we

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves acknowledge Mr. Joe Hester, the executive director of Anishnawbe Health Toronto, for his 118ongoing support of this initiative, and Michelle Sault for her assistance with data analysis.

Introduction In the fall of 2008, Brian Sinclair was found dead in a hospital emergency room in Winnipeg, Manitoba, after waiting over 30 hours for care. An inquest began in early 2014 to examine how the healthcare system can prevent similar deaths in the future. Aboriginal groups noted that systemic racism likely played a role in this type of hospital neglect, as Sinclair was both homeless and Aboriginal (CBC News, 2014). Stories like these, as well as many similar observations in our own clinical practice, prompted the creation of the Aboriginal Cultural Safety Initiative (ACSI) at Anishnawbe Health Toronto. The province of Ontario has the highest number of Aboriginal people (including First Nations, Métis, and Inuit) in Canada (Statistics Canada, 2010). The health status of Aboriginal Peoples, whether they reside in First Nations communities (reserves) or off reserve, is significantly lower than that of the non-Aboriginal population in Ontario and in Canada (Gracey & King, 2009; King, Smith, & Gracey, 2009). Improving the health status of Aboriginal Peoples requires a multipronged approach that addresses issues related to the determinants of health, the provision of culturally sensitive healthcare, and advocacy around self-determination. While efforts have been made in Canada to address cultural insensitivities generally in the healthcare field, the provision of culturally appropriate healthcare to the Aboriginal population has been largely neglected, and Aboriginal Peoples continue to meet with subtle and overt racism in the healthcare system (Health Council of Canada, 2012). One proposed solution is to train all frontline healthcare professionals in the area of Aboriginal cultural safety. A recent environmental scan completed by Anishnawbe Health Toronto (Shah & Reeves, 2012) explored the extent to which health sciences programs in Ontario universities and colleges include Aboriginal cultural safety in their curricula, as well as barriers and challenges they face in incorporating this type of content. Findings indicated that, other than in nursing and a few personal care support worker programs, Aboriginal content in college curricula is quite sparse. Although two thirds of the university programs that responded noted that they include some aspects of Aboriginal history, content related to colonization and resultant health impacts are limited. The health sciences program directors who responded to this survey indicated that there were few Aboriginal faculty members available to teach this curriculum; however, they noted that if an Aboriginal instructor were available, they would consider further inclusion of this curriculum. In response, we developed a curriculum in Aboriginal cultural safety and offered this training seminar to all students enrolled in undergraduate health sciences programs in colleges and universities in Ontario.

Defining Cultural Safety Developing a curriculum for postsecondary students in Aboriginal cultural safety led us to review the literature on cultural safety, a concept that has received various definitions since Irihapeti Ramsden, a Maori nurse in Aotearoa (New Zealand), wrote extensively on the topic of cultural safety in nursing education (Ramsden & Spoonley, 1994). Our review included key documents in the area of Aboriginal cultural safety in Canada, including publications by the National Aboriginal Health Organization (NAHO, 2006, 2008), the Indigenous Physicians Association of Canada (IPAC, 2008), and the Aboriginal Nurses Association of Canada (ANAC, 2009), as well as an often-cited publication on cultural safety by Brascoupé and Waters (2009)

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves published in the Journal of Aboriginal Health. A few central tenets of cultural safety emerged from this review. First, cultural safety is inclusive of cultural competency (which includes having an understanding of colonial history, having an awareness of cultural differences, being culturally sensitive, and refining one’s skills, knowledge, and attitudes), but it extends further to include a focus on clinician self-awareness of his or her own historical and social location. Second, cultural safety emphasizes relationship building between client and practitioner by creating an environment of respect, acceptance, trust, caring, and empathy, and it encourages mutual goal setting for shared responsibility of care. Third, cultural safety employs a social justice lens to considering power imbalances in society and seeks to empower Aboriginal clients and communities in terms of advocacy and political power sharing. Fourth, it is the client herself/himself who determines whether the care she or he has received has indeed been culturally safe (ANAC, 2009; Brascoupé & Waters, 2009; IPAC, 2008; NAHO, 2006, 2008). This assessment of whether care has been culturally safe should be revisited over time and across multiple visits; therefore, cultural safety is an active and ongoing process. Although many of these tenets are universal principles of client-centred care, concepts of cultural safety are unique for Aboriginal Peoples when compared to other disadvantaged or oppressed groups in Canada. Brascoupé and Waters (2009) argue that while Canada is well known for having an ethic of cultural tolerance and for celebrating ethnic diversity, this reputation overlooks the long-standing assimilationist policies of the federal government toward Aboriginal Peoples that has historically denied them many of their human rights (Reading & Wien, 2009). Specifically, failure to distinguish between the colonized histories of Aboriginal Peoples and issues of other immigrant groups in Canada risks invalidating the centuries-long struggles of Aboriginal Peoples and their unique marginalization status at government hands. Aboriginal Peoples deserve recognition as an equal founding nation and thus have an inherent right to self-determination; therefore, cultural safety explicitly requires recognition of the cultural identity of Aboriginal Peoples and an understanding of the history of colonial repression (Brascoupé & Waters, 2009).

Participants, Setting, and Intervention There are approximately 57,000 students enrolled in postsecondary health sciences programs across Ontario. At present, the majority of the health sciences programs in colleges and universities that are training frontline healthcare workers across Ontario have little to no curriculum content on Aboriginal cultural safety (Shah & Reeves, 2012). This is in part due to the lack of available Aboriginal faculty members in these institutions. The ACSI sought to train students to better prepare them to serve Aboriginal clients and work with these clients in a culturally safe manner. A 3-hour cultural safety training seminar for students was developed, drawing heavily from the work of the Indigenous Physicians Association of Canada (IPAC, 2008). The ACSI was created to address the lack of curriculum content on the impacts of colonization on Aboriginal health outcomes and culturally safe care for Aboriginal clients. Further, we sought to transmit this relevant knowledge through trained volunteer Aboriginal instructors who could also share lived experiences on these topics. Based on a literature review of cultural safety in healthcare, a curriculum design workshop with Aboriginal experts from academia, and ongoing revisions with these professors, our curriculum incorporated the tenets of cultural awareness, cultural sensitivity, cultural competence, and cultural safety. Within the framework of cultural safety, we hoped that students would first engage in a process of self-reflection, in order to understand that cultural values and

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves norms of the practitioner and client may be different due to unique sociopolitical histories. In turn, we hoped that this process of self-reflection would lead to empathy for the client, which we conceptualized as the ability to understand and share another person’s mental, social, and emotional experience, or to “walk in their shoes” in a sense. Our goal was to improve each therapeutic encounter with clients and their communities, ultimately leading to improved health outcomes. Practicing cultural safety could also involve advocacy and social justice work on behalf of clients and their communities. Thus, the overarching goal of the ACSI was to improve health outcomes of Aboriginal peoples, either by improving encounters between clients and healthcare providers or by encouraging providers to become health advocates for Aboriginal communities. Figure 1 reflects a holistic image of cultural safety and was developed for this intervention by the ACSI team.

Figure 1. Conceptual model developed for the Aboriginal Cultural Safety Initiative

The curriculum content for the ACSI was organized around three modules: (a) The impact of colonial and postcolonial policies on social determinants of health of Aboriginal Peoples, (b) Contemporary health determinants and health status of Aboriginal Peoples, and (c) Aboriginal concepts of health and healing practices. The curriculum also included content on the organization of health services for Aboriginal peoples, as well as gaps in services and barriers to receiving services for Aboriginal peoples. The success of the initiative rested on the ability of volunteer instructors to transfer knowledge and inspire change. These instructors were willing to share personal, family, and community examples to supplement the course materials and to engage students on a more intimate level. They also incorporated personal and local community traditions into the training sessions, including talking circles, drumming and singing, and smudging. A group of 32

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves

Aboriginal instructors made up our teaching cadre and represented lay volunteers who were located across Ontario and in proximity to colleges and universities. We organized the first training workshop in Toronto in June of 2011 for the volunteers prior to their receiving invitations to deliver the seminar in classrooms. The Aboriginal volunteers were invited to return to Toronto for a second gathering with us the following year, in order to debrief about their experiences and offer suggestions for improvement. This intervention involved delivering the curriculum content to students and asking students to voluntarily complete a cultural safety course evaluation. Ethics approval for this intervention was not sought from an academic institution, but Aboriginal community ethics approval was obtained through consultation with the Anishnawbe Health Toronto ethics team. Our volunteer Aboriginal instructors were asked to inform students about local Aboriginal community resources should students wish to obtain further information on these topics, as well as local counselling resources at the college or university should the students feel the need to seek out these services after exposure to stories about colonization and associated traumas. A multifaceted awareness campaign for the initiative was undertaken to promote uptake of the seminar, including efforts to make direct contact with health sciences deans of colleges and universities as well as course instructors via letters, emails, telephone contact, and distribution of promotional materials; through the development of a dedicated website, promotional materials, and videos; and through newspaper coverage and participation in radio and television talk shows. This initiative also gained public awareness when it was awarded a Canadian Race Relations Foundation’s Honourable Mention in the category of Best Practices in their 2012 Awards of Excellence; when it was included as an innovative practice in the Health Council of Canada’s 2012 report; and most recently when it received the 2014 Health Equity Award through the Association of Ontario Health Centres.

Evaluation Methods Students participating in the seminars were invited to complete a two-page evaluation tool (see Appendix) which looked at (a) whether the Aboriginal Cultural Safety Initiative of Anishnawbe Health Toronto made a difference in terms of increasing student knowledge of Aboriginal health and history, and increasing personal interest in Aboriginal cultural safety; and (b) the effectiveness of trained volunteer Aboriginal instructors in teaching the subject matter. Specifically, the tool measured students’ (a) knowledge of content on Aboriginal health (the Indian Act and government policies, residential schools, determinants of health, health outcomes, Aboriginal cultures generally, and understanding of cultural safety), and (b) personal interest in the seminar topics (Aboriginal Peoples’ cultures and well-being, cultural competence and cultural safety for Aboriginal Peoples in Canada, and advocacy and/or empowerment work). We also asked students to rate the instructor’s clarity, enthusiasm, interest, and teaching ability. To assess these items, we employed quantitative measures in the form of Likert scales ranging from 1 to 5, with descriptions of Very poor to Excellent; these scales were collapsed into three ratings (Excellent/Good, Fair and Poor/Very poor) for the analysis. Additionally, we invited qualitative responses regarding students’ enjoyment of the sessions, suggested areas for improvement, and opinions as to whether and how the knowledge will impact their future work. Prior to the seminar, course instructors distributed the survey and students were asked to complete the first page (see Appendix). Following the completion of the seminar, students were asked to turn over the paper and respond to the same items, as well as rating the instructor. Students completed this evaluation tool on a voluntary basis, and not all students chose to submit

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves their evaluation. An independent program evaluator was hired to analyze the results of the evaluations in order to look at change in knowledge and personal interest in these topics following the seminar.

Results Health sciences course instructors invited our volunteer Aboriginal instructors into the classroom to deliver the cultural safety training to students. Although attendance was not taken in classrooms, we estimate that approximately 1,500 students attended the cultural safety training each semester from the fall of 2011 to the fall of 2013. Sessions were held in a variety of colleges and universities throughout Ontario, with the majority of sessions being held in the southern Ontario region. In total, 34 sessions were delivered at eight institutions, and 18 of the 32 instructors were invited to deliver one or more sessions to students in the following health sciences streams: nursing, naturopathic medicine, chiropractic medicine, the Physician Assistant Initiative, medicine, speech language pathology, and clinical psychology residency. The remaining instructors did not have an opportunity to deliver the training, as the colleges and universities in their regions did not institute the program. Data from 1,275 student evaluations were analyzed to consider percentage change in student ratings from prior to the seminar to after the seminar. In addition, responses from three discrete qualitative questions were collected for descriptive purposes and were grouped and arranged thematically. Of the 1,275 student evaluations, 240 were not included in the quantitative analysis due to several content changes made by a volunteer instructor on those particular evaluation forms. While the majority of students did complete the evaluation, Aboriginal instructors reported that some students declined to do so, and the specific level of participation for this evaluation was not recorded.

Quantitative Results Table 1 indicates results from the evaluation questions designed to measure change in students’ perceptions of their knowledge of the curriculum content before and after the session. These findings suggest that students perceived their knowledge in these areas to have increased substantially as a result of the seminar. For instance, student ratings of Excellent/Good knowledge of residential schools increased by 49.8 percentage points (218% change) following the seminar and their ratings of Poor/Very Poor knowledge of residential schools decreased by 41.3 percentage points (95% change) following the seminar. “Understanding of cultural safety” showed an increase in ratings of Excellent/Good on this tool of 13.4 percentage points, or 179% change

Table 1 Self-Assessed Knowledge Ratings by Students Before and After Aboriginal Cultural Safety Training Topic Rating Before After (N = 1,035) (N = 1,035) % # % # Indian Act, government Excellent/Good 13.5 140 59.1 611 policies affecting Aboriginal Fair 21.1 218 33.1 343 Peoples Poor/Very Poor 63.2 654 4.6 48 No response 2.2 23 3.2 33

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Residential schools Excellent/Good 22.8 236 72.6 751 Fair 31.2 323 21.7 225 Poor/Very Poor 43.6 451 2.3 24 No response 2.4 25 3.4 35 Determinants of health for Excellent/Good 28.8 298 74.3 769 Aboriginal Peoples Fair 34.6 358 19.8 205 Poor/Very Poor 34.0 352 2.3 24 No response 2.6 27 3.6 37 Health outcomes for Excellent/Good 25.9 268 69.7 721 Aboriginal Peoples Fair 33.6 348 23.0 238 Poor/Very Poor 37.9 392 3.6 37 No response 2.6 27 3.8 39 Aboriginal cultures generally Excellent/Good 19.0 197 64.4 667 Fair 31.9 330 28.1 291 Poor/Very Poor 46.6 482 3.8 39 No response 2.5 26 3.7 38 Understanding of cultural Excellent/Good 7.4 77 20.8 215 safety Fair 9.6 99 8.3 86 Poor/Very Poor 14.9 154 2.1 22 No response 68.1 705 68.8 712

Table 2 indicates results from the evaluation questions designed to measure students’ personal interest in these topic areas before and after the session. As with knowledge of content, personal interest in these topics increased, according to student ratings. In terms of Excellent/Good ratings, student interest in Aboriginal Peoples’ culture increased by 29.1 percentage points (56%), student interest in cultural safety increased by 27.9 percentage points (54%), and student interest in advocacy work in this area increased by 31.8 percentage points (75%).

Table 2 Self-Assessed Ratings of Personal Interest by Students Before and After Aboriginal Cultural Safety Training Personal interest Rating Before After (N = 1,035) (N = 1,035) % # % # Interest in Aboriginal Excellent/Good 51.8 536 80.9 837 Peoples’ culture and well- Fair 33.9 351 13.7 142 being Poor/Very Poor 11.6 120 1.9 20 No response 2.7 28 3.5 36 Interest in cultural Excellent/Good 51.6 534 79.5 823 competence/cultural safety for Fair 32.5 336 14.7 152 Aboriginal Peoples in Canada Poor/Very Poor 12.9 134 2.0 21 No response 3.0 31 3.8 39

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Interest in advocacy and/or Excellent/Good 42.5 440 74.3 769 empowerment work in this Fair 36.8 381 18.1 187 area Poor/Very Poor 17.2 178 3.9 41 No response 3.5 36 3.7 38

We also asked students to rate the effectiveness of the seminar in terms of instructors’ teaching abilities. Table 3 indicates student ratings of instructors. These results indicate that the majority of students found their instructor’s clarity, enthusiasm, and teaching ability to be in the Excellent/Good ranges. Table 3 Student Ratings of Aboriginal Instructors Teaching Qualities Rating N = 1,035 (%) Clarity Excellent/Good 87.6 Fair 10.5 Poor/Very Poor 0.6 Invalid/No response 1.3 Enthusiasm/Interest Excellent/Good 89.7 Fair 8.1 Poor/Very Poor 0.7 Invalid/No response 1.5 Teaching Ability Excellent/Good 85.8 Fair 11.4 Poor/Very Poor 0.9 Invalid/No response 1.9

Qualitative Comments The qualitative comments from students were overwhelmingly positive. Figure 2 graphically illustrates the frequency of words found in the student evaluation responses when asked, “What did you enjoy about the seminar?” Responses to this question touched on themes related to knowledge building and to personal understandings through family stories. One student noted, “I enjoyed learning more in-depth information about Aboriginal people,” while another student stated, “This has made me more aware of what actually occurred in the lives of these individuals.” One student felt the seminar was “very applicable” to his or her nursing practice and that this experience was “very eye opening.” Some students felt the inclusion of an Aboriginal instructor to teach the seminar was especially memorable. One student wrote, “Her personal stories about her family’s experiences with residential schools and reserves helped to bring meaning to the content.”

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Figure 2. Words most commonly used to describe what students enjoyed about the Aboriginal Cultural Safety Training

Students were also asked, “How will this impact your future work, if at all?” Hundreds of positive comments were returned from students, relating to the themes of cultural safety introduced earlier in this paper. For instance, many students described engaging in a process of self-reflection. One student wrote that she or he will be “aware of [her or his] misconceptions regarding Aboriginal people” and will be “culturally sensitive in [her or his] work.” Another student offered the following: “I now know to reflect on my own beliefs and values and be more open to others who have different cultures.” Students also included comments related to the practice of empathy. One student wrote, “I will apply the culture-sensitive approach to Aboriginal community in order to build trust and provide proper health care.” Another student described the importance of acknowledging that “people have had a traumatizing past that affects them today” and that we need to “keep in mind their history and be culturally sensitive when providing care.” Finally, many students stated that they wished to engage in advocacy work moving forward. One student described this seminar as a “catalyst” to want to learn more about the “Canadian political climate and how it affects Aboriginal health.” Another student described an interest in “advocating for means of support toward cultural safety for Aboriginal peoples.” It should also be noted, however, that a few students indicated that the information shared during the seminar would not help them in their future practice. These students represented a small minority, as reflected by the responses indicating Poor/Very Poor personal interest in these topics listed in Table 2. The following quote captures the perspective of one of these students:

Overall I thought it was a good presentation; however I feel very strongly [against] discrimination. I accept—would treat an Aboriginal as I would any other person (obviously, taking into consideration cultural differences). However, I felt that this presentation in a way was putting down “non-Aboriginal” persons, which made to seem that Aboriginal people should be granted “special rights.”

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Overall, however, the results from this evaluation indicate that the vast majority of students learned the key concepts of Aboriginal cultural safety and reported that this seminar will impact their future clinical work with Aboriginal clients.

Discussion The Aboriginal Cultural Safety Initiative constitutes the only Aboriginal-specific and province-wide cultural safety initiative offered in Ontario colleges and universities. The willingness of the Aboriginal instructors to augment the seminar with their own cultural and personal knowledge was strongly linked to the initiative’s success, according to student feedback. Overall, the ACSI was able to impart the intended learning objectives to a wide array of students across health sciences disciplines in Ontario, and knowledge of Aboriginal health and well-being significantly improved among student learners. In addition, student evaluations indicated in increase in interest in Aboriginal well-being, Aboriginal cultural safety, and advocacy work in this area. These results also demonstrate that while a major reason this content is not already being delivered across more college and university health sciences programs is a lack of appropriately trained staff, trained Aboriginal instructors can fill this role and deliver the content in a manner that students find clear, enthusiastic, and interesting. This study was limited by its relatively small scope. It was a demonstration project that sought to ascertain whether recruiting trained volunteer Aboriginal instructors to teach a seminar on Aboriginal cultural safety could increase student knowledge and student interest in this area. We were not able to engage in a longitudinal study to follow this cohort of future health professionals out of postsecondary studies and into the healthcare field in order to determine whether this seminar impacted student attitudes and health practices in their work with Aboriginal clients. Future studies in this area could follow this cohort and observe interactions between health practitioners and their Aboriginal clients in order to determine whether care is seen as culturally safe by clients. This kind of outcome research could consider whether care has improved and whether this results in better health outcomes for Aboriginal clients. In terms of lessons learned from this project, it bears repeating that the major success of this program lay in the willingness of the Aboriginal instructors to share personal stories with the students. Students used positive descriptions in their evaluations when acknowledging their increased empathy for the instructor after hearing family stories or engaging in cultural traditions such as smudging or the passing of an eagle feather. A significant number of students indicated that they enjoyed learning about the history and stories they were not taught in mainstream public schools. The most substantial challenge faced by this initiative was to secure time in the already cramped curricula of health sciences programs across colleges and universities. There is an ongoing need for internal and external champions to promote this type of initiative within institutions. At the end of this pilot intervention project, we were fortunate to enter into a partnership with the Indigenous Peoples Education Circle, a group of committed Aboriginal professionals in Ontario’s colleges. This group will be taking over administration of the program as it moves forward, and they will act as catalysts and conduct the seminars in their respective colleges. Similarly, the program staff is working toward securing a permanent home within a university structure. The Aboriginal instructors for the pilot intervention recommended that more time be made available to teach this module, as they felt 3 hours was insufficient to sensitize students to this material. Also, it may be helpful for faculty to attend these training sessions, so that they

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The Aboriginal Cultural Safety Initiative: An Innovative Health Sciences Curriculum in Ontario Colleges and Universities • Chandrakant P. Shah, Allison Reeves may consider how themes related to colonization and cognitive imperialism are present in the education system, and to incorporate aspects of cultural safety into their teaching pedagogies, where appropriate. Other feedback suggested that this training become a mandatory prerequisite for students in certain classes that relate to social determinants of health for Canadians or cultural health education. It is hoped that this initiative will continue for students through Anishnawbe Health Toronto, the Indigenous Peoples Education Circle, and other community champions. Including content on cultural safety in the training of future healthcare practitioners in Canada is a timely and relevant issue, especially in light of events such as the experience of Brian Sinclair touched on in this paper’s introduction. We believe that interventions like the Aboriginal Cultural Safety Initiative can begin to address some of the systemic barriers, such as discrimination, that exist for Aboriginal healthcare consumers, in order to work toward preventing such tragedies.

References Aboriginal Nurses Association of Canada. (2009). Cultural competence and cultural safety in nursing education: A framework for First Nations, Inuit and Métis nursing. Ottawa, ON: Author.

Brascoupé, S., & Waters, C. (2009). Cultural safety: Exploring the applicability of the concept of cultural safety to Aboriginal health and community wellness. Journal of Aboriginal Health, 5(2), 6–41.

CBC News. (2014, February 18). Brian Sinclair’s family loses confidence, pulls out of inquest. Retrieved from http://www.cbc.ca/news/canada/manitoba/brian-sinclair-s-family-loses- confidence-pulls-out-of-inquest-1.2541167

Gracey, M., & King, M. (2009). Indigenous health part 1: Determinants and disease patterns. The Lancet, 374(9683), 65–75. doi:10.1016/s0140-6736(09)60914-4

Health Council of Canada. (2012). Empathy, dignity, and respect: Creating cultural safety for Aboriginal people in urban health care. Toronto, ON: Author.

Indigenous Physicians Association of Canada. (2008). The First Nations, Inuit, Métis Health Core Competencies: A curriculum framework for undergraduate medical education. Winnipeg, MB: Author.

King, M., Smith, A., & Gracey, M. (2009). Indigenous health part 2: The underlying causes of the health gap. The Lancet, 374(9683), 76–85. doi:10.1016/s0140-6736(09)60827-8

National Aboriginal Health Organization. (2006). Fact sheet: Cultural safety. Ottawa, ON: Author.

National Aboriginal Health Organization. (2008). Cultural competency and safety: A guide for healthcare administrators, providers and educators. Ottawa, ON: Author.

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Ramsden, I., & Spoonley, P. (1994). The cultural safety debate in nursing education in Aotearoa. New Zealand Annual Review of Education, 3,161–174.

Reading, C. L., & Wien, F. (2009). Health inequalities and social determinants of Aboriginal Peoples’ health. Prince George, BC: National Collaborating Centre for Aboriginal Health.

Shah, C. P., & Reeves, A. (2012). Increasing Aboriginal cultural safety among health care practitioners [Letter to the editor]. Canadian Journal of Public Health, 103(5), e397.

Statistics Canada. (2010). Aboriginal identity population by age groups, median age and sex, 2006 counts for both sexes, for Canada, provinces and territories - 20% sample data. Retrieved from http://www12.statcan.ca/census-recensement/2006/dp-pd/hlt/ 97558/pages/page.cfm?Lang=E&Geo=PR&Code=01&Table=1&Data=Count&Sex=1& Age=1&StartRec=1&Sort=2&Display=Page

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Appendix: Seminar Evaluation

Please take a few moments to complete this evaluation form. It has two parts. The first page rates your knowledge and interest before the seminar. The second page rates your knowledge and interest after the seminar (including your comments). Your experience and perspective are important to us and will help us to improve our work. Your comments will be treated confidentially and anonymously. For each of the items below, circle the number on the 5-point scale that best describes your evaluation of the Cultural Safety seminar.

PART 1- BEFORE THE SEMINAR 1. Please rate your knowledge of these concepts:

Knowledge of Content Very Poor Fair Good Excellent Poor a. Indian Act, government policies affecting 1 2 3 4 5 Aboriginal peoples b. Residential Schools 1 2 3 4 5 c. Determinants of Health for Aboriginal 1 2 3 4 5 Peoples d. Health Outcomes for Aboriginal Peoples 1 2 3 4 5 e. Aboriginal Cultures generally 1 2 3 4 5 f. Understanding of Cultural Safety 1 2 3 4 5

2. What is your interest in the following:

Personal Interest Very Poor Fair Good Excellent Poor a. Interest in Aboriginal peoples’ culture and well- 1 2 3 4 5 being b. Interest in cultural competence/ cultural safety 1 2 3 4 5 for Aboriginal peoples in Canada (or *diversity generally*?) c. Interest in advocacy and/or empowerment work 1 2 3 4 5 in this area

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PART 2- AFTER THE SEMINAR

3. Please rate your knowledge of these concepts:

4. What is your interest in the following:

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5. Please rate the presentation provided by the Preceptor

Very Poor Poor Fair Good Excellent

1. Clarity 1 2 3 4 5 2. Enthusiasm/Interest 1 2 3 4 5 3. Teaching Ability 1 2 3 4 5

What did you enjoy about the seminar?

What can be improved about the seminar?

How will this impact your future work, if at all?

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions REVISED REFERENCES, 04/13/2016

Abstract Asthma is one of the most common chronic conditions affecting Aboriginal children and adolescents in Canada, with associated high rates of hospitalization and emergency room visits. Social support deficits and social isolation pose significant problems for Aboriginal families coping with asthma challenges. However, support interventions that focus on the unique support needs of parents of Aboriginal children affected by asthma have not been investigated. Consequently, our study introduced support interventions to meet parents’ perceived support needs and intervention preferences. The study was conducted in urban and rural sites in three Canadian provinces. The interdisciplinary research team encompassed Aboriginal researchers and knowledge users, and the multimethod participatory research design was guided by Aboriginal community advisory committees. Diverse support interventions, designed to address the particular preferences and needs of parents in specific communities, were offered. Seventy- seven parents participated. These parents reported expanded support resources, increased support seeking, improved coping skills, and decreased support and education needs following the interventions, which were tailored to their unique needs. These participatory interventions were considered accessible, acceptable, relevant, and useful by parents. Keywords Aboriginal, asthma, support, education, intervention, participatory, parents, children

Authors Miriam Stewart, PhD, FCAHS, FRSC, held primary responsibility for research in the Alberta site and for article development and revisions. Heather Castleden, PhD, performed data collection, analysis, and intervention implementation in the Nova Scotia site. Malcolm King, PhD, was responsible for intervention design and guidance for the Alberta site. Nicole Letourneau, RN, PhD, was responsible for article revision. Jeffrey R. Masuda, PhD, performed data collection, analysis, and intervention implementation in the Manitoba site. Lisa Bourque Bearskin, RN, MN, PhD candidate, was responsible for collaborating with Aboriginal organizations. Sharon Anderson, MEd, MSc, PhD, was responsible for data collection and analysis, as well as draft report preparation for the funder. Roxanne Blood, BA, was responsible for intervention implementation.

Acknowledgements The following team members made this project possible: Mara Fridell, site coordinator (Manitoba); Carey Sinclair, research assistant (Manitoba); Hazel McKennitt, chair, community advisory committee in Alberta; Rob Watson, Nova Scotia site coordinator. We are grateful to the parents and caregivers who participated in interviews and in support intervention activities. The team appreciates that you shared your time, experience, and

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood insights. Funding provided by AllerGen NCE for Alberta, Manitoba, and Nova Scotia sites; CIHR for Alberta site.

Introduction Asthma and allergies continue to pose major health challenges in Canada (Statistics Canada, 2013), particularly among Aboriginal children, imposing negative impacts on physical health, psychosocial well-being, and quality of life (First Nations Information Governance Centre [FNIGC] , 2007; Chang, Beach, & Senthilselvan, 2012) and high rates of hospitalization and emergency room visits (Rosychuk et al., 2010; To, Dell, Tassoudji, & Wang, 2009). Although asthma and allergies have been reported to be the most common chronic conditions affecting Aboriginal children and adolescents in Canada (King, Zayas, & Martial, 2004; Kovesi, 2012), some recent data suggest that the prevalence is similar (12%) to other Canadian children (Crighton, Wilson, & Senécal, 2010; MacMillan et al., 2010). However, asthma may be underdiagnosed among Aboriginal people in isolated or remote areas (Gessner & Neeno, 2005). Low levels of asthma control and more emergency room visits may also be linked to reduced access to asthma specialists for rural and/or isolated populations (Sin, Wells, Svenson, & Man, 2002). Canadian studies (McIvor, Boulet, FitzGerald, Zimmerman & Chapman, 2007; Public Health Agency of Canada, 2008) reveal high health burdens related to asthma and relevant risk factors such as smoking. Hospitalization rates linked to asthma and bronchitis among Aboriginal children increased 200% since the 1980s, compared with a 50% increase for non-Aboriginal children (FNIGC, 2007; Boffa, King, McMullin, & Long, 2011). Thirteen percent of First Nations children under 19 have asthma, and associated treatment levels are low (Crighton et al., 2010; First Nations Information Governance Centre [FNIGC], 2011). Despite the higher rates of respiratory illness and associated health care utilization among Aboriginal children, factors underpinning inequitable health outcomes require elucidation (Crighton et al., 2010; Rosychuk et al., 2010). Risk factors for Aboriginal people with asthma include higher exposure to overcrowded housing and air pollution, higher smoking rates among First Nations youth (FNIGC, 2007), and lower use of specialist services suggesting access barriers (Sin, Svenson, Cowie, & Man, 2003). In Alberta, parents of Aboriginal children with asthma describe time-consuming caregiving demands (Sin et al., 2002), mood and anxiety disorders, and depression linked with asthma- related hospitalizations of their children (Lee, Parker, DuBose, Gwinn, & Logan, 2006). Social support is a determinant of health, a health promotion mechanism, and a protective factor in resilience for Aboriginal Canadians (Richmond, Ross, & Bernier, 2007; Richmond, Ross, & Egeland, 2007). Significant gaps in social support and social isolation for children with asthma and allergies and their parents have been reported in previous research (Cicutto et al., 2005; Kapoor et al., 2004; McGhan et al., 2003; Tsuyuki, Sin, & Sharpe, 2005). Families of non- Aboriginal children with chronic conditions, including asthma, report a desire for more information support (Farmer, Marien, Clark, Sherman, & Selva, 2004; Kieckhefer & Ratcliffe, 2000). Income challenges and changing help patterns in Aboriginal communities negatively affect support reciprocity (Richmond, 2007). Aboriginal parents could benefit from support to help manage asthma and allergies (FNIGC, 2007), but their support intervention needs and preferences have not been studied. Despite reported needs for support from peers in similar situations for children and adolescents with asthma (Bruzzese et al., 2004; Kyngas, 2004) and their parents (Kieckhefer & Ratcliffe, 2000), and the importance of peers for Aboriginal children

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood and adults (Valentine, Dawar, & Wardman, 2003), support programs engaging peers have not been tested. Moreover, interventions that address the support needs identified by Aboriginal children with asthma and allergies and their parents are exceedingly rare (Stewart et al., 2013; Watson, Castleden, Masuda, King, & Stewart, 2012). The research reported is part of a multisite study examining support intervention preferences of Aboriginal children and youth with asthma and their parents/caregivers and developing pertinent interventions. The focus of this paper is the design and testing of support interventions, based on parents’ assessed support needs and preferences. Accordingly, the objectives of this study were the following: 1. Assess the support resources, support needs, support-seeking strategies, and support preferences of parents of Aboriginal children with asthma and allergies. 2. Develop and implement an accessible and appropriate support intervention for these Aboriginal parents that overcomes geographic, physical, cultural, and temporal barriers and is based on their articulated preferences. 3. Evaluate health-related impacts of pilot support interventions deemed culturally appropriate by Aboriginal stakeholders. Figure 1 depicts the progression from assessment of support needs and preferences to

intervention design, implementation evaluation, and outcomes across the three study sites (Canadian provinces). Figure 1. Project progression

Methods The study was conducted by an interdisciplinary research team encompassing Aboriginal researchers and knowledge users, and employed a multimethod participatory research design (Bergold & Thomas, 2012; Tashakkori & Teddlie, 2003), with guidance from Aboriginal community advisory committees. Consistent with principles of participatory research (Ahmed, Beck, Maurana, & Newton, 2004; Bergold & Thomas, 2012; Boffa et al., 2011), parents of

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Aboriginal children and adolescents with asthma specified their preferred type, format, and substantive content of support interventions; helped select specific interventions; and suggested changes for future interventions. The Aboriginal community advisory committees in each of the three study sites (Alberta, Manitoba, Nova Scotia) guided selection, screening, and training of project staff; development and amendment of interview guides and measures; identification of culturally appropriate recruitment strategies; design of the intervention; identification of optimum intervention outcomes; and knowledge translation strategies. Mixed methods (i.e., qualitative and quantitative) were used to corroborate, elaborate, and illuminate, thereby enhancing validity, transferability, and confidence (Creswell, 2013; Tashakkori & Teddlie, 2003). Qualitative methods were employed to promote understanding of sensitive issues, meanings, perceptions, beliefs, values, and behaviours regarding support needs, support intervention preferences, anticipated outcomes, and appropriate intervention(s) and outcomes (Ahmed et al., 2004; Schulze, 2003). Qualitative data on intervention processes and factors influencing the intervention gave voice to the experiences of participants and helped elucidate the “black box” (who, what, where, when, why, how) of the psychosocial interventions (Stewart, Letourneau, & Kushner, 2010). Quantitative methods elicited data relevant to testing outcomes through structured measures administered prior to and following the intervention. Quantitative measurements helped extend and refine qualitative data (Schulze, 2003) and may enable potential relevance (Creswell, 2013; Schulze, 2003) for other Aboriginal parents of children with asthma.

Relationships Community Advisory Committees Three community advisory committees were created to include representatives of the First Nations and Inuit Health federal government branch, Aboriginal health service organizations, and First Nations and Métis communities. Alberta. A community advisory committee comprising 10 Aboriginal community leaders provided guidance on the development, implementation, and evaluation of the study. To protect the rights of Aboriginal children, adolescents, and their parents, this committee reviewed the process of informed consent (e.g., information letters, consent forms) for cultural and linguistic appropriateness. The study was approved by Aboriginal community leaders, participating agencies and organizations, and the university ethics committee. Urban and rural communities were selected as study sites in consultation with the community advisory committee. Manitoba. Research undertaken with First Nations people in Manitoba requires formal approval from the Health Information and Research Governance Committee, an oversight body comprising researchers, elders, staff, and representatives of the Assembly of Manitoba Chiefs. The research team formalized a research partnership with Dakota Tipi First Nation, a reserve located south of the small town of Portage La Prairie. The elders determined that the study, as a community-based participatory project with previously secured support of the Assembly of Manitoba Chiefs and its research ethics supervisors, was consistent with the community’s health goals.

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Nova Scotia. Relationships were developed with five Mi’kmaq communities (Eskasoni, Waycobah, Wagmatcook, Potlotek, and Membertou) in Unama’ki (Cape Breton), Nova Scotia, through each community’s health director. Once this relationship was established, a local advisory committee (consisting of community health nurses and community health representatives from each community) was appointed by the health directors to guide the research in these communities. Ethics approval was secured from Dalhousie University’s Health Sciences Research Ethics Board, as well as from the Mi’kmaw Ethics Watch, an independent process to ensure that research involving Mi’kmaq people is culturally appropriate and safeguards Indigenous knowledge (Mi’kmaw Ethics Watch, 1999). The following sections describe the specific methods and results for each objective. The process and results organized by provincial site are summarized in Appendices A through C.

Assessment of Support Needs and Intervention Preferences (Objective 1) Participants and Procedures Seventy-seven parents of Aboriginal children with asthma and allergies participated in the assessment interviews to express preferences regarding support interventions (Alberta, n = 54; Manitoba, n = 9; Nova Scotia, n = 17). Alberta. Parents from three Métis communities (Buffalo Lake, Kikano, Elizabeth) and nine First Nations communities (Blood Tribe, Cold Lake First Nations, Enoch Cree Nation, Fort McKay, Kehewin, Whitefish Lake First Nation, Siksika Nation, Samson Cree Nation, Tsuu T’ina Nation) in Alberta participated in these interviews. Individual in-depth interviews with parents were conducted in person (n = 51) by trained Aboriginal community-based interviewers. Data saturation (i.e., no new themes in the qualitative interview data; Creswell, 2013) helped determine when recruitment of participants was completed. A semi-structured individual interview guide was used to elicit parents’ perceptions of (a) their caregiving demands and challenges requiring support; (b) their coping strategies, including support seeking; (c) their support needs and support resources; (d) programs serving Aboriginal children/adolescents with asthma and their parents; (e) gaps in supports and services; (f) preferences for culturally appropriate support interventions for children and parents; and (g) culturally appropriate intervention outcomes. Two in-depth group interviews with parents/ guardians (n = 25) were subsequently conducted in Alberta (one rural, one urban) to verify and clarify specific features of recommended support interventions. The community advisory committee (nine leaders/elders from First Nations and Métis communities and three Aboriginal health professionals) met in a one-day retreat to (a) discuss results of these individual and group interviews and (b) provide advice on design of support interventions for urban and rural settings in Alberta. The research team and the community advisory committee leaders, an Aboriginal elder, and Aboriginal research assistants met to discuss the design, development, and evaluation of support interventions based on parents’ needs and preferences revealed through interviews. Manitoba. Nine caregivers, including three parents, five guardians/relatives, and a professional caregiver participated in a group interview. Seven caregivers were Dakota, one was Métis, and

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood one was a Euro-Canadian parent of an Aboriginal child. During group interviews, participants received a synopsis of the results from individual interviews and were asked if the interpretations were accurate and appropriate in their view. Nova Scotia. With guidance from the advisory committee, six Mi’kmaq community researchers were trained in participant recruitment and qualitative data collection techniques. Mi’kmaq families (including 17 parents) were recruited from across five communities. The community researchers conducted semistructured individual interviews with parents to identify their asthma-related support needs and intervention preferences. Interviews were conducted in English with occasional, spontaneous use of Mi’kmaq if participants preferred and the community researcher knew the language.

Results Alberta. Parents perceived that they lacked support to manage their children’s asthma and allergies. Some parents indicated they had insufficient information regarding health implications of asthma, prescribed and traditional medication use, and allergen avoidance. They were concerned about mold in their homes and environmental risks (e.g., dust, smoking, ground fires). Parents wanted support to understand and manage asthma; information on use of prescribed, over-the-counter, and traditional medications; advice regarding communication strategies with health professionals; and insights from other Aboriginal parents on management of their children’s health condition. Some parents thought people in their Aboriginal communities were unaware how many Aboriginal children were affected by asthma and other respiratory health conditions. They wanted advice from health professionals, along with face-to-face support from both Aboriginal peers and professionals. Parents contended that they needed culturally appropriate support, education, community awareness, and child care during support intervention sessions. Parents confirmed that Telehealth – oneHealth was an appropriate vehicle for delivering support and selected relevant topics for discussion in peer support groups. Manitoba. Dusty roads, insufficient federal support of housing, overcrowded multigenerational housing, nearby air-polluting industry, poverty, and concomitant risky health behaviours were identified as conditions contributing to poor respiratory health as well as to major support deficits and support needs. Intervention preferences focused primarily on children’s and adolescents’ needs, including an after-school group. Nova Scotia. Virtually all parents were aware of their child’s specific asthma “triggers” (e.g., household mold, smoking, animal dander, exercise, seasonal change, extreme cold or humidity) and had developed some prevention strategies for avoiding triggers. They relied on lived experience and medical advice when managing their child’s asthma, and reported insufficient community-level asthma support. Geographic distance was identified as a major barrier to accessing supports outside their communities. Moreover, support resources external to their communities were available only in English, whereas Mi’kmaq was the preferred language for many parents. Parents noted reliance on other family members for psychosocial support needs, and on health professionals for information regarding physiological aspects of asthma. Parents desired increased information and educational resources to help manage their child’s asthma.

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Recommended support interventions included education, support groups, and information provided in Mi’kmaq language. Parents suggested culturally relevant, school-based asthma support and awareness training.

Support Intervention Development and Implementation (Objective 2) Forty parents/caregivers of Aboriginal children with asthma and allergies participated in the pilot support interventions (Alberta, n = 20; Manitoba, n = 3; Nova Scotia, n = 17). All interventions were designed to provide support and education for these parents. Specific interventions in each site were determined by preferences expressed in assessment interviews regarding intervention mode (e.g., face-to-face, telephone); supporters/helpers (e.g., peers, professionals); timing, frequency, and duration of support sessions; and discussion topics. All support programs were facilitated by trained Aboriginal peer mentors, health professionals, and/or Aboriginal elders. To accommodate preferences of parents in different communities and distance to rural Aboriginal communities, diverse pilot support interventions were designed, implemented, and pilot tested in the three study sites. To enhance accessibility of these interventions for parents of Aboriginal children regardless of socioeconomic status and geographic location, transportation and child care were provided when needed. Similar postintervention interview guides were used across all three sites. Participants and Procedures Alberta. Twenty parents/caregivers from one rural reserve (n = 8) and an urban centre (n = 12)— l5 First Nation, 4 Métis, and 1 Caucasian—participated in the support interventions in Alberta. Participants comprised 15 parents, three grandparents, and two guardians caring for First Nations or Métis children. Parents in the assessment interviews recommended pilot face-to-face support programs in one urban and one rural community, and suggested Telehealth as a delivery mechanism for rural parents. Consistent with these preferences, face-to-face support group interventions, supplemented by Telehealth, were implemented and tested. Eight support group sessions were delivered by professionals through Telehealth to rural Aboriginal parents. Following each session, an Aboriginal peer facilitator and Aboriginal health professional provided face-to-face support in the rural First Nations health centre. To accommodate distance, oneHealth (the Telehealth portal sponsored by First Nations and Inuit Health) was used to link rural and remote First Nations communities to health professionals with expertise relevant to asthma and allergies. Parents met at the health centre to interact with health experts and peers on Telehealth – oneHealth. Topics included asthma management, use of asthma medications, communicating with health professionals, keeping homes allergen and mold free, avoiding asthma triggers, culturally relevant and safe use of traditional medicine, tobacco, etc. After each formal Telehealth session ended, parents at the health centre discussed with a trained Aboriginal peer mentor and health professional what they learned and how that applied to management of their child’s condition. As the sessions at the health centre were open to the community, approximately 20 extra people attend the in-person group sessions, in addition to the 8 participants who attended most sessions and completed the pre and postintervention interviews and measures. As the sessions were available to all First Nations and Métis health centres through the oneHealth portal, an average of 30 Aboriginal people at 15 rural health centres also participated in each session. These sessions continue to be available on the oneHealth Internet site.

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Eight face-to-face support group sessions were delivered by a trained Aboriginal peer mentor and a health professional weekly at an inner city school with an infused Aboriginal curriculum. These urban parents discussed topics similar to those requested by rural parents, but also wanted information on urban services and supports. Both support group sessions lasted two to three hours. All 20 parents were interviewed individually prior to and following these support interventions. A 10-item semistructured interview guide elicited qualitative data regarding intervention processes, perceived intervention impacts, and recommended changes. Three standardized quantitative measures—UCLA Loneliness Scale (Russell, 1996), Personal Resource Questionnaire (Weinert, 2003), and Proactive Coping Inventory (Greenglass, Schwarzer, & Taubert, 1999)—were administered to parents. These were deemed culturally appropriate by the Aboriginal advisors and had good psychometric properties. These quantitative pretest and posttest measures were administered only in the Alberta site. Manitoba. Although the urban Manitoba intervention was designed primarily for adolescents with asthma and allergies, three parents from the Dakota Tipi tribe (2 mothers, 1 father) attended face- to-face support group sessions and participated in postintervention qualitative interviews. Nova Scotia. The same 17 Mi’kmaq rural parents who participated in assessment interviews attended, with their children, a 2-day asthma camp that combined needs assessment with support intervention. The camp intervention included Aboriginal ceremonies (smudging, prayer); cultural activities (drum-making, drumming, singing, dancing); entertainment (games, art, relay races, movie night); social support (informal networking opportunities); and education (asthma awareness training, guest speakers with expertise in asthma support). Intervention activities had spontaneous bursts of Mi’kmaq language use but the activities were not formally conducted in the language. One sharing circle and one focus group were held with the parents/caregivers and were facilitated by community researchers. The sharing circle and focus group were digitally recorded and transcribed to ensure accuracy. The research team observed participants, recorded field notes, and held two debriefing sessions during the gathering. All data were translated and transcribed in English.

Evaluation of Impacts of Pilot Support Intervention (Objective 3) Data collection strategies included the following: standardized measures, individual interviews, a sharing circle, and a group interview.

Results Alberta. Based on results from the Personal Resource Questionnaire, urban Aboriginal parents reported significantly more social support resources than rural participants. Although the social support (Personal Resource) scores increased for both rural and urban participants following the support interventions, increases were not statistically significant. Loneliness mean scores were significantly lower at posttest, following the support intervention, than at pretest. Support seeking (as measured by the Proactive Coping Inventory) increased at posttest; however, this increase was not statistically significant.

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood In the posttest qualitative interviews, which extended and refined the data elicited by the quantitative measures, parents reported that they were more prepared to seek support following the interventions, but that support resources were only minimally available in their communities. They believed the support interventions had raised awareness of asthma in their community. Parents described the increased capacity of staff members at health centres to be community champions for asthma support following the support intervention.

My biggest wish is . . . if every health centre in [our region] would take one person and really seriously train them on this topic. So then they could pass on the information to the parents. Because a lot of the parents don’t have the proper information or they are not sure how to give the medication. That’s all I wish for. (Aboriginal mother)

Rural parents appreciated meeting on Telehealth, although oneHealth was available only from 9 a.m. to 5 p.m. Urban parents valued information regarding asthma and allergies received during the intervention. In postintervention interviews, urban parents said that after their positive experience with peer support from the support group interventions, they wanted similar support resources relevant to other challenges in their lives (e.g., siblings of child with asthma):

I learnt something new in each [support group] session; I did not know everything. I learnt bits and pieces where I had a better understanding of asthma. But for mold basically the reason why we had mold is because it [our home] wasn’t properly built and then we had to move out of the house because it was improperly built. (Parent) That’s a big thing, because most times you go to the drugstore, you take your prescription and it’s just given to you and now we have information there [in support group] on how to use it [the medication] properly. (Father)

One mother informed support group members that she was frustrated trying to find the right medication for her son:

That’s where a lot of them say that [my son] could have been on the same medication for years and didn’t know if that’s not helping him any. They can go back and get them assessed for something else that going to eventually work for them. They have to go through so many medications for one that’s going to actually work for him.

Parents of Aboriginal children with asthma wanted accessible delivery of health information to their community:

Actually that’s really what I like [about] it [Telehealth sessions], then you don’t have to go to the city to talk to the specialist, right? They brought the specialist to us, well they had it here. (Mother)

These parents emphasized how the support intervention helped them cope with their children’s asthma:

Actually using the information on clients that I wasn’t able to with my son, like I, I was aware working with my own son, but working with others now I’m actually going out

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood showing them how to use their inhalers with the spacer properly or doing the referral for them or giving their information to [health professional mentor] so they can utilize her. (Mother)

Participating parents and family caregivers noted other positive contributions of the support program:

That helps because . . . some people are terrified and they don’t want to talk about it in a public setting when you’re there and then you kind of say, “Hey, it’s okay.” Then you kind of direct them to who would know that answer that they’re looking for. (Mother)

Participants reported that they learned from the inquiries of other parents in the support groups:

People ask questions that you don’t even think about asking and then they’ll say, “Oh yeah that, you know, that’s another thing that I should have asked” and your questions are being answered, so yeah. (Mother) Manitoba. Parents perceived that the after-school support intervention for Aboriginal youth and parents/caregivers was interactive, engaging, culturally relevant, and community led. As one community elder who was the support program facilitator stated:

[At first] I assumed it was going to be more of an information session, based on the lungs, you know, how the lungs operate and, you know, the deterrents, the pros and the cons, you know, but ultimately it became a lot more than that . . . that was the good thing about it because . . . we had the dance, we had the games, we had our culture, all those components, you know, condensed into one. The delivery of asthma information within the context of traditional practices and lifestyles was appreciated by community members. Parents also appreciated the positive “demystification” of research by the support intervention activities, which stimulated their interest in community-based research and in life pathways beyond the reserve. Nova Scotia. Virtually all family caregivers commented on the value of the asthma camp intervention for connecting with their peers, specifically other Mi’kmaq parents dealing with asthma-related issues. According to these parents, the camp reduced their loneliness, improved asthma support and education, enabled social learning, enhanced friendships and family communication, and taught strategies for communicating with other community members. Participants also suggested that future community-based health interventions be undertaken in the language used by the community. Caregivers expressed a strong desire for ongoing support groups. One mother explained: “We need support groups . . . I really don’t have anyone else to go [to] other than my doctor.”

Limitations This pilot study had small sample sizes, particularly in some sites. Moreover, data collection techniques across sites were similar but not identical.

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Discussion and Conclusion Across the three sites, parents reported challenges with sudden and severe asthma attacks, knowledge gaps, poverty, blame imposed on parents for their child’s illness, underdiagnosis, uncoordinated health care, disrespectful treatment, environmental problems, and lack of culturally appropriate support. Diverse support intervention strategies were designed to address these challenges and were well received by parents of Aboriginal children, who described decreased support and education needs following the intervention across urban and rural sites, many of which were low-income. These perceived impacts are timely given recent government reports that social support gaps, coupled with high rates of poverty, create significant disparities in life chances between Aboriginal and non-Aboriginal children (Canadian Council of Child and Youth Advocates, 2011; Standing Senate Committee on Human Rights, 2007). Health problems related to asthma and allergies among Aboriginal children should be considered in the context of salient influences including social relationships, educational and community institutions, environmental conditions, government policies, and culture (Crighton et al., 2010; Nettleton, Napolitano, & Stephens, 2007). Parents could benefit from support and education in assisting their Aboriginal children to manage asthma. It is crucial for parents to understand what asthma is, what the symptoms are, what the signs of a severe asthma attack are, how to manage aggravations and when to pursue medical care, and how to avoid triggers (Kovesi, Giles, & Pasterkamp, 2012). Peer support and community education can enhance respiratory health, indoor and outdoor environments, and health behaviours in Aboriginal communities (Bhattacharyya et al., 2011; Richmond, 2007). There is abundant evidence of the detrimental impacts of asthma and allergies on parents, including loneliness, isolation, and support deficiencies (Bjorksten, 2000; Couriel, 2003). Indeed, social exclusion and social isolation have been associated with poor health outcomes and are intertwined with other social determinants of health, such as ethnicity, income, and social support (Marmot, 2007; Raphael, 2007). However, no previous studies had designed and tested support interventions that address the unique support deficiencies, needs, and preferences of parents of Aboriginal children with asthma in Canada. As there is little evidence available on effectiveness of different modes of support interventions for Aboriginal parents, and as participatory principles are paramount in research engaging Aboriginal people (Tri-Council, 2010), this study asked Aboriginal parents and Aboriginal service providers to select preferred interventions for specific groups (rural/urban), and pilot tested the unique intervention(s) selected by Aboriginal people in each site. These accessible support interventions fostered resilience and coping of Aboriginal parents in both urban and rural sites, and transcended physical and geographic barriers. Similar peer support interventions can improve relevance and uptake of health programs through support provision informed by needs and wishes of Aboriginal parents; increase the efficacy of health interventions by supplementing professional knowledge with credible experiential knowledge of peers; enhance capacity of Aboriginal parents to manage asthma and support others; enhance accessibility of interventions for Aboriginal parents that address cultural and geographic inequities; and inform development of policies promoting collaboration of health-related sectors. As this pilot research illustrates, community-based participatory interventions developed to meet the specific needs and wishes of parents in unique Aboriginal communities can be accessible and acceptable. This “different strokes for different folks” strategy reflects participatory principles, and seems to be more acceptable and accessible than a

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood generic “one size fits all” approach to interventions for vulnerable parents and caregivers of Aboriginal children with this chronic health condition.

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Supporting Parents of Aboriginal Children with Asthma: Preferences and Pilot Interventions • Miriam Stewart, Heather Castleden, Malcolm King, Nicole Letourneau, Jeffrey R. Masuda, Lisa Bourque Bearskin, Sharon Anderson, Roxanne Blood Richmond, C., Ross, N., & Bernier, J. (2007). Exploring Indigenous concepts of health: The dimensions of Métis and Inuit health. In J. White, D. Beavon, S. Wingert, & P. Maxim (Eds.), Aboriginal policy research: Directions and outcomes (Vol. 4, pp. 3–13). Toronto, ON: Thompson Educational Publishing.

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Appendix A: Alberta Study Activities

Assessment of Individual interviews: 54 parents from 3 Métis communities & 9 First Nation Support Needs communities & Intervention Group interviews: 1 rural interview, 1 urban interview (n = 25 Preferences parents/guardians, total, for both interviews) Parents’ perceptions requested on (a) challenges requiring support; (b) coping strategies, including support seeking; (c) support needs and resources; (d) programs serving Aboriginal children and adolescents with asthma and their parents; (e) gaps in supports and services; (f) preferences for culturally appropriate support interventions; and (g) culturally appropriate intervention outcomes Assessment Support needs: lack of support; insufficient information; concerns about risk Results factors in home and external environment Support intervention (group) preferences: support to understand and manage asthma; information; advice regarding communication strategies with health professionals; insights from other Aboriginal parents on managing children’s health conditions; culturally appropriate support, education, and community awareness Support Intervention: support groups (20 parents: 1 Caucasian, 4 Métis, 15 First Intervention Nation) Design & Rural (n = 8): 8 support sessions delivered by health professional via Implementation Telehealth Topics discussed: asthma management, asthma medication, communicating with health professionals, keeping homes allergen free, avoiding asthma triggers, culturally relevant and safe use of traditional medications Aboriginal peer facilitator and Aboriginal health professional provided face-to-face support following each session as needed Urban (n = 12): 8 support sessions held at inner city school, with discussion of similar topics as rural parents as well as information on urban services and supports Pilot Quantitative Results: support scale scores increased for both rural and urban; Intervention loneliness scores decreased; increased support-seeking Impact Qualitative Results: higher asthma awareness in community; participants Evaluation more prepared to seek support, appreciated Telehealth, enjoyed sharing meals with elders, valued information provided, wanted similar support for other life challenges

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Appendix B: Manitoba Study Activities

Assessment of Group interviews: 9 caregivers (3 parents, 5 guardians/relatives, 1 Support Needs professional caregiver; 7 Dakota, 1 Métis, 1 Caucasian) & Intervention Parents’/caregivers’ perceptions requested on (a) challenges requiring Preferences support, (b) support needs, and (c) support intervention preferences Assessment Support needs: insufficient federal support of housing, overcrowded Results multigenerational housing, air-polluting industry, poverty, concomitant risky health behaviours, isolation Support intervention preferences: after-school support group for adolescents with asthma and allergies and their parents/guardians Support Intervention: Peer support group—urban after-school intervention designed Intervention primarily for adolescents with asthma and allergies. Three Dakota parents (2 Design & mothers, 1 father) attended support group sessions; only parent/caregiver Implementation findings are emphasized in this paper. Pilot Data collection: postintervention qualitative interviews Intervention Results: support group intervention considered successful because it was Impact interactive, engaging, culturally relevant, and community led; asthma Evaluation information presented in context of traditional Aboriginal practices and lifestyle; participants appreciated “demystification” of research

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Appendix C: Nova Scotia Study Activities

Assessment of Individual interviews: 17 mothers, from 5 Mi’kmaq communities Support Needs Parents’ perceptions requested on (a) caregiving challenges requiring & Intervention support, (b) coping strategies, (c) support needs and resources, and (d) gaps Preferences in support programs and services for children and parents Assessment Support needs: allergy triggers; geographic distance to accessing support; Results available support outside community available only in English (Mi’kmaq preferred) Support intervention preferences: more information and educational resources; support groups; information in Mi’kmaq language; culturally relevant school-based support and awareness Support Intervention: 2-day peer support camp for children and parents (17 Intervention Mi’Kmaq mothers, same participants as in assessment interviews), with Design & Aboriginal ceremonies, cultural activities, entertainment, social support, Implementation education Pilot Data collection: sharing circle and group interview Intervention Results: connected with peers, decreased loneliness, increased asthma Impact support and education, enhanced friendships and family connections, learned Evaluation strategies for communicating with other community members, desire for ongoing support groups

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Defined by 0.11%: Policies Delimiting Access to Prescription Drugs for First Nations People in British Columbia • Emily Wale, Josée G. Lavoie Defined by 0.11%: Policies Delimiting Access to Prescription Drugs for First Nations People in British Columbia REVISED REFERENCES, 04/13/2016

Abstract The Non-Insured Health Benefits (NIHB) program is a federal program that funds prescription medication, as well as other primary healthcare benefits, for First Nations people registered under the Indian Act and for Inuit. NIHB policies have been developed within the Canadian political realities of ambiguity in interpretation of historical legal obligations, patterns of cost shifting onto provincial governments, and a move towards chronic disease management. This study critiques the ambiguities embedded in NIHB and provincial pharmaceutical benefit policies for First Nations people in British Columbia. British Columbia’s Fair PharmaCare and PharmaCare Plan C provincial prescription programs are compared to NIHB. We conducted a review of these policies and completed our understanding by interviewing three pharmacists to better understand decisions surrounding the dispensing process. Four themes surfaced from our analysis: discrepancy between policy and practice in terms of federal versus provincial responsibility; restrictive processes of access to coverage; a system dependent on pharmacists’ goodwill when NIHB denies a claim; and NIHB policies at times being at odds with pharmacists’ clinical judgment and business compensation. Our findings suggest the existence of an ethnically differentiated social contract that perpetuates rather than diminishes barriers to care for First Nations people.

Keywords Indigenous, health, British Columbia, prescription, auditor, federal, pharmaceutical, medication, policy

Authors Emily R. Wale, BHSc (Honours), (867) 335-0307; [email protected]. Ms. Wale played the primary role in research and analysis as part of her undergraduate thesis at University of Northern British Columbia. After graduating in 2012, she continued to collaborate with Dr. Lavoie to develop, edit, and revise the original thesis into an article. Josée G. Lavoie, PhD, Associate Professor, Department of Community Health Sciences, College of Medicine, University of Manitoba, and Director of Manitoba First Nations Centre for Aboriginal Health Research at University of Manitoba; 715 John Buhler Research Centre, 727 McDermot Ave, Winnipeg, MB, R3E 3P5, Canada, (204) 318-2560; [email protected]. Dr. Lavoie played an advisory role in research design and analysis, and the primary role in article development and revisions for publication. She particularly provided expertise with regard to the interface between pharmaceutical policy and Indigenous medication services.

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Acknowledgements The authors would like to acknowledge the invaluable contribution made by previous reviewers of this manuscript. We are grateful for your insightful comments and thoughtful guidance.

Introduction Despite continued conversations about the need for a national pharmacare program (Daw & Morgan, 2012; Gagnon & Hébert, 2010; Rosenfield, 2011), the majority of Canadians requiring prescription medications depend on private insurance and/or out-of-pocket spending to cover costs. Publicly funded coverage is available for some. The federally funded and managed Non-Insured Health Benefits (NIHB) program provides coverage for prescription drugs, in addition to other health services (e.g., eye and dental care), for First Nations and Inuit. The First Nations and Inuit Health Branch of Health Canada (FNIHB), the federal agency that funds and in some reserve communities provides health services to First Nations, takes the firm stance that coverage is provided only to eligible recipients for services that are “not available through any other federal, provincial, territorial, or private health or social program” (FNIHB, 2011, Benefit Criteria, para. 1). This policy is known as payer of last resort (Lavoie et al., 2005; Quinonez & Lavoie, 2009; Wardman & Khan, 2001), meaning coverage is provided for NIHB services only if not covered by provincial and third-party insurance plans. In addition, First Nation recipients of provincial employment and income assistance (EIA) are eligible for provincially administered programs that cover the cost of prescriptions. Finally, some provinces (British Columbia, Saskatchewan, Manitoba, Ontario, Nova Scotia, and Newfoundland and Labrador) have developed universal plans to cover “catastrophic” prescription drug costs (Daw & Morgan, 2012). In British Columbia (BC), Fair PharmaCare provides catastrophic drug coverage based on family income, while PharmaCare Plan C provides prescription medication coverage for EIA recipients (BC Ministry of Health, 2010a). The NIHB and PharmaCare programs use the same privately owned and operated pharmacies for service delivery. The challenge for pharmacists appears when a patient can be covered under multiple programs that may fall in different jurisdictions, with different formularies and eligibility criteria. Little is known about how pharmacists navigate the differences between federal and provincial pharmaceutical coverage programs, when dispensing to First Nation people. This study documents the influential factors and resulting policy differences that exist between federal and provincial prescription drug coverage programs, and the processes used by pharmacists to compensate for these policy differences in navigating through these coverage programs for BC First Nation clients. This is a timely publication: as of October 2013, the First Nations Health Authority, a BC-wide First Nations health organization, has assumed responsibility for the management of NIHB on behalf of FNIHB. This study provides valuable insights at a key turning point in federal government–First Nations relations. This paper begins with a discussion of the Auditor General’s 1997 report, which reviewed federal administration of the NIHB program, and the role the report has played in shaping the current structure of pharmaceutical delivery to First Nations people and Inuit in Canada. The discussion is supported by policy documents and published literature, using evidence to support concern with the Auditor General’s interpretation of NIHB clients’ drug utilization patterns. Next, the research methods used to conduct this study are outlined, followed

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Methods This article focuses on a detailed review of federal and provincial drug coverage programs. Policy documents were secured through a review of the FNIHB, BC Employment and Assistance, and BC Ministry of Health websites. Three databases (Native Health Database, Medline [OVID], and PubMed Central) were used to retrieve published literature. Key words included First Nations or North American Indian or Indigenous people, Canada, health policy, non-insured health benefits, pharmacy legislation, pharmaceuticals, drug therapy, jurisdiction, and coverage programs. Limits were placed on searches to include only those articles published from 1985 to the present, in the English language. Only seven peer-reviewed articles were identified. Drug coverage policy documents, and associated public and grey literature reports, were analyzed for prescription drug coverage processes and synthesized into flow charts contrasting the decision-making process for federal and provincial pharmaceutical coverage and restrictive drug access for BC residents. The documents reviewed are listed in Table 1.

Table 1 Drug Policy Grey Literature Reviewed in This Study FNIHB  Assembly of First Nations. (2005, April 25). First Nations Action Plan NIHB for Non-Insured Health Benefits.  Auditor General of Canada. (1997). Report of the Auditor General of Canada to the House of Commons.

 FNIHB. (2005, May 12). Executive Summary: Response to the Public Accounts Commitee Tenth Report on the Auditor General’s Report, October 2000 (Health Canada-First Nations Health: Follow-up).  FNIHB. (2010a). Non-Insured Health Benefits: Drug Benefit List 2010.  FNIHB. (2010b). Non-Insured Health Benefits Program, Annual Report.  FNIHB. (2011, October 24). Non-Insured Health Benefits for First Nations and Inuit.  Auditor General of Canada. (2000). Report of the Auditor General of Canada to the House of Commons.  Health Canada. (2008). Non-Insured Health Benefits (NIHB) Program’s Short-Term Dispensing Policy.  Health Canada. (2010). Report on Client Safety: Health Canada’s Non- Insured Health Benefits Program. BC  BC Ministry of Health. (n.d.). BC PharmaCare Formulary Search. PharmaCare  BC Ministry of Health. (2003, September). Policies and Procedures Manual.  BC Ministry of Health. (2010a). General PharmaCare Coverage Policies.  BC Ministry of Health. (2010b). PharmaCare Trends 2009/2010.

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To supplement the policy review, and confirm the decision-making processes for pharmaceutical coverage in BC, we conducted unstructured qualitative interviews with three pharmacists who navigate provincial and federal programs daily. A purposive sampling method was used to select pharmacists who worked in independent pharmacies, for a minimum of 10 years, in a community in northern BC with a population under 100,000 people, many of whom are First Nations (Saks & Allsop, 2007). Pharmacists were approached and asked to participate in a 30-minute interview to discuss administrative differences and complexities within Fair PharmaCare, PharmaCare Plan C, and the NIHB program. All three interviews took place in January 2012, and each was digitally recorded. Each pharmacist was asked to outline the process involved in navigating multiple pharmaceutical insurance programs to provide clients access to prescription drugs. Pharmacists were asked to outline administrative processes and not their personal beliefs. Further insight into potential solutions or application to other jurisdictions is that of the researchers alone. Thematic coding (Saks & Allsop, 2007) was used to develop key themes. Key words and themes, identified by repeated explicit and/or implicit meaning within an interview and across multiple interviews, were grouped together. An average of four key words per theme was identified. After selection of key words and the development of each theme, the interview recordings were reviewed again, and direct quotes were selected to provide supportive evidence for each theme.

Results and Discussion In 1997, the Office of the Auditor General of Canada (OAG hereafter) released a report outlining concerns with the federal management of the NIHB program. This report highlighted prescription drug misuse and “doctor shopping.” “Misuse” was defined as clients filling prescriptions at three different pharmacies and/or obtaining 50+ prescriptions in a three-month period (Auditor General of Canada, 1997, sections 13.98, 13.105). Although the OAG report made specific reference to narcotics as a drug classification of concern, no data were presented on the classes of drug received by those who filled 50 or more prescriptions (Auditor General of Canada, 1997, Table 2). This report set the foundation for current NIHB management policies. The evidence presented in the OAG report was limited to a statement that 710 NIHB clients each received more than 50 prescriptions in the first quarter of 1996. To get some perspective, we divided this number by the total population of NIHB clients (620,000, the number stated in the OAG report; see Table 2). Although a concern, the percentage of First Nations people and Inuit filling what was presented as an excessive number of prescriptions (at least 50) was only 0.11% of the total eligible NIHB clients. A 2000 follow-up report expressed concerns over the lack of improvement since the 1997 report (Auditor General of Canada, 2000). Our calculations indeed show little change (Table 2).

Table 2 Evidence Provided by the Office of the Auditor General to Inform NIHB Policies (Auditor General of Canada, 1997, Exhibit 13.15; Auditor General of Canada, 2000, Exhibit 15.5) For a 90-day period Number of clients Number of clients Number of clients

going to 3 or more getting over 15 getting at least 50 pharmacies different drugs prescriptions

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Total, Canada 15,015 1,599 710 First % of total quarter of eligible NIHB 2.42% 0.26% 0.11% 1996 clients (620,000) Total, Canada 14,077 1,244 998 Third % of total quarter of eligible NIHB 2.09% 0.19% 0.15% 1999 clients (672,000)

In Canada, polypharmacy patterns, defined as the use of multiple medications by a patient, have been studied only for the elderly (Bronskill et al., 2012; Gamble et al., 2014; Kwan & Farrell, 2014; Ramage-Morin, 2009; Reason, Terner, Moses McKeag, Tipper, & Webster , 2012). There has been no study of polypharmacy among First Nations, most likely because NIHB data are difficult to access for research. The existing studies provide limited opportunities for comparisons. For example, Reason and colleagues (2012) defined polypharmacy as the use of five or more prescription medications (time frame not specified) and reported that 27% of Canadian seniors fell into this category. In contrast, Ramage-Morin (2009) reported that in 2005, 12.8% of seniors aged over 65 used five or more medications (time frame not specified). While the comparability of these findings to a First Nations context is limited, they do provide a sense of scale to the data presented above, suggesting that the patterns documented by the OAG may not be exceptional, if one considers the burden of illness borne by First Nations people. At the time the 1997 OAG report was released, and although not focused on polypharmacy, other literature provided evidence that also challenges the OAG interpretation. For example, Anderson and McEwan (2000) examined the utilization of acetaminophen with codeine, an analgesic commonly prescribed to First Nation individuals who were beneficiaries of NIHB. Unlike the OAG, Anderson and McEwan (2000) also used a non–First Nation comparison group. Using data extracted from government-based pharmacy claims, they showed that crude utilization of acetaminophen with codeine among NIHB clients was moderate and fell within the bounds of a non–First Nations comparison group. Further, Wardman and Khan (2001) documented that crude utilization rates of acetaminophen with codeine were almost four times higher among NIHB clients than the Canadian population at large, yet utilization levels among NIHB clients were somewhat lower than among those covered under BC PharmaCare Plan C for EIA recipients. Wardman and Khan (2001) also noted that drug utilization is influenced by social factors and inferred that analgesic use among PharmaCare Plan C and NIHB recipients is likely influenced by shared social characteristics that contribute to poorer health status and increased burden of disease requiring drug therapy. Additionally, Anderson & McEwan (2000) documented that only 0.7% of NIHB clients residing in BC exceeded the maximum criterion level of 240 mg of codeine per day for 90 days. Finally, we note that the OAG report did not mention that approximately 46% of First Nations people live in an area defined as rural (Browne, McDonald, & Elliott, 2009), which may influence their pattern of access to pharmaceutical services, and dispensing practices. In response to the OAG’s recommendations and despite more balanced evidence reported above, FNIHB tabled plans to (1) increase drug utilization reviews, (2) analyze pharmacists’ overrides of system warning messages that occur when potential drug side effects or suspicion of

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Defined by 0.11%: Policies Delimiting Access to Prescription Drugs for First Nations People in British Columbia • Emily Wale, Josée G. Lavoie recreational drug use is present, and (3) upgrade the electronic network to provide system- generated warning codes for pharmacists based on dates, quantities of medication, type of medication, and number of doctors visited (Auditor General Of Canada, 2005, Recommendations and Follow-up Actions, para. 18). The impact of this policy shift is best explored through the experience of pharmacists, as they are the front-line providers tasked with managing the interface between the policy and practice of prescription drug funding mechanisms for First Nations people on a daily basis. Our analysis is organized in four themes, discussed below. Each theme provides an example of how, in practice, First Nations people and Inuit receive substandard care in medication management as a result of FNIHB policy applied to the NIHB program.

Theme One: A Discrepancy Exists between Practice and Policy in Primary Responsibility for Pharmaceutical Coverage As indicated above, FNIHB’s policy explicitly states that the NIHB program is the payer of last resort. Despite this, all pharmacists interviewed described a different state of affairs. To begin, they stated that PharmaCare coverage is available to all BC residents regardless of status (Figure 1). While official documentation (FNIHB, 2010b) states that the majority of registered First Nations people are solely covered under NIHB, each pharmacist described situations where NIHB clients had additional coverage under Fair PharmaCare and/or private insurance, but not under PharmaCare Plan C. If a client has both NIHB and active Fair PharmaCare coverage, PharmaCare provides coverage only if NIHB coverage is denied or if the required prescription drug has been delisted from the NIHB formulary. Thus, it appears that provincial programs, rather than NIHB, are the payers of last resort. Figure 1 outlines the decision-making process involved in navigating through drug coverage programs that span jurisdictions. A client with a valid prescription is identified for socially insured benefits through a provincially supplied CareCard, a lifetime personal health number for all BC residents who have previously used health services within the province. If the individual does not carry their CareCard, they can be identified through a search within the PharmaNet system (the electronic provincial pharmaceutical adjudication system that connects all pharmacies in BC), using the client’s full name and date of birth. The same system also shows eligibility for NIHB coverage.

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Client enters pharmacy with valid prescription

Yes No

Does client have a CareCard*? Client must seek physician to obtain a valid prescription. Yes No

CareCard is entered into Ask client if they are registered PharmaNet*** system. Is Care Card Search for Care linked to NIHB coverage program? First Nations (Status card)** if Card on System they appear to be of First using client's full Nations descent. name and date of birth. No. Is the Client Yes. PharmaCare recognizes covered under a that client has other coverage PharmaCare Plan? and automatically links with NIHB claims. Was this claim denied/rejected by NIHB? Yes. Client is No. Does client entitled to NIHB drug coverage. Yes. Fair PharmaCare have third is an income-based party/private insurance Yes. Is the client deductable coverage system, while Plan C coverage? covered under No. NIHB claim PharmaCare? is for recipients of is processed and BC Employment and billed. Social Assistance program with no No. Must pay out associated of pocket for deductable. prescription drugs. Yes. The prescription is processed through PharmaCare and if Yes. Third party rejected, a private or private insurance plan is used if insurance is available. If client does billed. If rejected, not have a private client must pay insurer, their last option out of pocket. is to pay out of pocket.

No. Other potential avenues of pharmacutical coverage can be explored. The client has the option to not fill prescription or pay out of pocket.

Figure 1. Flow chart outlining the process and sequence of events followed by pharmacists to navigate through potential multiple coverage systems (NIHB, PharmaCare, and third party or private insurance) for recognized NIHB clients

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Regardless of other potential provincial coverage the client may have, the PharmaNet system automatically adjudicates to NIHB for eligible clients. Individuals who are not registered First Nations, but have coverage for catastrophic drug charges or are recipients of EIA, are automatically adjudicated through the BC PharmaCare system. As explained by one pharmacist: “If someone is [a] NIHB [client], it will be flagged at PharmaCare, so as soon as we try to send a transaction to PharmaCare, it skips them [the client] and does not adjudicate at all” (Interview 3). In spite of official policy statements, “British Columbia definitely wants the federal government to pay before they do” (Interview 1). These findings are not consistent with current NIHB policy that claims the program to be a payer of last resort for First Nations health services (Assembly of First Nations [AFN], 2005; FNIHB, 2011). This is particularly clear when PharmaCare is used by pharmacists to provide coverage for First Nations clients in cases where NIHB has delisted required drugs or denied a claim (Figure 2). An independent report by the Assembly of First Nations noted that, between 2001 and 2004, 22 items were dropped from the NIHB formulary (AFN, 2005). Although we inquired, we were unable to ascertain whether provincial pharmaceutical coverage formularies were systematically picking up items that were dropped from NIHB formulary. This appears unlikely, however, since differences exist between provincial formularies. The NIHB formulary is defined nationally, with no provincial adaptation.

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Client coverage for drug requires special authorization

Coverage is primarily rejected Coverage is primarily from NIHB rejected from PharmaCare

Pharmacist phones Pharmacist contacts NIHB to request prescribing physician to coverage request reason for client authorization prescription

NIHB faxes the prescribing Physician fills out designated physician requesting reasoning form and faxes it to PharmaCare for prescribing medication PharmaCare panel of Prescribing physican fills healthcare professionals out form providing reviews case and decides requested information and approval status faxes back to NIHB

NIHB panel of healthcare Pharmacist professionals review case and responsible for decide approval status constant review in Pharmacare system to NIHB faxes phamacy determine if a regarding status of coverage decision of approval or rejection of Coverage for coverage has prescription is been made by approved PharmaCare panel Coverage for prescription is not approved; alternate potential avenues for coverage are sought

Figure 2. Contrast between NIHB and PharmaCare programs in restricted drug processes in efforts to provide coverage for prescription drug therapy Despite uncertainties surrounding NIHB delisted items, the pharmacists interviewed stated that NIHB clients do not necessarily have to be registered for Fair PharmaCare in order to receive provincially provided pharmaceutical coverage. In some cases, pharmacists are able to advocate for temporary coverage until other avenues of funding are secured. In those cases, pharmacists are acting as advocates for patients and are not compensated for time spent securing funding mechanisms for clients. Policy ambiguity over the issue of payer of last resort leads to cost shifting onto provincial programs and opens up potential ethnically defined gaps in pharmaceutical coverage, gaps bridged by the goodwill of pharmacists in navigating unclear funding processes on the clients’ behalf.

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Theme Two: It is not the Amount of Coverage That is limiting, but More Often Access to Coverage NIHB and PharmaCare programs categorize prescription drugs as either (a) an open benefit, requiring no additional action by the pharmacist to dispense the prescription, or (b) limited-use benefit (NIHB) or special authority (PharmaCare)—restricted drugs hereafter— requiring additional pharmacist action to provide coverage (BC Ministry of Health, 2010b; FNIHB, 2010a). A prescription drug may be listed as a restricted drug for a variety of reasons, including the availability of lower cost alternatives, association with severe adverse side effects, or potential widespread use for reasons outside of the medical benefit for which the drug is intended (BC Ministry of Health, 2010a; FNIHB, 2010a). All pharmacists interviewed agreed that when a prescription drug is listed as an open benefit, there is no difference between NIHB and PharmaCare programs in the amount of time it takes to dispense it. Both NIHB and PharmaCare programs have specific processes for limited use and restricted drugs. All pharmacists interviewed highlighted that restricted drug claims occurred more often with NIHB than PharmaCare (Figure 2): “We spend a lot more time getting approvals for medications for the NIHB clientele than we do for PharmaCare Plan C and Fair PharmaCare” (Interview 2). All pharmacists interviewed reported having to use the NIHB limited-use benefit protocol more than three times daily. The NIHB process takes an average of 1–2 days, and up to 7 days for PharmaCare. This is likely due to the division of responsibility between jurisdictions: NIHB demands more action on the part of the pharmacist, while PharmaCare places more responsibility on the physician to provide a rationale for use of restricted drugs (Figure 2). Therefore, it is difficult to determine whether NIHB or PharmaCare restricted drug processes are more inhibiting in terms of access to coverage for First Nations clients; NIHB processing occurs more quickly, yet limited-use benefit drugs requiring additional processing occur more frequently than those listed in PharmaCare’s formulary. While it is difficult to determine if length or frequency of restrictive drug approval processes directly impacts access for First Nations clients, discrepancies in the approval process for narcotics provide a strong example of limited access due to restrictive processes specific to First Nations people. Point-of-sale warning and rejection messages are used for restricted drugs by both federal and provincial drug coverage programs, to alert pharmacists to unusual use of restricted drugs. Commonly administered prescription narcotics such as oxycodone, codeine, and morphine are categorized as restricted drugs in both programs (BC Ministry of Health, n.d.; FNIHB, 2010a). Within both coverage programs, pharmacists can override messages with electronic response codes, which provide rationale to the governing body for providing the prescription. PharmaCare adjudicates warning and rejection messages based on clients’ last 14 months of dispensed medication in BC with reference to drug interactions, prior adverse reactions, duplicate therapy or ingredients, too high or low dosage, or adherence issues (BC Ministry of Health, 2003). NIHB administers warning and restrictive codes under the same criteria as PharmaCare. An additional NIHB-specific code warns against or restricts prescription narcotic use. The warming and restriction codes for potential misuse of prescription drugs is adjudicated through the NIHB Prescription Monitoring Program: this code activates when a single client attempts to fill a prescription for three or more benzodiazepines, opioids, or a combination of these drugs with methadone (FNIHB, 2010b). To elaborate:

There are more restrictions on narcotics [in the Prescription Monitoring Program] … while PharmaCare’s system doesn’t have as many restrictions on narcotics. … You can

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fill something a bit early [with PharmaCare] and use your own judgment, where NIHB is very specific. … With our scope of practice in pharmacy, we are allowed to expend things under our own name with Fair PharmaCare and Plan C, but with NIHB that is not within their protocol so it puts the patient at risk if we are not able to extend medication. (Interview 2)

Additional warnings and restrictions for accessing narcotics through NIHB compared to the BC PharmaCare program degrade pharmacists’ ability to provide access to covered medications on behalf of their First Nations clients. It is notable that there is no equivalent warning or rejection message specific to narcotics within BC’s PharmaCare program (BC Ministry of Health, 2003). As outlined in our previous discussion, it can be argued that narcotic restrictions unique to NIHB are a result of the interpretation of drug utilization patterns by the Auditor General’s 1997 review of the NIHB program.

Theme Three: The System Depends on Pharmacist Goodwill in Provision of Coverage when NIHB Denies a Claim As claims can be denied or drugs dropped from the NIHB formulary, alternate avenues of coverage have developed over time in an effort to provide access to medication for First Nation clients. Figures 1 and 2 show that five alternative coverage avenues exist for First Nation individuals whose claim is rejected by NIHB. Once NIHB denies a claim, the primary avenue sought by pharmacists is contacting the prescribing physician to inquire whether a substitute medication that is covered by NIHB can be issued to the client. According to one pharmacist, this happens on average two to three times daily (Interview 2). If a substitute medication is appropriate, the physician faxes a new prescription for the client to the issuing pharmacy, and the prescription is filled at no cost to the client. If a substitute medication is not appropriate, four other avenues, in no preferred order, can be sought by the pharmacist: • PharmaCare may provide coverage for NIHB clients. • Local First Nations health organizations provide some situational coverage. Prenatal vitamins were used as an example by one pharmacist as something that had been covered by a local First Nations health organization upon NIHB denial of coverage (Interview 3). • The client’s First Nation community can be contacted to provide coverage on a situational basis. • If none of the above avenues are successful, the last resort is for the client to either pay out of pocket or not fill the prescription. No official inter-jurisdictional (federal–provincial) guidelines or policy exists to guide pharmacists navigating through the complexities of multiple coverage avenues. The lack of such guidelines continues to create denials and delays in access in other areas where jurisdictional confusion prevails (Jordan’s Principle Working Group, 2015; Lavallee, 2005; Lett, 2008). Additionally, since dispensing fees can only be accessed for drugs dispensed, advocacy that yields no viable option for coverage is not compensated (Interview 3). This creates a system dependent on the goodwill of pharmacists in advocating for coverage.

Theme Four: NIHB Policies are at Times at Odds with Pharmacists’ Clinical Judgment and Business Compensation PharmaCare’s policy regarding frequency of dispensing was revised in February 2009, providing a dispensing fee for every 30 days for clients in general (BC Ministry of Health,

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2010b). Under this policy, PharmaCare provides one dispensing fee, per day, per drug, per patient at a maximum of three fees daily for clients requiring daily dispensing for medically necessary reasons as defined by their physician (BC Ministry of Health, 2010b). In contrast, the NIHB’s short-term dispensing policy was implemented in 2008, to establish compensation criteria for short-term fills of chronic-use medications when it is medically necessary (Health Canada, 2008). For most medications, the NIHB short-term dispensing policy restricts the number of dispensing fees to 1 per 28 days (Health Canada, 2010). Pharmacists either can choose to fill a 28-day prescription and receive compensation for one dispensing fee, or can bill NIHB every day for daily dispensing but receive only one twenty- eighth of the set dispensing fee (Health Canada, 2008). In 2012, the policy was extended to anticonvulsants, antidepressants, antipsychotics, benzodiazepines, and stimulant medications. When daily dispensing is required, NIHB will compensate one seventh of the usual dispensing fee, up to the NIHB’s regional maximum (Health Canada, 2008). NIHB provides one more additional dispensing fee annually for patients who require compliance packaging, where medication is bubble-wrapped with days of the week and time for taking medication (Health Canada, 2008). There is no equivalent in provincial and private drug coverage plans. Pharmacists stated that the NIHB dispensing policy is more restrictive than that of other plans, resulting in more work for a lesser payment (Interview 2). When clients fill more than one prescription at a time, some prescriptions may be subject to the NIHB short-term dispensing policy and others not: “It would get very confusing for the patient to have 7 days of one thing and 30 days of another, so we would take the [dispensing fee] hit on the cost of that” (Interview 2). Thus, in circumstances where a patient is filling more than one prescription and only select medications are subject to NIHB short-term dispensing policy, pharmacists often have to choose between individually filling prescriptions at staggered times throughout the month to receive complete dispensing compensation, or to dispense all medications at one time for patient convenience and increased compliance. This latter option is the most appropriate for patient care, particularly for clients living in rural and remote environments who must travel long distances to access a pharmacy; this option, however, requires the pharmacist to forfeit some dispensing fees. When contrasting NIHB’s and PharmaCare’s approaches to dispensing, NIHB focuses on eligibility based on quantity of medication per client, while PharmaCare focuses on eligibility based on the patient’s condition and need. Owing to this policy difference, pharmacists are often put in a position where they are forced to choose between their clinical judgment for the best care of their First Nation client, and being fully compensated for their services as a private health professional.

Limitations We acknowledge a number of limitations to this study. First, we based some of our conclusions on an admittedly small number of interviews. These interviews were meant to document how processes work in everyday practice. Since coverage and exemption rules are static, and we noted consistency across interviews, we believe that theoretical saturation was achieved (Guest, Bunce, & Johnson, 2006). Also, as healthcare delivery falls within provincial jurisdiction in Canada, the results of this study may not be generalizable to other provinces. Moreover, all pharmacists resided in a single regional centre in BC, and regional discrepancies in health service provision may influence study applicability even within the province. Still, pharmacists were asked to speak to administrative processes and not personal beliefs, therefore increasing the likelihood of validity in the results across BC.

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Conclusions This paper outlined the differences in drug coverage processes between the federal NIHB and BC’s provincial Fair PharmaCare and PharmaCare Plan C coverage programs. Our findings show significant differences between the NIHB and the provincial Fair PharmaCare and PharmaCare Plan C, especially with regard to limited-use drugs, for which NIHB regulation continues to be based on evidence from 0.11% of users. We also noted a lack of consistency between NIHB policy and practice, and fiduciary gridlock between the federal and provincial governments’ primary responsibility for First Nations pharmaceutical coverage. This situation imposes an unfair burden on the goodwill of pharmacists, which in some cases may compromise access to necessary drugs and patient safety. It is evident that ambiguity in pharmaceutical coverage processes, increased limitations on pharmaceutical access, and conflicts between pharmacist judgment and NIHB dispensing policies exist for First Nation clients in BC. Our findings suggest that, rather than the principle of equity, access to prescription medication for First Nations is constrained by a series of rules that apply to them alone, suggesting the existence of an ethnically defined social contract within Canada that creates limitations for this already disadvantaged population. In addition, our findings demonstrate the challenges that pharmacists encounter when trying to dispense required medications to First Nations. These challenges have implications for professional practice, patient care, and most importantly, the health of individuals and populations. As noted in the introduction, this publication is timely. As of October 2013, the BC First Nations Health Authority (FNHA) manages NIHB on behalf of FNIHB. The FNHA is currently engaged in discussions with federal and provincial authorities to address and redress the jurisdictional policy divide where this divide undermines equitable access to services for First Nations. This publication highlights a key area where policy intervention is required.

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