Our Health Counts Toronto: Using Respondent-Driven Sampling to Unmask Census Undercounts of an Urban Indigenous Population in Toronto, Canada
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Open Access Research BMJ Open: first published as 10.1136/bmjopen-2017-018936 on 26 December 2017. Downloaded from Our Health Counts Toronto: using respondent-driven sampling to unmask census undercounts of an urban indigenous population in Toronto, Canada Michael A Rotondi,1 Patricia O’Campo,2,3 Kristen O’Brien,2 Michelle Firestone,2 Sara H Wolfe,4 Cheryllee Bourgeois,4 Janet K Smylie2,3 To cite: Rotondi MA, O’Campo P, ABSTRACT Strengths and limitations of this study O’Brien K, et al. Our Health Objectives To provide evidence of the magnitude of Counts Toronto: using census undercounts of ‘hard-to-reach’ subpopulations and ► The study included a large sample of a hard-to- respondent-driven sampling to to improve estimation of the size of the urban indigenous unmask census undercounts of reach population recruited using a probability-based population in Toronto, Canada, using respondent-driven an urban indigenous population method. sampling (RDS). in Toronto, Canada. BMJ Open ► The study used novel applications of respondent- Design Respondent-driven sampling. 2017;7:e018936. doi:10.1136/ driven sampling (RDS) and census completion Setting The study took place in the urban indigenous bmjopen-2017-018936 information to enumerate the size of a hard-to-reach community in Toronto, Canada. Three locations within the population. ► Prepublication history for city were used to recruit study participants. this paper is available online. ► Census completion information was collected by Participants 908 adult participants (15+) who self- To view these files, please visit retrospective self-report, thus participant responses identified as indigenous (First Nation, Inuit or Métis) the journal online (http:// dx. doi. may be subject to recall bias. and lived in the city of Toronto. Study participants were org/ 10. 1136/ bmjopen- 2017- ► Baseline data relating to the census were obtained generally young with over 60% of indigenous adults 018936). in 2011 and may no longer be valid. under the age of 45 years. Household income was low ► We are confident that our study is robust; Received 2 August 2017 with approximately two-thirds of the sample living in nonetheless, care must be taken in the interpretation Revised 27 September 2017 households which earned less than $C20 000 last year. of respondent-driven sampling studies and http://bmjopen.bmj.com/ Accepted 3 November 2017 Primary and secondary outcome measures We collected generalisation to the target population. baseline data on demographic characteristics, including indigenous identity, age, gender, income, household type and household size. Our primary outcome asked: ‘Did you complete the 2011 Census Canada questionnaire?’ commonly provide the sampling frame for Results Using RDS and our large-scale survey of the national surveys.1–3 Ensuring full census urban indigenous population in Toronto, Canada, we participation of socially marginalised groups have shown that the most recent Canadian census and adjusting for undercounts is a common underestimated the size of the indigenous population 4 5 problem throughout the world. This is on October 1, 2021 by guest. Protected copyright. in Toronto by a factor of 2 to 4. Specifically, under 6 conservative assumptions, there are approximately 55 000 particularly challenging in homeless or 1 7 School of Kinesiology and (95% CI 45 000 to 73 000) indigenous people living in indigenous subpopulations, who are at risk Health Science, York University, Toronto, at least double the current estimate of 19 270. of being undercounted and thereby lacking Toronto, Ontario, Canada 2Centre for Urban Health Conclusions Our indigenous enumeration methods, access to appropriate healthcare services. Solutions, Li Ka Shing including RDS and census completion information will In what is now known as Canada, there Knowledge Institute, St. have broad impacts across governmental and health are three distinct groups of indigenous Michael’s Hospital, Toronto, policy, potentially improving healthcare access for this peoples (Indian, Inuit and Métis) that are Ontario, Canada community. These novel applications of RDS may be recognised in the Canadian constitution as 3Dalla Lana School of Public relevant for the enumeration of other ‘hard-to-reach’ having inherent rights that predate Canadian Health, University of Toronto, populations, such as illegal immigrants or homeless confederation.8 The group referred to in the Toronto, Ontario, Canada individuals in Canada and beyond. 4Seventh Generation Midwives constitution as ‘Indian' represents a highly Toronto, Toronto, Ontario, diverse set of cultural linguistic population Canada groups, who commonly self-identify by their Correspondence to INTRODUCTION specific cultural linguistic name and/or the Dr Michael A Rotondi; National censuses are considered the gold collective term First Nations, which came mrotondi@ yorku. ca standard for population-level data and into use in the 1970s as the term ‘Indian’ Rotondi MA, et al. BMJ Open 2017;7:e018936. doi:10.1136/bmjopen-2017-018936 1 Open Access BMJ Open: first published as 10.1136/bmjopen-2017-018936 on 26 December 2017. Downloaded from was considered by some to be offensive. The Inuit tradi- Community partnerships tionally lived above the tree line and are part of a larger This study was co-led by the SGMT and the Well Living circumpolar Inuit population that includes Greenland, House Action Research Centre for Indigenous Infant, Alaska and Russia. The origins of the Métis Nations are Child and Family Health and Wellbeing (Well Living found in the historic intermarriage of European men House) at St. Michael’s Hospital. SGMT is a midwifery with First Nations/Indian women in the 1700s. There has clinic in Toronto that specialises in providing care for always been intermarriage across First Nations groups.9 indigenous mothers and their babies. Given the tradi- Métis have their own unique identities which has been tional role of midwives as knowledge keepers of birth shaped by over 250 years of history that intertwines with stories and family information, SGMT was identified as but is distinct from the history of First Nations. an appropriate organisational custodian for indigenous The majority of First Nations and Métis peoples in community health data in Toronto.19 Canada now live in cities, and the urban Inuit population is rapidly increasing.10 Urbanisation increases opportu- Study design nities for intermixing between and across First Nations, In contrast to indigenous populations living in First Métis and Inuit population groups. Importantly, and in Nations on-reserve communities or Inuit land claim terri- keeping with their distinct cultural–linguistic identities, tories, there is no comprehensive registry of indigenous histories and differences in externally imposed colonial people living in cities. In the face of these challenges and policies, each group also has unique urban experiences the socially networked community of urban indigenous and needs.11 people, we chose RDS17 18 as the sampling method. Based Urban indigenous peoples are at risk of non-participa- on the design effects that were observed in our previous tion in the census due to factors such as poverty and its urban indigenous RDS studies,20 a target sample size of associated lack of living at a fixed address,12 13 historical approximately 1000 urban indigenous adults was chosen distrust of government due to past and present colonial to provide appropriate power for descriptive and compar- policies14 and migration between geographical loca- ative measures in this study. tions.12 In 2011, despite concerns of the reduced validity of using a voluntary questionnaire, the Canadian govern- Recruitment methods ment made a significant change in the collection of Participant recruitment took place at three health Canadian population data and eliminated the mandatory and social services locations spanned across the city of long-form census, replacing it with the voluntary National Toronto. Specifically, interviews took place 2 days per Household Survey (NHS).15 16 This further complicated week at the Queen West Central Toronto Community the accurate enumeration of indigenous peoples in Health Centre, SGMT and the Native Canadian Centre of Canada because questions regarding indigenous identity Toronto, respectively, and also included an option for a were part of the content that was transferred from the mobile survey service which could come to a participant’s long-form census to the NHS, which had a much lower location of choice. All interviewers had strong pre-ex- http://bmjopen.bmj.com/ global response rate (68.6%) than the previous long- isting indigenous community engagement skills and form census (93.8%).13 Additional NHS data reliability were further trained to ensure that all interviews were issues have been identified for estimates of the preva- conducted in a respectful and culturally sensitive manner. lence of low-income households, estimates involving As an incentive, participants were provided with $C20.00 smaller geographical areas and for specific indigenous for completing the survey as well as $C10.00 for each subpopulations.14 individual that they recruited into the study. In addition, Within this context, we investigated methods to adults who had children under the age of 14 residing with more accurately enumerate the indigenous population them were asked to complete a child-specific survey and on October 1, 2021 by guest. Protected copyright. of Toronto, Ontario, Canada’s largest urban centre. provided with an additional honorarium of $C10.00 per The purpose of our study was twofold: (1) To provide completed child survey. All financial incentives were in evidence of the magnitude of undercount of this ‘hard- Canadian dollars. to-reach’ indigenous subpopulation and (2) To improve Eligible participants had to self-identify as indigenous estimation of the size of the urban indigenous population (First Nation, Inuit or Métis) and live, work or receive in Toronto, Canada, using respondent-driven sampling healthcare services in Toronto. However, for the purposes (RDS) for healthcare access and planning purposes. of this study, all analyses are restricted to only those who reside in the city of Toronto.