Young Carers and COVID-19

Young Carers and COVID-19:

The Invisible Front-Line Workers

Stephanie Martin

A Thesis presented to The University of Guelph

In partial fulfilment of requirements for the degree of Master of Science in Family Relations and Applied Nutrition

Guelph, Ontario, Canada

ABSTRACT

YOUNG CARERS AND COVID-19: THE INVISIBLE FRONT-LINE WORKERS

Stephanie Martin Advisory Committee University of Guelph, 2021 Dr. Andrea Breen Dr. Heather Chalmers

This study (apart of a larger SSHRC-funded research study) is a qualitative exploration of the experiences and perceptions of young carers in Ontario during phase 1 and 2 of COVID-19. Four individuals between the ages of 16 and 24 participated in semi-structured interviews and daily diaries to share their caregiving experiences at two different time points during the initial onset of the pandemic. Using Braun and Clarke’s (2006) thematic analysis to analyse Time 1 and Time

2 interviews, I found four main themes consistent in participant responses: (1) COVID-19 has provided young carers more time; (2) Caregiving during COVID-19 is challenging; (3) Support systems for young carers during COVID-19; (4) Recommended future supports for young carers.

The findings of this study reinforce the importance of contextualizing young carers’ experiences in order to best approach future research as well as program and policy development.

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ACKNOWLEDGEMENTS

It has been a privilege to pursue an MSc in Family Relations and Human Development at the

University of Guelph over the last two years. My professors and peers have made this an unforgettable experience, that has fueled my desire for continued learning beyond the completion of this program. I would specifically like to thank my advisor, Dr. Andrea Breen. Andrea’s authentic and humble approach to her work is something I hope to emulate in whatever future career I pursue. She leads by example, showing patience, encouragement, and adaptability in all that she does. Dr. Breen is my research supervisor, but also a true mentor whose support has extended beyond the required confines of the position.

I would like to thank my co-advisor, Dr. Heather Chalmers, for her thoughtful and reflective feedback throughout this process. Having had little experience conducting interviews and analyzing data, I am so appreciative of the guidance you have provided me with on this project.

Thank you to the participants of this study, who, amidst the uncertainty of a global pandemic, dedicated time to share their experiences for this project. As the title suggests, you are truly front-line workers and your caregiving duties are invaluable.

Kip and Deb. Thank you for your encouragement and support; without which I would not have had the confidence to pursue further education. Thank you for listening and showing genuine interest in my learning experiences while knowing just the right moment to make light of a situation with humour.

Cale. I am not sure what I did to deserve such a patient and selfless partner, but I am grateful for you every day. Thank you for your unconditional support.

TABLE OF CONTENTS

Abstract ...... ii

Acknowledgments ...... iii

Table of Contents ...... iv

Chapter 1: Introduction ...... 1

Chapter 2: Literature Review ...... 2 Prevalence ...... 3 Organizations and Supports in Ontario ...... 4 Costs and Benefits of Caring ...... 5 Consequences of Young Caregiving ...... 6 Ontario’s Action Plan in response to COVID-19 ...... 7 Caregiving during COVID ...... 9 Rationale for Study ...... 11 Family Systems Theory ...... 12

Chapter 3: Methods ...... 13 Participants ...... 14 Recruitment ...... 14 Participant Screening ...... 14 Participant Selection ...... 14 Data Collection ...... 16 Time 1 Interview ...... 16 Time 1 Diary Entries ...... 16 Time 2 Interview ...... 16 Time 2 Diary Entries ...... 17 Measures ...... 17 Interview Questions ...... 17 Diary Questions ...... 17 Ethical Considerations ...... 18 Data Analysis ...... 18 Phase 1: Familiarizing Yourself with the Data ...... 18 Phase 2: Generating Initial Codes ...... 19 Phase 3: Searching for Themes ...... 19 Phase 4: Reviewing Themes ...... 20 Phase 5: Defining and Naming Themes ...... 20

Phase 6: Producing the Report ...... 21 Trustworthiness ...... 21

Chapter 4: Findings ...... 23 Summary of Findings ...... 23 Time 1 Interviews vs. Time 2 Interviews ...... 23 Theme 1: Covid-19 has Provided Young Carers More Time ...... 24 Whole-Family Relationships ...... 24 Caregiver-Care Receiver Relationships ...... 25 Self-Care ...... 27 Theme 2: Caregiving during COVID-19 is Challenging ...... 28 Difficulty Balancing Carers’ Responsibilities ...... 28 Caregiving during COVID-19 is Constant ...... 29 COVID-19 Impacts Young Carers’ Wellbeing ...... 31 Worries during Covid-19 ...... 32 Theme 3: Support Systems for Young Carers during COVID-19 ...... 35 More Hands Make Light Work: Informal Support ...... 36 Formal Support during COVID-19 ...... 37 Theme 4: Recommended Future Supports for Young Carers ...... 42 Individual Support in Caregiving Responsibilities ...... 42 Improving Accessibility to Young Carer Supports ...... 43 Educational Support ...... 44 Improved Quality of Formal Support ...... 45 Future Research ...... 46

Chapter 5: Discussion ...... 46 Summary of Research Problem ...... 46 Summary of Research Findings ...... 47 Theme 1: COVID-19 has Provided Young Carers More Time ...... 47 Theme 2: Caring during COVID-19 is Challenging ...... 50 Theme 3: Support during COVID-19 ...... 52 Implications ...... 55 Context Matters ...... 55 Raising Awareness ...... 55 Policy ...... 56 Program Development ...... 57 Limitations ...... 58 Future Research ...... 58

Chapter 6: Conclusion ...... 59

References ...... 61

Appendix A ...... 69

Appendix B ...... 70

Appendix C ...... 71

Appendix D ...... 72

Appendix E ...... 77

Appendix F...... 79

Table 1 ...... 9 Table 2 ...... 23

Chapter 1: Introduction

While Canada’s universal health care model has been associated with being fair and equitable

(Government of Canada, 2019), less recognized is the heavy reliance placed on unpaid, informal caregivers. According to the Canadian Caregiver Coalition (2015), the healthcare system would not be able to function without the contributions of family members providing informal care. As a result of a disproportionately aging population and demographic trends towards smaller families, more dual-earning parents, and an overburdened healthcare system, many youths assume caregiving roles within their family (Chadi, et al., 2017). This cohort is known as “young carers” (Stamatopoulos, 2015). They are the “hidden backbone of Canada’s healthcare system”

(Ontario Caregiver Coalition, 2020); many of whom have had their lives turned upside down due to the Coronavirus. With Ontario’s restrictions implemented to stop the spread of the virus, along with the suspension of health services as a means of ensuring in-hospital capacity, young carers remain at the forefront of shouldering the “outsized burden” of primary care responsibilities and will continue to do so long after the pandemic is over (Ontario Caregiver Organization, 2020).

On March 11, 2020, the Coronavirus (COVID-19) was declared a global pandemic by the

World Health Organization. Canadian governments implemented border restrictions, encouraging all Canadian citizens to refrain from non-essential travel and to stay home. On

March 17, 2020, Ontario responded by announcing a state of emergency, closing all restaurants, libraries, daycares, and schools; suggesting that Ontarians engage in “social distancing” practices

(Government of Ontario, 2020). While a necessary step in reducing the spread of the virus, questions have been raised regarding how the initial phases of the COVID-19 pandemic have impacted young carers (Zuvac-Graves, 2020). What happened to this under-supported, potentially at-risk population of youth, when an already overburdened healthcare system was

faced with the COVID-19 pandemic? This research project examined the following question:

How do young carers perceive their experiences as carers during the initial phases of the

COVID-19 pandemic?

This research was exploratory in nature and investigated young carers’ experiences at two time points during the first six months (March – September 2020) of the pandemic. It aimed to develop a foundation of knowledge for future research, as well as, to inform future policies and practices designed to support young carers in Canada.

Chapter 2: Literature Review

Before exploring the how COVID-19 has affected Ontario’s young carers, a comprehensive picture must be provided regarding young caregiving, what it looks like, and how the concept differs around the world. I will then provide prevalence data and describe the extant literature on the impacts of caregiving responsibilities for individuals under the age of 29. I will be considering this concept through the lens of the family systems theory (Kerr & Bowen, 1988), emphasizing that families with young carers are affected as a unit.

Over the last decade, the fact that young people are providing high levels of care for ill, disabled or addicted family members has received global attention, specifically in European countries, the United States, Australia, New Zealand, Sub-Saharan Africa and the Middle East

(Joseph, et al., 2019). The literature on young carers has consistently emphasized the “hidden”

“invisible” and “vulnerable” nature of these individuals (Joseph, et al., 2019; Stamatopoulos,

2015).

There are various terms and definitions used to describe the population of young people who take on substantial caretaking roles and responsibilities. The term “young carer” is most commonly used in literature conducted in the U.K. (e.g., Aldridge & Becker, 1993; Banks, et al.,

2002; Cree, 2003, Rose & Cohen, 2010; Thomas, et al, 2003), Sub-Saharan Africa (e.g., Robson, et al., 2006), Australia (e.g., Cass, et al., 2009) and the United States (e.g., Kavanaugh, et al.,

2014). The age that is defined as “youth” also varies between countries. For example, studies refer to young carers as “under the age of 18” (e.g., Leu & Becker, 2017), “under the age of 19”

(Thomas, et al., 2003), or “children and adolescents between 12-20” (Kavanaugh, et al., 2014).

Wider literature would suggest that the terms “young carer” and “young caregiver” are often used interchangeably, however according to the Young Caregiver Association, Canada is moving toward using the term young caregiver (Young Caregiver Association, 2020). For the purposes of this thesis, I will be using Stamatopoulos’ (2015, 2018) definition of young carer to define those under the age of 25, who provide substantial unpaid care to any family member other than ones’ own child, including but not limited to parents, siblings, and/or grandparents (e.g., Areguy, et al., 2019; Breen, 2019; Charles, et al., 2012; Stamatopoulos 2015, 2018; Waugh, et al., 2015).

I chose to use the term young carer instead of young caregiver as I wanted to keep it consistent with much of the wider literature that I will be referencing throughout the paper.

Prevalence

According to the 2012 census data there was an estimated 1.18 million young Canadians ages

15-29 (27% of all Canadians in this cohort), who reported that they had provided care to a family member over a long-term period (Stamatopoulos, 2015). More recent data on Canadian caregivers suggests that the prevalence of young carers has since grown to 1.25 million

(Stamatopoulos, Forthcoming; The Change Foundation, 2020). Absent from these numbers is the care being provided by youth under the age of 15 (Breen, 2016; OCO, 2020), as they are not included in the StatsCan data. This is an important omission, as research conducted in the United

States and United Kingdom suggests that the average age for young caregiver is between 12-13

years (Shifren, et al., 2002; Hunt, et al., 2005). Moreover, caregiving may not be reported by those who do not recognize their day-to-day family contributions as anything out of the ordinary

(Richardson, et al., 2009). Therefore, it is suspected that the actual prevalence of young carers is significantly higher than census data suggests. Despite the large population of young carers in

Canada, they remain largely invisible to governments, policymakers, and front-line workers

(e.g., Stamatopoulos, 2018).

Organizations and Supports in Ontario

Over the last decade, a handful of programs have been established in support of Ontario’s young carers. Among the first to recognize and deliver a wide range of programs and supports is a program called the Powerhouse Project. In 2003, the Young Caregivers Association (formerly known as Young Carers Initiative) was formed in association with the Alzheimer Society of

Niagara in recognition of the children and youth who provided care to loved ones with dementia.

In 2008, they developed a program called the Powerhouse Project to support all young carers.

Young Caregivers Association was the first Canadian organization specifically dedicated to supporting, empowering and recognizing young carers (Young Caregivers Association, 2020).

Hospice Toronto is a non-profit organization that also recognizes the needs of young carers.

In 2009 Hospice Toronto’s Young Carer Program (YCP) was established to specifically target the needs of young carers and their families through programming that focuses on “recreational, social, educational, and skills development activities” (Young Carers Program, 2020).

Additionally, the Ontario Caregiver Organization (OCO) works collaboratively with other organizations to spread awareness and disseminate information about existing services that are available for caregivers in Ontario. OCO acts as a resource for young carers seeking information about existing programs, services, and supports that may be available to them.

Lastly, the Change Foundation (2020) aims to inform healthcare policy and practice through

“engaging the voices of patients, family caregivers and care providers.” This organization has specifically focused on advocating for young carers’ rights through spreading awareness and developing resources to help connect and support young carers (The Change Foundation, 2020).

While young carer program and policy development in Canada (and Ontario) is lagging behind their global counterparts, the organizations that are in place are working to raise awareness about this cohort of youth while advocating for the need for legislation to reflect their vital role in society.

Costs and Benefits of Caring

As will be elaborated below, early caregiving experiences can contribute to young peoples’ risks for negative developmental outcomes. However, it is also important to note that early caregiving has been associated with several positive outcomes, dependent on the circumstances of care (Charles, et al., 2012). Many young carers feel a sense of pride in their caregiving roles and they report that caregiving contributes positively to their self-esteem and identity development (e.g., Bolas, et al., 2007; Rose & Cohen, 2010). Additionally, many young carers have reported a greater sense of compassion, sensitivity, and altruism as a result of their caregiving experiences, while feeling a deep connection to the care receiver (e.g., Aldridge, et al., 1993; Areguy, et al., 2019; Charles, et al., 2012).

However, positive outcomes of young caregiving are largely dependent on the nature of the caregiver-care receiver relationship, the duration of care provided, and the nature of the caregiving responsibilities (Charles, et al., 2012). For example, young carers who provide care at a young age, in chaotic environments, to family members with mental illness, where responsibilities are “disproportionate” to youth’s developmental stage are more likely to

experience adverse outcomes (Charles, et al., 2012, p. 11). Alternatively, those who provide care for a family member with a physical ailment, who have a reciprocal relationship with their care receiver, and are supported in their roles as caregivers are more likely to report the positive outcomes of their caregiving role (Aldridge, 2006; Charles, et al., 2012).

In addition to the caregiving circumstances, Smyth and colleagues (2011), have emphasized the importance of recognition, validation, and acknowledgement of young carers, to the outcomes of their perceived experiences. Many young carers suggest that being recognized in their roles, led to feeling valued for their contributions to their family’s wellbeing and less alone in their circumstances (Smyth, et al., 2011). Unfortunately, given the lack of awareness of young carers in Ontario and Canada, they remain unrecognized and generally hidden in their roles, inherently impacting their caregiving experiences.

Consequences of Young Caregiving

According to Charles, et al., (2012) early caregiving can interfere with development, requiring youth to take on adult responsibilities that are not deemed “age-appropriate” within their cultural context. Caregiving responsibilities can be extensive and time-consuming. They are often equivalent to the time required for a part-time or full-time job, ranging from 14-27 hours per week (OCO, 2020b). According to Bleakney (2014), young carers (ages 15-24) were equally as likely to have caregiving responsibilities as their middle-aged counterparts (ages 25-29).

Caregiving duties can include providing personal care (e.g., bathing, dressing, feeding, administering medication), financial support, and/or practical and emotional supports for their family members (OCO, 2020b).

Vivian Stamatopoulos (2018) coined the term “young carer penalty” to explain the costs associated with early caregiving. Consistent with global young carer research (e.g., Aldridge,

2006; Bolas, et al., 2007; Charles, et al., 2012; Roberts, et al., 2008; Rose & Cohen, 2010; Spratt, et al., 2018), Stamatopoulos (2015, 2018) suggests that young carers are at a heightened risk of social, educational, and health-related issues than those not assuming caregiving responsibilities.

Young carers have reported lower levels of educational attainment, school absenteeism, lower employment rates, as well as higher reports of physical injury, depression, anxiety, and exhaustion (Cass, et al., 2009; Cree, 2003; Stamatopoulos, 2015, 2018).

Among the greatest challenges faced by young carers is the social and physical isolation associated with their primary care responsibilities (Charles, et al., 2012). Given that caregiving responsibilities may interfere with developmental milestones, young carers have also reported feeling angry, resentful and depressed (Aldridge & Becker, 1993; Barnett & Parker, 1998;

Charles, et al., 2012). In the context of COVID-19, it is important to explore how the provincial measures implemented to protect citizens, may in turn be contributing to the young carer penalty.

Ontario’s Action Plan in response to COVID-19

In response to COVID-19, provinces in Canada were each responsible for the implementation of safety measures to protect and serve citizens. The Government of Ontario (2020), responded by developing a plan of action called the Reopening Framework. On April 27, 2020, the

Reopening Framework was published, outlining the gradual process of moving from phase 1:

Protect and Support to phase 3: Recover.

Phase 1 of the framework prohibited social gatherings with anyone outside of the household and enforced workplace and in-class school closures as a way of controlling the spread of the virus. Phase 2 of the framework titled, Restart, signified the governments reopening of the economy in a controlled manner. This included reopening workplaces with restrictions that enabled social distancing measures, reopening outdoor recreational activities such as cycling,

track and racquet sports, as well as the reopening of healthcare, community and household services (Government of Ontario, 2020). The last step of the framework was titled Recover. This referred to the province’s “return to life before the pandemic,” with a commitment to long term growth (Government of Ontario, 2020). This included the reopening of all workplaces, allowing large public gatherings such as concerts and sporting events. I will be referring to these phases of the framework as phase 1, phase 2 and phase 3 respectively throughout the rest of this document.

This information is important when exploring the experiences of young carers during

COVID-19, as it allows the reader to contextualize the change and adaptation required by the participants and their families. Table 3 outlines a timeline of the federal and provincial responses during the initial stages of the pandemic, which aligns with the timeframe of participant interviews (Time 1 & Time 2). As such, Table 3 provides a lens through which we can interpret participant perspectives with greater clarity. This table was modified from Nielson, K. (2020,

April 24).

Table 1 Summary of Provincial Response to COVID-19

Date (2020) Major Event January 25 First man and woman diagnosed in Ontario (and Canada) at Sunnybrook Hospital after returning from Wuhan China March 11 Ontario’s first death from COVID-19 March 12 Doug Ford announced public school closures for the two weeks following March Break March 14 Canadians who were travelling abroad were ‘strongly urged’ to return to Canada and/or cancel non-essential travel March 17 Doug Ford declared a state of emergency; ordering daycares, bars and restaurants, theatres and schools to close March 18 Canada and the U.S. agreed to close the boarder for all non-essential travel March 30 Ontario shut down all outdoor amenities and ordered the state of emergency to continue until April 12, 2020 March 31 Schools closures were extended until May, 2020

April 14 Ontario extended the state of emergency lockdown for another four weeks April 20 The Ontario government released statement that suggested the peak of community spread cases April 26 School closures were extended until May 31, 2020 May 6 The state of emergency was extended for the third time until May 19, 2020 May 14 Doug Ford released details about Ontario’s phase 2, allowing some businesses such as golf courses, campgrounds and marinas to reopen with safety measures in place May 19 The Ontario government confirmed that in-class learning would not commence for the remainder of the school year May 26 Canadian Armed Forces were deployed to long-term care homes to help control the spread of the virus. They later reported that the care being provided was “borderline abusive, if not abusive” May 27 The Ontario government extended the state of emergency until June 9, 2020 June 6 The Ontario government extended the state of emergency for another two weeks June 8 The Ontario government announced the reopening of some regions in the province, excluding Toronto, Mississauga and Hamilton June 22 Toronto and Peel region entered into Stage 2 July 12 Ontario announced that some areas of the province would enter into Stage 3 July 29 Toronto and Peel region were among the last regions to enter Stage 3 of the Reopening Plan Table 1 Caregiving during COVID

Our study commenced during phase 1 of COVID-19. Quarantine measures were implemented, mandating the closure of workplaces and in-person learning in schools. As a result, many workplaces assumed “work-from home” models and academic expectations were carried out virtually. Social distancing measures were enforced, and citizens were told to limit contact to those within their household. Not only did COVID-19 likely add to the burden felt by existing young carers, but it may have been responsible for exacerbating the number of young carers in

Ontario, as youth assumed caregiving roles for family members impacted by the virus and other preexisting illnesses.

The social distancing measures that were implemented during phase 1 of COVID-19 were expected to intensify issues of isolation, social exclusion, and stigmatization faced by many young carers (Ontario Caregiver Organization, 2020). A poll by Mental Health Research Canada

(2020) found that the levels of anxiety and depression amongst Canadians during COVID-19 were at an all-time high (four times higher than they were pre-pandemic) (MHRC, 2020).

Additionally, the OCO (2020) found that 77% of caregivers who supported someone with mental health or addiction issues said it was difficult to access support for their care receivers during

COVID-19, only contributing to their caregiving load.

In the absence of school refuge and/or peer support during phase 1 of Ontario’s COVID-19 response, many young carers may have had no break from the worry, stress, or responsibilities experienced in the home. The closing of all community spaces raised concerns that young carers in lockdown were at greater risk of abuse, neglect, and mental health challenges without effective resources and supports to cope with their mental health issues, fears, or worries (Zuvac-

Graves, 2020).

Zuvac-Graves (2020) of the United Kingdom’s Children’s Society, published an article outlining some of the challenges faced by young carers as a result of COVID-19. Zuvac-Graves

(2020) found that many young carers reported feeling plagued with anxiety during the onset of the pandemic (March, 2020) when strict “stay at home” measures were implemented, banning public gatherings of more than two people and enforcing the closure of all non-essential workplaces and schools (Roberts, 2020). As such, young carers reported feeling anxious about leaving their care receivers alone, as well as fearful of putting them in a compromised health

situation (Zuvac-Graves, 2020). As a result, many young carers refused to leave their homes at all, unwilling to purchase items to meet even their most basic needs (e.g., food, medications).

Dr. Blake-Holmes (2020) also conducted a study on young carers’ responses to COVID-19 in the U.K. Through semi-structured interviews with young carers (n=8), young adult carers (n=5), parents of young carers (n=3), and youth workers (n=4), Blake-Holmes (2020) sought to understand the real-time experiences of young carers during the first few months of the pandemic

(April-June, 2020). Their findings suggested that young carers felt they shouldered greater caregiving responsibilities. Young adult caregivers in particular, reflected on increased responsibilities, as many of them reported taking on a parenting role to younger siblings to help parents balance their work and family obligations. A significant emphasis of this research was on the impact of disruption to external supports for young carers and their families. Participants reported that the lack of communication with supports and services led to greater burden on themselves and heightened levels of stress on the whole family.

Rationale for Study

COVID-19 will likely have long term implications for more than 1.25 million young carers and their families in Canada (Stamatopoulos, Forthcoming). In a country where little is known about this vulnerable and marginalized population of youth, the onset of a pandemic may have put them at risk of slipping “even further under the radar” (University of East Anglia, April 17,

2020). There was a need to understand the real-time experiences of young carers as they navigated the various phases of the pandemic. Furthermore, this research project sought to answer the following research questions: What are the experiences and perceptions of young carers during phase 1 and 2 of the COVID-19 pandemic; and how have the initial phases of the pandemic impacted the wellbeing of young carers in Ontario?

Family Systems Theory

My analysis was grounded in the family systems theory (Bowen, 1978). I used it as a lens to conceptualize young carers’ experiences during the COVID-19 pandemic. The family systems theory seeks to understand the interactions between members of a family and between the family unit and the contexts within which its embedded (Watson, 2012). According to the family systems theory, individual behaviour can be understood through recognizing a person’s place within their family system and the subsequent “emotional demands, role definitions and expectations, boundary and hierarchy issues, family and institutional cultural and belief systems, and system anxiety” (Watson, 2012, p. 184). A system refers to a self-organizing and interconnected “collection of parts” (e.g., people, cells, organizations) which produce their own patterns of behaviour (Watson, 2012, p. 185). They are influenced by external factors therefore cannot be understood solely based on the analyses of its parts.

Feedback loops are the controlling mechanism in systems (Watson, 2012). They allow for the iterative process whereby one’s behaviour is influenced by the system’s reaction to their behaviour (Watson, 2012). In the context of the family system, members affect each other’s feelings, thoughts, and actions so intricately, that they are, in varying degrees, interdependent

(Kerr, 2000). The feedback loop tends to reinforce the same behaviour and reaction by family members whereby if one member is joyful, happy, anxious, stressed etc., it reinforces the same response from others. According to O’Gorman (2012), even the smallest of changes within a family system can elicit behavioural and emotional changes in youth, impacting the “structure and function of a family” unit (McBride, et. al., 2001, p. 65).

For many families, COVID-19 has disrupted regular routines. For example, the economic shutdown, access to supports and shift to virtual learning are significant changes within a family

system. As such, subsystems within the family (parent-child, parent-parent, child-child etc.) have had to adapt and accommodate for these disruptions, thus impacting the functionality of the system as a whole.

Much of the previous research conducted, explores young carers’ experiences through parental views, or in isolation of their family members (Becker, et al., 2008; Spratt, et al., 2018).

However, by using the family systems framework to ground my analysis, I sought to understand the young carer experience from a broader perspective that incorporated the interrelated family unit, as well as the social contexts within which families reside (Hooper, 2007). To do so, our research team developed interview questions specifically requiring the participants to reflect on how COVID-19 had impacted the relationships within their family system. We also asked them to identify specific contextual circumstances that may have been impacting both their wellbeing individually and as a family.

Chapter 3: Methods

This study was part of a larger investigation exploring young carers’ experiences during

COVID-19. The larger study consisted of three phases: Time 1 included an initial interview with a research assistant, followed by seven days of online diary entries; Time 2 was conducted six weeks following the last day of online diaries and involved a second interview with the same research assistant, followed by another seven days of online diary entries; and Time 3 involved an interview, 6 months after the initial interview. My project analyzed data from Time 1 and

Time 2. All procedures were approved by our Institutional Research Ethics Board (REB# 20-04-

001).

Participants

Recruitment

We adopted a two-pronged approach to recruitment. Firstly, the research team for the larger study contacted organizations and services in Ontario that support young carers and/or children and adults affected by physical illness, disabilities, mental illness, chronic disease, and/or age- related diagnoses. We informed them of our study (see Appendix B) and requested their support in distributing our infographic (see Appendix A). Secondly, we shared our infographic via social media (e.g., Facebook, Twitter, Instagram) in hopes of reaching a mix of participants (those who were already associated with young carer services and those who were not).

Participant Screening

Interested participants were screened via phone call to ensure they met the following inclusion criteria (see Appendix C): (a) between the ages of 16-25, (b) living in Ontario, (c) identified as providing unpaid care for one or more family members (including grandparents, parents, siblings or other family members as long as they were not their child), (d) English speaking. Eligible individuals were then sent the consent form and the introductory letter to review (see Appendix

D). Participants responded in confirmation of their interest in the study, at which point the initial interview was scheduled.

Participant Selection

All individuals who inquired about the study were eligible and we ended up with four final participants. Table 1 shows each participants’ unique caregiving circumstances, their age, and their chosen pseudonym.

Table 1

Summary of Participants

Participant Age Care Receiver Family Circumstances Pseudonym Sophia 21 years old Sophia [along with her Sophia and Mal provided care sister Mal] provided for their grandparents, who care for their moved to Canada from India grandparents four years ago. They required Mal 25 years old Mal [along with her care because they were older sister Sophia] and could no longer carry out provided care for their their daily routines grandparents. independently. Sophia and Mal’s mother and father worked full time; their mother during business hours, and their father worked nightshifts. They all lived in one home together. Mandy 23 years old Mandy provided care Mandy’s father had a stroke six for her 71-year-old years ago. Since then, he father. required support with day-today living. Mandy’s mother worked full-time, and her brother attended school elsewhere, therefore he did not live at home and was not available to support in caregiving duties. Alice 16 years old Alice provided care Alice provided care for her for her older sister older sister, who had been diagnosed with Autism Spectrum Disorder. Her sister required constant monitoring and support. Alice’s parents provided care during the day while Alice was at school, and Alice provided care after school and in the evenings.

Data Collection

Time 1 Interview

We used Zoom to conduct interviews, given its advanced encryption standards and high levels of security, without monitoring or tracking audio or video content. Interviews lasted between 30-

45 minutes. Participants were offered a $20 gift card to their choice of Shoppers DrugMart or

President’s Choice. The research team chose Shoppers DrugMart and Presidents Choice for gift card incentives as these retailers are accessible in most communities across Ontario.

Additionally, both retailers provide a range of resources available, including grocery and pharmacy essentials. Gift cards provided online shopping and delivery options, which was particularly important during the lockdown.

Time 1 Diary Entries

Immediately following the interview, the participants were asked to complete a week of daily diary entries. We sent daily email reminders, with the link to a Qualtrics survey to fill out (see

Appendix F). The surveys took participants approximately 10-15 minutes per day to complete.

Participants’ diary entries varied in detail, some of which provided minimal detail and/or explanation in response to the question prompts. Participants were provided an incentive of a

$5 Shoppers DrugMart or Presidents Choice gift card per diary entry. If participants completed all seven entries in a week, they received a $35 gift card.

Time 2 Interview

Time 2 interviews were conducted approximately six weeks after the participants’ last diary entry. Interviewers began by reviewing the consent document (see Appendix D), giving participants the opportunity to ask questions. Participants were asked to provide verbal consent to the interview. The purpose of this interview was to explore any changes in their caregiving

experiences during the COVID-19 pandemic (see Appendix E). They were provided an incentive of a $20 Shoppers DrugMart or Presidents Choice gift card for their interview.

Time 2 Diary Entries

Following Time 2 interviews, participants were asked to partake in daily dairies for one week

(see Appendix F). They were emailed daily reminders with a link to the same Qualtrics questionnaire they completed in Time 1. Participants were provided a $5 gift card incentive to either Shoppers DrugMart or Presidents Choice per dairy entry or $35 for all seven entries.

Measures

Interview Questions

There were 20 interview questions which explored participants’ perceptions of COVID-19 and the impacts of the pandemic on their role as caregivers in the context of the family unit. We prompted them to reflect on the impacts that COVID-19 had on their social, physical and emotional wellbeing, while also inquiring about changes in their caregiving responsibilities and their familial relationships. For the complete interview protocol, see Appendix E.

Diary Questions

Daily dairies consisted of 17 questions prompting participants to reflect on their caregiving duties as well as their thoughts and feelings experienced each day. We asked questions in a variety of ways, including multiple choice, text entry, and with the use of sliders. We expected that providing participants with the opportunity to communicate their perceptions online would allow them greater privacy, a particularly important consideration given that quarantine restrictions had many families living in tight quarters. For a list of all questions, see Appendix F.

Ethical Considerations

The procedures for this research project were approved by the Research Ethics Board at the

University of Guelph, to ensure it met the federal guidelines for research. The risk level associated with this study was minimal as participants were asked about experiences in their everyday life. While there was some risk to participants as they were reflecting on the stress and anxiety they may have been feeling during the pandemic, there were also opportunities to share, reflect, and connect with researchers about their experiences thus minimizing isolation. Interview and dairy questions required participants to reflect on any positive experiences that were contributing to their wellbeing, as a way of mitigating risk. Researchers also connected participants with a list of resources tailored to young carers in Ontario, which one participant reported finding very supportive. Participants were given the option to withdraw from the study at any time without explanation or penalty.

Data Analysis

I used Braun & Clarke’s (2006) thematic analysis to explore the data set. Thematic analysis is useful in its ability to identify and organize themes in a way that “provides a rich and detailed, yet complex, account of data” (Braun & Clarke, 2006, p. 78). I carried out the recursive, six- phase analysis of Time 1 and Time 2 interviews and diary entries to identify patterns in participant responses regarding their experiences during COVID-19 (see Appendix E).

Phase 1: Familiarizing Yourself with the Data

In the first phase of my analysis, I immersed myself in the data as a means of understanding the breadth and depth of the content. My initial step towards familiarization, was through transcribing the audio recorded videos to written form. I listened to the content in its entirety a number of times, cross referencing the written form to ensure that the transcript was “true to its

original nature” (Braun & Clarke, 2006, p. 88). It was particularly important that the punctuation supported participant meanings and intentions. If I felt that participant excerpts required any adjustments to enhance clarity, I used square brackets within the transcript, to recognize my changes. I also made note of my initial interpretations of the data, identifying broad concepts and queries that were of particular interest, based on my research question.

Phase 2: Generating Initial Codes

The second phase of Braun & Clarke’s (2006) thematic analysis requires researchers to identify elements of the data that are relevant to the research question. To carry out this phase, I used the computer software called, NVivo, to organize and code transcripts and dairies. I employed an inductive approach to this analysis, coding all data without trying to “fit it into a pre-existing coding frame” (Braun & Clarke, 2006, p. 83). I used phrases to label data, capturing the line by line relevance to my research question. I coded the interview transcripts first and then followed up with coding the diaries. Most of the excerpts were coded multiple ways and I used data-derived codes to illustrate the participants’ words (Braun & Clarke, 2013).

Phase 3: Searching for Themes

Searching for themes is an active process that requires the researcher to identify meaningful patterns in the dataset that relate to the research question (Braun & Clarke, 2013). Thus, I reviewed the codes and collated data using NVivo software to explore various combinations of how they might be organized into central concepts or themes.

This was a time-consuming process that required a balance of complete immersion in the data, while recognizing the importance of creating distance with the data, revisiting it with a fresh eye.

The most challenging aspect for me, was determining a concepts’ level of importance. During my initial read-through, I was primarily focused on a codes’ frequency, without realizing the role

that researcher questions play in identifying patterns. According to Braun & Clarke (2013), it is imperative that analyses “not just look within a question, but across the whole dataset” when determining themes (p. 227). In order to view the data from a different perspective, I organized the data (interview transcripts and daily diaries) by participant, as opposed to by question, allowing me to see patterns across the dataset.

Phase 4: Reviewing Themes

This phase requires researchers to revise and refine the candidate themes established in the previous stage (Braun & Clarke, 2013). For me, NVivo Mind Map technology was instrumental in visually representing how my candidate themes were related. This process allowed me to move concepts around and organize my ideas in themes and subthemes based on their relationship to each other. This was an iterative process of collapsing themes into one another, creating new themes, and breaking themes down into subthemes (Braun & Clarke, 2006). During this process, I continued to refer back to the data to ensure candidate themes were appropriately supported with participant excerpts, and that they accurately represented participant voices.

Phase 5: Defining and Naming Themes

Defining and naming themes requires the researcher to communicate the “essence of what each theme is about” (Braun & Clarke, 2006, p. 92). To do so, I selected extracts from the data that best represented the story of each theme. Dr. Breen and Dr. Chalmers (my advisor and co- advisor) were instrumental in the process of defining and refining my themes, given that they had read the interviews and were familiar with the data. They viewed the analysis with a fresh perspective, aiding in the development of clear, purposeful themes with compelling analyses that moved beyond “just paraphrasing” the participant extracts (Braun & Clarke, 2006, p. 92).

Phase 6: Producing the Report

The final phase of Braun and Clarke’s (2006) thematic analysis is to write up a report that tells the story of your data. It requires the researcher to construct a clear, concise, and interesting report that provides the reader with more than just a summary of the data. Readers should finish reading the report, clearly understanding the relevance of the researcher’s argument, in relation to their research question based on compelling literature and excerpts in the data (Braun &

Clarke, 2006). In the section below I have outlined themes and subthemes that, I believe, best tell the story of how Ontario’s young carers experienced the initial phases of COVID-19 pandemic.

Trustworthiness

According to Korstjens & Moser (2018), trustworthy findings are defined by their level of credibility, transferability, dependability and confirmability. I engaged in a number of practices, in order to ensure trustworthy findings for this study. Firstly, as a way of ensuring credibility, our methodological approach employed semi-structured interviews, as well as diary entries allowing participants different outlets to share their experiences. We were able to cross reference the transcripts with participants’ daily dairies as a way of accounting for internal validity.

Another strategy I used to ensure credibility was investigator triangulation (Korstjens &

Moser, 2018). All transcripts and analyses were sent to members of the larger research study where they provided ongoing feedback. After analyzing the data, I presented my findings to both my advisor and co-advisor independently, comparing interpretations. If our interpretations differed, we talked through the analysis and came to an agreed upon interpretation for the data.

Transferability requires the researcher to provide a “thick description” of the participants’ experiences and circumstances (Korstjens & Moser, 2018). By providing a detailed timeline of the provincial response to COVID-19, my intention was to give context to participant responses,

so that participant behaviour and experiences were meaningful to all outside readers (Korstjens

& Moser, 2018).

Lastly, I ensured dependability and confirmability through my ongoing method notes from the start of the project to the end. I have provided transparency in my process and my records show my research path through meeting notes, NVivo coding documents, various concept maps of themes and subthemes, and ongoing feedback from members of the larger research team.

Chapter 4: Findings Summary of Findings

A cross-case analysis revealed the following themes and subthemes (see Table 2) as common participant experiences in providing care during phase 1 and 2 of COVID-19 in Ontario.

Table 2

Summary of Findings

Theme Subthemes

COVID-19 has Provided Whole-Family Relationships Young Carers More Time Carer-Care Receiver Relationships Self-Care

Caregiving during COVID-19 Difficulty Balancing Carers’ Responsibilities is Challenging Caregiving during COVID-19 is Constant COVID-19 Impacts Young Carers’ Wellbeing Worries for the Future during COVID-19

Support Systems for Young More Hands Make Light Work: Informal Support Carers during COVID-19 Formal Support during COVID-19

Recommended Future Individual Support in Caregiving Responsibilities Supports for Young Carers Improving Accessibility to Young Carer Supports Educational Support Improved Quality of Formal Support Future Research

Table 2

Time 1 Interviews vs. Time 2 Interviews

Participants in this study indicated some notable differences between Time 1 and Time 2 interviews. Time 1 interviews were conducted during phase 1 of Ontario’s Action Plan

(Government, 2020), wherein Ontario residents were in lockdown, restricted to the confines of their homes. Time 2 interviews were conducted during phase 2 of Ontario’s Action Plan

(Government of Ontario, 2020), when provincial quarantine restrictions were being loosened; allowing individuals to rejoin the work force. As such, participants’ family members were returning to work, thus unable to contribute to the caregiving duties at home.

Theme 1: Covid-19 has Provided Young Carers More Time

The first theme identified by participants when asked about their experiences during the initial stages of COVID-19 was that they had more time for themselves. The overarching narrative reflected how workplace closures, schools’ shift to virtual learning platforms, as well as the cancellation of extracurricular and social activities provided participants with more time to spend with their families, their care receivers and themselves.

Whole-Family Relationships

Participants in this study consistently referred to changes in their family relationships as a result of the drastic measures implemented, particularly, during phase 1 of COVID-19. When asked about how COVID-19 had impacted their family, all participants responded by saying that their family relationships were enhanced as a result of spending more time together. For example, Sophia said, “my family is also a lot more relaxed because we have more time and are less busy.” (Time 1: Sophia) She said that the lockdown measures in phase 1 allowed her more time to spend with her parents. “So, now I have lots of time to go out and help [my parents] with

[gardening]. Um so, it's also like spending more time with them when they don't have to work, or

I don't have to work.” (Time 1: Sophia)

Mal explained how the pandemic impacted her relationship with her sister, who also provided care for her grandparents. Instead of spelling each other off in their caregiving responsibilities,

Mal felt that they had more time to spend together engaging in non-caregiving activities. She said, “my sister and I would have classes during different times before [COVID-19], but now

being home we are spending more time playing board games and all. So, I guess same thing again, [our relationship] has just got better.” (Time 1: Mal)

Mandy reiterated how the provincially implemented shift to online learning impacted her relationship with her brother, saying, “um, I think [COVID-19] impacted [my family relationships] in a positive way. And what I would say is that thankfully, my brother is also home now too. So, we are spending a lot more time with each other, which is good.” (Time 1:

Mandy)

Overall, participants felt that COVID-19 had positively impacted their family relationships.

They reflected on the benefits of having more time to engage in leisure activities with their families, while also feeling they had less responsibilities to juggle.

Caregiver-Care Receiver Relationships

Not only did participants refer to the positive impacts of having more time with their whole family, but they also specifically referenced improvements in the relationship with their care receiver. Mandy said:

I think [my relationship with my father] has improved a lot. I think I've become much,

more closer with him. I think the dynamics of my family have changed a lot where we're

spending much, much, much more time together. (Time 2: Mandy)

Sophia also recognized the change in relationship with her grandparents when she said, “once

COVID hit, [my grandparents and I] were spending more time together and just getting more comfortable in each other’s presence.” She reflected on how prior to COVID-19, she spent most of her time with her grandparents in a caregiving capacity, but since the quarantine restrictions were enforced, she said, “but now I'm having breakfast, lunch, and dinner with them together at home.” (Time 1: Sophia)

Similarly, Mal reflected on how phase 1 of COVID-19 changed her schedule, which also impacted her relationship with her grandparents. Before COVID-19, Mal was a full-time student and had a part-time job; generally, on campus or at work all day. While most of her caregiving responsibilities were carried out at night, Mal’s response suggested that she was carrying some level of burden throughout the day, knowing that her grandparents were alone:

So [before COVID], I would be out, and then I would just return home in the evening. And

then when I was not home, I was making sure, like, especially my grandparents knew what

to do, because they would be staying home all day when my parents weren’t home. (Time

1: Mal)

However, when her workplace closed and her school became virtual, Mal was no longer required to be out of the house all day. Furthermore, the tension interpreted in the statement above seemed to have dissipated as she was able to spend more time with her care receivers.

And yeah, so I think um [my relationship with my grandparents] has become stronger

since I have had a lot of time to spend with them. Um, like before I didn't used to have

time during the day, it would just be evenings. But now like, I am with them for almost

the entire day. We watch TV and we eat together. (Time 1: Mal)

As a result of COVID-19, participants communicated how more time at home enhanced their relationships with their care receivers. Participants had the opportunity to spend time with their care receivers sharing non-caregiving experiences. This seemed to have changed the dynamic between them, allowing for their relationship as family members to develop.

As such, being able to take off the “caregiver hat” was important in fostering a stronger relationship between participants and their care receivers.

Self-Care

The time saved from routine tasks such as commuting to school and grocery shopping provided participants more time to engage in self-care practices; a luxury many young carers forgo to accommodate their caregiving responsibilities.

During her Time 1 interview, Alice said, “before [COVID-19], I would go to school every day and have homework after school, so I was a lot busier, and now I have time to exercise which I really enjoy and didn’t really have time to do before.” Alice goes further to say that, “I have been sleeping a lot better because I don’t have to get up early every day for school so that’s been good.”

Mandy’s daily dairy entry was indicative of her appreciation for the time to engage in daily self-care practices; while also demonstrating how young carers often sacrifice their own needs to accommodate others. While many people would perceive taking a shower and shaving their armpits as a need not a want, Mandy reflected on how COVID-19 had allowed her the time to do so, when she said:

I packed up some laundry, took a shower and washed my hair and shaved my armpits

lol [laugh out loud]. I also put on a nice summer dress which I haven't done in a while

as we went to see the [place]. It was a nice self-care Saturday which I felt really good

to have some me time. (Time 1: Day 1 Qualtrics Mandy)

Later in the week, Mandy added to her daily diary saying that, “[I] was able to go down on the treadmill for 30 minutes which I am pretty happy about. (Time 1: Day 4

Qualtrics Mandy) [….] I had the opportunity to attend some personal me-time meetings which made me feel productive.” (Time 1: Day 4 Qualtrics Mandy)

With less responsibilities and travel time to account for, participants’ experiences during COVID-19 lead to healthier lifestyles. They were exercising more and sleeping better, while having enough “free time” to engage in self-care practices of their choice.

Theme 2: Caregiving during COVID-19 is Challenging

The second theme that was consistent between participant accounts, was the overarching notion that providing care during COVID-19 was challenging. Participants acknowledged the difficulty they had in balancing their responsibilities, the constant caregiving role they had to assume, and the additional worries they felt in the context of the global pandemic.

Difficulty Balancing Carers’ Responsibilities

While participants referenced the benefits of having more time at home, they also recognized the difficulty in balancing their responsibilities while confined to the home. For example, Alice discussed the challenges associated with monitoring her sister’s needs, while concurrently trying to maintain her own academic expectations. She said:

Today was worse compared to the other days, as the person I provide care for

underwent mood swings and abnormal behaviour which meant that I had to monitor

them carefully in order to prevent them from doing anything harmful to themselves and

to regulate their behaviour. This affected me negatively as it distracted me while I was

trying to finish some of my schoolwork. (Time 1: Day 3 Qualtrics Alice)

Mandy also acknowledged the challenge of balancing her father’s needs with her own, when she said, “[my] dad needs support and supervision pretty much 24/7 so I spent majority of my day with him, which was a bit tiring and exhausting.” (Time 1: Day 5 Qualtrics Mandy)

Prior to COVID-19, the time and space required for school, work and friends was “protected” given the social norms requiring students to attend school, participate in the workforce in-

person, and socialize with friends, often outside of the home. However, with school moving online, workplace closures, and restrictions on socialization during COVID-19, participants were faced with the additional responsibility of setting boundaries and organizing their time to accommodate both their needs and their care receiver’s needs.

Caregiving during COVID-19 is Constant

Research has found that young carers value time away from home and their caregiving responsibilities. In a study conducted in the U.K., young carers referred to their time away from home as a “break” and a “rest from being carers” (Richardson, et al., 2009). During phase 1 and

2 of COVID-19, this break was not possible, given the stay-at-home measures enforced. As a result, all of the participants made some mention of the constant caregiving demands they felt, specifically during Time 2 interviews, when family members were re-entering the workforce.

Alice noted the difficulty in finding respite from providing care for a family member when she said:

[…] since caregivers are at home most of the time and they’re most likely quarantined with

the person they care-give for, it puts, like, more stress on them. Like, more than when they

were in school because then, like, they were, like, busy with school and would not have to

focus on both of them. (Time 2: Alice)

She goes on to say that “[…] it takes a lot of work to care-give for someone because you have to pay attention to them mostly all the time. So that takes a lot of um, dedication as well. (Time

2: Alice)

After weeks of being quarantined with family members, participants reflected on having to

“adjust” when their family members returned to work, during the provinces graduation to phase

2 of the Reopening Framework. As family members re-entered the workforce, this put

participants in the position of carrying out more caregiving responsibilities. When asked about what a typical day looked like during Time 2 interviews, Mal’s explanation demonstrated how her caregiving responsibilities shifted from being shared between herself, her sister, and her parents to just her and her sister upon her parents’ re-entry of the workforce. She said:

So, a typical day would look like, just in the morning, I would have to take care of my

grandparents because my parents are back to work full time. So, me and my sister are

at home right now, so I have to make sure that my grandparents are like, getting the

care that they need, they're taking their medications on time, they're taking proper

food, and basically this. And sometimes in the evening, I go out with them for walks.

(Time 2: Mal)

Additionally, the protective measures implemented during phase 1 and 2 of COVID-19 isolated families within the same households from receiving support from family and friends. In the following excerpt, Mandy acknowledged how COVID-19 created a situation that restricted extended family members from being supportive in caregiving duties for her father.

So, my dad, he has a really large family. He has about eight sisters. And they all live

within the [region] like they all live within the [city] area. And obviously, they are

concerned for his health and his safety and they oftentimes would call our house on, I

would say, a weekly basis on occasion to talk to him and check in with him. But

because of COVID, obviously from March, April and even May nobody, none of his

sisters were obviously able to come to my home because of the restrictions (Time 2:

Mandy)

With little opportunity for respite, participants reflected on the constant caregiving responsibilities they assumed during phase 2 of COVID-19. There were notable

differences in caregiving duties between Time 1 and Time 2 interviews, as participants managed more of the caregiving burden when family members were permitted to re-enter to workforce.

COVID-19 Impacts Young Carers’ Wellbeing

Participants shed light on the stressors of providing care during the pandemic. They reflected on feelings of exhaustion, sadness, loneliness, and anxiety which remained consistent between Time 1 and 2 interviews.

Alice recognized how her sisters’ mood directly impacted her own wellbeing on any given day. The following quote demonstrates the sense of responsibility Alice felt for her sister’s health and the burden of constantly monitoring her to ensure she was not self- harming.

Uh, some-some days when [my sister] is really stressed, it can take a toll on [me]

because [I] have to take a lot of time out of [my] day to take care of [my sister] and

[make sure she’s] not harming herself. So that can take a mental toll on me and make

me feel exhausted sometimes. (Time 2: Alice)

Sophia reflected on her experiences of having to adjust to phase 1 and 2 of COVID-19. She shared the emotional impact this had on her, recognizing feelings of loneliness and discomfort.

[Before COVID-19] I always preferred like just being around people at the university. But

[since COVID-19] I guess I got used to being at home. Um in the beginning it could be

lonely at times, [but] since I had a lot of family members at home it was not too bad. But um,

now some family members have re-joined work. Um, so it’s been a bit quieter these days. Uh,

but I’m managing well because I’m just keeping busy. (Time 2: Sophia)

One of the stipulations of phase 1 of COVID-19, was the restrictions of in-hospital patient visitors. Mandy provided insight into the experience of being a caregiver, restricted from seeing their care receiver in-hospital during COVID-19. She said:

I had the opportunity to talk to [my father] on the phone for about 1 minute and I felt sad

that I couldn't be there to see him in person and encourage him. However, the doctor also

called today to give us an update on his health status which was a little comforting and

hopefully he will be home soon. (Time 1: Day 1 Qualtrics Mandy)

In her diary entry the following week, Mandy said, “I'm not sure [how my father is doing] as I have not seen nor talked to my him today. I hope he's alright.” (Time 1: Day 2 Qualtrics Mandy)

Furthermore, when asked about what brought her joy during Time 1 interviews, Mandy struggled to find an answer, saying, “I think I'm just in the mindset of just being worried about my dad and I'm concerned about how he's doing [in hospital] so that's my focus. So, I haven't really found anything lately that's brought me any joy.” (Time 1: Mandy)

COVID-19 has undoubtably implicated the wellbeing of young carers, as demonstrated by participants of the study. Whether it be the constant concern for their care receiver’s wellbeing, the adjustment to new living circumstances, or the restrictions from seeing family members in- hospital, young carers have been required to adapt to changes that even the most well-equipped individuals would struggle with.

Worries during Covid-19

The Future of the Virus. There were a number of common worries communicated by the participants concerning the unknown future of COVID-19. During Time 2 interviews when provincial restrictions were loosening, participants referenced their fears of a second wave of the virus.

Mal shared her fear of another wave of COVID-19 as well as the urge to return to normalcy when she said, “at this time, I hope that um, the like, a second wave won't come and then everything will be, like, back to normal again.” (Time 2: Mal) Sophia also responded saying that,

“[I hope] we don’t have another wave of COVID um, and we get the vaccine soon.” (Time 2:

Sophia)

Mandy reiterated her concern for the future, looking even further ahead to the possibility of a third wave when she said, “I think honestly, my biggest concern Stephanie, with this COVID-19 pandemic, is if it gets to the point where there is a second wave or even a third wave.” (Time 2:

Mandy) Mandy elaborated on her fear of the longevity of the virus as it pertained to international relations and border restrictions with the United States when she said:

However, my biggest fear is if Canada, let's say were to open its international borders to

other countries like the United States. Right now, the border is closed, however, I was

watching on the news recently that they're thinking of reopening the border between

Canada and the United States, maybe at the end of July, and so there is always that

potential of [the virus] coming back. So, I guess that would be my only concern; is if in

two to three years from now if this [pandemic] is still going on, which I really hope it

doesn’t. (Time 2: Mandy)

Fear for Care Receiver’s Wellbeing. Another commonly referenced fear discussed by participants was specific to their care receiver’s wellbeing in light of COVID-19. Sophia said,

“my greatest concern is, somehow, I guess, having my grandparents come in contact with the virus.” (Time 1: Sophia) Mandy reiterated this sentiment, indicating that she felt fearful of bringing any germs home to her immuno-compromised father.

So, I definitely am more vigilant about [my actions]. And I would say, a little bit more

frightened and I feel a little bit more scared because of how vulnerable my dad is if he

were to [contract the virus]. So, [the risk of him becoming infected] has definitely crossed

my mind. It's definitely something that I have thought about every single day. (Time 1:

Mandy)

Alice shared her concerns for her sister, reflecting on the indirect impact COVID-19 had on her family given schools’ shift to virtual learning. She said:

At this time my greatest concern is that my sister and mom are under a lot of stress. [My

sister] has ASD so she might harm herself or do things that are not, like, good for her [...]

Like one time she tried to, like, cut her, uh, stretch marks off because she was really

stressed. Like stuff like that. And we have to, like, to stop her from doing that […] So,

I’m worried about the workload getting too much and especially now they have online

[school], because they have to listen to a bunch of lectures. I’m worried for her stress

levels. (Time 2: Alice)

Educational Worries. Not only did Alice identify the impact of educational stress for her sister, but she also indicated feelings of discomfort in her own academic life. It is important to note that Alice was still in high school, having had limited experience with online learning modalities. The immediate transition to a virtual classroom left Alice feeling anxious.

A challenge that I faced [today] was thinking about what topic to talk about on a

podcast for a culminating project that I have for English. This is because I have to have

a conversation with the teacher about which topic I have chosen in 2 days and the rough

copy of the script is due in about a week. (Time 1: Day 4 Qualtrics Alice)

In addition to the increase in independent learning, she also reflected on the difficulty of staying focussed on her schoolwork without being monitored. She said, “one challenge that I faced [today] was trying to focus when I am doing schoolwork as I can get easily distracted when using the computer and start using the computer to do things like watch YouTube instead of work.” (Time 1: Day 4 Qualtrics Alice)

Financial Worries. Lastly, participants recognized the financial implications that the pandemic had on their families, indicating that they were feeling some level of concern about the sudden change in incomes. Alice said, “I was supposed to have a job to get money, but I’m not going to have it anymore because of [COVID-19].” (Time 1: Alice) Mal reflected on the financial impact on her family given that both of her parents were laid off.

Ah, well, like my parents were laid off because of [COVID-19]. So, um, that is the main thing

that has happened. Um, even though they're getting benefits, it's just minimal. It's just like, not

as much as if they were working [which] would have been better, but they were laid off, so.

(Time 1: Mal)

Participants of the study communicated their concerns about how COVID-19 would impact their future. Be it the longevity of the virus itself, the impact of the virus on their care receivers’ wellbeing or the academic and financial fallout from this pandemic, participants shared their concerns about both the uncertainty and potential instability of the future.

Theme 3: Support Systems for Young Carers during COVID-19

Each participant’s caregiving experiences, and support systems differed based on their individual family circumstances. Participants in our study were asked about what caregiving supports they were receiving, and what supports they wished they were receiving during the

COVID-19 pandemic. While most participants were not receiving formal support in their

caregiving duties, they commonly referred to the benefits of having more informal support from family members, given the stay-at-home measures implemented in Ontario during phase 1 and 2 of COVID-19. Alternatively, the one participant who was receiving formal support for herself and her care receiver provided insight into the challenges of receiving services during the pandemic.

More Hands Make Light Work: Informal Support

“More hands make light work” was a common sentiment expressed by participants during

Time 1 interviews. As previously discussed, participants reflected on the benefits of having more time at home with family members. However, this theme is distinct in relating to the impacts that

COVID-19 had on the level of informal support experienced by participants. Participants shared their perceptions of the benefits of phase 1 of COVID, wherein family members were more available to support with care responsibilities, alleviating some of the caregiving burden.

For example, Sophia explained how caregiving duties were shared during the pandemic, given that both her and her sister were engaged in virtual learning and her parents were both laid off.

She said:

Um, if I’m busy for example with studying or other responsibilities, then [my family]

would, um, spend time with [my grandparents] [...] Like my sister would spend time with

my grandparents or my parents would take them on grocery trips or something on the

weekend. (Time 2: Sophia)

She elaborated on the benefit of having greater support at home when she said, “my parents feel more supported because I’m not at university the whole day, so I can provide company or give help with, like, cooking or things like that, and I think they like that.” (Time 2: Sophia)

Sophia’s statement reflects how shared responsibilities may enhance whole family functioning; reinforcing how family members influence one another within the family unit.

In addition to the support of having more family members at home to pitch in with practical caregiving jobs, Sophia also recognized the relief of knowing that her grandparents were never alone when she said, “it’s, um, good because my grandparents are not alone at any time, usually.” (Time 1: Sophia)

Mandy communicated gratitude for having her brother home from school for the summer, not only to provide support for her father, but also be a support for her, as the primary caregiver.

[My brother] goes to [university], and he is in the [program] there. And if it wasn't for

COVID, [he] would actually be in school right now from May to August. So, the fact that

we do have him home I think has been a huge asset because obviously the more hands the

better, where if I was the only individual home, I think I would feel burnt out. (Time 2:

Mandy)

Participants emphasized the importance of having more support at home during the pandemic. They recognized the impact of sharing caregiving responsibilities with their family members acknowledging how it enhanced their own wellbeing and the functioning of their family unit.

Formal Support during COVID-19

Support for Care Receiver. Of the participant pool, Mandy was the only individual whose care receiver was accessing supports and services. She reflected on how phase 1 and 2 of

COVID-19 impacted both the frequency and quality of the formal support her father received.

PSWs [Personal support workers] usually only come into my home twice a day. Usually

in the morning and again in the afternoon. And, um, usually we have two PSWs because

my dad needs to use a Hoyer lift in order to do his transfers in and out of the bed and

things like that. So, we have two people that come in every day that usually take him to

the restroom, give him a meal to eat, and do some things, like that, like changing.

However, I'm finding that because of COVID, I think a lot of PSWs have limited their

amount of hours they want to work. And so, I think a lot of PSWs have either not

wanted to work or prefer to stay at home. And so, because of that, there has been a

shortage of PSWs. (Time 1: Mandy)

Interestingly, the inconsistency in care did not improve for Mandy’s family between phase 1 and phase 2 of COVID-19, as she shared similar sentiments in her second interview, which was six weeks after her first interview.

So, for example, today, we had some PSWs that came to my home at 12 o'clock, and

then they left at about, I would say, 12:22, so unfortunately [they] only spent 22

minutes [with my father] which is okay, but normally they're supposed to stay for at

least an hour. And in my opinion, [sigh] they didn't really spend the full time and so

because of that they only took my dad to the restroom. (Time 2: Mandy)

As Mandy shared in her first interview, her father required significant physical support from PSWs, given his inability to get in and out of bed, use the restroom, and get dressed.

Thus, Mandy had to accommodate for the time and tasks forgone by PSWs where possible; recognizing that there were constraints on her ability to support her father with tasks that were out of her physical capabilities.

She also shared how the quality of care from PSWs ultimately impacted the care her father received from physiotherapists. This shed light on the collaboration between care workers; in this case the domino effect that led to ineffective formal support to both Mandy

and her father. She said, “so because of COVID-19 we would normally have his physiotherapists come into my home and train the PSWs on how to give my dad the exercises. But since the pandemic obviously, the training has not been set up yet.” (Time 1:

Mandy)

In addition to having to accommodate for the lack of formal support from physiotherapists and PSWs during this time, Mandy also talked about the additional health risks of having people into her home during the pandemic.

PSWs are going into other people's houses, as well as some of the PSWs work in different

types of facilities. So, [the spread of COVID-19] definitely crossed my mind […] I definitely

feel stressed to some degree, more so than before the pandemic [because] I am more cautious

when they are in my home because I know that, if somebody did have [COVID-19] and pass

it to my father, then the outcome probably wouldn't be very good. (Time 1: Mandy)

She elaborated on the stress and anxiety she felt, trying to manage the health risks associated with receiving formal support, when there seemed to be very little protocol for PSWs to follow.

Every day we would have different PSWs that come into my home. So, some PSWs, were

regulars but some PSWs were new. And so not all PSWs called before coming into my home

to make sure that nobody else had [COVID-19] in my house. But also, the thing is too, is that

not all PSWs wore masks or, or any type of protective equipment. So, it was just something

that I was always mindful of and it was something that I definitely kept in the back of my

head. (Time 1: Mandy)

Support as a Young Carer. While there were notable shortcomings in the formal support her father was receiving, Mandy recognized the benefits of receiving support for herself, as a caregiver during this time. In a daily dairy entry, she wrote:

I reached out to my therapist for an appointment by phone to catch-up and chat about my

mental health and wellness. The phone call was 1 hour, and it felt good to talk to someone

else other than people I live with for a change. (Time 1: Day 3 Qualtrics Mandy)

In addition to the support provided by her therapist, Mandy joined the [organization] as a result of this study. She learned about this support network in the first round of interviews and became involved with them over the 6-week period between Time 1 and Time 2 interviews. She reflected on her experiences with them when she said:

When I joined the [group name] it was offered through the [organization]. And I

have to say only positive things about my experience with the [organization]. I really

mean that. And what I find is that their services are so incredible because they're

specifically tailored to caregivers in Ontario, and they have a variety of different

workshops that they offer […] So, my experience with joining the group has been

incredibly powerful, incredibly amazing and just so supportive.” (Time 2: Mandy)

She also shared the benefits of connecting with other young carers, as they could relate to one another in a way that she may not have been able to with her peers who did not have caregiving responsibilities.

Um, I think the [organization] has done a good job of creating a peer support or

young caregiver support group that has been really great. Because honestly, in my

personal life, I don't know very many young caregivers. So just being able to talk to

other people who, um, who… who’ve experienced caregiving at a young age, I think

that's been really great. [There was] one person that I really connected with in the

group, she is also a young caregiver. She is about the same age that I am, and she

gets it, she knows what it's like. And I think why we have this similar bond is her

mom also has a disability and she also uses a wheelchair like my dad. And we both

had this in common, [and] so many things in common that we were feeling, and we

were worried about. (Time 2: Mandy)

She expanded on how feeling connected with other people in similar circumstances was comforting, specifically when referencing her lack of travel experiences due to her caregiving responsibilities.

So, for example, as a young caregiver, um, I haven't really traveled anywhere, or left

Canada within the last five years since my dad became ill. I don't think it's because of

him that I wasn't able to leave but I think obviously traveling can be a little difficult

because obviously, he needs somebody monitoring him all the time. And she totally

related to that. And she also relates to the fact of, you know, leaving um, the person

that we care for, unattended is uh, one of our concerns. So it's nice that we have that

common connection of knowing what it's like having a parent with a disability.

(Time: 2 Mandy)

Mandy’s experiences receiving formal support during phase 1 and 2 of COVID-19 in

Ontario are important to note. The inconsistency and lack of quality support provided to

Mandy’s father, directly implicated her and her family. If the PSWs did not show up one day, it became Mandy’s responsibility to carry out those tasks; some of which were not physically possible (e.g., lifting her father out of bed, bathing her father, taking him to the bathroom etc.). In addition to having to manage additional care responsibilities,

Mandy’s account of the lack of protocol regarding personal protective equipment worn by support workers highlight the additional burden young carers during this time.

Circumstances like this put Mandy in a precarious situation, having to weigh the costs

and benefits of receiving support for her fathers’ basic needs, while knowing that there was a risk that they could all be exposed to the virus.

Mandy’s experience with young carer supports was encouraging. It highlights the success of existing Ontario programs in meeting young carer needs while also reinforcing the importance of greater access and awareness of such organizations.

Theme 4: Recommended Future Supports for Young Carers

As a part of our study, participants were asked about what supports they felt would be helpful in their roles as young carers in general. Participants commonly referenced their desire for support in practical caregiving duties, greater accessibility to caregiver supports, educational support and an overall need for improved quality of formal supports for both caregivers and care receivers.

Individual Support in Caregiving Responsibilities

Participants shared their desires for individualized support in their caregiving duties. Young carers accommodate for the complex and changing needs of their care receivers and families, on a daily basis. As such, participants shared practical supports that they felt would be helpful given their family circumstances. For example, Mandy said:

I wish there was a service that delivered thickened water and pureed food to my house

so we wouldn't have to make it manually. It would save a lot of time and energy for my

mom [because] my dad can only eat soft foods and liquids that are thickened. (Time 1:

Day 2 Qualtrics Mandy)

For Sophia, practical support was also referenced as top of mind, as demonstrated when she said she would appreciate, “support with getting groceries or help with groceries, like delivery [services]. That would be a big help.” (Time 2: Sophia)

Young carers often lack the resources to carry out practical caregiving duties. These could be physical resources (e.g., car and/or licence) or informational resources (e.g., the care receiver’s medical information and/or contact with medical professionals).

Furthermore, participant experiences highlighted the importance of approaching each families’ needs on an individual basis. While it is clear that young carers accommodate care receivers’ needs in the best way they know how, further research needs to be conducted exploring young carers’ desire for specific practical supports, as programs and/or community initiatives progress and develop.

Improving Accessibility to Young Carer Supports

As a young carer eager for support, Mandy shared her lack of knowledge about how to seek out resources. She suggested the need to improve accessibility to services, saying:

Yeah, I mean, I think there are so many services and so many resources out there because I

know they do exist, but it's just hard to remember them. It's hard to know what's really going

on out there, especially now with everything being moved online. (Time 1: Mandy)

She also felt that support specific to the caregivers’ circumstances would be beneficial. In her case, she would have appreciated a support group for those impacted by stroke survivors. She said:

I don't really know a lot of community supports and resources for people impacted by strokes.

And I think having that type of network where other caregivers can get together could be

really resourceful and useful to have that kind of sense of support. (Time 1: Mandy)

In her daily dairy entry, she later suggested her wish for “a caregiving app with information about all things caregiving.” (Time 2: Day 4 Qualtrics Mandy)

Mandy remains in the minority of young carers in Ontario, who both identify as a young carer and are informed enough to seek out supports, and even still she has reported having difficulty doing so. This does not bode well for the larger population of young carers who remain invisible within the caregiving landscape, shouldering significant care responsibilities in silence. As such,

Mandy’s excerpts demonstrate the necessity to improve accessibility of services and resources for young carers in Ontario.

Educational Support

Participants also identified the need for educational support. Both Sophia and Alice reflected on the difficulty of keeping up with academic deadlines given their caregiving responsibilities.

These participants explained how having the space to share their experiences; knowing that educators would be supportive and accommodating, would relieve them of additional burden brought on by caregiving responsibilities.

Sophia said, “it’s just that sometimes [my caregiving responsibilities] made me think I might have problems submitting assignments or anything on time. But I think if students can explain their situation, usually educators would understand their perspectives.” (Time 1: Sophia) Alice said, “I would want teachers to understand if I need a deadline extended when there is a lot of work due because it can be a lot to keep up with schoolwork and take care of [my sister].” (Time

1: Alice)

Mandy reflected on her educational experience, saying that having had supportive educators in her school career aware of her caregiving responsibilities was very helpful to her success. She said, “I think being a young caregiver, I think for me, I've been really lucky to work at a school where they have been really mindful and really sensitive of my caregiving needs.” (Time 2:

Mandy)

Young carers live in exceptional circumstances, taking on responsibilities that may be viewed as beyond what is deemed “age-appropriate” from a Westernized perspective (Aldridge &

Becker, 1993; Becker, 2007; Rose & Cohen, 2010). Thus, the Canadian education system has a responsibility to accommodate accordingly in order to ensure equal and inclusive learning opportunities for all.

Improved Quality of Formal Support

This section will explore Mandy’s experiences, as she was the only participant whose family was receiving formal support for caregiving duties. She indicated that “consistency” and

“quality” of care needed to be improved, specifically highlighting how the role of empathetic and compassionate support workers are important to the overall care experience. She said:

I am grateful for the PSWs. I think that the work that they do is really hard, and it can be

really challenging. But at the same time, I always feel like the quality of care has really lacked

in terms of their compassion, and the way that they respect my father and even the way they

respect our home, I feel like that could always be improved […] I definitely believe more

training for [PSWs] is necessary. For example, how to de-escalate a person who may be more

agitated and just having that empathy; knowing that somebody is relying on them for support

and for the care because obviously, they're in a situation where my dad has a disability and he

isn't able to help himself. So, I think, you know, having that sensitivity to people who have to

rely on them for their everyday needs, and just how to better work with them. I think that

would be more appreciated. (Time 2: Mandy)

Mandy also felt that the most helpful support she would want in her role as a young carer was reliable and adequate care for her father. When asked about what support she

wished she had, Mandy responded by saying, “I wish I had more physiotherapy for my dad offered on a regular and weekly basis in our home.” (Time 1: Day 6 Qualtrics)

In her interview, Mandy referenced feeling ill-equipped to provide her father with beneficial exercises that would help him in his stroke recovery. She sounded discouraged and at a loss, when reflecting on the reliance she placed on formal care for her father; indicating that consistent support for her father would in turn provide her respite and comfort.

Future Research

Lastly, when asked about future supports for young carers, Mandy shared her desire to see more research regarding the lived experiences of caregivers. She said:

I would just say more support services. I think that would be the most beneficial thing and just

more people doing research about caregiving, more people studying caregiving, and more

online courses, like the one offered by [program] on caregiving, I think would be phenomenal.

(Time 2: Mandy)

While Mandy was the only participant to suggest more research, it is important to note that as a young carer, she recognized the lack of awareness about her circumstances. She has reflected on the challenges of not receiving support, while also acknowledging the impact of having educators and workplaces that are supportive of her responsibilities.

Chapter 5: Discussion

Summary of Research Problem

Providing care for a family member can be a stressful experience at the best of times, let alone during a global pandemic. COVID-19 has undoubtably enhanced the burden felt by young carers. Whether individuals were existing young carers or required to become young carers due

to family members falling ill from the virus, the sudden health crisis has left this cohort of youth and young adults responsible for navigating new circumstances with few resources and little support. Thus, the purpose of this research study was to explore the experiences and perceptions of young carers in Ontario during the initial phases of COVID-19.

Summary of Research Findings

The findings from this study suggest that young carers have been affected both positively and negatively during phase 1 and 2 of the pandemic in Ontario. The participants reflected on their experiences, collectively indicating that: (1) they have had more time to engage with their families, their care receivers and themselves; (2) caregiving during COVID-19 has been challenging; (3) COVID-19 has impacted formal and informal support for young carers and their families; and (4) future supports for young carers and their families are required. These findings add to the literature, providing policy makers, educators and practitioners, insight into the perceptions of young carers during the onset of COVID-19, while also shedding light on the importance of contextualizing the young carer experience.

Theme 1: COVID-19 has Provided Young Carers More Time

Young caregiving is often characterized by the ongoing struggle to juggle school, work, family, and caregiving responsibilities (Rose & Cohen, 2010). Caring activities have been said to require significant mental and physical resources of caregivers, resulting in a lack of personal time (Charles, et al., 2012; Leinonen, 2011). According to Leinonen (2011), young carers not only lack physical free time, but they also lack “happy-go-lucky” time, where they are worry- free for a continuous block of time (p. 99). Furthermore, whether young carers are physically with their care receiver or not, they report carrying the burden of their responsibilities.

Interestingly, the findings of this study suggest that given lockdown restrictions, participants had more time to spend with their families and care receivers, as well as more opportunities to engage in self-care practices. My findings support existing research (Rose & Cohen, 2010), in that participants perceived the increase in time spent with their families and care receivers to be beneficial, as it enhanced their familial relationships. Additionally, some participants also indicated relief in knowing that their care receivers were not alone at any time (Leinonen, 2011).

Young carers have previously reported difficulty eating and sleeping, given the stress associated with their responsibilities (Cree, 2003; Joseph, et al., 2019). Participants in this study however, indicated that given the time they saved on commuting to school, work, and adhering to social obligations, they were able to spend more time engaging in self-care practices (e.g., sleeping, exercising, journaling etc.). They were appreciative of the extra time they were permitted during phase 1 and 2 of COVID-19, recognizing the impact it had on their own wellbeing.

Young caregiving has been associated with the loss of opportunities to engage in a “normal” childhood (Charles, et al., 2012). Caregiving duties have been found to restrict young carers from socializing with peers, as well as participating in extracurricular activities and school life; thus, contributing to feelings of isolation (O’Dell, et al., 2010; Rose & Cohen, 2010). However, participants in this study made very little mention of adverse social outcomes, given the social restrictions implemented during phase 1 and 2 of COVID-19. It might be concluded that young carers have experienced less “loss” as a result of the school closures and restrictions on social gatherings. Where young carers have previously reported feeling “different” from their peers

(Dearden & Becker, 1999; Rose & Cohen, 2010), they are now amongst the norm experiencing isolation. Not only could this reduce young carers’ feelings of otherness, but it may also provide

them more time to engage fully with their families and care receivers, while having to balance fewer responsibilities.

Furthermore, these findings suggest participants’ caregiving responsibilities are not necessarily problematic in and of themselves, but rather these responsibilities become problematic in the context of school, work, and social expectations. This is a noteworthy finding when considering the importance of young carer program development and provincial legislation. As a society, perhaps the question is not how do we eliminate young caregiving altogether, but how can we accommodate young carers and best support them in their roles?

Theme 1: Through the Family Systems Lens. Findings from our study suggest that

COVID-19 may have enhanced some familial relationships. This can be further explained using

Bowen’s concept of triangulation (Kerr & Bowen, 1988). The concept of triangulation suggests that the more family members there are to share the emotional burden within a family system, the better off a family is; particularly as it pertains to stress and anxiety (Kerr & Bowen, 1988).

Prior to COVID-19, participants engaged in caregiving duties independent of the rest of their family members. They often reflected on “spelling” each other off, in order to manage life’s expectations. However, in the wake of COVID-19, the caregiving burden was “spread out” more evenly amongst family members; reducing the overall tension experienced by participants within and amongst their families. Not only were care responsibilities shared, lightening the load on the young carer-care receiver relationships, but participants also reflected on how social changes during the pandemic (layoffs, school closures etc.) allowed families to engage in novel activities together such as eating dinner, watching TV and gardening, thus enhancing their overall relationships.

Theme 2: Caring during COVID-19 is Challenging

Caregiving during phase 1 and 2 of COVID-19 has brought with it a host of additional challenges for young carers. Participants specifically reflected on the difficulty in trying to balance their responsibilities, the constant expectation to provide care, and the common worries that they felt in the context of a global pandemic.

Finding Balance. Bolas and colleagues (2003) found that young carers often perceived their caregiving role as a “job” that they had little choice in. They commonly referenced the concept of “shift work” when explaining how they balanced school, work, and care responsibilities

(Bolas, et al., 2003). Participants in our study shared the difficulties in balancing their jobs

(school, caregiving etc.) during the initial phases of COVID-19, without the physical space provided by schools and workplaces, given work-from-home measures. Participants noted that without the physical separation from their care receiver, they had a difficult time prioritizing their own needs.

The burden of having to set boundaries with their care receiver led to additional stress for the participants. These findings are consistent with studies conducted in the U.K., wherein young carers reported an increased caregiver load and heightened stress associated with the lack of routine and separation from caregiving responsibilities during the onset of COVID-19 (Blake-

Holmes, 2020). Participants reinforced prior research (Bolas, et al., 2003), suggesting that caregiving duties felt “relentless” and overwhelming at times, given the constant obligation to provide care.

Lack of Respite. The intensity in young caregiving duties is influenced by a number of factors including assistance from other caregivers and the physical distance between caregivers and care receivers (Bleakney, 2014). In a review of the 2012 General Social Survey (GSS) on

Caregiving and Care Receiving, Bleakney (2014) reported that young carers living with their care receiver were more likely to identify with the term “primary caregiving” than those living in different households. As such, the hours of providing care for a family member in the same household increased exponentially, contributing to the overall intensity of caregiving duties.

Existing literature emphasizes the importance of opportunities for respite, on the wellbeing of young carers (Cluver, et al., 2012). Young carers have often associated the time out of the house as an “escape” from their caregiving duties, where they can be a “normal kid” and focus on themselves (Cluver, et al., 2012). As such, respite has been an important approach to reduce caregiver stress, allowing them the opportunity to “forget” about the worries they feel at home

(Blake-Holmes, 2020; Cluver, et al., 2012).

However, given the lockdown measures during phase 1 and 2 of COVID-19, caregivers were with their care receivers more consistently, having been cut off from many of their typical coping strategies such as spending time with friends, and/or going to school or work (Blake-Holmes,

2020). Participants in this study specifically emphasized the difficulty of having few breaks from their caregiving demands, given both the lack of external care as well as the fact that their care receiver knew they were always home. Therefore, decreased opportunities for respite resulted in exacerbated feelings of anxiety and exhaustion (Blake-Holmes, 2020).

Stress, Anxiety, and Uncertainty. Participants in this study recognized how caregiving during the early stages of COVID-19 inherently left them feeling anxious, sad, unhappy, and uncertain for the future. Participants indicated a heightened caregiver burden given the level of vulnerability of their care receiver. They felt responsible for their care receiver’s wellbeing, emphasizing how their actions could impact their care receivers’ health (e.g., leaving the home, bringing in germs, etc.). These sentiments were reiterated by participants in Zuvac-Grave’s

(2020) study, as young carers in the U.K. reflected on being so fearful of putting their care receiver at risk, they were unwilling to leave the home, for even their most basic needs.

The indirect impact of COVID-19 impacted young carers’ psychological wellbeing (Blake-

Holmes, 2020). Without the luxury of having choice to engage in caregiving duties or an abundance of resources for support, participants noted the difficulties of providing care during

COVID-19, as they shouldered increased pressures in all facets of life.

Theme 3: Support during COVID-19

Young carers remain relatively unstudied and unrecognized in Canada, compared to the U.K.,

Australia, and the United States (Charles, et al., 2012; Stamatopoulos, 2015, 2018). Given the lack of understanding about the young caregiving experience, young carers have reported wanting to “hide” their family circumstances from others (Stamatopoulos, 2015). This may also be based on the view that youth providing care for family members, contradict the Western conceptualization of what a normal childhood experience should entail (O’Dell, et al., 2010;

Smyth, et al., 2011).

As a result, widely accessible supports in Canada are lacking considerably, particularly in comparison to our global counterparts (Charles, et al., 2012; Stamatopoulos, 2015). Findings from this study recognize the need for greater young carer supports in Canada, especially given the current health crisis. Participants in this study shared their experiences with both informal and formal care in Ontario during phase 1 and 2 of the COVID-19 pandemic.

Informal Care and Public Policy. According to Stamatopoulos (2015), decisions about informal care are largely predicted by “macro-level policy changes” (p. 191) in both healthcare and social service domains. Our findings reinforce the role that public policy has on the level of informal care provided by families with young carers.

Participant experiences illuminated the impact that provincial policy had on their families, evidenced at each phase of the Reopening Framework. For example, participants reflected on the financial implications of COVID-19, given the workplace closures and subsequent layoffs that ensued during lockdown. They shared their struggles with engaging in online learning, given the mandated school closures, as well as the impact of not being able to visit care receivers in- hospital. Lastly, the participants reflected on the benefits of having more support at home during

Time 1 interviews. The shared responsibilities amongst informal caregivers led to enhanced wellbeing for the young carer, the care receiver and the whole family as a unit.

Time 2 interviews were conducted during phase 2 of the Reopening Framework.

Participant responses demonstrated the profound impact that provincial measures to reopen the economy had on both themselves as caregivers and on the functionality of their family unit. As parents re-entered the workforce, there were less informal supports in place to help participants in their roles as caregivers. As such, participants shared their feelings of heightened isolation in addition to their need to accommodate the increased caregiver burden. While these are just some examples of the ways that COVID-19 impacted informal care amongst family members, it is a clear indication of the direct correlation between public policy and the function of families with young carers.

Formal Support. My findings align with previous research that has identified gaps in the

Canadian care system as it pertains to supports for young carers and their families (Charles, et al., 2012; Stamatopoulos, 2015, 2018). Participant accounts indicated issues within the broader healthcare systems (e.g., unreliable and inconsistent care, lack of communication with medical professionals, frequent cancellations by PSWs, lack of PPE protocol etc.) as well as a lack of recognition of young caregiving specifically. It has been years since researchers suggested the

adaptation of the U.K.’s whole-family, child-centered approach to support young carers and their families (Charles, et al 2012; Stamatopoulos, 2015), and yet Canada seems to remain in its infancy of implementing such measures at a policy-level.

According to Stamatopoulos (2015), the biggest barrier to young carer support is the lack of public and professional awareness. The pandemic has only exacerbated the need for a whole- family, integrated approach to caregiving supports, recognizing all family members as a part of the care team. It is clear through Mandy’s excerpts that she was neither recognized by healthcare professionals as a caregiver, nor was her perspective valued in the care being provided to her father in-hospital during COVID-19. She reflected on the lack of communication from healthcare professionals, sharing that there were days when she did not know how her father was doing.

This inevitably resulted in Mandy feeling helpless and consumed with anxiety.

Upon her fathers’ transition home from the hospital, Mandy discussed the infrequent and unreliable care provided by personal support workers. She struggled to navigate how to help her father carry out his basic needs (e.g., getting out of bed, going to the bathroom, showering etc.) given his inability to do so independently. These findings demonstrate how the gaps in the healthcare system put both the young carer and the care receiver at risk.

This study reinforces the need to spread awareness about the impacts of formal and informal supports for families with young carers and the important role that young carers play within the family. It is crucial that policy makers recognize the impact of legislation on these often- marginalized groups of children and families, while accommodating for their needs in a safe and equitable manner.

Implications

Context Matters

Prior research has emphasized that the context of caregiving circumstances can impact young carer outcomes (Charles, et al., 2012; Kavanaugh, et al., 2016). It is important to consider factors such as the duration and intensity of caregiving responsibilities, the age and developmental stage of carers, the level of autonomy and recognition carers have in their role, and/or the family supports they receive (Charles, et al., 2012; Kavanaugh, et al., 2016). COVID-19 presents a new context that researchers, policy makers, and frontline workers must consider both in the development of new policies and programs, as well as when working with families and youth.

Many young carers have experienced changes in every domain of their lives (education, social, familial etc.) thus impacting the needs and supports they require at this time. While the participants in this study communicated the benefits of having more family members at home to share the responsibilities, we must consider how COVID-19 is impacting all families. For example, how are young carers of single-parent families and/or only-children coping? How are young carers impacted by the varying tasks they are required to carry out (e.g., impacts of cooking and cleaning duties versus emotional support for suicidal family members)? In order to best meet the needs of young carers, the context of caregiving must be considered; recognizing both the uniqueness of each family and the boundless complexity of care provided by young carers during the pandemic (Blake-Holmes, 2020; Kavanaugh, et al., 2016).

Raising Awareness

This study reinforces the need for greater awareness about Ontario’s young carers.

Participants shared their desire to be recognized and accommodated for in their academic settings (high school, university, and/or college). Given that school acts as a job for many youths

and is highly valued by society, it comes as no surprise that educational support is top of mind for young carers. The desire for young carers to want teacher recognition and support is common in existing literature (Eley, 2004). In fact, young carers have reported feeling angry and resentful, that in a profession centered around student wellbeing, teachers are not in tune with their caregiving circumstances (Eley, 2004).

Without the right support, young carers may fall short on achieving their academic and/or career aspirations, in turn impacting the trajectories of their lives. The first step to eradicating unintended educational and professional consequences of young caregiving is by raising awareness so that educators are in a position to provide accommodations and support where needed.

My findings also demonstrate that greater young carer awareness is vital within the healthcare system. Participants reflected on the difficulties of not being considered and/or communicated with regarding the health and wellbeing of their care receivers. Greater recognition and support from trained professionals may ensure that young carers are better equipped to support their care receivers, thus reducing harm. Raising awareness will allow young carers to be validated and supported in their important caregiving roles, in turn contributing to their overall wellbeing.

Policy

Ontario’s Reopening Framework highlighted how provincial policy dramatically impacts the wellbeing of families with young carers and their ability to function. These circumstances also emphasized the lack of resources available to support young carers and their families during times of transition.

COVID-19 has reinforced the need for young carer policies to be implemented at a provincial and federal level, ensuring youth and their families are receiving adequate support, including but

not limited to appropriate healthcare services, access to mental health services and financial supports. As mentioned in the literature review, young carers are currently left out of Canada’s caregiver policy; leaving this potentially at-risk group of youth with fewer resources, funding, and tools to accommodate their caregiving duties given the gaps in the healthcare system.

Program Development

Participants in this study recognized the benefits of programs such as the Powerhouse Project.

They specifically referenced their appreciation for individual counselling services, as well as the ability to connect with other young carers through support groups. However, participants also reflected on the issues with accessibility of such resources.

The findings from this study reinforce the need for programs to accommodate young carers’ needs on an individual basis, given the enormous range of caregiving experiences. For example,

Mandy’s needs as a 23-year-old caregiver, responsible for supporting her elderly father in his daily needs (e.g., hygiene, feeding, exercising, liaising with medical professionals etc.), varied greatly from 16-year-old Alice, who was trying to navigate how to support her sister’s mental wellbeing while concurrently carrying out her high school responsibilities. As such, programs and accommodations for young carers need to be targeted to the individual circumstances given the variation of needs for educational support, mental health services, respite, and health services to support their loved ones.

Program development is an important next step for the health and wellbeing of Ontario’s young carers. COVID-19 may be changing the experiences and supports required by young carers, therefore further research is required now more than ever. COVID-19 has also exacerbated the reliance on social media and virtual supports, thus young carer programs must broaden their online presence as a means of increasing accessibility. Findings from this study

suggest ongoing adjustment and new developments for young carer programs, given the new caregiving context youth will inevitably face post pandemic.

Limitations

There are some important limitations to this study that must be recognized. The sample size was small (n=4) and consisted of female-only carers. Recruitment was conducted shortly after the phase 1 lockdown, limiting my ability to reach participants via flyers on the University campus (e.g., residences, library, cafeteria etc.). I was also limited in my time frame for recruitment given that I wanted participants’ Time 1 and Time 2 interviews to roughly align, as to not sway the findings significantly based on variations in provincial response.

Secondly, interviews (via Zoom) were conducted during phase 1 and 2 of COVID-19 when participants were either provincially mandated (phase 1) or strongly encouraged (phase 2) to remain in their homes, avoiding any unnecessary exposure to others. This meant that in order to partake in the study, participants had to have access to a quiet space in their home to carry out

45-minute interviews, as well as access to a reliable internet source. Such requirements indicate that the participant pool may have been from middle-high SES, which should be noted when interpreting the findings.

Lastly, given the lockdown measures, there was potential for participants to lack privacy during interviews, which could have impacted their responses given the proximity to family members.

Future Research

This study has explored the impact that phase 1 and 2 of COVID-19 has had on Ontario’s young carers. However, the economic, social, and political fall-out from this pandemic remains

unknown. Therefore, ongoing research is required to investigate the long-term implications of

COVID-19 on young carers’ educational, professional, and personal trajectories.

Particular attention needs to be placed on young carers and their families in vulnerable living conditions. Research suggests that non-White caregivers, with lower incomes, and less education are more likely to report psychological suffering and poorer physical health (Barnett, 2015).

Unfortunately, COVID-19 has only highlighted the social inequalities present in Canada; demonstrated by the disproportionate number of racialized communities that have been impacted by the virus (Canadian Human Rights, 2020). Therefore, further researcher is required to explore the experiences of a larger, more diverse sample of young carers during COVID-19; investigating the role of race, culture, education, and socioeconomic status in caregiver perceptions and outcomes.

According to Joseph and colleagues (2019), more action-focused and participant-led research would allow for a broader understanding of young caregiving. It is particularly important that

“young carers’ voices are central to our understanding of the impact of providing care” during

COVID-19 (Blake-Holmes, 2020, p. 7). In order to inform public policy, research needs to provide nuanced analyses, outlining the complexity of individual caregiving circumstances, which is best captured through the young carer themselves (Kavanaugh, et al., 2016).

Chapter 6: Conclusion

In light of COVID-19, the media has focused largely the experiences of paid, formal caregivers, while informal caregivers (particularly young carers) have been largely excluded from the dialogue (Wilner, et al., 2020). This research project has provided a deeper understanding of young carers’ perceptions during phase 1 and 2 of COVID-19 in Ontario;

recognizing the benefits of having more time, the challenges of providing care during COVID-

19, and young carers’ unique experiences with receiving support during these times.

COVID-19 puts young carers at risk of significant social, economic, and educational implications affecting their wellbeing. The findings of this study recognize the positive impact of existing young carer organizations (e.g., Young Caregiver Association and the Ontario Caregiver

Organization) while emphasizing how this cohort of youth continue to fall through the cracks in both public policy and health and social services (Blake-Holmes, 2020). Findings have reinforced the importance of contextualizing young carers’ experiences in order to best meet the needs of this cohort of youth through continued research, as well as policy and program initiatives.

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Appendix A Recruitment Infographic

Appendix B Recruitment Email for Service Providers/Social Media Post information

**To be used in social media posts**

We’re recruiting people ages 16-25 who live in Ontario for new research on young peoples’ experiences of family caregiving during COVID-19. Please help us get the word out by passing this Infographic on to young carers and service providers in your networks. Thanks for your help!

**To be used in email correspondence** SUBJECT Heading: Young Caregivers and COVID-19 Dear (name of service provider),

I am (Name of student researcher), a Research Assistant working with Dr. Andrea Breen in the Department of Family Relations and Applied Nutrition at the University of Guelph. In collaboration with researchers at Brock University and Ontario Tech, we are conducting a study to explore the experiences of young people who are involved with family caregiving during the COVID-19 pandemic. We are recruiting people ages 16-25 who live in Ontario and who are currently caring for a family member who they live with. Young caregivers can be a hard-to- reach population and we are hoping that you can help us with recruitment.

We will be inviting participants to engage in Zoom (or phone) interviews and online questionnaires that focus on their experiences during the COVID-19 pandemic and their perceptions of the kinds of supports that would be helpful to them. These interviews and surveys will be spread out over a 6-month period and are designed to be quick and easy for young people to complete. Participants will receive an honorarium using their choice of a Shoppers Drug Mart or Presidents Choice online gift card for their participation in each of the interviews and surveys, with a possible total value of $130.

We know this is a stressful and difficult time for many people and agencies, therefore, we appreciate any help you might be able to provide. We would be grateful if you could pass this information (including the attached infographic) to young people who are involved in family caregiving within your agency or other service providers in your networks who may be able to help with recruitment. If you have any questions about this research, please feel free to reach out to me or Dr. Andrea Breen at [email protected].

Thank you in advance for your support. Sincerely,

Stephanie Martin Department of Family Relations and Applied Nutrition University of Guelph This project has been reviewed by the Research Ethics Board for compliance with federal guidelines for research involving human participants (REB#20-04-001), Brock (#), OUIT (#), UBC (#)

Appendix C Participant Screening Script

Initial Telephone Screen:

These questions will be used to screen participants to ensure that they meet eligibility. The questions will be asked via a phone call or a text with the participant.

How old are you? Do you live in Ontario? Do you provide care for one or more family members? For whom do you provide care? What is the reason your family member requires care? What type of care do you provide?

Appendix D Consent Form

Young People Providing Care during the COVID-19 Pandemic

Research Team: Dr. Andrea Breen (University of Guelph), Dr. Heather Chalmers (Brock University), Dr. Vivian Stamatopoulos (Ontario Tech University), Dr. Grant Charles (University of British Columbia) Student Researchers: Yana Lakman, Nicole Wylie-Curia, Stephanie Martin, Lisa Whittingham Main Contact Information: Dr. Andrea Breen, Department of Family Relations and Applied Nutrition, University of Guelph, [email protected]

INVITATION You have been invited to participate in a research study. The Young People Providing Care during the COVID-19 Pandemic study is a collaboration between researchers at the University of Guelph, Brock University, University of British Columbia, and Ontario Tech University. The aim is to explore the experiences of young people who are involved with family caregiving during the COVID-19 pandemic. This information letter is to help you decide if you want to be involved in the project.

Who is eligible? Young people ages 16-25 who live in Ontario and provide unpaid care for one or more family members. Participants may provide care for a parent, sibling, grandparent, or another family member who is not their child. Caregiving can mean many different things. Examples of caregiving responsibilities include tasks such as cooking, cleaning, mobility assistance, personal care (e.g. bathing, dressing) liaising with service professionals and doctors, and assisting with translation. All participants must be able to communicate in English. What is required? There are 3 parts to this study. While we are hoping that you will be involved in all parts, it is important to know that you are free to participate in as much or as little of this study as you would like. Here are the details of what will be involved: Part 1: Online interview with a researcher and daily diary entries You will be invited to take part in an initial interview with a research assistant using Zoom or over the phone. You will be asked questions about your experiences caregiving during the COVID-19 pandemic. If Zoom is challenging for you because of challenges accessing

the internet, privacy concerns, or other reasons, you are welcome to participate in the interview over the phone. This interview should last approximately 45 minutes, and you will receive a $20 Shoppers Drug Mart or Presidents Choice gift card to thank you for your participation. You will be invited to choose which gift card you receive. Following the interview, you will be asked to complete a daily diary online for a week (seven days). You will receive a daily reminder via text/email with a direct link to an online survey. This should take you about 15 minutes each day and you will receive a $5 gift card (Shoppers Drug Mart or Presidents Choice) per diary entry that you complete (for a total of $35 for completing each daily entry for the week).

Part 2: Online interview with a researcher and daily diary entries Six weeks after your final diary submission, you will be asked to take part in a second interview, that should last for approximately 45 minutes. The purpose of this interview is to see if there have been changes in your caregiving experiences. You will be asked about changes in your duties and daily tasks, your concerns and hopes related to caregiving, challenges you are facing, things that are going well, and the kinds of supports that would be helpful to you. You will receive a $20 gift card to Shoppers Drug Mart or Presidents Choice (your choice) for this interview. After the second interview, you will be asked to engage in another week of daily online diaries. These should take approximately 15 minutes each day. You will be emailed/texted daily reminders and links to an online questionnaire. Again, you will receive a $5 gift card (Shoppers Drug Mart or Presidents Choice) for each diary entry (up to $35 for completing each daily entry for the week).

Part 3: Final interview wrap up About 6 months following the second week of diary entries, you will be asked to engage in a final interview. This interview will focus on changes in your caregiving experience related to the COVID-19 pandemic, as well as how you are doing at the moment and your concerns and hopes for the future. This final interview should be approximately 45 minutes and will be done via Zoom or on the telephone. You will again receive a $20 gift card to Shoppers Drug Mart or Presidents Choice for your participation. Please note that all interviews will be recorded using a password protected and encrypted recording device.

POTENTIAL BENEFITS AND RISKS You may find benefit in participating in this study since it will provide an opportunity for you to reflect on and share your experiences. You may find it helpful to reflect on the challenges you face as well as the things that are going well. This research will generate insights that will help researchers and community agencies develop better supports for young caregivers. We will also be providing you with information about community resources that you may not be aware of. These resources will be provided formally during the diary component of the study, but you are not required to consent to participate in this study to receive the list of community resources that are designed for young caregivers. Should you be interested in a list of these resources and you decide not to participate, please feel free to contact the research assistants, Stephanie Martin ([email protected]) or Nicole Wylie-Curia ([email protected]) and we will be happy to email the list to you.

There may be risks associated with participating in research. You may feel some discomfort or find it challenging when you think and talk about your experiences with the interviewer or fill out the daily online diary cards. However, these risks are not expected to be any different than what you might experience as part of your everyday experiences in your family life. You will be asked to answer all of the questions, but it up to you to choose which questions you want to answer. You are always free to skip answering any question that makes you uncomfortable and to withdraw from the study at any time.

CONFIDENTIALITY After completing this consent form, you will be allowed to choose a pseudonym that you will use for the study. You are encouraged to make a note of your chosen pseudonym and keep it in a secure and private place. However, should you forget your chosen pseudonym at any time throughout this project, you will be reminded of it. The lead researcher (Dr. Breen) will retain your name and text/email addresses to send you the incentive for your participation and will need to maintain a record of the incentives provided. The record of incentives will be de-identified before being shared with others, such as financial services at the University of Guelph. Your contact information will be kept on a password protected and encrypted computer and will be kept separately from your data. All interviews will be recorded using a password protected and encrypted voice recorder. Please note that we may be sharing audio files with members of our research team for purposes of transcription. If we do so, we will use email encryption to transfer your data securely. In written reports of this research and oral presentations, data from the conversations and interviews, including direct quotes, will be used but data will be anonymized using the pseudonym that you choose, and no real names will be connected to your data. We will also remove other information that could be used to identify you, such as other peoples’ names, specific locations, and/or schools. All audio will be transferred to a secure, encrypted computer. Data collected during this study will be stored on password-protected computers. Anonymized data will be kept for 5 years. The lead researcher (Dr. Andrea Breen) will keep records of participants’ names text numbers and/or email addresses on a secure, password-encrypted computer until the end of the study and then destroyed/erased. The study will be considered complete once we have emailed summaries of our findings to participants who have indicated their interest in receiving this information Should you agree to have email or text reminders sent to you during the diary component of the study, your contact information will also be kept by the research assistant who will be sending these reminders for the duration of the study. During this research project, we may invite you to indicate whether you are interested in participating in future research. Should you agree to be contacted about future research opportunities, your contact information will be kept longer with your permission and it will be kept separately from your data. If you are not interested in participating in additional research or there are no subsequent phases of research then identifying information will be erased/destroyed after the completion of this research study. Please note that for the interviews that take place via the internet, complete confidentiality cannot be guaranteed. Audio recordings of the interviews will be done using a password protected and encrypted voice recorder and NOT the Zoom record feature. You will be given a password to join the zoom meeting. We suggest you do not use Zoom to record the interview, as

we cannot guarantee the confidentiality of you do so. We also recommend that participants complete the interview in a private location and on a secure network. Should this be difficult for you to do using Zoom, we can arrange for a phone call instead.

LEGALLY REQUIRED DISCLOSURE. We will follow the protocols described above to ensure the privacy of your identified research-related records. However, absolute confidentiality of your identity cannot be guaranteed as we may have to disclose certain information under certain laws. For example, researchers have a duty to report child abuse and neglect (and suspected child abuse and neglect) under Canadian child welfare laws. If anyone from the research team has reason to suspect a child is in danger, the team member will need to breach the participant's confidentiality to report this to the Research Ethics Boards and the local Children’s Aid Society. Please also note that confidentiality cannot be guaranteed while data are in transit over the internet.

VOLUNTARY PARTICIPATION Participation in this study is voluntary. You may choose not to answer any questions that you do not wish to answer. You may withdraw fully or partially from the research at any time. Partial withdrawal may include choosing not to participate in particular interviews or answering certain questions, but choosing to have some of your previous responses included in the larger study. Full withdrawal would involve asking for all of your data to be removed from the study. Regardless of whether or not you participate in all of the study’s phases, you will still receive the incentive for the tasks you have completed. For example, if you decide to withdraw during the first interview, you will still receive a $20 gift card for that component of the study. We will review the information about confidentiality and voluntary participation again briefly at each stage of the interview process. You will have opportunities to ask questions. We aim to ensure that you fully understand how your information will be used and that you are comfortable with your participation. Please do not hesitate to ask the interviewer or Andrea Breen (the lead researcher) any questions you have along the way. Please note that while you may be able to withdraw from the study, there are limitations to the timeframe in which full withdrawal is possible. Because we will be working to analyze the data and expect to publish the results of this study, the full withdrawal must occur no later than December 1, 2020.

PUBLICATION OF RESULTS This research will be used for graduate students’ masters theses. The results of this study will also be published in professional journals and presented at conferences. Feedback about the results of this study will be emailed to you if you choose to provide your email address. If you have any questions at any point during the study or after the study, please contact Dr. Andrea Breen by phone at 519-824-4120 x. 53967 or via email [email protected].

CONTACT INFORMATION AND ETHICS CLEARANCE If you have any questions about this study or require further information, please contact the Principal Investigator, Dr. Andrea Breen, using the contact information provided above. This study has been funded by an Insight Development Grant from the Social Sciences and Humanities Research Council of Canada. This project has been reviewed by the Research Ethics Board at the University of Guelph for compliance with federal guidelines for research involving

human participants. If you have questions regarding your rights and welfare as a research participant in this study (REB #20-04-001), please contact Manager, Research Ethics; University of Guelph; [email protected]; (519) 824-4120 (ext. 56606). Please retain the provided copy of this form for your records. Thank you for your assistance in this project.

PARTICIPANT CONSENT We will be asking you to provide consent verbally at the beginning of each interview by asking you to confirm the following: “I agree to participate in this study described above. I have made this decision based on the information I have read in the Information-Consent Letter. I have had the opportunity to receive any additional details I wanted about the study and understand that I may ask questions in the future.” At the beginning of the interview, we will also be asking you to confirm whether you consent to have email and/or text reminders sent to you for the diary component of the study and whether you would like to have a copy of the summary of research findings sent to you.

Appendix E Interview Script for Young Carers INTERVIEW PROTOCOL

Reminder note to Researchers/REB: The interview questions below serve as a guide for the interviews, but please note that we may need to adapt these as we go to reflect the current situation with the pandemic as well as participants’ circumstances: If the nature of the questions being asked evolve, REB will be contacted in advance for an amendment.

PARTICIPANT CONSENT Consent is ongoing throughout this project. At each interview ensure that participants have a copy of the consent document. Review the details of their involvement, including their right to withdraw before beginning each interview. The following should be recorded:

Now that you have had a chance to review the consent form and ask questions, we would now like to acquire verbal consent to move ahead with the interview process. Do you agree to participate in this study described? Have you made this decision based on the information I have read in the Information-Consent Letter? Have you had the opportunity to receive any additional details you wanted about the study and understand that you may ask questions in the future?” Thank you.

We would also like to confirm that you agree to have email and/or text reminders sent to you for the diary component of the study. Do you agree?

Thank you. We will be reviewing the consent procedures and providing you with an opportunity to ask questions and confirm that you agree to participate at each stage of the interviews. And we would like to remind you that you’re free to skip any questions you don’t want to answer at any time.

Interview Question:

When did you first learn of the COVID-19 virus? (Interview 1)

How serious do you think it is? (Interview 2)

How has COVID-19 impacted you socially, physically, emotionally? (Prompts: personal impact, family impact) (Interview 1, 2 & 3)

What does a typical day look like to you right now? (Interview 1, 2 & 3) How has this changed from what you were doing before?

What is your greatest concern at this time? (Interview 1, 2 & 3)

What supports are you getting or not getting, how has that changed? (Interview 1, 2 & 3) (Prompts – formal supports (e.g., agency); informal (e.g., other family members)

What do you think the future looks like for you? (Interview 1, 2 & 3)

What are your fears for you or your care receiver? (Interview 1, 2 & 3)

Of the fears you have, what frightens you the most? (Interview 1, 2 & 3)

How have your caregiving responsibilities changed? (Interview 1, 2 & 3)

What are your hopes for your care receiver? (Interview 1, 2 & 3)

What are your hopes for yourself over the next few months? (Interview 1, 2 & 3)

How has your relationship with your care receiver changed with COVID-19 (prompts: since you first found out about the virus, since the lockdown)? (Interview 1, 2 & 3)

How have other family relationships been impacted by this situation? (Interview 1, 2 & 3)

What do you think the long-term ramifications will be for you? (Prompts: of the pandemic; of your caregiving during this time) (Interview 1, 2 & 3)

What is something that you’ve learned through this experience that you’d like to share with others? (Interview 1, 2 & 3)

What brings you joy right now? (Interview 1, 2 & 3)

If you could share advice with other young people who are providing care, what would you tell them? (Interview 1, 2 & 3)

What would you want other people (teachers, service providers, community members, the government) to understand about your experience? (Interview 1, 2 & 3)

What kinds of supports would you like to see put in place for young caregivers? (Interview 1, 2 & 3) (Prompts: During the pandemic specifically; generally—beyond/after the pandemic) Is there anything else you wish to say? (Interview 1, 2 & 3)

Interview 3

Thank you very much for your participation. We may be conducting more research on family caregiving in the future. At this stage we are just inviting people to confirm whether or not they would like to be contacted in the future to be invited to participate. Should you agree to be contacted about future research opportunities, your contact information will be kept longer with your permission and it will be kept separately from your data. If you are not interested in participating in additional research or there are no subsequent phases of research then identifying information will be erased/destroyed after the completion of this research study.

Appendix F Qualtrics Daily Diary Entry Questions for Young Carers

Young Carers and the Covid-19 Pandemic

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Q14 What is your participant pseudonym?

______

Q1 For each of the following, please rate how you feel on a scale of 1 to 10. Not at all Extremely

0 1 2 3 4 5 6 7 8 9 10

How happy are you feeling today? ()

How worried are you feeling today? ()

How fearful are you feeling today? ()

Q2 On a scale of 1-10, how is your overall mental health today. I'm really struggling I feel great with my mental health

0 1 2 3 4 5 6 7 8 9 10

Mental health ()

Q3 How was your day today? Please tell us a little about your day.

______

Q4 What was challenging for you today? Please describe one or more challenges you faced.

______

Q5 What went well for you to day? Please describe one or more of the things that went well.

______

Q6 Did you reach out to anyone for support today? If so, who did you reach out to? How did you connect? (e.g. by phone, online, etc.)

______

Q7 Was today better, worse or about the same as other days. If it got better or worse than other days, what changed?

______

Q9 How is the person who you provide care for doing today?

______

Q10 What caregiving tasks did you engage in today?

▢ bathing/dressing (1)

▢ administering medication (2)

▢ feeding (3)

▢ keeping company (4)

▢ household chores (cleaning, cooking, etc.) (5)

▢ language translation (6)

▢ transportation (7)

▢ connecting with health care professionals (8)

▢ Other (9)

Q12 If you selected other, please describe your caregiving tasks for today.

______

Q11 How many hours did you spend caregiving today?

o Less than 1 (1) o 1-2 (2) o 3-4 (3) o 5-6 (4) o 7-8 (5) o 9+ (6)

Q13 What kind of help or support do you wish you had today?

______

Q15 Please write down something that you are grateful for today.

______

Q16 What is something that gave you strength today?

______

Q8 Thank you very much for completing the daily diary for today. Here are some links to resources designed to support young carers:

The Powerhouse Project: powerhouseproject.ca Carers Canada: carercanada.ca The Kids Help Phone: kidshelpphone.ca The Change Foundation: [email protected] Young Carers Program (Hospice Canada): www.ycptoronto.com Alzheimer Society Ontario: https://alzheimer.ca/en/on/Living-with-dementia/Caring-for- someone/Finding-help/Resources-for-young-carers If you need help connecting to resources please contact Nicole Wylie ([email protected]) or Stephanie Martin ([email protected]).

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