Strengths and limitations of this study

This study was strengthened using multiple research methods (ie, interviews, focus groups and co-design), and a simple yet engaging design thinking approach, ‘Idea on a page’.

The methodology was thoroughly described, supported by an expert in co-design methods and a diverse team of researchers knowledgeable in young carers, care transitions and family and sibling caregiving.

Our sample was small and geographically homogeneous, limiting the transferability of findings, including to those from rural communities.

Introduction

One-fourth of Canadians over 20 live with a chronic condition,1 with this trend increasing toward more serious health conditions worldwide.2 3 Serious illness usually negatively impacts a person’s daily function or quality of life, necessitating support from formal health services and family caregivers.4 Paid caregivers receive compensation (ie, money) for providing care and usually are health professionals with expertise in care delivery.5 The term caregiver is often used more broadly to describe those who give care.6 Unpaid caregivers are family members, friends or neighbours who provide care voluntarily.6 While one-quarter of older adults identify as unpaid caregivers,7 younger people also provide caring responsibilities. They are identified as young carers (YCs) in the caregiving literature.8 9 For the purpose of the current research, YCs are identified as children and youth under the age of 25 who provide substantial and consistent unpaid care or support to another family member with a chronic or acute physical or mental health condition, disability or difficulties with substance use.9 10 The reported prevalence of YC internationally varies from 3.2% to 22%.11 12 The wide variation in prevalence is mainly related to differences in YC definitions and associated age ranges, recruitment methods and identification criteria.13 The incidence of YCs is 28% of Canadian youth between 15 and 24 years of age.9

Care activities provided by YCs include a variety of functions classified as household chores, nursing care, child care, emotional support and financial assistance.14 Notably, positive impacts of caring among YCs include increased confidence, empathy and maturity.15 16 However, without adequate informal support (eg, family members to help provide care) and/or formal support (eg, home and community care, respite services), caregiving responsibilities have been associated with poorer mental and physical health outcomes than their non-caregiving peers,17 18 and more recently, exacerbated by the COVID-19 pandemic.19 Their caregiving role often consists of regular and significant caring tasks that exceed what would be generally associated with an adult caregiver.10 20 Although YCs report being tasked with medication administration,21 organising and attending medical appointments,9 and often the intimate care22 of their family member, their interactions with the healthcare system are infrequently mentioned.23 Family caregivers are described as central to supporting quality care, given their intimate knowledge of the patient and their unique family situation and willingness to be involved in care planning activities.24

Despite drawing attention to the existence of YCs in Canada,9 25 26 their current invisibility continues to be problematic as YCs contend with being both providers and receivers of care.27 Historically, health and social care professionals have lacked recognition of YCs’ role,28 and research have shown that YCs feel ‘uninformed’, ‘excluded’ and ‘dismissed’ by healthcare professionals.18 29 This paper addresses a gap our previous meta-synthesis identified in understanding how YCs interact with healthcare systems in their caring role.23 We provide an interpretation of the lived experiences of YCs’ interactions with the healthcare system in their caring role with the aim to translate their voices into greater awareness of their impact and to inform resource development.

Objectives

The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role.

MethodsDesign

This mixed-methods qualitative study included two phases to address the study aims: (1) semi-structured interviews and focus groups for confirming and expanding earlier findings23 and (2) co-design through a generative research approach.30

Recruitment and participants

We recruited YCs from across Canada using a multipronged approach. First, program-based recruitment enabled YCs to be identified through established organisations, advocacy groups and various youth and caregiving support programmes that agreed to assist our recruitment efforts. Efforts spanned referring YC to the study material or distributing the flyer through their communication channels. An approved institutional Twitter account also assisted with posting a call for participants with the study flyer. We screened potential participants aged 16–25 years who had current or previous experience providing a minimum of 5 hours of unpaid care per week (on average) for a minimum of 1 year. Care was defined for this study as ‘actions carried out by the young person in support of an acutely or chronically ill family member’. These tasks included but were not limited to attending appointments, administering medication, providing physical care and emotional support, translating and parenting (ie, functioning as a parent to a sibling). Last, we leveraged personal networks and used snowball sampling so initial participants could share the recruitment information with other carers from their networks. Before participating in the study, each participant received a copy of the informed consent form through email. Once reviewed independently and then with the researcher for questions, participants and the researcher electronically signed the consent form.

Data collectionPhase 1: qualitative, descriptive (confirming and expanding)

We conducted a qualitative, descriptive study gathering first-hand accounts of Canadian YCs to address the first study aim.31 We determined a combination of semi-structured interviews and focus groups to be the most appropriate form of data collection, given their capacity to gain a deep understanding of a phenomenon and effective use among YCs.32 33 To encourage participation, YCs were given the choice of an interview or a focus group since the former might be more positively perceived,28 and the latter could be construed as minimising issues of power between the researcher and younger participants.14 Therefore, a series of virtual focus groups and individual interviews were conducted with YCs,28 who had no prior relationship with the researchers. The interview questions were divided by those that initially asked about their experiences being a YC (ie, ‘How would you describe the beginning stages of becoming a young carer?’) followed by questions targeting their health system interactions (ie, ‘Thinking about a time when your family member needed help provided by the healthcare system, what was your role in that situation?’) Strategies used during the focus groups to optimise participants’ comfort included starting the conversation with a warm welcome, using open-ended questions and ensuring that all participants were heard by asking to hear from everyone and for different experiences. Interviews occurred between the researcher (MS) and participant, while focus groups were facilitated by the senior author and clinician scientist (KO) and a lead researcher (MS) with participants. The interviewers were female, had a PhD candidacy and an MD, respectively, and considered themselves skilled in qualitative research. During the consent process, YCs learnt about the professional background of the interviewers. The interview guide was based on our previous work23 and was refined following each subsequent focus group/interview when new insights emerged (online supplemental file 1). Audio recordings were transcribed verbatim and reviewed for accuracy. All participants completed the demographic survey and were offered the opportunity to participate in phase 2 of the study. The demographic survey included questions about the participant’s gender, age, relationship with the care recipient, number of years caring for the family member, highest level of education, employment status (if applicable), type of caring activities provided, and access to services and supports.

Phase 2: exploratory co-design

The authors defined co-design in health services as the active collaboration between stakeholders in designing solutions to a prespecified problem.34 A ‘generative co-design framework for healthcare innovation’ guided the co-design approach since its tenant is to incorporate the views and experiences of end users in innovative design.35 The 2-hour virtual co-design session convened by YC participants, partnering caregiver organisations from three Canadian provinces (Ontario, Alberta and Quebec) and research team members to address the second study aim of identifying types of support YC recognise as potentially helpful to their caring role. A summary of the YCs’ healthcare interactions and associated ‘pain points,’ or barriers experienced by participants, from phase 1 was first presented to the participants to prepare for the co-design activity. This preparatory step enabled individuals to identify and prioritise service gaps and needs as perceived by YCs and the organisational representatives.

The idea generation activity followed, which entailed a facilitator sharing their computer screen of the ‘Idea on a Page’ template (see figure 1) and simultaneously completing the activity in real time. This particular tool comes from the design thinking literature36 and has been used by a study author (SH-G) in different contexts.37 The template consisted of four statements arranged in a table format: (1) your idea in fewer than five words, (2) describe or draw your idea, (3) developing the idea and (4) delivering the idea. During that activity, YCs with organisation and research members brainstormed ideas to improve the involvement of YCs during interactions with the healthcare system in their caregiving role. This data collection strategy served to empower the YC participants through their listening to the voices of YCs and encouraging their ideas for appropriate and responsive support. Phases 1 and 2 were digitally recorded and transcribed verbatim.

Figure 1

‘Idea on a Page’ template. The proposed ideas by the co-design participants are described in the Idea on a Page template. The template consists of the presented ideas, a description, and what is needed to develop and deliver the ideas.

Analysis

A thematic analysis was used to analyse transcripts from both phases.38 Two researchers with qualitative research experience (MS and IC) independently reviewed and inductively double open-coded three transcripts. Through discussion, the coders developed a coding framework applied to the remaining interview, focus group and workshop transcripts. During analytical meetings, the coders reviewed the individual codes and associated narratives using Microsoft Word, identifying similarities between the coded transcripts. Using an iterative process until consensus was reached on the code book, the coders combined codes considered to fit well together to form the core themes.38 Participants were not provided transcripts for comment; however, YC participants who joined in phase 2 were provided with the preliminary findings from the descriptive study.

Rigour

Strategies to increase the quality of our research process included four domains of trustworthiness39 40: (1) credibility techniques through prolonged engagement with participants across two phases, assessment of the researcher’s own influence on the research process known as reflexivity, and member checking by sharing interpretations with participants during the co-design session; (2) transferability by offering detailed quotes in the findings; (3) dependability by following an analytical plan, having multiple coders and triangulation of research methods; and (4) trustworthiness by using a team of expert researchers, caregiving organisations and YCs that discussed the data through reflexive responses to emerging insights.

Patient and public involvement statement

None.

Results

Fourteen (n=14) YC participants consented between March 2022 and August 2022. Two authors (MS, KO) facilitated either a focus group or an interview with eight individuals (n=8) that lasted between 42 and 80 min. Each of the two focus groups involved two participants, and the remaining four participated in an individual interview based on their preference. The participants in the focus groups and interviews were all distinct. The six remaining individuals who consented to participate did not attend the scheduled focus group/interview and were withdrawn from the study. From the original group of eight participants in phase 1, a subset of four YCs took part in phase 2. The characteristics of the YC participants are found in table 1. Four representatives from the partnering caregiver organisations also attended the co-design event, in addition to four research team members (MS, KO, SH-G, AT), making a total of 12 participants.

Table 1

Characteristics of the YC participants

Phase 1: qualitative descriptive study

YCs described their perceptions of interactions with the healthcare system while caring for a family member. In doing so, three main themes with subthemes emerged: (1) navigating the YC role within the healthcare system, (2) being kept out of the loop, and (3) normalising their own transition to caregiving. See table 2 for themes and sub-themes, corresponding codes and example quotes.

Table 2

Themes and sub-themes, corresponding codes and example quotes

Theme 1: navigating the YC role within the healthcare system

Under this theme, participants described themselves as staying vigilant, ‘pushing’ for quality care, making hard decisions and navigating the healthcare system independently. In several cases, a care transition was emphasised as a time when extra care by the YC was needed, especially when multiple patient movements between care providers and care settings complicated the transition.

Staying vigilant

Most YCs described vigilance over their family member at pivotal healthcare interactions. Their vigilance is noted in their physical presence and watchfulness over their family member’s acute medical condition and stays in the hospital setting. By remaining present and sometimes demanding that they remain present, the YCs often made themselves part of the care team and provided care during the hospitalisations. For example, two YCs described how their caregiving role persisted while in the hospital:

To be honest, I started to suction him [parent] and help with the changes and, you know, ask the nurses how he’s regularly doing, things like that. (P004)

During COVID-19 hospital caregiver restrictions, one YC remained vigilant by making numerous calls to the intensive care unit to inquire about their parent’s clinical status,

I think they thought I was annoying because I called maybe five times a day when she first got to the ICU. They're like, you're bothering them, but I'm bothering you? You don't tell me what’s going on! Like, how can you expect me not to be concerned? I don't care if nothing’s changed, but I'd rather be told nothing’s changed. (P009)

‘Pushing’ for quality care

The vigilance enacted by YCs was often leveraged to advocate on behalf of their family member. ‘Pushing’ for better or more services took the form of directly asking formal care providers for assistance with the care of their family members. For one YC, they reported writing letters and sending emails to their family member’s care providers, ‘Yeah, I had to write them letters and call them and email them and be like, stop neglecting my mom’ (P009). Notably, the YCs acquired more confidence in their advocacy to seek greater assistance over time. The following quote reinforces the nature of time with advocating for a family member:

So, I feel like now I'm in a better place because I'm used to it now, and I feel like we have a routine, so it has become easier in a way, and I feel like because I've had to advocate so much over the years for him that we've had to, really acquire a lot of support. (P004)

Making hard decisions

Despite their young age, several YCs made life-and-death decisions for an unwell family member or had considered needing to make serious future life decisions, ‘I think of housing and ODSP (finances)…I would love to buy him his little house, and I live next door…but those things aren’t realistic’ (P014). Two YCs had to consent to life-saving medical procedures and end-of-life care without consulting another next of kin. One YC consented to a high-risk surgery with limited decision-making support after receiving news of less than a 3-month survival time for their parent:

I asked the surgeons what would you do if it was you? They said I can't tell you this, you have to make it yourself. They literally could not tell me. I was like, I turned 18 two days ago. So, it was ridiculous. I still thought their attitude was inadequate, you know? You're dealing with a terminal patient and a caregiver being just 18. (P013)

Theme 2: being kept out of the loop

Theme two relates to the YCs’ experience with and perception of interactions with healthcare providers where they were uninformed about their family member’s situation and turned to other sources for medical information, or their role going unacknowledged, even by themselves.

Being brushed off and finding information on my own

YC mentioned their experience navigating the healthcare system as ‘life changing’ (P004) and challenging, for example, ‘trying to find (private) nurses on our own’ (P012). Seeking appropriate resources or arranging appointments and services for their family members was salient for several YCs in the hospital post-discharge period. Despite their pivotal role, YCs expressed the feeling of not being taken seriously when requesting information about their family member. For one YC, they expressed,

The nurses, physio, SLP [speech language pathologist], and the general team met her. They weren't that involved with me, they were more so telling her what was happening. Because I think that they can't tell me too much because of my age. (P009)

One YC reported that their frustrations with navigation outweighed the physical caregiving tasks in the following quote:

The hardest part about being a caregiver is not so much the caregiving aspect. I can take care of my dad, no problem. But I think for me, it’s been trying to find resources for both him and me. (P004)

One YC mitigated the lack of information by the care team by accessing the online patient portal, ‘I found most of that online through the portal. I knew everything that was going on because I was reading all the reports anyways, even if they weren't telling me these things’ (P009). Others desired information about their family member’s condition and relied on the internet and ‘Google’ for additional resources: ‘I do my own research and stuff. It would be helpful to have a lot more information in one place and maybe, like age-appropriate, things you can understand better instead of scouring online’ (P012).

No one ever asked me how I was doing

Several of the YCs described examples of not being asked about their well-being, which further reinforced feelings of not being acknowledged by healthcare professionals: ‘The only thing that social worker did was call the family friend I was staying with and ask, 'Is she actually staying with you?’ basically. And sent a letter to me to give to my school’ (P009). This same young person did not recognise themselves as a caregiver since their mother had sufficiently recovered to manage her own medical appointments. Another YC pointed out the importance of supporting the caregiver in the following quote:

Yeah, I feel like I wish a healthcare provider just asked me how I'm doing or if there’s anything that I need for my mental health or, you know, just overall well-being. I think supporting caregivers is just as important as providing care to the patient. (P004)

Theme 3: normalising the transition into caregiving

The final theme speaks to YCs’ personal transition to caregiving parallel to the family member’s care transition. Evident across the YC experience is their normalisation of the caregiving experience as they adjust to the role and their changing responsibilities.

Taking on healthcare responsibilities

The YCs candidly described adjusting to and taking on complicated care tasks for a family member at home and in care settings (eg, hospital and rehab hospital, hospice). These activities spanned suctioning, performing daily wound dressings, administrating complex medication regimens, assisting with toileting and personal care, positioning in bed, preparing meals and doing household chores. For one YC, in addition to attending high school during the day, their day started and ended with assisting their mother: ‘I get dressed, then I help her get dressed, as she’s getting dressed, I turn on the tea kettle and feed the dog. Then when she’s done getting dressed, I walk her to the washroom. I make breakfast. Then after she’s done in the washroom, I check her blood pressure, finish breakfast, then as she’s eating breakfast and taking her medication, I walk the dog’ (P009). Only one YC mentioned receiving training in suctioning from a respiratory therapist ‘just in case’ (P009).

Balancing the role with other priorities—a ‘Juggling act’

The juggling act was apparent as YCs often managed caregiving with schooling and, for a few, employment. With the balancing came prioritising their family members’ needs over opportunities like working at a summer camp, extra-curricular activities and even friendships ‘I don't have friends. I only have my family. I talk to my family. I talk to my mom, talk to my brother. So that’s all’ (P002). When caregiving jeopardised academics, one YC tried to reduce their workload at school to manage caring for their mother while completing grade 12.

These YCs also made difficult personal decisions, like living at home or moving away to school. They deeply considered the affected family member in that decision process, weighing the potential for displacing additional responsibilities on other family members and even considering how the distance from home would affect their visits.

Managing the rollercoaster of caregiving

The caregiver experience for many of the YCs catalysed a series of emotions, physical exhaustion and burnout. Without a strong support network, they had to manage their emotions independently. As the following narrative indicates, in times of sadness and uncertainty, the YC becomes the consoler when they also want the same support:

This family friend called while I was eating, and she just started crying on the phone, and I was like, can I help you? She told me can you be strong for your grandparents? Like, I mean, there’s got to be a million words you could say. And you chose the worst ones to tell me at that moment, like, what the hell do you think I was doing in the last one and half years? I became a comforter in a moment in which I needed to be comforted. (P013)

Despite the roller coaster experience, most YCs reported the benefits of being a caregiver in learning more about themselves, valuing the time spent with their ill family member and gaining a resilient outlook. Their experience also informed career aspirations to pursue medicine or a helping career path.

Phase 2: exploratory co-design

Two gaps were prioritised during the co-design phase. First, YC highlighted the need for recognition of their caregiver role by the healthcare system. They felt excluded from critical medical discussions and not formally recognised as their family member’s caregivers despite their presence and active role in the hospital setting or appointments with health professionals. The YCs also noted a lack of information, communication and support from healthcare providers that meet the specific needs of YCs. There was a significant desire for information and resources about their family member’s condition, what to expect and tailored communication on what it means to be a YC. Additional information and support were particularly lacking in navigating the healthcare system and available support. Care transition points were problematic and a key area for interventions related to both prioritised gaps. The co-design activity, ‘Idea on a page,’ led to the generation of potential solutions to address these gaps (figure 1).

YC-focused support

Participants identified several solutions, including a family peer support workers programme or ‘peer navigator’ (P013) for YCs. One YC offered the idea of a ‘designated person that works in hospitals, like a family caregiver support role tasked with helping caregivers manage or help with discharge…’ (P004). A hotline tailored to the needs of YCs was seen as a potential way of sharing caregiving information, communication and support in navigating the healthcare system. At a broader level, participants recommended access to consistent and quality home and community care, including available respite services for YCs, and community asset mapping of the champions that can act as pillars by contributing awareness and help planning and service provision.

Raising awareness and building capacity in the healthcare system

The group’s most dominant recommendation was raising awareness about YCs as an important catalyst for recognising the YC’s role within the healthcare system and in the general population (related to the media idea below). They recommended solutions that included training healthcare providers to identify better and acknowledge YCs, and building awareness in communities and neighbourhoods that could offer more practical and instrumental support to YCs, according to the following quote:

I think building community capacity to respond to YC could be very supportive, especially on that logistic side. If I hadn't had family friends who drove my mom to the hospital since I couldn't drive, I don't know what to do. (P013)

Building awareness through media campaigns of YCs stories was also suggested. However, this solution was juxtaposed with the need for a ‘critical mass of awareness’ by continuing to talk about YCs. For example, having a hotline is a practical solution. Yet, as one community organisation participant noted, ‘It’s going to be futile if people who are supposed to refer to this number are not familiar with the issue. So again, it’s about raising awareness in the education sector, the health sector, and the public about this issue’.

Discussion

Findings from our foundational study contribute to the literature on the experiences of YCs in their interactions with the healthcare system in their caring role. YCs described feeling dismissed and unrecognised by healthcare providers, which, for some, prompted them to advocate for their families. In parallel, YCs often normalised their own transition into caregiving. The interdependent transitions within family units meant YCs had to balance substantial caregiving responsibilities with school and work. A sense of missed opportunities was vocalised by several YCs when being a caregiver took priority over work, friendships and moving out. Collectively, the ideas generated identified tailored support for YCs through peer support and building community capacity to assist YCs with practical tasks like transportation. However, the dominant consensus of the group was that such interventions would only be successful with greater interdisciplinary and cross-sectoral awareness, recognition, and support of YCs by healthcare providers.

Family caregivers are often the safety net for persons with acute and chronic diseases.41 Despite their young age, according to our findings, the lived experiences of child and youth carers resemble those of their older counterparts. The care activities are often complex and demanding of YCs, who are relied on for bathing and toileting, household chores and parental support to younger siblings, but are often met with minimal recognition or support.18 23 42 We have expanded this understanding of YCs by examining their involvement in healthcare interactions with their family member, which has received little attention.23 Our study findings demonstrated the enacted vigilance of the YCs towards their family members through their increased visibility and commitment to care in the hospital setting, which is similar to previous literature on caregiver vigilance.43 44 Maintaining a strong sense of responsibility requiring constant vigilance and presence was also found in the YC research.45 YCs in our study also engaged in advocacy efforts for their family members to receive what they perceived as quality care.

Previous studies have identified family caregivers advocating for quality care during healthcare interactions, including when experiencing a hospitalisation or returning home following an admission.46–49 Similarly, being uninformed and uninvolved is a common theme experienced by adult caregivers.50 51 Together, these findings and ours of YCs having significant yet unrecognised advocacy and caring roles provide further evidence of their adult-like responsibilities. Prior studies have captured YC’s lack of awareness of the illness, which often manifested as a need to be more adequately prepared.18 Early-in-life care responsibilities may harm YC’s mental and physical health and psychosocial development.52 53 However, some studies also emphasise processes of coping and resilience among YCs42 54 55 with suggestions for how peer support can be more involved.23 56 Notably, there is a need for intersectoral and interdisciplinary awareness and action to begin addressing the challenges facing YCs.20 Recognition, assistance and prevention require a range of disciplines and professionals across education, health and social care, and community, all of whom can help identify YCs and help develop appropriate and responsive support.

Another key finding of our study is the co-occurring transitions in the family member and the young person. For example, as family members navigated their illnesses, YCs, in parallel, considered higher education or employment decisions on their ill family member. Other studies have called this phenomenon ‘linked lives’, or interdependent and connected lives, particularly within family units.57 While the linked lives concept has been studied in adult caregiving children and older parents,58 59 our work also suggests that a YC and their family members are also interconnected and significant for the well-being of both generations. A point of divergence is that older caregivers reflect on how their lives have changed following the transition phase after the return home from the hospital.59 Instead, the YC participants in our study looked to the future, expressed longings for missed opportunities or made alternative arrangements to accommodate caregiving. This finding is consistent with prior research that found YCs were significantly less likely to see themselves attending higher education60 or were affected by their choices of university, courses and hours they could attend,61 which suggests that the role and responsibilities of caregiving shape YCs decisions. Our theme of ‘Normalising the transition into caregiving’ may not resonate with other cultural expectations of YCs. Existing studies have reported YCs’ perception of their role as ‘normal’,62 however, cultural norms and expectations may contribute to varying caregiving responsibilities of youth.63 64

Implications for practice and research

Bringing visibility and an understanding of caregivers is noted in national and international literature, policy statements and non-governmental caregiver organisations.65–67 Less attention has been given to YCs; however, this is changing. While the UK continues to lead as an ‘advanced’ country in YC research, awareness and policy response, other jurisdictions are moving forward on the YC policy, research and practice agenda.63 68 69 This study provides important preliminary insights into Canadian YCs encountering professionals, which can be used to explore support structures for YCs.70 The co-design session illuminated solutions for age-appropriate peer support and underscored a need to drive more public awareness. That said, future research could consider pathways or an ‘easier open-door approach’ to better recognising and engaging YCs in health, education and social care services.71

Strengths and limitations

Strengths of this study include a focus on an understudied topic, YCs’ interactions with the healthcare system. Interview data revealed patterns of convergence and divergence between YCs reports of transitional care support and the adult caregiving literature. Another strength was our two-phased study design incorporating a qualitative descriptive approach and design methods. Our limitations include a small, geographically homogeneous sample size, which limits the transferability of findings. For example, transferability may be limited to specific health conditions, given that the YCs cared for adults with a range of health conditions. Due to time constraints, triangulation of the findings through additional focus groups was not feasible; however, during the co-design session, we member-checked emerging themes with the previously involved participants. Results may also differ for young adult caregivers or those from rural communities. Last, consideration is required about the transferability of findings given that they are limited to YCs who could participate in the study, as opposed to those who may need more time or energy to be involved.

Conclusion

Our study highlights the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members; however, they also experience unique challenges. As they transition from adolescence to adulthood, YCs juggle their schooling, impacts on career decisions, relationships and commitment to caregiving responsibilities. Bringing visibility and an understanding of caregivers is an active area of work noted in national and international literature, policy statements and non-governmental caregiver organisations.65–67 This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

Ethics statementsPatient consent for publication

Consent obtained directly from patient(s).

Ethics approval

This study involves human participants and was approved by The University Health Network’s Research Ethics Board (REB # 21-5698). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors would like to thank all YC participants and representatives from the partnering caregiving organisations for assisting with recruitment and the co-design activity.