Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration

Abstract Introduction Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.

In Manitoba (MB), Canada, for example, the provincially administered Children's disABILITY Services programme funds respite for families with CYSHCN under age 18 who have specified disability diagnoses.
Depending on eligibility, assessed needs and available resources, respite may be provided via self-administered, agency-delivered or direct service providers (SPs). 8,10wever, research relating to Canadian families with CYSHCN primarily reports moderate to low receipt of respite care.For instance, in British Columbia, 53% of families of CYSHCN had access to publicly funded respite care. 11In one Alberta study, 2.5% of the full sample and 26% of CYSHCN with high severity of disability used family disability services (included respite), 12 whereas, in another survey with 57 families in a large Western Canadian city, 73% used in-home formal respite care; but 77% of all respondents perceived they were not getting adequate breaks, regardless of the level of care for their CYSHCN. 13In a MB study using administrative data, 23.7% of CYSHCN had received respite during the 5-year study period. 14rther, of the 2049 families approved for publicly funded respite in MB in 2019-2020, only 30.8% were able to receive respite during this time period, due for example to being unable to find respite workers, or unaware of alternatives to meet needs. 8In Ontario studies, 46% of caregivers of children with cerebral palsy, 15 and 49.5% of families with CYSHCN had received respite care services in the past 12 months. 164][25] Furthermore, lack of appropriate skills and experience amongst respite workers, and inconsistent and unregulated training for respite workers can leave parents feeling even more burdened 26 and impact care provision. 27ven families' concerns, it is important to explore the perspectives of respite SPs and stakeholders (SKs) regarding respite care.
Previous research reported that respite SP noted challenges with system accessibility and navigation, 22 funding inflexibilities, 28 service provision limitations and inefficiencies, 29 including inadequate supply of, 30 and training for respite workers, 26,28,29,31 and regional inequities in service provision. 29,32The lengthy list of respite care system challenges is concerning given unmet respite care needs, 33 which may lead to hospitalization of CYSHCN. 17To address these challenges, respite SPs have identified the need for; 'a one-stop clinic for families' 29,p.2554effective communication between SPs/ teams and families, 22,26,29 clearly defined respite worker roles, 34 together with calls for culturally responsive service processes 22 and person-and family-centred approaches. 26e goal of this study was to gather evidence to inform respite care that is responsive and integrative for families of CYSHCN in MB, a Canadian province.This paper presents findings from interviews with respite SPs and SKs, highlighting current challenges within respite care systems along with recommendations to inform an ideal system of respite care using process maps. 35,36| METHODS

| Study design and participant selection
This qualitative study is part of a mixed methods project, including interviews with MB families (mothers, fathers and siblings) of CYSHCN, 37 and a population-based component to assess respite services received/utilized by MB families of CYSHCN. 14e interview guide explored participant perspectives on delivering respite care to families.Attention was given to their views on conditions that promote respite care that is responsive and integrative.Similar questions were asked as those asked during the family interviews 37 but tailored to fit with the nature of the SPs' and SKs' roles (see Supporting Information: Appendix A).
Using a combination of purposive and snowball sampling, we recruited respite SPs (e.g., respite workers, clinician, coordinator) from seven government, health and community organizations across MB, and SKs (e.g., policymakers, administrators, family and advocacy group members) from nine respite services departments/organizations in Canadian provinces using posters, invitation letters, and social media until theoretical saturation was achieved. 38,39SKs outside of MB were included to provide a broader scope of recommendations.Interested participants were contacted by study personnel to explain the study and arrange for an interview.
Process mapping was used as a methodological tool to identify current respite system complexities and bottlenecks, and opportunities for improvement. 40Process maps portray the multiple roles and steps involved in processes, 40,41 assisting in '…fostering shared understanding of current state and ideal future state processes'. 42

| Data collection
Demographic forms were completed by participants followed by interviews in English, conducted between September 2019 and January 2022 by trained research personnel either in-person, by phone or video conferencing using various strategies to facilitate discussion. 43,44Interviews were audio-recorded and transcribed verbatim and field notes were recorded to describe nonverbal behaviours of participants, interview dynamics and context.

| Analysis
Data analysis occurred simultaneously with data collection.The analysis first involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes, 39,45,46 which were organized into a table of contents in Microsoft Word.All data were reviewed repeatedly for significant statements by authors R. L. W., C. A. I. and A. K. in an attempt to understand participants' lived experiences and meanings through themes. 45Any discrepancies or uncertainty of themes were resolved via discussion among all three authors until consensus was achieved.The Family Advisory Committee was presented with findings and reviewed the major themes on an ongoing basis.After meetings, notes were made and assumptions checked to ensure there was no researcher bias.Participants' home/work province are not identified in the quotes to protect confidentiality.Demographic characteristics were calculated using basic descriptive statistics using SAS ® version 9.4. 47In a second level of analysis, themes and subthemes were applied to crossfunctional process maps, 48 depicting current state and ideal state respite care systems.

| Participants
Participant characteristics are reported in Table 1.Participants could have multiple roles, for example, clinician and advocacy group member.

| Themes
Themes are presented under two overarching sections: (A) challenges with the current respite care system; and (B) recommendations for an ideal respite care system.Subthemes within each theme are noted in bold font.Within the challenges and ideal respite sections, themes are ordered to reflect the flow of process steps from seeking respite care to outcomes of obtaining it or not.Findings also are visualized in the process maps (Figure 1A,B) providing a system view of themes (columns) shown as phases through the respite care process.Rows in the maps identify the different functional roles (e.g., families, funder, respite worker) within the system.Common process map shapes/ symbols such as start and finish steps, activities, roadblocks and decisions represent subthemes or steps within each phase.Arrows and lines depict the direction and flow of the process, whereas solid results in uncertain outcomes of respite needs being met for some families, but unmet for others.

Barriered access
For families, the first step in accessing respite is to obtain a formal diagnosis for their CYSHCN from a medical professional.However, participants noted there were 'waitlists everywhere', as some families wait months for a diagnosis and newcomer families wait for respite contract renewals.Backlogs in families being assigned a CSW further delay assessments for respite.
Access is further impeded due to a 'who fits in the box' approach to meet eligibility criteria for publicly funded respite.For instance, CYSHCN who do not 'have the right disability' such as a physical disability (e.g., cerebral palsy) versus an intellectual disability.

(A)
F I G U R E 1 (A) Respite care system cross-functional process maps-current state themes.(B) Ideal state process map.
In most cases, I would say that the family feels like it's not easy to find and access respite, especially if they've fallen into one of these cracks where they are not eligible for public funding.[SP12] Additionally, the nonstandardized eligibility criteria and funding entitlements across respite organizations, jurisdictions and regions further impacts access to respite.
If and when families receive a diagnosis and meet eligibility criteria, there is still a constant 'fight' to secure sufficient respite care.
For families with strong advocacy skills and a supportive CSW, prospects of acquiring adequate respite care were greater.However, for families 'who don't know how to be the squeaky wheel', or fear advocating would impact other needs, their respite needs frequently go unmet.

Ambiguous navigation
Participants noted that it's a puzzle for families, SPs and organizations to navigate and operate within the respite system due to its ambiguity with misinformation/conflicting information and complexity.
It's just so complex …I've been doing it for a little In contrast, for some who had their respite care needs met, SP and SK identified this as supporting their family wellness and unity and reducing hospitalizations.Receipt of respite care was also noted as beneficial for CYSHCN, through relationship-building opportunities and connections with others outside their nuclear families.
Furthermore, with respite care needs met, parents were able to dedicate much-needed time to their other children.
Participants also made numerous references to the advantages of adequately funding respite care for families in the early stages, resulting in reduced costs for public funders and better outcomes for In contrast, to the current state process map (Figure 1A above), Figure 1B, the ideal state process map displays families functioning within the respite care system, alongside the other functional roles to depict a family-centred system of respite care.
Families' journeys through an ideal system would be smoother, more direct, with roadblocks and barrier activities being nonexistent.In an ideal respite care system, the 'finish' step or outcome of the process is that respite care needs are being met for all families of CYSHCN.

Attainable access
A strong theme across the interviews was that an ideal respite system would be one with 'more streamlined' entry to respite care.'It would be a single point of entry, one door with families accessing information of the locations they live in, so families know more about the process…'.This would also allow families to

Facilitated navigation
According to SP and SK, navigating an ideal respite system would be a 'straightforward' process, with for example, a centralized database containing a list of vetted respite workers whom families could contact for provision of respite to their CYSHCN.The option of supported navigation services to guide families and respite staff would address current navigation challenges.This would include well-informed and informative CSWs regarding available respite services and entitlements, actively sharing this information with families and ushering them through the system processes.
You really do, do need somebody and that's what their social worker [CSW] is.… So, they need to be aware of all that's out there and they need to be able to be not

gatekeepers…. [SK03]
In turn, this would result in empowered families seamlessly navigating their way through the respite system: Specifically, addressing the challenges noted above with inconsistencies in current respite care entitlements, numerous SP and SK noted that an ideal respite care system would be transparent and equitable, meeting the needs of all CYSHCN and their families, including newcomer and Indigenous families, providing culturally relevant care.
Addressing the current challenges of CSW gatekeeping and lack of communication, one SK shared their knowledge of a transparent and equitable respite system in another country.
It was a very transparent system.You knew the more things that you had to deal with and the higher your score was, there was the likelihood of you getting that Using a more comprehensive, family-centred approach, would encompass focusing on what families need and allowing for an active role in decision-making for their respite care plan through '… honouring the voice of the family.And then bringing in the voices of all those who support and coming up with a plan that, that everyone is on the same page about' [SP10].Furthermore, using this approach would better support families and avoid crisis situations '… to allow that family to stay together but function as a family'.

Outcomes: Respite for all
To ensure all families who require respite receive it, participants suggested a human-rights framework from which an ideal respite care system could be approached, that of valuing the CYSHCN, their family and those who provide respite care, while using a familycentred approach.Participants felt strongly regarding the need for early intervention and investment in families in an ideal system of respite care, for example, building capacity and stability for families to care for their CYSHCN and preparing for the marathon of lifelong respite care and support.This approach would result in fewer undesirable outcomes such as family burnout, CFS placements and higher costs noted in the current respite system as shared by one participant.

| DISCUSSION
To the best of our knowledge, this study is the first to qualitatively explore the perspectives of respite SPs and SKs working with CYSHCN from multiple Canadian provinces.Two studies explored perspectives of Ontario respite SPs working with immigrant mothers, 22 and families 50 and a New Brunswick study included interviews with SKs working in the health, social and education sectors. 51

| Use of process mapping
While the intent of this study did not include a fulsome quality improvement process mapping approach, 52 visual display of qualitative findings 53 using cross-functional or swim lane process maps 48 provides new and novel insights (Figure 1A,B).Process maps have been used in quality of care research in oncology, 41 and nephrology, 40 however, to the best of our knowledge not previously been applied to respite care.p.1 4.1.1| Challenges within the current respite care system The current challenges themes in this study align with much of the previously published international and Canadian qualitative literature on SP and SK perspectives regarding respite system challenges including access, navigation, service provision and unmet respite care needs.
The barriered access experienced by families as described by SK and SP including long waitlists, 8,11 narrowly-defined eligibility 37,51 and having to 'fight' for support services, 22,51,55 are unfortunately also common for families of CYSHCN in many jurisdictions.Hodgetts et al. 56,p.676suggest that assessments for respite eligibility are typically centred on existing services, '…which may not reflect the full spectrum of family needs', leaving families and CYSHCN falling through the cracks 51 and left without adequate respite care.
Navigation struggles have also been identified in other Canadian 22,51 and MB 8,37 studies with respite SP and families, along with knowledge exchange gaps between families with CYSHCN and respite providers, 22,29 thus we were not surprised by these findings.
Unique to this study are the findings identifying the key roles of CSWs, case workers or social workers, who have the influence and authority to lead families into and through respite care systems, to ensure their respite care needs are met.
Similar to this study, concerns regarding respite service provision have been published previously in the international literature including service provision limitations and inefficiencies, 29 inconsistent and inadequate respite worker training, 26,34 limited supply of adequately trained respite workers 37 and funding inadequacies. 29,51p.10 Furthermore, although many studies have identified service provision challenges within respite systems across Canada and beyond, participants in this study named current respite systems as operating in crisis mode, further supporting the need for change, and the aim of this study to inform responsive and integrative respite care for families of CYSHCN.
While SP and SK were not specifically asked about unmet and met respite care needs of families, questions similar to those asked in this study have been used previously to report on unmet caregiving needs in a Canadian context. 57Unmet respite care needs identified in this study frequently led to families being in crisis (Figure 1A), similar to other studies reporting caregiver burnout and elevated levels of psychological distress, 57 with greater parental stress correlated with important unmet needs. 58rthermore, acute-care resource use, 59 and hospitalizations or rehospitalizations of CYSHCN and/or parents, have previously been reported in the literature. 4,5e need for some CYSHCN to go into foster (CFS) care to receive respite, while not as commonly reported, was also identified in the MACY report 8 showing that over a 5-year period, the child's disability was a contributing factor for 36% of MB children who entered into care.This is concerning, not only from a human rights perspective, which states children with a disability should not be separated from their families, 6 but also given that children are most effectively cared for in-home by their families. 8timately, when respite care needs to go unmet, the outcomes can lead to significant healthcare costs, as highlighted by Cohen et al. using a population-based approach for CYSHCN in Ontario. 59

| An ideal respite care system
Inclusion in the present study of conceptualizations of an ideal respite care system with participants' solutions to address the current challenges identified above provides a blueprint for healthcare providers, policymakers and funders for moving forward towards respite systems change.
Although not as comprehensively as in this study, several qualitative studies report SP' and or SK' perspectives on both challenges with and recommendations for improved respite systems.Challenges included restrictive eligibility requirements, 51 and funding gaps. 29,51Recommendations encompassed single entry point access, 51 navigation support, 22,51 communication and collaboration, 26,51 respite SP/worker training, 26,29,51 person-and family-centred care 26,60 and cultural responsiveness. 22wever, only Khanlou et al., 22 Charlton et al. 51 and King 50 studies include perspectives of Canadian respite SP or SK.
Our findings for implementation of attainable access are supported by qualitative studies with SP/SK from the United Kingdom, 29,34,60 Australia 26 and New Zealand 55 recommending single-point-of-entry access, 29,34,51 and accessible eligibility criteria. 26New findings in this study of the recommendation for respite access advocacy for families by respite-providing organizations, CSWs and workers is warranted, as previous research has shown that carers, for example, parents, are least able to advocate for themselves with formal services when they are at a crisis point. 55ile limited qualitative research exists on Canadian SP' and SK' recommendations for improving respite care, some of our findings align with calls for supported navigation services, 22,50 previously shown to be beneficial for CYSHCN. 61New findings by SK and SP in this study suggest an ideal respite care system would embrace family empowerment practices, which is supported by MB families who emphasized the need to recognize families as experts of their own needs. 37Also, previous qualitative studies with SPs/SKs from the United Kingdom, 29,34,60 Australia 26 and New Zealand 55 support our findings recommending improved knowledge exchange with families and within teams. 26tably, like our study, recommendations for improved service provision via more flexibility in amount and type of respite, 62 using an array of service options for families were made more than 20 years ago by the National Respite Care Project, wherein participants noted that 'typically, governments fund the individual plates on the buffet (i.e., single services) rather than the wide spectrum of choices that, in this case, is required.p.6International qualitative studies with SP and/or SK 26,29,34,55,60 also support our findings noting the need for transparency, culturally relevant care, and crisis prevention.Additionally, recommendations for transparent service information 56 have been identified in Canadian studies.
Unsurprisingly, our findings calling for adequate and standardized training for respite workers, 34 trusted respite providers, 55 have been reported in qualitative studies with SP/SK internationally, 26,29,34,55,60 including in Canada. 51New findings in this study suggest an ideal respite care system would support extended family/ friends as paid respite workers.The use of informal support from extended family and friends is often sought out and helpful for families, although not always available, and becoming increasingly so as children age or conditions become more complex. 63,64Recommendations by SP and SK in this study, and MB families 37 to provide remuneration for informal respite carers such as family and community members could address insufficiencies with respite workers.
Again, similar to qualitative studies from the United Kingdom, 29,34,60 Australia 26 and New Zealand 55 with SK/SP, the need for person-family-centred approaches 26,34,60 support our findings for family-centred respite that honours the voice of families.
When receipt of respite is the outcome for 54 family caregivers, they can rest and feel rejuvenated, and their respite care needs can be met.Hodgetts et al. 56,p.681suggest that '… needs are often well met only if families can actually learn about and access available services', which supports the findings of this study, and the need to address the lack of accessible information for families.New findings in this study suggest an ideal respite care system would value CYSHCN, their families, and respite workers.Previous Canadian reports recommended viewing children with disabilities '…as equal members of the community…', 8,p.9 and valuing respite work as a career. 37However, the collective, more nuanced findings of this study reach beyond frequently reported logistical system improvement needs, highlighting the need for a more human rights-based approach to respite care for families and CYSHCN. 6,7lls for adequate public funding for respite care from SP and SK in the United Kingdom, 29,34,60 Australia 26 and New Zealand 55 support our findings for dedicated funding. 29,34Public funders and regulators must act now to move to a new reality of respite care, using a responsive and integrative approach.
Furthermore, it is well established that receipt of respite care allows parents and families time for rest and self-care and has been linked with improved marital quality, 65 decreased stress in qualitative and quantitative studies involving MB siblings, 25 parents 24 and mothers 14 of CYSHCN.Thus, in a responsive and integrative respite care system, accessible entry, followed by navigational support, and timely family-centred provision of respite care makes for strong, resilient and healthy families (Figure 1B).

| Limitations
There are several limitations to this study.We did not explore differences in respite care needs or service provision for different cultural groups.This study interviewed respite SPs and SKs.
However, we did not interview SP and SK along with the families they serve to determine if families, SP and or SK share the same views in terms of best respite care for the CYSHCN.Also, longitudinal follow-up with SP and or SK was not part of this study but would have been helpful to understand if and/or how respite service provision for CYSHCN has changed over time.

| CONCLUSION
The evidence of unmet needs and the necessity for change within respite care systems in MB and across Canada has long been available, indeed well beyond the estimated latency of 17 years for new knowledge to reach routine clinical practice for example. 66The time for action to ensure a 'respite is for everyone' outcome is long overdue.The themes and process maps generated from our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhanced resource allocation, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite care outcomes to meet the needs of all families and CYSHCN.
families and CYSHCN.If they[funder] provided the services in the early stage it will be easier, more beneficial for the family as well as for the system because you know like if they want to save money, they would be able to save money in earlier stage faster and better……than waiting untillike… [A crisis].[SP22]3.2.2 | An ideal respite care systemRespite SP and SKs were asked to describe what an ideal respite system would look like for families of CYSHCN.The four main themes arising from this question provided solutions related to the current challenges identified above: Attainable Access, Facilitated Navigation, Family-Centred Service Provision and Outcomes-Respite for All.The call for more funding and the importance of cross-system collaboration and communication were noted across several themes.

I
think that family members need to feel more empowered about identifying and navigating services that exist out there without going down a rabbit hole in Google to try and figure it out which is pretty much how our families find us.[SP17] Family-centred service provision A family-centred respite care system would offer an array of agile services, a spectrum of options that would be flexible, adjusting to the changing needs of CYSHCN and families, and responding quickly … to keep people from going into crises [SP14].
It's how you value people……that we're supporting right.If we value them, we pay the worker a living wage.We value them, we give the parents and the individuals some respite, if we value them.[SK11] WOODGATE ET AL. | 7 of 12 Respite service providers and stakeholders characteristics.
Lastly, the consequence of families' unmet respite needs were said to result in increased costs for public funders, operating within a crisis model but yet not funding less costly respite care directly to families, as described by a SP.
while, but it is a mysterious web of systems and that is for me as a service provider and never mind being a lay person, never mind being a newcomer family, never mind having a language barrier and if you aren't attached to[organization], how are you supposed to know? (SP21) CSW can, however, play a pivotal role in navigation, as in a sense CSW are gatekeepers.Whether families are able to effectively navigate through the system and receive adequate respite or not is significantly influenced by 'who's on your team' [SK10].'Butalot of families didn't get that [extra respite] because their worker didn't tell them that they could.And you don't know what you don't know' [SK12], highlighting communication gaps between CSWs and families.Service provision: Inflexible, inconsistent and insufficientSPs and SK spoke of the inflexibility in how funded respite hours are allowed to be used by families, stating, 'there's no flexibility (B)F I G U R E 1 (Continued) WOODGATE ET AL.| 5 of 12 within the system.So, we're not even saying give me more hours, just let me manage the hours that I have better, so I don't burn out …' [SK11].find …keeping staff' [SK03].Moreover, low wages and limited training for respite workers led to high turnover which is further linked to the inability of families to trust their respite workers.Outcomes: Respite care needs unmet/met Given the inflexibilities, inconsistencies, and insufficiencies, the respite care system was described by numerous participants as operating in crisis mode, impacting both organizations, workers and families.For example, 'huge' caseloads for organizations and CSWs prevent them from providing meaningful care for families.Often, respite services are only funded and provided at 'the last moment' when families are 'literally falling apart'.Not only is this approach detrimental to families, 'it takes more time, more resources, more money, to provide services and then bring the client to the level that can function' [SP22].When families have unmet respite care needs, SP and SK spoke of families in a state of crisis, leading to caregiver burnout, parental mental health issues, and limited capacity to care for their children as they would like to.With parents in crisis, siblings, sometimes referred to as 'glass children, because the parents see right through them…' [SP05] may be unintentionally overlooked by parents who are directing most of their time and energy to care for their CYSHCN.In severe cases, parental burnout and mental health issues led to emergency room visits and parents' hospitalizations or CYSHCN rehospitalizations.For example, '… we see kids frequently being readmitted, … strictly because parents just are burnt out.… We don't There's been lots of situations where people have had to sign their children over to CFS.Because they don't know what else to do, and they're not being given the support that they need in their home to be able to keep their child at home.And like what an awful and horrible thing to have to do simply because you don't have the support that you need.[SK12] have to share their story once.Other participants suggested there should be standardized eligibility criteria by which families could reliably determine how much respite funding they would be eligible for, as currently, '…there's no rhyme or reason to it' … need to start like stepping it up and start advocating more to say the government or like the higher ups about what is actually required, …what works best for the families that we work with… And now we need to start implementing what they need.And you know kind of start changing, changing the system.[SP16]