Respite Care Services for Children with Special Healthcare Needs: Parental Perceptions

Abstract

PURPOSE

Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program.

DESIGN AND METHODS

Twenty-two parents who had a child with special healthcare needs who attended a Midwestern respite program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyse the data.

RESULTS

Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program “fit;” and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family.

PRACTICE IMPLICATIONS

Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.

Introduction

Globally, the numbers of families who have a child with special healthcare needs is increasing. Advances in healthcare technologies are able to extend the life of children who would historically not have survived birth or early childhood (Kuo, Berry, Glader, Morin, Johaningsmeir, & Gordon, 2016; Ling, 2012; Thomas & Price, 2012). As the number of children with special healthcare needs increase, so will the number of families taking on the responsibility of caring for children requiring intensive care management. The home has been the preferential environment for providing care for the child with special healthcare needs due to financial and psychosocial considerations (Ling, 2012; McCann, Bull, & Winzenberg, 2015; Welsh, Dyer, Evans, & Fereday, 2014). However, home care transfers the responsibility for following very complex care routines to families (Carter & Mandrell, 2013), and requires parents to develop expertise in managing medications, procedures, and technology. Providing ongoing and time consuming complex care for a child with special healthcare needs can be overwhelming to the primary care provider and the familial unit, who can be impacted both mentally and physically (Carter & Mandrell, 2013; Harper, Dyches, Harper, Roper & South, 2013; Ling, 2012; Welsh, Dyer, Evans, & Fereday, 2014). Caring for the child with special healthcare needs within the home can detrimentally impact members of the familial unit physically, socially, and psychologically (Remedios, Willenberg, Zordan, Murphy, Hessel, & Philip, 2015). Parents are generally trying to balance meeting the child’s healthcare issues with meeting the needs of the familial unit (Watson, 2014; Whiting, 2014).

One of the challenges of home care for children with special healthcare needs is that it is hard for the family, specifically the primary care provider, to get a break from the responsibilities of caregiving (Dyches, Chirstensen, Harper, Mandleco, & Roper, 2016). Respite care entails brief interim care for the child with special healthcare needs, so the parents and family members can be relieved of caregiving responsibilities (Bowman, Butcher, & Dolby, 2011; Remedios, Willenberg, Zordan, Murphy, Hessel, & Philip, 2015; Whitmore, 2016a). Families who have a child with special healthcare needs have consistently reported that respite care is an essential support (Champagne & Mongeau, 2012; Nishigaki, Yoneyama, Ishii, & Kamibeppu, 2016; Virdun, Brown, Phillips, Luckett, Agar, Green, & Davidson, 2015). Respite care allows primary caregivers of children with special healthcare needs to sleep and regenerate their reserves, and experience some sense of normalcy (Dyches, Christensen, Harper, Mandleco, & Roper, 2016; Nankervis, Rosewarne, & Vassos, 2011). Results of an integrative review by Whitmore (2016b) suggests that respite care use may also be associated with a decrease in stress among caregivers.

The consistent issue across the literature has been that parents of children with special healthcare needs can become overwhelmed with the responsibilities of caregiving and need respite (Kuo, Cohen, Agrawal, Berry, & Casey, 2011). However, there is also some evidence that parents can be hesitant to use respite care due to their concern regarding who they can trust to take care of their child with special healthcare needs (Ling, Payne, Connaire, & McCarron, 2015). Parents are unwilling to leave their child in respite care if they are not assured that the child will be safe, receive their needed care and monitoring (Virdun, et al., 2015), and have a good experience. It is important to consider who is providing the respite care, as well as the influence of the respite program on the child, to prevent adverse effects on the child (Hutcheon, McLennan, & Urichuk, 2011).

While a variety of respite care services and programs have been discussed in the global literature (Bowman, Butcher, & Dolby, 2011; Champagne & Mongeau, 2012; Nishigaki, Yoneyama, Ishii, & Kamibeppu, 2016; Swallow, Forrester, & Macfadyen, 2011; Virdun, Brown, Phillips, Luckett, Agar, Green, & Davidson, 2015), no consistent strategy for addressing the respite care needs of parents was found in the literature. It remains unclear what is the most effective type of respite care to meet the needs of parents (Thomas & Price, 2012). The purpose of this study was to examine parental perceptions of utilizing a community respite care program for children with special healthcare needs.

Methods

Respite Program

A community-based respite program with monthly events for children with special healthcare needs and their siblings was developed as a partnership. The partnership was established between a nursing program at a private Midwest university and a large non-profit organization. The program emerged because parents of children with special healthcare needs had limited cost effective respite care within the community. A unique aspect of this community respite program is that siblings of the child with special healthcare needs who wish to attend the events were welcome to participate. The community respite program provided full-day weekend events with activities that were free of charge to families. The events held by the community respite program were staffed by trained volunteers who were healthcare providers, student nurses, and college students from the university partnership. As a result, all children at the respite care program events received individualized care with one or more trained volunteers. Trained volunteers enabled children with a wide range of special health care needs and their siblings to participate in the respite events. During the respite events, all children participated in a variety of activities including crafts, music, and adapted physical activities. Healthcare providers monitored the safety and well-being of all the attendees during the activities of the community respite program event.

Study Design

The purpose of this study was to examine parental perceptions of utilizing a community respite care program for children with special healthcare needs. The study was reviewed and received approval by the appropriate institutional review boards. Focus groups (N = 4) were conducted with parents to explore their perceptions and experiences of having their child with special needs participating in a community respite care program. All of the focus groups were held with the participants at the completion of the day long community respite care event, while their children were being cared for by respite care volunteers. Focus groups were organized and conducted based on focus group methodology described in Munhall (2007). It was established apriori that the focus groups would be conducted until the discussions were not providing any new data, and no new themes were emerging (Fusch & Ness, 2015).

Setting and Participant Recruitment

A convenience sample of parents of children with special healthcare needs was recruited from a respite care program in a large, urban, Midwestern city. Participants were included if they were 18 years or older, English speaking, and the parent or legal guardian of a child with special healthcare needs who was attending the respite event after which the focus group was being conducted. Participants were recruited by an invitation flier included in a regularly scheduled mailing to families enrolled in the respite care program. Additionally, phone calls were made to parents who had registered for the scheduled event for the respite program. Invitation fliers were also distributed and signage made available to parents at the registration table on the day of the respite event. While parents generally expressed a high degree of interest in participating, it was difficult for most parents to commit until the day of the focus group. Many parents commented that their participation was dependent on how their child was functioning that day. Several parents who identified they were willing to participate had to attend to their child’s needs that day and were unable to participate as a result. Additionally, several parents saw the recruitment materials on the day of the respite event and asked to participate.

Focus groups were held immediately following an all-day respite event. Parents were invited into a private room while their children were provided free childcare nearby, supervised by nursing staff. No incentive was offered for participation. An introduction to the study was presented and informed consent was read by the researcher. Parents were given the opportunity to ask questions before signing consent and were informed that they could discontinue their participation at any time. Parents were given time to complete a survey prior to the start of the focus group discussion. Each focus group lasted approximately 1 hour.

Measures

Participants were asked to complete the Participant Characteristic Survey, a researcher-developed 24 item survey, which included: family demographic questions (e.g. household income, parent education, employment status, race/ethnicity, child condition(s), child insurance status); questions about the parent’s experience caring for a child with special healthcare needs (e.g. time spent caring for their child with special healthcare needs, impact on employment, impact on family finances, impact on marriage); and questions about their experience with respite care services (e.g. amount and types of respite services used). A semi-structured, interview template developed by the research team from a global literature search (Bowman, Butcher, & Dolby, 2011; Champagne & Mongeau, 2012; Nishigaki, Yoneyama, Ishii, & Kamibeppu, 2016; Swallow, Forrester, & Macfadyen, 2011; Virdun, Brown, Phillips, Luckett, Agar, Green, & Davidson, 2015) was used to initiate the focus group discussions. The first question asked was, “Tell me about your experience with the respite care program”. Subsequent questions encouraged parents to discuss how they became aware of respite care, the types and frequency of respite care use, the positive and negative experiences they have had with respite care, as well as the benefits and barriers to using respite care. Additionally, an observation guide was developed for a second member of the research team who participated as an observer during the focus groups to capture the context and mood of the participants during the focus groups.

The Parent Characteristics Survey data was descriptively analysed to identify the characteristics of the participants. Focus groups were audio recorded, transcribed verbatim and formatted in a word processing document for data management. Qualitative data was analysed by two members of the research team, using an iterative process of thematic analysis as described by Braun and Clarke (2006).

Results

Characteristics of the Sample

Table 1 provides a summary of the characteristics of the sample. A total of 22 parents of children with special healthcare needs were included in the analysis. The majority of parents were married (77%). Twelve married parents attended the focus group with their spouse (6 couples). However, 5 married parents were not accompanied by their spouse to the focus group. The parents were predominantly Non-Hispanic White (96%), female (68%), and had a mean age of 43 years (range 29-58). More than 75% had an advanced education beyond high school, with 46% earning a college degree. However, only 38% of the parents were employed full-time. Half of the parents reported their annual household income was $46,000 or greater.

Table 1.

Characteristics of the Sample (n=22)

Variable	n	%
Marital Status
Married	17	77
Divorced	4	18
Single	1	5
Parent Race/Ethnicity
White, non-Hispanic	21	96
Black, non-Hispanic	1	4
Parent Sex
Female	15	68
Male	7	32
Highest Level of Parent Education
Did not complete high school	2	9
High school diploma/GED	2	9
Technical college/trade school	2	9
Some college	5	23
College degree	7	32
Graduate degree	3	14
Other	1	5
Current Employment Status
Currently unemployed	7	32
Employed part-time	6	27
Employed full-time	8	36
Missing	1	5
Annual Household Income
Less than $15,000	0	0
$15,000-25,000	3	14
$26,000-45,000	6	27
$46,000-75,000	6	27
$76,000-100,000	3	14
More than $100,000	2	9
Missing	2	9
Number of Children with Special Healthcare Need Living at Home
1 child	14	64
2 children	4	18
3 children	2	9
4 children	0	0
5 children	2	9
Child Biological or Adopted?
Biological	17	77
Adopted	5	23
Child Insurance Status
Medicaid	18	82
Employer-based coverage	3	14
Private health insurance	1	5

Note. The total of percentages may not equal 100 because of rounding.

A total of 38 children with special healthcare needs were represented in the sample and had a wide-range of diagnosis, including: Attention Deficit and Hyperactivity Disorder, Autism Spectrum Disorder, bipolar disorder, Downs Syndrome, Cerebral Palsy, traumatic brain injury, epilepsy, and other congenital disorders. The majority of parents (64%) had only one child with a special healthcare need living at home with the majority being biological children (77%). Ages of the children ranged from 5–16 years old, with a mean age of 10.23 years. Children were primarily insured by Medicaid (82%).

Participant Characteristic Results

A summary of the results of the Participant Characteristic Form can be found in Table 2. The majority of parents reported spending more than 36 hours per week providing direct care for their child with special needs. Half of parents reported that having a child with special healthcare needs affected their employment. Almost half of parents reported that having a child with a special healthcare need “often” or “very often” put a strain on their marriage or relationship with a significant other. Approximately two-thirds of parents also reported that having a child with special needs “often” or “very often” put a strain on their financial situation. Parents attributed the financial strain to the high cost of medical bills, special diets, prescriptions, adaptive equipment, and other medical supplies, as well as the cost and time lost at work by travelling to and from medical and therapy appointments. At the time of the focus group, parents ranged from being first-time respite users to having attended 35 events over the past year (m=13.33, SD=10.9). A total of 14% of parents reported that they have used hospitalization for respite in the past.

Table 2.

Participant Characteristic Results (n=22)

Variable	n	%
Time Spent a Week Providing Care
Less than 1 hour/week	1	5
1-7 hours/week	4	18
8-14 hours/week	5	23
15-21 hours/week	2	9
22-28 hours/week	2	9
29-36 hours/week	1	5
More than 36 hours/week	7	32
Strain on Marriage or Relationship?
Never	1	5
Rarely	3	14
Sometimes	9	41
Often	4	18
Very often	4	18
Missing	1	5
Employment Status Affected?
No	10	46
Yes	11	50
Missing``	1	5
Strain on Financial Situation?
Never	1	5
Rarely	2	9
Sometimes	6	27
Often	3	14
Very often	10	46
Used Hospitalization for Respite?
Yes	3	14
No	19	86

Note. The total of percentages may not equal 100 because of rounding.

Themes

Participants were asked to share their perceptions of utilizing a community respite care program for children with special healthcare needs. While the questions asked focused on the community respite care program, participants tended to share their broader experience with respite care programs and caring for a child with special healthcare needs. Included in this inquiry was a discussion of the resources parents accessed to ensure the needs of their child and family members were effectively managed. There were five themes that emerged from the thematic analysis that was conducted, including: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program “fit;” and Respite is their special time too.

Constant care demands

The first theme which parents shared in great detail was termed: Constant care demands. Parents and care providers reported that they experienced constant caregiving demands, leaving them feeling overwhelmed and constantly exhausted, as one parent described:

I was the only one trying to do everything. Your stamina is gone…you’re exhausted…you know you’re watching [the children] 24/7.

One of the challenges the caregivers faced was the complexity of their child’s health care needs. There were a lot of tasks the parents had to perform each day, just to meet the needs of their child. With limited support at home, the parents were the ones to do everything for their child, as one parent expressed:

I really don’t have a lot of support at home. I’m maybe one of two people that I could probably leave my daughter with and know that all her needs will be met.

It is just so stressful

A second theme that emerged was described as It is just so stressful, as parents shared that they were always dealing with multiple stressors. Challenges that the parents were going through included: financial stress due to their child’s healthcare needs; trying to maintain employment and struggling with work related problems; and also dealing with the inability to find adequate or appropriate childcare. A particular challenge was that it was not just one factor they had to address, but the combination of challenges increased their stress. The parents were going through a lot of stressful circumstances, and just trying to hold it all together on their own:

If I don’t have a sitter or friends that are capable of watching him…what are you gonna do? Bosses don’t care about that stuff. My job was actually in jeopardy…I was being forced to quit. Either quit or get rid of the kids…which was tempting.

Parents further discussed that given the amount of stressors that they were dealing with, respite care was an important outlet for them, as it provided a break from the stress. A mother portrayed it as follows:

It is just so stressful to have a child like this, and so it’s just so nice to have people that you can trust and bring your child to and say I am free for six hours.

Respite is a gift, we get a break

A theme that resonated with all of the participants in the focus group was related to respite care, which is termed: Respite is a gift, we get a break. One of the consistent messages they shared was that it is almost impossible to get a break from the 24/7 responsibilities of caring for their child with special healthcare needs. One parent described that just having the chance to sleep was a break for her:

I would go home, [after] I would drop her off at [respite care] and I would sleep for like 7 hours, because I have never laid down before and I was so tired.

Being “on” around the clock providing care limited the time couples had available to spend time together and to maintain their relationship. It also limited the time the caregivers had to be a ‘person’ and re-charge their energy or personal resources. Having access to some form of respite, which allowed the care providers to get a break from the constant stress or workload, was identified as valuable and viewed as a tremendous gift. One parent expressed how respite impacted them as a couple, sharing that this opportunity helped her marriage survive:

This is our only chance to get out and do something as a couple. And I don’t think that we would survive as a couple and our marriage would survive without respite.

A single caregiver discussed how it impacted them as an individual, as they found themselves with no other opportunities for a break from the constant care demands:

You know, I don’t know what I would do without these [respite events] because I literally don’t have anything else. And so just being able to know ahead of time that they got this…is a gift.

At times parents felt somewhat ‘hopeless’ as there seemed to be an unending journey of caregiving with no end in sight. Respite instilled hope in the caregivers, even if the respite was limited, by providing the promise of a break and time to gain control and a sense of normalcy. Their thoughts were exemplified in the following statement:

For me [having respite services]…there’s a light at the end of the tunnel… it gives you hope.

Respite program ‘fit’

The participants in this study also described the importance of the respite program ‘fit’, as they shared some of their respite program experiences, both positive and negative, as well as what they were looking for in a respite program. Participants expressed a need for respite care to be very organized and consistent. It was very important that the parents could trust that their child with special healthcare needs was safe and received good care while participating in respite care services. Parents also shared their desire for respite providers to demonstrate that they actually ‘cared’ for their children and did not just ‘provide care’ for their child. One parent stated:

You’re so used to not being able to trust anyone…so in the beginning we were like do we give this program a chance because we’ve failed other programs before… And immediately it was like… the first one…. I looked at him and I’m like ‘We are seriously coming back… like this is seriously gonna work this time!’

Having nursing staff present at the respite program to oversee the care of the children with special needs also provided parents with additional reassurance. Knowing that nurses were watching their children allowed the parents to not worry about leaving them, as shared by one parent:

When we leave here we’re like “YEESS!” Like we have no worries we don’t have to call… we don’t have to check up. We know the nurses are here… everything’s fine…like the weight is lifted off us when we leave here knowing that they’re ok.’

Cost was also a consideration for a respite program to ‘fit’ as families all discussed the problems finding care providers and the financial challenges of paying for the respite care for a child with special healthcare needs. Having access to respite that was affordable was important, as that could prevent parents from having their child participate in a respite program. A parent shared their perspective on respite care for their child with special needs:

But the biggest problem with respite care is…finding providers. And you do have to have the money to do it…. they’ll [respite care providers] make $700 a weekend babysitting just so that I can … pretend my life is fine, you know.

An additional concern many parents expressed was whether their child with special needs would function well in a respite situation. Conversely, the parents were nervous about whether the respite staff would be able to handle their child, due to the special issues that some of them had, as one mother shared:

The first day I was really nervous, like oh God please let him not beat anybody up, you know, not let there be any bloodshed when I got back.

Overall, trust in the providers of respite care was a major component of the ‘fit’ of the program. When parents perceived that staff and trained volunteers were competent in caring for their child’s needs, they trusted them to provide for the safety of their child.

Respite is their special time too

Not only is respite care a gift to parents, but there is also a ripple effect where it benefits the entire family, including both children with special healthcare needs and their siblings. Parents in the focus groups shared that the respite program is a special time for their children with special healthcare needs, as they did not have opportunities to socialize with children their own age, limiting the development of social skills. The children with special healthcare needs were not just limited in chances to socialize, but to socialize with peers who they could relate to, as they had similar health experiences and challenges, as reflected in one parents comment:

Just knowing that she sees other kids that are like her and it’s …and that’s OK. She’s loved and she’s trusted to be who she is. And that is really important for her because of her lack of social skills.

Another concern parents mentioned was related to social skills, as their children with special healthcare needs were not included by their peers in social situations. Therefore, it was hard for their children with special healthcare needs to make friends. Participating in the respite program provided opportunities for their children with special healthcare needs to socialize and interact with other children in ways the parents could not provide, as one participant mentioned:

‘…[he] has no association with other kids and then he doesn’t make friends with kids his age. So being able to be here and have that socialization…and that cause…he’s not being invited over to anybody’s house, you know.’

Among the issues that the participants dealt with daily was not just caring for the child with special healthcare needs, but considering the needs of their other children. Respite care was perceived as a benefit to not just the caregivers, but to the siblings of the child with special healthcare needs. Respite care allowed the siblings to have ‘special time’ 1-on-1 with the parents, with a focus on their needs. Unfortunately, the parents felt that the siblings are often frustrated by the demands on the parent’s time due to the needs of their brother or sister.

It [respite] gives me other time with my other children. Where I’m not like that interrupted with time, because they get kinda frustrated because you’re interrupted by this other child [child with special needs] now you can just have a conversation with them, you know.

Additionally, some parents used respite days to spend special time with siblings while their child with special needs attended the respite event, as detailed in the following statement:

Our daughter’s kind of got physical, mobility issues. So we can’t really do active outside things with the other two girls. But now the 4 year old reached an age where we may not have her here [at respite]. We bring the one daughter with special needs and take the other two and do something active outside.’

Frequently, parents chose to have the siblings attend the events, as respite care has activities and social interactions that benefit siblings, as evidenced in the following remark by a parent:

‘I think [respite is] nice for the siblings just because, you know, it’s like it always seems like the special things…well it’s for them [children with special needs].

The siblings who actually participate in some of the events of the respite programs are also provided with a chance to socialize with other siblings who have a brother or sister with special needs. Communicating with other children who can relate to their experiences can be very beneficial to siblings, as evidenced by this comment:

…all my kids love it, and the opportunity as well with my son, not only being a sibling of um a child with special needs, but he, he began to see other families experience the things we experience and it’s not um, he got more comfortable with it, more, more willing to accept that there are other families out there going through the same things that we go through.

Additionally, the events scheduled by the respite program allowed the siblings to have fun, without the responsibilities of their normal daily routine. Daily routines for siblings may be heavier due to having a brother or sister at home with special needs.

Especially, maybe for the oldest [sibling] because she’s…kind of like a second… like a mini mom… So I think it’s nice for her to kinda have her own special time where she’s not helping me with the other kids.’

Discussion

There were several key findings in this investigation, all of which suggest that the events held by the respite care program are beneficial. Beneficiaries of the program were parents participating in this study, their children with special healthcare needs, as well as the siblings. The benefits of the respite program to the couple was that it allowed them time to relax together. The parents were able to enjoy some leisure time without the constant responsibility of caring for their children with special healthcare needs. Similarly, in a study by Kvarme et al. (2016), investigators found that parents of children with special healthcare needs had limited time away from the responsibility of care, and were constantly exhausted. Greater access to respite care for parents of children with special healthcare needs is one way to alleviate the responsibility for care the parents experienced.

The quality and training of providers of respite services was a clear issue, as parents were uncomfortable leaving their children with people they don’t know, and this is particularly true when the children have special healthcare needs. Parents of a child with special healthcare needs know the care their child requires, and spend a lot of time performing that care, so it can be worrisome to leave the child with someone who is not well trained in providing the same care. Participants in this study were relieved when they knew that they had nurses watching over their children, as nurses have been trained to provide specialized care, and they trusted the nurses. Ensuring that qualified healthcare providers are overseeing the care that is provided was discussed in the Nishigaki, Yoneyama, Ishii and Kamibeppu (2016) respite care investigation. The investigators found that mothers who were anxious about being separated from her child were more likely to pull the child from respite care, preventing the parent from getting a break from the responsibility for care. Additional respite care was desired by all of the participants in this investigation, as there never seemed to be enough of a break. However, a key finding of this study suggests respite care is not a ‘one size fits all’; instead the respite care program must ‘fit’ the needs of family. This is consistent with the concept analysis by Whitmore (2016a), which proposes that in order for caregivers to have an adequate break and receive the potential benefits of respite care, the type of respite service, location, safety, duration, timing, frequency, and trust in provider must match with changing family needs.

Limitations

It is important to consider not only the strengths of this investigation, but also its limitations. Sample size could have been a limitation, as there were 22 participants in the 4 focus groups that were held. However, participants stated similar ideas during all of the discussions, within and across all focus groups. As no new data or themes were emerging, by the 4^th focus group, the investigators identified that data saturation was achieved and our sample size was adequate. Another limitation of the study was that a majority of the participants were white, married, and mothers, which does not represent the full diversity of all families who have children with special healthcare needs. Participants were recruited from the families who elected to have their children with special healthcare needs participate in the events held by the respite program, and were able to make time to participate. Parents from this investigation were recruited from events held by this respite program. Therefore, it cannot be assumed that the participants are representative of parents enrolled in all respite programs. The findings of this study do not represent parents who currently do not utilize respite care programs. One concern the investigators had considered prior to initiating the study was that a researcher on the team was involved in planning and hosting the respite events. However, the researcher was only involved in supporting the recruitment of trained volunteers to staff the event for the respite program. The researcher did not run the respite event, and did not directly engage with parents. Therefore, parents had no way of knowing of the researchers involvement in recruiting trained volunteers to staff the event, and it was not considered a direct conflict of interest.

Implications

Implications for Education

Current and future nurses and other healthcare professionals need to be educated on the importance of respite care and the impact having a child with special healthcare needs has on families. Innovative service learning experiences, such as the program presented in this study, that utilize nursing students to provide respite care for families should be modelled in university settings across the country. Toolkits can be developed to help schools, churches and other community-based organizations develop and evaluate their own respite care programs, similar to that presented by Whitmore (2011).

Implications for Future Research

This study also has important implications for future research to help expand the body of knowledge in this important area. Further research is needed to study the impact of respite care services on family self-management abilities, as well as parent and child health outcomes. There is a need to better understand how to tailor respite care services to the unique needs of families to optimize outcomes. Future research should explore how respite care experience varies by child condition factors, such as diagnosis, mobility limitations and technology dependency. Barriers to access need to be explored, as well as opportunities to expand successful models. Additional exploration into the impact of respite care on the children with special healthcare needs, their siblings, and the marital relationships of parents is needed. Additionally, health services research is needed to examine the return on investment for preventative respite programs in reducing healthcare, workforce, and societal costs.

Implications for Policy

Despite evidence that respite care is an effective intervention in supporting family caregivers, respite care needs remain largely unmet. Healthcare professionals should advocate for funding and policy changes to increase access to low cost/free respite care services that better meet the needs of families of children with special healthcare needs. Reimbursement methods, expansion of Medicaid waiver programs, and additional funding opportunities for respite care are critically needed to expand access to respite care programs. Healthcare policies are needed to create reimbursement incentives for screening for respite care in clinical settings. Additionally, healthcare systems should consider ways to leverage the electronic health record to help with screening, referral tracking, and documentation of respite care use and outcomes. Expansion of care coordination and medical home models may also be warranted as possible methods to better identify and coordinate respite care needs. Finally research funding is needed to enlarge the body of knowledge around this emerging topic.

How Might this Information Affect Nursing Practice?

Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs. Parents in this study reported actively pursuing respite care, yet not all families may be aware of the respite care opportunities available within the community. Screening for unmet respite care needs should become integrated into all practice settings for early detection and appropriate referrals to respite care services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers that parents can trust to provide for the complex needs of their children with special healthcare needs.