Therapeutic Camps as Respite Care Providers: Benefits for Families of Children with Disabilities

by Kyle Shelton, Mat D. Duerden, and Peter A. Witt

Introduction

We know that attending camp has considerable benefits for children with disabilities, but what about the advantages to their parents? With advances in medical care over the past several decades, issues regarding care of chronically ill children in family and community settings have never been more pressing (Hamlett, Pellegrini, & Katz, 1992). These advances have enabled families to care for their children in the home as opposed to a hospital setting, which places increased burdens on the family unit. These burdens affect important areas of family functioning, including family cohesion, conflict, and problem-solving skills (McClellan & Cohen, 2007). It is important that these families are given as much support as possible in order to alleviate strains on family functioning.

Several studies regarding these issues have found that respite care, where the child is cared for by someone other than the parent, has proven helpful in creating an opportunity for parents to "recharge their batteries," spend time with their children who are not ill, or do other necessary tasks, which could range from employment to grocery shopping (Cowen & Reed, 2002; McNally, Ben-Shlomo, & Newman, 1999). Jeon, Brodaty, and Chesterson (2005) found that respite care provided several benefits, "which included time to rest and relax, freedom to pursue other activities, improved selfesteem, feeling secure about possible breakdown of care arrangements, improvement in family relationships, and sleep patterns" (p. 300).

One area that has received limited research is the use of summer camps specifically designed for children with chronic illness as a provider of respite care. Meltzer and Johnson (2004) reported that most of the research on these camps had focused on the benefits for the children, in areas such as treatment adherence and social networking. Only one study in their review specifically examined family functioning during and after a camp for children with cancer; that study demonstrated that maternal social interactions outside the family improved, with the change lasting for up to one month after camp (Smith, Gotlieb, Gurwitch, & Blotcky, 1987). Meltzer and Johnson (2004) found that mothers reported less caregiving stress after their child returned home from camp and that mothers' level of psychological distress decreased while their child attended camp. The findings of Meltzer and Johnson's study illustrate the importance of respite care provision in a therapeutic camp setting. Thus, it is important to determine whether the benefits found in the Meltzer and Johnson study were relevant only to that specific group of families, or if respite care at similar summer camps also extends the same benefits. The present study sought to examine some of these areas, as well as to extend the body of literature regarding respite care and its impact on the family unit.

According to Access to Respite Care and Help (ARCH), a respite care assistance organization, respite care can be defined as "providing temporary relief for caregivers from the ongoing responsibility of caring for an individual of any age with special needs." Respite care provides benefits for family members by allowing them time to "recharge" or "take a break" from both the physical and emotional demands of caregiving (Joyce, Singer, & Isralowitz, 1983). For example, one study indicated mothers of school-aged and adult children with disabilities were "happier" (i.e., increased feelings of well-being and lower levels of depressed moods) after the use of respite Kyle Shelton, Mat D. Duerden, and Peter A. Witt services (Botuck & Winsburg, 1991). These mothers spent more time resting, sleeping, grooming, and had improved social personal care, leisure activities, and more social interactions when their children were in respite care. Similar findings regarding the efficacy and benefits of respite care have been shown in other studies, including: relieving family stress (Joyce et al., 1983; Marc & MacDonald, 1988; Rimmerman, 1989), improving family functioning and parental attitudes towards their child (Halpern, 1985), reducing social isolation (Joyce et al., 1983), and decreasing parental depression (Herman & Marcencko, 1997). Most of these studies have examined only in-home or daycare style respite opportunities; very few studies have examined the utilization of overnight respite care services for families of children with either disabilities or chronic illnesses.

With these concerns in mind, we conducted a study to examine the benefits of respite care for family functioning. The study focused on families of children who attended a three-day, two-night camp sponsored by a community organization that utilized a barrier-free, non-profit camp in Texas.

Study Methods

A research design was utilized, including semi-structured interviews with several families of recent camp participants. Nine parents from seven different families were interviewed after their child had attended the camp. Their children were between the ages of six and thirteen, with disabilities including Down syndrome, hearing problems, autism, and ADHD. During the interviews, parents were asked to describe their daily life in terms of work experiences, home/family life, and daily stressors. They were also asked about changes in lifestyle necessary to adapt to a child with a disability, opportunities for respite care, the impact of their child attending the camp on their own experiences, and the impact on family and individual functioning after the child returned from camp. Most of the children had attended the camp multiple times.

Results

Parents commented on the stressors involved in raising a child with a disability (e.g., the difficulty in balancing care of non-disabled siblings with disabled siblings) and the idea that there was difficulty in accomplishing daily living activities due to the need to care for a disabled child. Parents noted the need for some time to "just be an adult." Since their children were unable to be left at home with a sitter, or were unable to interact with peers (to attend sleepovers, etc.), parents often felt like they were unable to ever get a break from caring for their disabled child. Erin and Michael (pseudonyms) related that they had difficulty finding respite care because they did not feel comfortable allowing "just anyone" to care for their disabled child. Having their child attend a camp they trusted allowed parents to participate in activities with friends and take care of other daily living tasks in order to not feel overwhelmed by the strain of raising a child with a disability. Several parents mentioned that respite care was an essential aspect of managing their daily lives. Parents also noted the importance of being able to send their child to a camp at a reasonable cost, since having a child with a disability often strained their budget.

Parents also reported that there were benefits to respite care once their child returned from camp. For example, parents could recharge their batteries through rest, relaxation, and spending time with other children in the family or a partner, thus making ongoing care of their child easier. In addition, the children came home from camp excited about the friends they interacted with and the activities they did. For many of the children, camp represented a safe "home away from home." Because some of the children had attended camp a number of times before, they could look forward during the year to the next time they would be able to go to camp.

Implications

Parents noted several things that increased the respite opportunities when their children were at camp. First, parents felt they knew best how to care for and manage their children. Thus, it was important that parents could feel that their child would be safe while at camp and in an environment that was better suited to the campers than what they might receive from basic neighborhood babysitting. Because the camp was adapted to meet the disabilities of the children, had trained counselors, and employed good supervisory staff, parents felt that they could relax and recharge while their child was at camp.

Parents also noted that it was important for them to provide information to the camp about challenges (e.g., food allergies, fears) and behavior management techniques related to their child. Again, this helped parents relax while the child was away in the care of others. Camps should also consider sending out a video to enable both children and parents to get a sense of the camp experience before their first time at camp. A meeting with parents before camp begins might help answer parents' questions. In closing, this research provides support to the growing body of knowledge regarding the benefits of therapeutic camps as respite care providers, and their importance not just to the campers themselves, but also to their families.

References
ARCH. (2009). ARCH National Respite Network. Retrieved August 25, 2009, from www.archrespite.org/national-respitecoalition/ lifespan-respite-task-force
Cowen, P. S., & Reed, D. A. (2002). Effects of respite care for children with developmental disabilities: Evaluation of an intervention for at risk families. Public Health Nursing, 19(4), 272-283.
Halpern, P. L. (1985). Respite care and family functioning in families with retarded children. Health and Social Work, 10(2), 138-151.
Hamlett, K. W., Pellegrini, D. S., & Katz, K. S. (1992). Childhood chronic illness as a family stressor. Journal of Pediatric Psychology, 17(1), 33-47.
Herman, S., & Marcenko, M. (1997). Perceptions of services and resources as mediators of depression among parents of children with developmental disabilities. Mental Retardation, 35(6), 458-467.
Jeon, Y. H., Brodaty, H., & Chesterson, J. (2005). Respite care for caregivers and people with severe mental illness: literature review. Journal of Advanced Nursing, 49(3), 297-306.
Joyce, K., Singer, M., & Isralowitz, R. (1983). Impact of respite care on parents' perceptions of quality of life. Mental Retardation, 21, 153- 156.
Marc, D. L., & MacDonald, L. (1988). Respite care — Who uses it. Mental Retardation, 26(2), 93-96.
McClellan, C. B., & Cohen, L. L. (2007). Family functioning in children with chronic illness compared with healthy controls: A critical review. Journal of Pediatrics, 150(3), 221-223.
McNally, S., Ben-Shlomo, Y., & Newman, S. (1999). The effects of respite care on informal carers' well-being: A systematic review. Disability and Rehabilitation, 21(1), 1-14.
Meltzer, L. J., & Johnson, S. B. (2004). Summer camps for chronically ill children: A source of respite care for mothers. Children's Health Care, 33(4), 317-331.
Rimmerman, A. (1989). Provision of respite care for children with developmental disabilities — Changes in maternal coping and stress over time. Mental Retardation, 27(2), 99-103.
Smith, K. E., Gotlieb, S., Gurwitch, R. H., & Blotcky, A. D. (1987). Impact of a summer camp experience on daily activity and family interactions among children with cancer. Journal of Pediatric Psychology, 12(4), 533-542.

Kyle Shelton received his master's degree in the Recreation, Park and Sciences program at Texas A&M University; Mat Duerden is an assistant professor and extension specialist; and Peter A. Witt is a professor and the Bradberry Recreation and Youth Development Chair in the same department. All correspondence should be addressed to: Dr. Peter A. Witt, Department of Recreation, Park and Tourism Sciences, Texas A&M University, 2261 TAMU, College Station, TX 77843-2261. E-mail: pwitt@tamu.edu.

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