Summer camps for chronically ill children: a source of respite care for mothers

Author(s): Meltzer, J. and Bennett Johnson, S. (2004)

Published In: Children’s Healthcare, 33 (4): 317-331

Study Aim/Purpose: The study’s purpose was to examine psychosocial benefits for mothers of a one-week overnight summer camp for chronically ill children. The authors note that “this study is the first to empirically examine camp as overnight respite care for mothers of children with chronic illnesses. In addition, the large sample size and longitudinal design provide a new contribution to the empirical literature on the benefits of respite care.” 

Summary of Methods: The study analyzed survey responses from 161 mothers whose children had chronic diseases (cancer, epilepsy, kidney disorders, or asthma). Participating mothers completed structured telephone interviews at four time points: pre-camp, during camp, immediately post- camp, and one month after camp ended. The questionnaire, developed specifically for this study, measured the following characteristics of maternal caregiving: 1) level of caregiving demands (related to medications, in-home medical care, out-of-home medical care, night-time medical care); and 2) subjective caregiver stress related to four areas of caregiving demands. Outcome measures focused on the mothers’ psychological functioning in the following areas: 1) feelings of overload (measured with 4 items developed by Pearlin); 2) depression-anxiety (measured with a subset of the Langner Screening Inventory); 3) distress related to parenting (measured with a maternal distress scale developed by Pearlin and Schooler). 

Summary of Key Results: The level of mothers’ caregiving demands were relieved during camp, but returned to pre-camp levels once the child returned home. Despite this return to pre-camp levels of demands, mothers’ perceived overload level decreased significantly below baseline for children with all types of illnesses during camp and remained at levels lower than baseline after camp (though somewhat higher than during camp). While maternal distress and depression-anxiety levels were also reduced during camp, they were not significantly below baseline even one week after camp. Only the subgroup of mothers of children with cancer who were no longer receiving treatment when they entered the study experienced sustained decreased levels of distress after the one week of overnight camp. 

Study Limitations (as cited by authors): The authors cited the following two study limitations: 1) measures of caregiving demands and psychological factors were all based on mothers’ self-report; and 2) the study design did not include a control group. 

Authors’ Discussion/Conclusions: The authors suggest the following implications for practice and policies related to their findings: 1) referrals to summer camp should be incorporated into the physical and psychosocial health care of children and their families; 2) summer camps for children with chronic illnesses should be designated as an overnight respite care service to allow existing respite funding (Medicaid and other) to be used to support this model of respite; and 3) professionals who work with chronically ill children could plan and utilize respite funding to expand summer camp programs to include more frequent opportunities for overnight respite throughout the year. They also recommend that future research should continue to examine summer camps as respite care providers and measure additional outcome domains for caregivers, including the benefits of respite for all family members.