Respite Services: A Critical Review of the Literature
Families of children with special needs often require a number of services to enhance the health, well-being and life quality of their child and family. Respite care is one such service. Most families with children need help from time to time to care for their children while they shop, visit friends, or just take a break. Many people arrange for a babysitter, or perhaps grandparents, to help out for a few hours. Families with a child with special needs may find that they have both a greater need for this type of support and greater difficulty making arrangements for someone to care for their child. They may want to use "respite" services. For the purposes of this report, we use a broad definition of respite services as follows:
"the shared care of a person with an illness or disability, either at home, in the community, or in a short term residential setting, in order to give the family a break from the routine of caregiving." (Treneman, Corkery, Dowdney & Hammond, 1997, pg 548).
The purpose of this report is to summarize what we know about respite services for children and families from a review of the literature. The report includes a summary of the different models of respite services, a review of parent preferences for different types of respite services and an integrated summary of the literature on the effectiveness of respite services. Recommendations for future research and potential policy implications will be highlighted.
The literature review was completed using a systematic search strategy. Electronic databases were searched including: MEDLINE, CINAHL, HealthStar, PsycINFO, and ERIC. Keywords used included: respite care, children, evaluation, effectiveness, and pediatrics. Hand searching followed, based on the references from the articles retrieved through the electronic searches. Finally, government and agency reports as well as textbooks were included.
Models of Respite Service
A wide array of different models of respite services are described in the literature. The models vary across four dimensions: purpose, duration, location and provider. Services are described as having a primary or a secondary respite purpose. A primary service would include those services where the specific intent is to provide the family with relief from caregiving. Secondary services include those where the purpose is to meet the needs of the individual with the disability and respite occurs as a by product, for example, when a child attends a summer day camp program (Stalker & Robinson, 1993).
A second dimension is the duration of the respite service. Short term programs usually provide relief for a few hours or a day or two to allow the caregivers to run errands, attend to other family needs, or simply have a rest. Longer term programs typically provide care for a period of a week or more and allow the caregivers to have a more substantial break.
Location is the third dimension. In-home programs provide services for the children in their homes. The family or caregivers may or may not be present while the respite caregiver is there. Some families use a respite worker to care for their child with special needs in the home to give them time to focus on their other children. Out-of-home respite services include a large variety of options, for example, care provision in the home of a neighbour or relative, stays in a community-based residential home or short term hospitalization (Deiner & Whiltehead, 1988; Hayes, Hollander, Tan & Cloutier, 1997).
The final dimension that helps to describe the models of respite services is the provider. Some respite services involve paid or professional caregivers who often have special training. This model of respite is usually more formally constructed and less flexible. Cooperative models of respite service include friends, relatives, parent-cooperatives, and family-to-family support groups.
Within each of the four dimensions, there is a continuum of options, so the variety of respite models described in the literature is vast. The next section describes what we know about parent preferences for these different types of respite service.
The recurring theme which emerges from the literature on parent preferences for respite services is not surprisingly, choice ( Leonard, Johanson & Brust, 1993; Sherman, 1995; Treneman et al., 1997). Families want access to a wide variety of respite care options that can meet the needs of their individual child and family. The needs and preferences vary between families and within families across time as circumstances change. Families consistently place their child's need for a positive, enriched and supportive environment ahead of their own needs for respite. Services that parents can trust to provide this type of experience for their child were the consistent preference. Their preference for how that high quality of service was delivered varies a great deal, due in part to the perspectives from different countries. Models of respite, access and financial supports are unique to different countries and jurisdictions within those countries, so again the scope of preferences identified through the literature review is very broad.
There are, however, some trends in parent preferences in the respite literature. In-home services appear to be the option preferred by the majority of families as they are seen to be least disruptive to the child and family, and families are able to monitor the quality of care provided. Families do identify the need for emergency respite services and/or longer term respite which may be provided outside the home. Their preference in these circumstances is that the out-of-home service still be provided in a "home-like" setting in the community, e.g., a group home or other family home, rather than in an institution (National Long Term Care Foundation, 1992).
Families with seriously ill children, or those who are medically fragile, have a need for more intensive services and require more highly trained respite workers. Many other parents however, identify a need for more frequent but shorter duration services, e.g., care provided for a few hours to free the caregiver for running errands, attending to siblings needs, taking a night off (Hollingsworth, 1992; Lessing & Tatham, 1991).
Several studies suggest factors that may influence parent preferences; however, the number of studies is not large enough to draw any firm conclusions. One study found an influence of race on parent preferences (Stalker & Robinson, 1993); one reported a difference based on the age of the child (Freedman & Boyer, 2000); and another found preferences related to the type of disability (Leonard et al., 1993). Despite the limited sample to draw on, there are recurring themes in the preference literature.
- choice and flexibility in choosing services that match their needs
- high quality services that they can trust to provide their child with a positive experience
- access to information about available services to allow them to make choices
- a coordinated network of services to allow for ease of access
Preferences and needs expressed by families regarding respite services appear to be the same as those expressed by parents regarding all the services they need for their child including health, recreation, social support and education. They want flexible, coordinated, individualized, accessible and affordable service.
Effectiveness of Respite Services
Much of the literature on respite services focuses on the need for respite (Appoloni & Triest, 1983; Campbell, 1996; Crnic, Friedrich, & Greenberg, 1983; Freedman & Boyer, 2000; Grant & McGrath, 1990; Starkey & Sarli, 1989; Turner, 1999), the characteristics of respite users and non-users (Factor, Perry & Freeman, 1990; Halpern, 1985; Marc & MacDonald, 1988; Treneman et al., 1997; Warfield & Hauser-Cram, 1996) and satisfaction reports from parents who have used respite services (Edgar, Reid, & Pious, 1988; Jawed, Krishnan, & Oliver, 1992; Joyce & Singer, 1983; Joyce, Singer, & Isralowitz, 1983; Patacek, Sommers, & Graves, 1982; Robinson, 1982; Upshur, 1982). There are very few empirical studies that examine the impact or outcomes of respite care. No randomized controlled trials were found in the literature. Three effectiveness studies were identified and are described below.
Botuck & Winsberg (1991) used a before-after design to measure the impact of a pre-planned 10 day out-of-home respite program on 14 mothers of children with multiple handicaps. Three standardized measures were used to assess changes in mother's perceptions of their happiness and well-being, their level of depressed mood and their daily activity patterns. Measures were completed pre-respite, during respite and post-respite (4 days later). Significant differences were found in the mother's reported happiness and well-being during the respite period, as well as marked changes in their activity patterns. The increased level of well-being was sustained after the end of the respite period; however, the differences in activity patterns and level of depressed mood were not statistically significant between pre- and post-respite measurements. Although limited by the small sample size and lack of a control or comparison group, this study represents one of the few effectiveness studies that has used established outcome measures and systematic procedures.
Rimmerman (1989) used a cohort design and matched mothers of children with developmental disabilities who participated in an in-home respite program with a comparison group of mothers who also needed respite services, but had no access in their community. The respite services were provided by professional caregivers for a minimum of 6 hours per week in the child's home for a period of 18 months. A total of 53 mothers participated, 28 respite users, 25 non-users. A standardized measure (The Questionnaire on Resources and Stress, Friedrich et al., 1984) assessing parent and family problems, parental pessimism, and parental perception of the child's characteristics and physical incapacities was administered before the respite service began and at 6, 12 and 18 months. The results yielded statistically significant differences between the two groups with mothers in the respite group showing lower stress levels and more positive views of their children. This study is the only one where a comparison group was used. Although group assignment was not random, the authors were careful to match the two groups on many baseline characteristics.
Sherman (1995) studied the impact of an in-home respite service provided by skilled nursing staff for 73 families of medically fragile children. In a before-after design, families were interviewed at intake and after 6 months in the program using two measures of family stress and parent well-being. Frequency of emergency room visits for the child and hospitalizations were also measured. The amount of respite service received by each family was documented to control for a dosage effect. The study confirmed that families caring for a medically fragile child are more stressed than a normative sample and exhibit more symptoms associated with stress such as anxiety, depression and somatization. Significant effects of the respite program were found in lowered sibling strain and reduced somatization. Unfortunately, a number of families were lost to follow-up and the final sample size (26) does not allow for other conclusions to be drawn. Trends towards a decreased number of hospitalizations were associated with increased use of respite services, but again, those results are inconclusive.
As cited earlier, there are a number of reports in the respite literature that provide information on satisfaction with particular services and programs. While all of these studies report high levels of satisfaction amongst most of the participating families, they are not generalizable and have typically used "home grown" satisfaction questionnaires and interviews. Potential sources of bias have not been well-controlled in these studies.
There is clearly a need for more rigorous evaluation of the effectiveness of respite services. Benefits for the child and for the family have not been well-studied and the question of economic benefit has not been addressed at all in the literature. While the majority of families who have participated in respite appear to have been satisfied with the services received, there are many outstanding questions about respite models, service delivery options, parent preferences, the amount of services that produces positive effects and effectiveness.
Intagliata (1986), in a review of outcome studies on respite services, has proposed an evaluation framework to formulate the important questions regarding effectiveness of respite services. His framework begins with the assumption that respite services are needed, but recognizing that empirical evidence is limited, focuses the evaluation efforts towards "identifying those factors, both internal and external to the program or service that facilitate or inhibit it in making its intended impacts" (p.264). This question, in combination with studies evaluating effectiveness and economic impact, would provide meaningful evidence upon which to build effective services for families. This model recognizes the complexities of the issue, the variety of variables which must be taken into consideration and the range of outcomes to be measured.
From the available literature it is clear that respite services are an important resource to families with a child whose problems of health or development impose extra caregiving demands over many years. Parents want, need and appear to benefit from respite, and want choice in what is available to their families. Clearly, however, much remains to be learned about the optimal ways of providing such services and at what cost for what benefit. There is little evidence about the effectiveness of respite services that can assist policy makers in formulating respite care programs. Research focused on the differential effects and costs of specific models of respite services could provide one part of the information required for these important policy decisions.
The literature on respite services for children and families is primarily descriptive in nature. There is ample evidence of the need for respite and the variety of models available. Parent preferences, characteristics of respite users and non-users, and parent satisfaction with particular programs have also been well-described in the literature. What is missing are empirical studies that examine the effectiveness of respite programs, the factors which impact on effectiveness, and the economic benefits of the provision of an accessible, flexible, and co-ordinated system of respite services.
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