Respite care for families of children with severe handicaps: An evaluation study of parent satisfaction

Abstract

Respite care services provided by foster parents to 68 children with severe handicaps between 1976 and 1979 were systematically studied to determine parent satisfaction. A variety of rest options were made available to the parents of handicapped children for purposes of revitalizing themselves to deal with their child's daily needs. The respite options included short periods of time varying from 2 to 15 consecutive days, i. e., taking a much needed vacation, a week‐edn or two a month off, a few days off during the week, or time away from the child due to an emergency. Consumer satisfaction was measured by survey questionnaires developed specifically for respite care and mailed to parents of handicapped children who had used the service. Results indicated that consumer opinion acquired via the follow‐up questionnaire method was extremely positive, A most important consideration was to collect data on scheduled intervals about children subsequently receiving care from the same program to determine whether ratings increased or decreased. By focusing on specific respite care activities over time, it was possible to align optimum versus actual satisfaction. Through an analysis of observer variance, the modification of documented weaknesses can decrease the difference between optimum and actual consumer satisfaction levels.

The Impacts of short break provision on families with a disabled child: an international literature review

“…Ten cross‐sectional surveys looked at the views of users of short breaks, some of which included users of more than one type of short break (Ptacek et al 1982, Joyce et al 1983, Rimmerman et al 1989, Gerard 1990, Stalker & Robinson 1994, Preece 2000, Neufeld et al 2001, Robinson et al 2001, Radcliffe & Turk 2007, Shared Care Network, 2008). Six studies used mixed methods to look at the views of users of short breaks (Oswin 1984, Swift et al 1991, McConkey & Truesdale 2000, Davies et al 2004, 2005, Thompson et al 2009).…”

“…Generally, studies looking at the views of family carers regarding short breaks indicate that parents consider short breaks to be of benefit to the child (Ptacek et al 1982, Gerard 1990). Specific reported benefits include: providing the first opportunity they have had to mix with non‐disabled children (Oswin 1984); gaining in social skills, maturity and capacity for independence, including learning to separate from parents (Stalker 1988); getting new experiences and the child being happier due to attention from short break carers who have more time to spend with them (Baxter et al 1991); the opportunity to socialise outside the family (Sherman 1995); exposure to new stimuli and interests, increased social awareness and the development of social skills, development of friendships with hosts’ children, growing independence from the family, and increased confidence (Swift et al 1991); enjoyment and the chance to do activities they would not have done at home (McGill 1996); socialising with others, new environment or activities, building a relationship with short break carers, and the disabled child having a break (McConkey et al 2004); enabling children to experience new activities, opportunities for the child to mix with others, giving the child a break from parents, and preparing them for adult life (Tarleton & Macaulay 2002); the opportunity to interact socially with others in a different environment, enjoyment, getting used to being away from home, becoming more independent, and being able to go on outings and join in different activities that they could not do at home (McConkey et al 2004); facilitate social and recreational opportunities (Forde et al 2004); opportunities for social communication (Openden et al 2006); meeting other young people and increasing confidence (McConkey 2008); opportunities to make friends, develop social skills, take part in social activities, learn independence skills, and make their child happier (Shared Care Network, 2008); and opportunity to meet children outside the family and school, increased social skills, and increased opportunities to participate in leisure activities in the community (Wilkie & Barr 2008).…”

Parental stress associated with caring for children with Asperger’s syndrome or autism

“…Child‐related stressors include the disorder‐related characteristics and the severity of symptoms such as the child’s adaptability to their physical or social environment, the demanding behavior of the child, 12 ambiguity of the symptoms, 8,13 dependency and lifelong care 14 . Family resources and supports or aggravations include factors such as the long process and delay in obtaining a diagnosis, 15 availability of social support, 16–18 social understanding and acceptance, 19 financial issues, 20 and family cohesiveness and changes in lifestyle 8,21,22 such as lower marital satisfaction and greater marital discord and social isolation 23,24 . Finally, the personality characteristics of parents include a lower control locus, 25 lower levels of self‐esteem, 26 difficulties in accepting the child’s diagnosis, 27 parental perceptions of the child as being less attractive, intelligent or appropriate than desired, 12 gaps between parental expectations for self‐help and independence and the child’s achievement, 8 and parental vulnerability to mental health problems, 28 including depression 29,30 …”

Perceived changes in well-being of parents with a child in a therapeutic toddler class☆

“…Stress among parents of disabled children is related to psychosocial problems, social isolation and, a decrease in psychological well-being (Breslau, Staruch & Mortimer, 1982;Anstey & Spence, 1986;Singer & Irvin, 1989;Miller, Gordon, Daniele & Diller, 1992). Various forms of services have been reported to reduce parents' perceptions of stress (Apolloni & Triest, 1983;Joyce, Singer & Isralowitz, 1983;Rimmerman, 1989;Stalker & Robinson, 1994;Honig & Winger, 1997) and enhance their perceptions of well-being (Cohen, 1982;Ptacek et al, 1982;Marc & MacDonald, 1988;Botuck & Winsberg, 1991). Examples are respite care services and in the Netherlands the therapeutic toddler class (De Moor, Buijsen & Oud, 1998).…”