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Children with a chronic illness or disability can encounter many difficulties throughout their lifetimes. Respite care through therapeutic summer day camps is a service used to relieve the physical and mental strains placed on caregivers while also creating unique opportunities to benefit the child. There are gaps in the literature surrounding therapeutic camps and their benefit for the family and their ability to manage the child’s special health care need. The purpose of this study is to determine how respite care in the form of a therapeutic summer day camp for children with special needs impacts a family’s ability to manage their child’s special health care needs within their family. This research study used mixed methodology combining quantitative data collection through pre- and postsurveys and qualitative data collection through interviews that work to answer questions relating to the effects of a therapeutic summer day camp on parents’ perspective and management of their child’s condition. The theoretical framework used to guide the study is the Family Management Style Framework. Twenty-two parents completed The Family Management Measure that was administered prior to and at the conclusion of an 8-week therapeutic summer day camp program. Qualitative interviews with 11 parents helped to better understand specific interventions and experiences of the therapeutic camp that benefitted their child and family. Although the quantitative analysis did not yield statistically significant changes in the family’s ability to manage their child’s condition as a result of attendance at the camp, the qualitative interviews demonstrated robust evidence that the camp provided meaningful experiences for the campers and parents while alleviating stress within the family. Themes that emerged from the interviews include: (1) Family-Child themes of loss of normalcy, relationships affected, increased stress, family adaptations, and love for the child; (2) Camp-Child themes of meets individual needs, creates happiness, and behavior changes; and (3) Camp-Parent themes of improved perception of the child, decreased stress, parent involvement with staff, and need for specific environment at camp. Implications of the results are discussed, along with recommendations for future research.

Autism Spectrum Disorder (ASD) is a developmental disorder known for deficits in language and social skills. It is often associated with maladaptive behaviors. Studies have indicated that these behaviors in children lead to increased stress, anxiety and depression in mothers. This study examines the effects of parent-implemented Positive Behavior Support (PBS) and behavioral activation (BA) on reducing problem behaviors and increasing maternal wellness. The single subject study was conducted with three mothers (between the ages of 30 and 45) and their three children (between the ages of 5 and 7) with autism spectrum disorder. The results of this study demonstrate that while PBS implementation does reduce problem behaviors, it does not significantly impact maternal well-being. Results indicated that two of the three mothers were able to implement PBS interventions and their children demonstrated significant behavioral improvements. These mothers also engaged in high levels of valued activities both at baseline and during intervention and showed few depression symptoms. The third mother was not able to implement the interventions and her child demonstrated little behavioral progress. This mother showed signs of depression and did not make gains in this area. Further research may want to examine the relationship between behavioral activation and respite care, as well as the role of socioeconomic status.

This study compared the relationships among respite care, uplifts, stress, and marital quality across two different groups of caregivers' 102 heterosexual married couples with children with autism spectrum disorder (ASD) and 111 heterosexual married couples with children with Down syndrome (DS). This study also investigated if the effect of respite care on stress and marital quality varied as a function of the amount of uplifts these caregivers experienced. Participants completed self-report surveys. Three two-group Actor Partner Interdependence Models were estimated to calculate the direct, indirect, and partner-effects among these variables. Respite care was not related to stress for either groups of parents, but it was positively associated with husband and wife marital quality for parents of children with ASD. Uplifts were negatively associated with stress and positively associated with marital quality for both husbands and wives with children with ASD, but only for wives with children with DS. Furthermore, when husbands and wives with children with ASD reported more weekly respite hours and daily uplifts, wives tended to report more daily stress. However, as husbands and wives reported less weekly respite care and more daily uplifts, wives tended to report less daily stress. Implications for these findings are discussed.

Parents of a child with a disability are at greater risk than other couples for having higher stress, adjustment difficulties, and lower marital quality. Respite care has been shown to reduce stress in parents of children with disabilities. This study focused on parents who have a child with Down syndrome and their reported marital quality and respite care received. One hundred and twelve couples, each consisting of a mother and a father who lived with their child with Down syndrome, completed questionnaires including the Revised Dyadic Adjustment Scale, Experience in Close Relationships Questionnaire, Daily Hassles and Uplifts Scale, and a respite questionnaire. Results were mixed. Respite care did not predict marital quality for either wives or husbands. However, respite hours was related to wife stress, which was in turn related to wife marital quality. Respite hours was also related to husband stress, which was related to husband marital quality. In addition, wife uplifts was directly related to wife marital quality and to husband marital quality. Husband uplifts was related to husband marital quality. While not directly predicting marital quality, respite care was indirectly related to increases in marital quality through stress. Therefore, it is important that respite care be accessible and provided to parents who have a child with Down syndrome. Recommendations for policy makers and researchers are offered.

The purpose of this study was to explore the utilization of specialized camp services among parents of a child with a disability. This study sought to investigate specialized camp services as respite for families. The data was gathered utilizing a mixed method survey approach. The surveys were distributed to primary caregivers of a child with a disability who have attended Camp Paivika within the past three years. The sample size of this study was 69 respondents. The results show that the family unit benefits by way of de-isolation. The camper increases social skills, confidence, and independence. The caregivers experience emotional stress relief along with an increased ability to connect with other family members. The siblings of the child with a disability experience a relief of responsibilities associated with having a sibling with a disability as well as an ability to partake in family activities they may not otherwise be able to do. In conclusion, this research indicates positive familial benefits to out-of-home recreational respite services, such as a specialized camp services. Future research on the benefits will give the field of social work greater insight into the importance of out-of-home recreational respite.

Video Respite (VR) refers to a series of videotapes designed to engage cognitively impaired individuals so that caregivers can have opportunities for respite. Previous work has evaluated the impact of VR with family caregivers. This study assessed use of VR in special care units (SCUs) for persons with dementia. The foci of the study were 10 SCUs and the individual staff members caring for the residents. The findings suggest VR is more likely to be used in SCUs with relatively higher levels of organization and lower levels of conflict. In addition, resident agitation was found to be significantly lower after VR use. Implications for future evaluation of Video Respite in special care units are discussed. / Graduation date: 1995

Thesis (Ph. D.)--University of Sydney, 2008. / Title from title screen (viewed Nov. 26, 2008) Includes questionnaires. Submitted in fulfilment of the requirements for the degree of Doctor of Philosophy to the Discipline of Medicine, Faculty of Medicine. Includes bibliography. Also available in print form.

Respite care helps caregivers to have a rest and get new energy. Thanks to the respite care, the caregivers can see the sense of their efforts. The theoretical part of my thesis is focused on the old age and aging, on changes in the old age, the population aging and on the self-sufficiency and independency of the elderly. I mention here the definition of social services, the definition of respite care according to Act No.108/2006 Coll. on social services and also the information related to caregivers and to the dignity of the respite care consumers. The objective of the thesis was to survey the forms of care provided and resources of respite care financing in the facilities for the elderly in South Bohemia. In the practical part of the thesis the qualitative research and the polling method were applied.

De nombreuses études ont montré que les Troubles du Spectre de l’Autisme ont un impact significatif surla vie quotidienne de l’enfant et de son entourage, plus particulièrement de sa famille et ses parents. Lesrecherches dans ce domaine se sont donc de plus en plus centrées sur la famille, permettant l’apport deressources, de supports ou de services. En effet, leur rôle dans l’accompagnement de l’enfant est essentiel,et un soutien adapté aux parents c’est également un soutien indirect à l’enfant. Cependant, la disponibilitédes services à destination des parents reste insuffisante, et ces derniers sont très peu associés à la miseen place d’interventions correspondant à leurs besoins, alors qu’ils sont les premiers utilisateurs desdispositifs proposés.L’étude 1 propose la traduction et la validation du Family Needs Questionnaire (renommé Questionnairedes Besoins Familiaux – QBF). Les résultats montrent de bonnes qualités psychométriques, ce quiindique que cet instrument peut être utilisé pour évaluer les besoins des parents d’enfants avec TSA enpopulation française. L’objectif de l’étude 2 est d’explorer les besoins des mères d’enfants avec TSA, enutilisant deux méthodes d’évaluation : une évaluation quantitative grâce à des questionnairesd’évaluation des besoins, dont le QBF, et une évaluation qualitative par des entretiens et une questionouverte. Concernant l’étude 3, il s’agit de comparer les besoins des parents d’enfants avec TSA et desparents d’enfants dysphasiques. Les résultats de ces études montrent que les besoins principaux desparents d’enfants avec TSA sont des besoins centrés sur l’école, centrés sur la vie sociale de leur enfant, etdes besoins en temps de répit. Ces résultats sont retrouvés par l’utilisation des deux méthodesd’évaluation, et ne sont pas retrouvés chez les parents d’enfants dysphasiques, ce qui indique que ce sontdes besoins spécifiques aux parents d’enfants avec TSA. Enfin, l’étude 4 présente une étude longitudinalequi évalue l’impact d’un programme d’interventions à domicile permettant un temps de répit aux parentsd’enfants avec TSA. Aucun impact n’a été trouvé sur les variables évaluant la qualité de vie, bien que lasatisfaction des parents vis à vis de ce programme ait été élevée. / Many studies have highlighted that Autism Spectrum Disorders (ASD) have a significant impact on theindividual’s daily life, and his/her relatives (i.e. family and parents). Research in this area has thereforeincreasingly focused on the family, providing resources, support and services. Indeed, their role in thechild’s support is of prime importance, and appropriate support for carers is also indirect support for thechild. While parents are the primary users of the proposed devices, availability of such services stillremain inadequate, and do not play an important role in the implementation of interventionsStudy 1 aims to translate and validate a French version of the Family Needs Questionnaire (FNQ). Theresults have demonstrated good psychometric validity, suggesting that this instrument is adequate toevaluate family needs in a sample of French parents of children with ASD. Study 2, assesses the needs ofmothers of children with ASD, using the FNG-Fr and the Family Needs Survey. Qualitative measures suchas open questions and semi-structured interviews were also used. Study 3 focuses on evaluation of thefamily needs by comparing parents of children with ASD and parents of children with Specific LanguageImpairments (SLI). School-centered needs, needs for child’s social life and respite time needs were ratedas the most unmet needs by parents of children with ASD. Findings from semi-structured interviews andopen question have also highlight such needs that were significantly different compared to those ofparents of with SLI, suggesting specific needs for parents of children with ASD. And study 4 was based ona longitudinal design for evaluating the impact of an at-home intervention program, allowing a respitetime for the families. While parental satisfaction was high, no impact on variables assessing parents’quality of life was found.