Globally, families who care for a child or adolescent with disabilities have been found to experience high levels of maternal ill health, stress, depression and family breakdown. In extreme cases, children and adolescents may have to move away from their family to a permanent residential placement. A potentially more appropriate and cost-effective…

Purpose: Increasing demand for autism services is straining service systems. Tailoring services to best meet families' needs could improve their quality of life and decrease burden on the system. We explored overall, best, and worst met service needs, and predictors of those needs, for families of children with autism spectrum disorders. Methods:…

Summer camps are commonly implemented as a psychosocial intervention for children with chronic illnesses; however, there have been few published consumer (parent and child) satisfaction evaluations of summer camps. Such evaluations are important both for improving existing services for children and families, as well as to build an empirical…

This paper analyses the experiences and perceptions of parents and carers with respect to children accessing a variety of leisure activities, as well as short breaks and respite care. The children in question have wide-ranging needs and, for example, will be across the Autistic Spectrum Disorder (ASD). The findings are based upon focus group…

Background: Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful. Methods: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour,…

Children with Special Health Care Needs (CSHCN) represent a significant component of the pediatric population. They often present to schools with multiple and increasingly complex health issues, including medical technology dependency. Their daily variation in health status requires close monitoring and communication among caregivers. Limited…

Background: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. Method: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing…

Very little research has been conducted on insurance type (private vs. public funded) and costs, accessibility, and use of services of children with autism. Analysis of five parent reported outcomes: (a) out-of-pocket expenditures, (b) variety of services used, (c) access to services, (d) child and family service outcomes, and (e) satisfaction…

An article is presented on the "burn-out" of parents, particularly those of autistic children (i.e., the exhaustion of their psychological and/or physical resources as a result of long and intense caring for their children), along with the comments and responses of five parents and professionals. (DLS)

The author, the mother of a cerebral palsied child, considers the conflicts which arise for parents in using respite care. Noted among the reasons why respite care use is difficult for parents are feelings of guilt, conflicts in mothering, self-punishment for having a handicapped child, identification with the child, and separation from the child.…

Results of a survey of 2,800 parents of children with disabilities found that families are essentially pleased with their respite services, but are dissatisfied with the services' lack of flexibility, arbitrary limits on use, inability to respond to crises, lack of parental voice in forming or reforming services, etc. (JDD)

Home based respite care for severely retarded and severely disabled persons was evaluated through questionnaires completed by 91 respite care units over a six month period. Ratings of clients' level of disability were compared to those of clients served in the same region in previous years. Disability levels of clients denied services by the pilot…

A respite care needs assessment survey was completed by 574 Iowa families of children with developmental disabilities. Results documented a void in the availability and accessibility of respite services regardless of demography, income level, or extent of disability. Respondents generally perceived that the availability of respite care service…

A mute autistic boy whose special education in seven programs enabled him to change from a hyperactive destructive child to a pensive lovable teenager gradually adjusted to placement in the Utah State Training School for retarded children during his parent's vacations. (MC)

The project sought to determine the content and form of materials that would enable parents of children with disabilities to become informed critical consumers of respite services. Project activities included establishment and utilization of a national advisory panel; an indepth review of the literature on family supports, systems change, and…