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…

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…

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…

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)

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…

The author suggests three major factors which tend to influence stress on parents and potential marital problems associated with rearing a handicapped child: (1) Support received from family or significant others, (2) Periodic respite care, and (3) Counseling service sought early in the traumatic experience. Cited are studies showing parental…

Two surveys, one qualitative and one quantitative, were conducted of the opinions and experiences of New York State parents of children with learning delays and disabilities regarding parental labor force participation, child care options, and preferences in state policies. A total of 141 parents responded to the quantitative survey and 210 to the…

This report describes a model designed to provide family-centered, community-based coordinated services for families and their children with chronic health care needs. The model, which was implemented to serve 208 children over a 5-year period, is based on three key concepts: families should have the choice to receive services in their homes and…

This longitudinal study inventoried the types of services accessed by a sample of Alberta families of children with or at-risk for disabilities. We explored the role of severity of disability, parental stress, and family income on services accessed. With few exceptions, services were accessed more frequently as the children's lives progressed but…