Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study's aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for…

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities…

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children.…

A cohort of nearly 11,000 persons was traced over 8 years to determine those who had moved from family care and those who had remained. The majority (85%) continued to live with families, and, for two thirds (67%), no future move was deemed necessary. The 2 main predictors of moving were as follows: A need had been previously recorded and the…

Background: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are…

Research-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or…

Respite care services have been linked to variety of positive outcomes for caregivers and families alike. The purpose of the current study was to examine the association of receiving respite care with academic achievement for children with disabilities across time. The study employed a nationally representative sample of children to examine this…

Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…

Two-thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., "National Intellectual Disability Database Committee Annual Report 2006," Health Research, 2007). Use of respite care services by parents with a child/adult with an…

In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

Background: Respite or short breaks are frequently sought by parents and demand for them usually exceeds their availability. Methods: Using data from a national database in Ireland of around 16 000 persons living with family carers, the availability of overnight respite provision was monitored over an 8-year period along with the recorded needs…

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,…

Purpose: Although it is widely recognized that caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems, little is known about how caregiving stress may be alleviated among underserved ethnic minority populations. The purpose of this study was to compare a complementary and…

Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed…

Background: This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997. Method: A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.…