Intellectual disability

Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed).

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice. Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia.

Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010).

Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability.

Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies.

Purpose: The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach: Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups.

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing.

Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group.

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment.

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability.