Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

Abstract

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.

Physical and psychological health of family carers co‐residing with an adult relative with an intellectual disability

“…To our knowledge, this is the first study to explore differences in the self‐reported health status of UK family carers living with an adult relative with intellectual disability with general population data. The findings are consistent with previous research conducted outside of the UK (Burton‐Smith et al., ; Seltzer et al., ; Walden et al., ; Yamaki et al., ), which also found carers to report poorer health than non‐caregiving peers. Whilst the findings provide further evidence of health disparities between caregiving and non‐caregiving families, caregivers of people with intellectual disability (both adults and children) also report worse physical health compared to other caregivers, even though they do not attribute their worse physical health to caregiving (Totsika, Hastings, & Vagenas, ).…”

“…Factors associated with negative outcomes for carer well‐being include care recipient having more profound or severe intellectual disability and poorer adaptive behaviours (Chou, Pu, Fu, & Kröger, ; Llewellyn, McConnell, Gething, Cant, & Kendig, ), challenging behaviours (Minnes, Woodford, & Passey, ; Walden, Pistrang, & Joyce, ), the presence of epilepsy (Esbensen, Seltzer, & Greenberg, ; Kerr, Turky, & Huber, ), socio‐economic hardship (Chou, Pu, Kröger, & Fu, ; Eisenhower & Blacher, ) and co‐residency (Seltzer et al., ). Seltzer et al.…”

“…Whilst evidence suggests support and resources moderate the negative effects of caregiving (Chou, Pu, Fu et al., 2010, Chou, Pu, Kröger et al., 2010; Walden et al., ), resources such as financial support, respite and day care services are finite. Therefore, resources are not always available to families, especially in difficult fiscal climates (Cummins, ).…”

Caregiving Experience for Children with Intellectual Disabilities among Parents in a Developing Area in China

“…Todd & Shearn () categorized the parents who feel their ambitions curtailed as ‘captive’ and it was found that these parents reported greater parental stress and pessimism than captivated parents who find purpose and contentment within their parental role (Walden et al . ). This study may provide one potential mechanism that why parents feel captive and more stressful in their caregiving.…”

A qualidade de vida de pessoas com deficiência mental leve

“…Em sua maora, as pesqusas que nvestgam a qualdade de vda de deficentes mentas apresentam a opnão dos cudadores e/ou famlares sobre a pessoa com deficênca ou sobre s mesmos (Cummns, 2002;Hatton & Ager, 2002;Sabaz & cols., 2001;Walden, Pstrang & Joyce, 2000;Walsh, Heller, Schurf & Valk, 2001), encontrando-se um número reduzdo de estudos referentes à opnão dos própros deficentes a respeto de suas vdas.…”