Current and Future Concerns of Older Parents of Sons and Daughters With Intellectual Disabilities

Abstract

Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, undertook pilot interviews with a sample, and then used the resultant qualitative data to form the quantitative component of the study. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included "small option homes" and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.

Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary

“…In a Canadian study, Weeks et al . () used interviews ( n = 43) to examine current and future concerns of ageing family carers of older people with ID. The authors found that the main concern expressed by participants was worry about the future followed by financial concerns, appropriate housing and care options.…”

Domains of planning for future long‐term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives

“…In some cases, that parenting role can span up to seven decades (Ryan, Taggart, Truesdale‐Kennedy, & Slevin, ). Research has shown that many parents and siblings feel anxiety about the long‐term care plans for their adult relative with IDD (Davys & Haigh, ; Davys, Mitchell, & Haigh, ; Freedman, Krauss, & Seltzer, ; Weeks, Nilsson, Bryanton, & Kozma, ). Previous research has found that caregivers in this group are likely to be socially and economically disadvantaged and at greater risk than most to develop serious health issues (Black & McKendrick, ; McConkey, ; Ryan et al, ).…”

A Review of Canadian Mental Health Research on Intellectual and Developmental Disabilities

“…Not surprisingly, parents of adults with IDD report behavior problems as a consistent predictor of poor adjustment and cite major concerns regarding long-term planning for accommodation, future support, guardianship, and the need for more formal supports in the community (Minnes & Woodford, 2004;Minnes, Woodford, & Passey, 2007;Weeks, Nilson, Bryanton, & Kozma, 2009). Parents of adults with IDD may differ from parents of youth with IDD in terms of the types of services they need and receive and the barriers to such service use .…”