Family Quality of Life and Older Families

Abstract

This paper highlights the circumstances of older families of adults with an intellectual disability (ID) using scenarios drawn from current research, the practice literature pertaining to older families, and basic tenets of family quality of life as a field of study. Specific issues discussed include the propensity in the literature to emphasize negative aspects of prolonged coresidence of older parents and adults with an ID; evidence‐based practice often dominated by a focus on future planning, particularly in regard to transitions from home, financial issues, and guardianship; and little research or practice identifying a planning process that considers the older family as a whole, taking into account and addressing the needs and concerns of all family members affected by ageing circumstances. Additionally, scant literature on the involvement of family in the lives of middle‐aged and older adults already living in residential services is available to guide practice to successfully maintain family involvement under these circumstances. The author concludes that there is a need to expand evidence‐based practice beyond work with older parents cohabiting with a son or daughter with an ID and future planning, and that a family quality of life approach has the potential to identify proactive strategies that strengthen family relations and actively engage older families in the development of policy and practice.

‘I hope he goes first’: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues?

“…Jokinen & Brown () write from a ‘Family Quality of Life’ perspective and argue that the needs of the family should be given greater consideration. Their research adopts a strength‐based approach which finds that the supporting and strengthening of family relations is key to the continuation of family care (Jokinen & Brown ; Jokinen ). However, the notion that future planning signals an end to family care is contested in the recent publication ‘Valuing People Now: a new 3‐year strategy for people with learning disabilities’ (DH ) where families are reminded and reassured that future planning and leaving home does not mean an end to family involvement; ‘families continue to offer a lifetime of involvement, support and advocacy’ (p46).…”

The impact of disease on family members: a critical aspect of medical care

“…Poston et al 34 define family as ''people who think of themselves as part of the family, whether by blood or marriage or not, and who support and care for each other on a regular basis'', and this definition is thought to acknowledge the diverse social arrangements that may constitute a family. 35 In other studies, the terms ''family'', ''informal carer'', and ''carer'' are used interchangeably. 20,36 For this review, we have taken a broad view of the term family and accepted each authors interpretation as valid.…”

Qualidade de Vida Familiar na Deficiência Intelectual: Revisão Sistemática de Estudos

“…Várias explicações podem ser invocadas para compreender esse interesse crescente. Por um lado, uma abordagem com base na QdVF tem o potencial de unir investigação, políticas e práticas (Jokinen, 2006), oferecendo uma visão positiva e compreensiva para avaliar as famílias de pessoas com DI (Samuel, Rillota, & Brown, 2012). Por outro lado, face à integração de teorias sistêmicas e ecológicas na área da DI, as intervenções individuais têm dado lugar a outras baseadas na família (Leal, 2008), constituindo-se a avaliação da QdVF como uma mais-valia para nortear esse tipo de intervenção.…”