Concept of quality of life of families of people with learning disabilities develops in research

family on beach

This review of the literature sets out to look at developments in concepts and measures of family quality of life. The authors identify a developing trend from interventions for people with learning disabilities based solely on the individual’s special needs independent of the family and environmental context through to a position where these needs are seen in a broader family and environmental context.

They suggest that the family was not seen in disability research as a unit of study until the 1940s. They point out though that the success of an increased role for families relies on assumptions by policy makers that most families are both able and willing to act as the main caregivers and decision makers and that a focus on conceptualising and researching family quality of life seeks to address whether or not these assumptions are correct.

They suggest that whilst families have always found ways to support and care for persons with disabilities, the literature focuses on highlighting the negative aspects of caregiving and on the dysfunctions of the family unit, although this is changing, with a clearer understanding of the nature of partnership and the need to involve and include families in planning and implementation of plans.

They conclude by identifying four main goals of systematic family quality of life initiatives as

1 to provide empirical information on the FQOL

2 to inform disability practitioners about the potential use of FQOL instruments to plan family-centred intervention plans

3 to stimulate researchers to conduct larger-scale studies to validate previous work on FQOL

4 to challenge policy makers to evaluate service provision models and legislation in the light of the FQOL approach.

Review: The development of family quality of life concepts and measures, Samuel, P et al, in  Journal of Intellectual Disability Research, 56: 1–16.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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