Hearing the voices of people with high support needs

This article draws on findings from a study commissioned by the British charity, The Joseph Rowntree Foundation, to explore the needs and aspirations of older people who for whatever reason require a high degree of assistance. The study explored the personal aspirations of a small diverse sample (n = 26) of hitherto un-researched people living in different parts of the UK. Most were over 85 years of age, with varied ethnicity, health status, social care needs, financial status and lifestyle. Many participants were receiving input from statutory health and social care services and were perceived by others and often themselves to have high support needs. Accessible research methods were used to enable participants to specify those factors for well-being most central to their own lives and preferences. The study found commonalities of aspiration in relation to physical, social and psychological aspects of their lives, but also unique descriptions of their individual concerns. In striving to maintain a sense of self worth, participants accepted that some choices were not realistic for them personally. Positive relationships with care-givers were an essential enabler for some. In many cases negotiation has the potential to produce simple and cost-effective ways of addressing individual aspirations and improving quality of life.

► Little is known about the personal aspirations of people with high support needs.
► People with high support needs are primarily older, but may be younger.
► Using a specially modified tool we facilitated discussion about their preferences.
► Participants share some aspirations but differ in others.
► Negotiation should enable people with high support needs to achieve many wishes.