Hearing the voices of people with high support needs

Abstract

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 wellbeing 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 caregivers 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. Hearing the voices of people with high support needs AbstractThe British charity, The Joseph Rowntree Foundation, commissioned a study to explore the needs and aspirations of older people who for whatever reason require a high degree of assistance. The ultimate aim was to develop a model to enable older people to identify and express their needs and aspirations which could be utilized in future research. This article describes how in developing that model, the voices of older people with high support needs were heard, and what they had to say. The study explored the personal aspirations of a small sample of hitherto un-researched people living in different parts of the UK. The twenty-three participants aged over 60, eleven of whom were aged over 85, varied in terms of ethnicity, health status, social care needs, financial status and lifestyle. Many were receiving input from statutory health and social care services and all were perceived 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. Results included commonalities of aspiration in relation to physical, social and psychological aspects of participants' 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. Often negotiation can produce simple and cost-effective ways of addressing individual aspirations and improving quality of life.

‘Holding on to life’: An ethnographic study of living well at home in old age

“…They showed remarkable resilience to manage the losses they had experienced throughout their life and in developing new relations (Nicholson, Meyer, Flatley, & Holman, ). Similar findings emerged in another study conducted in the UK, which highlighted that older persons accepted that some of their aspirations might not be realistic (Katz, Holland, & Peace, ). A Swedish study aimed at exploring frail older persons' experiences of health found that feeling assured and capable was of central importance to participants' sense of well‐being.…”

The experience of daily life of acutely admitted frail elderly patients one week after discharge from the hospital

“…Nicholson, Meyer, Flatley, Holman, and Lowton ( 2013 ) described how the frail elderly experienced loss of autonomy and functional capacity, but they also reported creativity in handling the shortcomings from a life with frailty. Other studies exploring the experience of daily life of community-dwelling frail elderly showed that their experiences varied, but at the same time it seemed that the frail elderly in general experience different kinds of struggles in relation to management of daily life (Haak, Malmgren Fange, Iwarsson, & Dahlin-Ivanoff, 2011 ; Katz, Holland, & Peace, 2013 ; Tollén, Fredriksson, & Kamwendo, 2008 ; Van Campen, 2011 ; Ebrahimi, Wilhelmson, Eklund, Moore & Jakobsson, 2013 ; Ebrahimi, Wilhelmson, Moore & Jakobsson, 2012 ; Nicholson, Meyer, Flatley, Holman & Lowton, 2012 ).…”

‘I'm happy that I can still walk’ – Participation of the elderly in home care as a specific group with specific needs and wishes

“…Nevertheless, our research shows that the physical and cognitive limitations, especially the difficulties of dealing with an ageing body in daily activities, provide the main barriers to discuss quality of care. This corresponds with the findings of Katz, Holland and Peace, namely that elderly persons with high support needs are most concerned with getting through the day.…”