by Liz Graham
The population of older people living with frailty is increasing, and research needs to focus on improving areas of health and wellbeing for this population. To date, there is limited evidence about the research priorities of older people living with frailty in the UK.
Researchers within the Applied Research Collaboration Yorkshire & Humber Older People theme set out to address this knowledge gap. A range of activities have been undertaken to develop this understanding: a comprehensive review of existing literature which informed a survey, which has been completed by older people living with frailty. The overall purpose of this work is to inform the development, and subsequent evaluation, of an intervention to address a topic that matters most to older people. However, it serves a wider purpose, bringing together the existing evidence to inform the research agenda for older people living with frailty.
Our literature review included internationally reported studies from the last ten years, with a broad remit to include priorities and un-met needs for older people. Whilst the review aimed to identify the priorities of those with frailty we also captured broader priorities for older people to inform the survey. Keeping in mind our aim of identifying a priority (or priorities) that could be taken forward for intervention development work for the potential benefit of older people living with frailty, we particularly wanted to identify areas of older people’s health and well-being that were specific and modifiable. Some priorities were clear and specific, for example “how can a fear of falling be addressed?”; whilst others were general, for example “novel models of care”.
We selected 27 priority areas that were deemed sufficiently specific and potentially modifiable to include in the survey. The general questions were not included in the survey. The survey was sent to 141 CARE75+ study (https://www.bradfordresearch.nhs.uk/care75/) participants with moderate or severe frailty who consented to be approached about other research. We were in a unique position, to be able to consult such a large number of people within our target group. The response was very good – 87 surveys (62% of those sent) were completed and returned.
The top two priorities identified by this group were:
- Staying in my own home – living in my own home for as long as I can, with support if I need it
- Staying independent – being able to undertake daily and social activities
Their ‘next top 10’ priorities were:
- Making decisions with family or friends, carers and health professionals about any care or support I might need in the future – so everyone, including me, is involved in decisions about my future care
- Having a range of housing choices, where help is provided if I need it – for example, my own home, sheltered housing, shared living, a care home
- Having more joined up care – so that all my health and care needs are considered together, and I can get the right help at the right time from the right person
- Health and care professionals having a better understanding of the experiences and needs of older people – for example, GPs, hospital doctors, nurses
- Having a better understanding of my health conditions(s) and symptoms – this might include physical or mental health conditions
- Having more information about my health condition(s) and symptoms – this might include physical or mental health conditions
- Having more information about what I can do to manage my health or symptoms – for example, having the right diet, staying active
- Worrying less about falling – for example, having aids to stop me from falling (such as a walking frame), or addressing a fear of falling
- Doing more exercise / physical activity – knowing what I can safely do; having more opportunities to be active
- Having better support for vision loss or impaired vision – for example, help to get the right glasses, better layout of places I visit to make it easier to get around, more understanding from other people.
Work is ongoing to explore these topics in more detail. A ‘top 10’ survey has been sent to older people to rank these areas in order of importance. We have also invited older people to join discussion groups to understand what these priorities mean to them and how they might be addressed to improved their health and well-being. This work will robustly inform the development of interventions that are relevant to older people living with frailty. The engagement from older people has exceeded expectations, and comments received clearly show that they value this involvement and want to contribute to change for the better.
