Our Older People with Frailty theme aim to develop an intervention (or interventions) which could improve quality of care, quality of life, or service delivery and organisation for community-dwelling older people who are living with moderate to severe frailty. Read more about our Co-production and testing of prioritised interventions’ project here.

Aims

To inform this work, we wanted to identify what is important to older people who are residing in their own home or a care home by:

1. Undertaking a systematic review* of the literature to identify their priorities for research, producing a long-list of priorities.

2. Adapting this long-list into an accessible survey for older people with frailty, their supporters/carers, and health and social care professionals (HSCPs) to: assess their agreement with the identified priorities, find out if there are additional areas that they feel are important, and ask for their opinion on which priorities are the most important.

* Systematic review protocol registered with PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=178149

Progress

This work is complete for older people who are residing in their own homes; the summary below describes our findings for this group. Work is ongoing to identify the priorities of care home residents, their relatives and care home staff.

Summary of work completed

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. The literature review will be published shortly.

Twenty-seven priority areas were included in the survey, which was sent to 141 CARE75+ study participants with moderate or severe frailty who had consented to be approached about other research. Responses were received from 87 people. Those who were willing to be contacted again were sent a ranking survey to prioritise the ‘top 10’ areas identified from the original survey. We then explored the highest ranked items in two discussion groups with older people.

An adapted version of the survey was completed by carers / supporters of older people, and health and social care professionals (HSCPs). Responses were received from 31 carers / supporters and 119 HSCPs.

The top two priorities identified by older people 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

Carers / supporters agreed that these areas were very important.

All three groups agreed that the following areas were particularly important:

• 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

• Making decisions about any care I might need with family or friends, carers and health professionals - so everyone, including me, is involved in decisions about my care

Older people also rated these areas as very important:

• 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 information about my health conditions(s) and symptoms

• Having a better understanding of my health condition(s) and symptoms

• Having more information about what I can do to manage my health or symptoms - for example, having the right diet, staying active

This work will robustly inform the development of interventions that are relevant to older people living with frailty. The engagement from older people exceeded expectations, and comments received clearly show that they value this involvement and want to contribute to change for the better. Carers and HSCPs are also keen to contribute to further intervention development work.