Recommendations for research
The Guideline Committee has made the following research recommendations in response to gaps and uncertainties in the evidence identified from the evidence reviews. The Guideline Committee selected the key research recommendations that they think will have the greatest impact on people's care and support.
What is the lived experience of older people with social care needs and multiple long‑term conditions?
While there was some evidence on the experiences of older people with social care needs and multiple long‑term conditions, there were gaps in relation to people's lived experience of how such conditions impact on their life in their own words. Research could be qualitative, ethnographic or could use cross‑sectional surveys using open‑ended questions to gather views and experiences, in particular on:
the experiences of older people in the UK living with multiple long‑term conditions and how their conditions affect them over time and at different stages of their life
how a person's multiple long‑term conditions interact with each other and how this affects the person over time
the priorities, meanings and preferences of older people living with multiple long‑term conditions.
Which models of service delivery are effective and cost‑effective for older people with social care needs and multiple long‑term conditions?
There was a lack of evidence about different models of support provision for older people with social care needs and multiple long‑term conditions. There is a need for robust evaluations of different approaches to service delivery comparing, for example:
models led by different practitioners
different team structures
the components and configurations of models
barriers and facilitators to the implementation of models.
Outcomes could include social care‑ and health‑related quality of life, satisfaction, carer's health, number of unpaid care hours provided and health and social care resource use. Outcomes and service use should be measured over 1 or 2 years to enable assessment of the health and economic impact of different models of service delivery in the short and longer term.
What is the most effective and cost‑effective way of supporting older people with social care needs and multiple long‑term conditions in care homes to live as independently as possible?
There is a need for robust evaluation of different interventions for supporting older people with social care needs and multiple long‑term conditions in care homes. The Committee thought it particularly important to ensure that future studies evaluate how people living in care homes can best be supported to participate in social and leisure activities. This is important given that views data, Committee members' experiences and expert witness testimonies indicated that people living in care homes can feel particularly isolated and unable to take part in activities of their choice.
A range of study designs could be used, including randomised controlled trials, quantitative and qualitative evaluations of different packages of social and leisure activities, and their impact on social care‑ and health‑related quality of life, satisfaction and participation in and experience of meaningful social and leisure activities.
What is the effectiveness and acceptability of different strategies to enable positive risk‑taking in care homes?
The Committee noted that people take informed risks as part of normal everyday life, but for older people who need support, their ability to take these risks can be limited. Helping older people exercise choice and control, therefore, relies on a 'risk positive' approach. The Committee identified a gap in the literature about what works well in care homes in this respect. Studies are needed to explore different types of approaches to managing risk in care homes, for example looking at:
organisational, operational and individual‑level approaches to risk‑taking in care homes
the views and experiences of people using care home services and their carers
barriers and facilitators to risk‑positive approaches in care homes.
What is the impact of different early intervention‑focused approaches to self‑management on outcomes for older people with social care needs and multiple long‑term conditions?
The Guideline Committee highlighted a lack of evidence on the impact of different approaches to self‑management, particularly those aimed at helping older people with social care needs and multiple long‑term conditions to continue living independently for as long as possible. They highlighted the need to understand better the type of interventions and strategies available, and then to evaluate their effectiveness in terms of the impacts on outcomes for older people and their carers.
Future research should compare different approaches to self‑management and their impact on social care‑related quality of life and wellbeing in addition to physical health, acceptability and accessibility. It should also look at the views, experiences and potential impact on carers.