Shared Lives is a model of community-based support whereby a person with a disability moves into, or regularly visits, the home of an approved Shared Lives carer after they have been matched for compatibility. It is an established but small service that has been used mainly by people with learning disabilities but which has the potential to offer an alternative to traditional social care for other users.
Supporting people with disabilities in ordinary family homes has a venerable history. So many medieval pilgrims with mental health problems came to the Belgium town of Geel to visit the shrine of Saint Dymphna, who was credited with helping people experiencing mental distress, that there was n o space to accommodate them. Instead, local families took them in as guests (Chen 2016). Even today, about 200 families in the town support 500 people with mental health problems (van Bilsen 2016).
The United Kingdom version of this type of care has more prosaic origins. References to ‘boarding out’ and ‘adult foster schemes’ date from the 1950s. There was another resurgence of interest in the 1970s. This time, they were known as ‘adult placements’. Eventually, in 2008, NAAPS (formerly known as the National Association of Adult Placement Schemes) changed its name to Shared Lives to emphasise the mutuality of the arrangement between the person using the service and the Shared Lives provider (SharedLivesPlus Undated).
Surprisingly, despite their long existence, there has been relatively little research about Shared Lives services or their equivalents. What there is, has mainly concentrated on their main user group, people with learning disabilities. This article marks an important step as it reports on the experiences of older people.
The research took place in two stages. In the first, 12 Shared Lives schemes agreed to send a survey to older people using their service. It collected information about respondents’ age, health, ethnic background, and the type of Shared Lives service they were using. It also asked respondents to rate their overall quality of life (‘very good’, ‘good’, ‘alright’, ‘bad’, ‘very bad’) and their Social Care Related Quality of Life (SCRQoL) using the Adult Social Care Outcomes Toolkit (ASCOT) (Personal Social Services Research Unit Undated). This covers eight aspects (or ‘domains’):
- Control over daily life
- Personal cleanliness and comfort
- Food and drink
- Personal safety
- Social participation and involvement
- Accommodation cleanliness and comfort
A total of 150 replies were received from people using 10 of the 12 schemes, a response rate of 29%.
The second stage involved matching the Shared Lives respondents with people who had completed the Adult Social Care Survey in 2011-2012. This is a national postal survey sent out each year by local councils in England with responsibility for providing adult social care (CSSRs) to people using their services. Using a procedure called propensity score matching (PSM), the researchers were able to generate two matched samples of 121 people who were as similar as possible to each other in terms of their demographic characteristics (age, gender and so on) and their health status.
Overall, 74% of the older people using Shared Lives rated their quality of life as ‘good’ or ‘very good’, 22% as ‘alright’, and 4% as ‘bad’ or ‘very bad’. The average SCRQoL score was 0.84, with a range of 0.22–1.00, with 1.0 representing the ideal for all aspects.
Sixty-eight per cent reported that they were ‘extremely’ or ‘very satisfied’ with their care and support, while a further 24% were ‘quite satisfied’.
In statistical terms, people using Shared Lives services reported a better quality of life than their counterparts completing the Adult Social Care Survey. They also rated their accommodation and food and drink more highly. However, the overall SCRQoL scores were similar for both groups.
The authors conclude that Shared Lives can provide a viable option of support for older people that is consistent with the policy objectives of improving choice and making services more personal. However, at the current time, their users represent a very small proportion of older people using the adult social care services.
Strengths and limitations
This is one of the very few studies that has collected information on older people using Shared Lives. In the absence of a randomised trial comparing Shared Lives users with people receiving ‘usual’ social care services – something which would have been extremely complicated and expensive to arrange – it shows how it is possible to use statistical techniques to produce valuable findings for those commissioning social care and practitioners.
As the authors acknowledge, further work using larger and more representative samples of people using Shared Lives services is needed but this study takes us beyond what we already knew about the high satisfaction levels of people using Shared Lives services into thinking more precisely about why this should be the case.
Overall, Shared Lives schemes seem to have good outcomes for those who meet their criteria, and for whom the service is acceptable. For commissioners in local authorities the data on outcomes will be important when thinking about initiating, sustaining or developing Shared Lives in their areas.
For Shared Lives schemes, this research will enable them to set their distinctive services (to a greater or lesser degree) in a local context and also to draw on firm comparative outcomes. For practitioners, the comparisons provide opportunities to benchmark their own services, especially around choice and control which are areas where Shared Lives outcomes are strong.
The question remains why a service that is generally so well received has remained inaccessible to so many older people using social care. Around 1660 older people are thought to be using the service (SharedLivesPlus 2015). This compares with about 600,000 people aged 65 and over receiving long term adult social care support (NHS Digital 2016). This question is not one that this research was designed to address but anyone concerned with improving the range of options available to people using social care services will want to know the answer.
Callaghan, L., Brookes, N. & Palmer, S. (2017) Older people receiving family-based support in the community: a survey of quality of life among users of ‘Shared Lives’ in England, Health & Social Care in the Community, e publication 29 January 2017, available at http://dx.doi.org/10.1111/hsc.12422 (open access).
Chen, A. (2016) For centuries, a small town has embraced strangers with mental illness, Shots: Health News from NPR, 1 July 2016, accessed 17 March 2017.
NHS Digital (2016) Community Care Statistics: Social Services Activity, England, 2015-16, Leeds, Health and Social Care Information Centre, accessed 17 March 2017.
Personal Social Services Research Unit (Undated) ASCOT: adult social care outcomes toolkit, accessed 17 March 2017.
SharedLivesPlus (2015) The State of Shared Lives in England Report 2015.
SharedLivesPlus (Undated) Our history, accessed 17 March 2017.
van Bilsen, H. P. J. G. (2016) Lessons to be learned from the oldest community psychiatric service in the world: Geel in Belgium. BJPsych Bulletin, 40, 4: 207-211.
- Alan Levine, CC BY 2.0
Jo Moriarty served on the Advisory Group for this project. The role was purely advisory while the study was being undertaken. This article was written after the Advisory Group was disbanded.