More research needed

We are lucky to be working with some great academics at Kent University’s PSSRU, who are carrying out the first major research into the cost-effectiveness and impact of Shared Lives in recent times. You’ll find summaries of two ongoing pieces of research on our website with Cabinet Office funded evaluations of family carer support and mental health care coming soon. Kent University have also researched outcomes for older people and designed an outcome measuring tool which we’ve made available to all of our member organisations, and which is starting to gather a national dataset of information on the outcomes which people achieve in Shared Lives. A key feature of this tool is that enables people to say whether Shared Lives has a positive, negative or no impact on a number of areas of their lives and wellbeing. I think that being prepared for unintended negative consequences of care and health interventions is a key step towards getting a rounded picture of the contribution that support makes to living a good life. We’re confident that the tool will show the positive impacts that people tell us about constantly, but where there is variation, it will enable us to work with local organisations to improve.

We have just started a conversation with another university about Homeshare, which is also being evaluated by the Social Care Institute for Excellence as part of the £2m Big Lottery and Lloyds Bank Foundation funded national partnership. However, both Shared Lives and Homeshare remain under-researched compared to other sectors. Here are some of the things we’d love to know, or be able to prove, which are not yet being researched:

  1. What are the ‘preventative’ outcomes of Homeshare? How can Homeshare make the most impact upon people being able to live well for longer in their own homes?
  2. The cost-benefit of Shared Lives breaks and day support: most of the research at the moment looks at live-in arrangements, but this is only half of Shared Lives provision.
  3. What motivates Shared Lives carers? Some local organisations have a handful of Shared Lives carers, whilst others have hundreds. Shared Lives schemes appear to experience very small turnover of Shared Lives carers compared to other forms of care. We need to know more about who to reach, how to reach them and what best motivates people to take the huge step of becoming a Shared Lives carers, and to stop. We think we know, but it’s never been ‘properly’ researched.
  4. What impact does Shared Lives have on the rest of the household? We hear lovely stories from the children of Shared Lives carers: it would be great to collect more of their stories and understand their and other family members’ experiences and contributions in more detail.
  5. We know that matches can last a lifetime, but what factors make some matches last decades and what leads to the small number of matches which break down and what happens to people post-Shared Lives? There may be no ‘typical’ length of a Shared Lives arrangement: some people want to use Shared Lives as a stepping stone to their own place and others are looking for somewhere to settle down forever. What goes in to some matches being able to continue even when the individual develops complex health needs: the role of the Shared Lives household but also the local organisation and partner agencies?

Never being lonely

The PSSRU team at Kent University have published their research into Shared Lives for older people, which you can find in Working with Older People, here.

Whilst the study was fairly small (150 people), the results were overwhelmingly positive. They say,

‘Shared Lives would appear a good “fit” with the on-going personalisation agenda .… Most of the respondents cited support from Shared Lives as the reason they felt more independent, due in part to being able to exercise choice and control in a home environment. A surprising number of respondents also specifically highlighted the positive impact Shared Lives had on their mental health and emotional well-being which was exclusively linked to the supportive relationship they had with the Shared Lives carer.’

Being matched with a consistent Shared Lives carer with whom they could have a long term relationship (either visiting regularly for short breaks or living with their chosen Shared Lives carer as part of the household) this increased opportunities for social contact, with “never feeling lonely” explicitly mentioned as a benefit. People regularly described this as life changing: For one participant, Shared Lives means “to have company around me, friends are my life.”

Whilst it was important to people to be able to take part in activities, it was equally important that they were doing them with people they had chosen and now knew well. The authors quote research that shows, ‘Well-being in later life is less about what older people do, but rather of who with and how they feel about them (Litwin and Shiovitz-Ezra, 2006).’

People in the study said:

‘Every day I have activities to go to. Without the support of the family I live with I wouldn’t be able to do this. (female, 68 years old, long-term placement).’

‘Because I have difficulty walking am house bound and the weekly outings give me an opportunity to be in the outside world again. (male, 83 years old, day support).’

Read the full article at Our thanks to Nadia Brookes, Sinead Palmer and Lisa Callaghan and to Working with Older People.

New research on Shared Lives and older people

Our Director of Support and Development, Anna McEwen, writes with an update on the launch of new independent research into Shared Lives for older people from Kent University:

89 year old Betty described Shared Lives as a lifeline, allowing her and her 91 year old husband with Alzheimers to keep their dignity as they aged.  Betty got to know a Shared Lives carer who supported her for a few hours a week.  The Shared Lives carer got to know Betty and her husband which meant that when Betty had to go into hospital suddenly, her husband was able to go and stay with the Shared Lives carer.  This gave Betty peace of mind and her husband a personalised short break with someone who he knew well at a difficult time when his wife and main carer was in hospital.

PSSRU (Personal Social Services Research Unit) at the University of Kent have recently finished a 2 year research project looking at Shared Lives as an option for older people who have social care support needs.  This project was funded by the NIHR School for Social Care Research, and began before Shared Lives Plus offered dedicated support to schemes developing this area of work.  The work was not commissioned by Shared Lives Plus but in response to wider work around personalised services that deliver good outcomes at low cost. It builds on the interest and learning generated by an earlier dementia project led by Shared Lives South West and Innovations in Dementia.

The research consisted of questionnaires sent out to all older people using Shared Lives at the time to get a sense of the quality of life people using Shared Lives were experiencing and their views on the service, and then some more detailed work with 3 schemes.  The questionnaires on quality of life were compared with people using other social care services via the Adult Social Care Survey to establish the quality of life of older people using Shared Lives when compared to other forms of social care.

74% of older people using Shared Lives rated their quality of life as good or very good, and just 4% rated bad. When compared to other forms of social care and average social care quality of life (based on ASCOT), older people using Shared Lives had better overall quality of life on a par with people who do not require social care support.

Barriers highlighted by the research for expansion of Shared Lives for older people included: lack of referrals, lack of awareness of Shared Lives, familiarity with other (more traditional) social care services, budget structures and pressures in local authorities, eligibility criteria, lack of Shared Lives carers with appropriate accommodation and/or skills and perceptions of safety & accountability.

Opportunities for expansion of Shared Lives for older people included: active promotion of Shared Lives, awareness raising to social work teams, specialised training for Shared Lives carers, support from senior managers, Care Bill implementation and evidence of the benefits of Shared Lives.

This research took place at a time when Shared Lives was still a little known option for older and disabled people, and Shared Lives Plus was a tiny organisation supporting the sector.  The samples used to compare quality of life were very small and there were a number of limitations to the research because of this, although the research clearly shows how much Shared Lives is valued by the older people currently using it.

However, if the research was repeated starting in 2014, I think we would start to see a much bigger picture.  Shared Lives Plus has secured funding to offer dedicated support to the sector to develop services for older people in the form of a development officer and production of a series of tools, resources and business cases to support Shared Lives carers, schemes, commissioners and external providers.  This support has kick started a dramatic increase in schemes who are now diversifying to offer support to older people and people living with dementia, and we expect to see the numbers of older people using Shared Lives rise significantly over the coming years.

This research gives us some really useful and interesting baseline information to start from as we seek to support the development of the Shared sector, and the quotes from older people using Shared Lives speak for themselves:

“Being made to feel part of a family gives me confidence, a feeling of being wanted and not alone.”

“Shared Lives gives me something to look forward to and a purpose in life”

“It’s a lifeline, it’s contact, it’s help to live, it’s support and very valuable”

“Living with a couple in Shared Lives keeps me out of hospital.  If I am troubled with anything I can talk about it with my carer who encourages me and completely supports me”