Department of Health Programme, 2006-2010: Choice and independence across the lifecourse
Between 2006 and 2011 SPRU’s Department of Health (DH) commissioned research programme examined the key policy issues of choice and independence.
SPRU research team
- Wendy Mitchell
- Hilary Arksey
- Jan Heaton
- Tricia Sloper
There are strong arguments for paying close attention to choice and its links to the experience of independence on the part of disabled and older people. Policy ambitions to increase choice bring new challenges for service users, practitioners and providers alike. In addressing these questions, the programme aimed both to inform policy and to contribute to wider academic debates.
Core programme - a qualitative longitudinal study
At the heart of the programme was a qualitative longitudinal study of disabled young people, working age adults and older people and the choices about services that they made over a three year period as their health and other circumstances changed. The study generated a wealth of insights into the challenges experienced by people making choices about services and support, and the conditions under which both the processes and the outcomes of choices can be optimised. The study also helped to develop researchers’ expertise and capacity in applied qualitative longitudinal studies, which are increasingly recognised as valuable resources for policy research. We are delighted that the Department of Health has agreed to support the archiving of the study data with the Timescapes qualitative longitudinal archive (part of UK Data Archive), thus ensuring this rich data set will become a resource for secondary analysis.
Further choice-related studies
Choice is only possible if information about potential alternatives and the options that people want are both available. Other studies therefore looked at the availability of information about social care; and the challenges that home care agencies face in responding to increased opportunities for choice on the part of service users. We also reviewed the research evidence on how service users, carers and professionals balance the benefits of choice against the potential risks involved.
Other, linked studies investigated the choices that family carers make, particularly when supporting a disabled relative; and [PROJECTS ADDED TO HERE] carers’ own choices about paid work and retirement.
DH required some of its funding to be ring-fenced for ‘responsive’ projects – pieces of work that could be commissioned and completed quickly to meet urgent policy needs. One such study evaluated the Individual Budget (IB) Pilot Projects in 13 English local authorities. Working with four other DH-supported social care research units, SPRU led the national evaluation of these pilots. The evaluation found that people using IBs were more likely to feel in control of their lives, compared with people using conventional services. SPRU also led a linked study of the impact of IBs on carers of service users. Carers of people using IBs also reported benefits for their own quality of life.
A second major ‘responsive’ study examined the longer-term impact of home care re-ablement services. Many English local authorities are developing these services that aim to enhance people’s skills and confidence in looking after themselves and hence reduce their need for long-term home care services. Our research found that people using re-ablement were less likely to need home care for up to a year afterwards than those using conventional home care services.
Other studies linked to the DH programme included reviews of how other countries fund and organise long-term care; these were submitted to government consultations on the reform of English adult social care.
Choice continues to be central to DH policy; to the statutory, private and third sector organisations that implement policy and deliver social care services; and to the disabled and older people needing social care support, and their families. We maintained this focus throughout the core DH-funded programme and our ‘responsive’ research. Moreover, this focus offered an organisational foundation and body of expertise for related research commissioned by other funders; these additional studies have ‘added value’ to the DH programme funding.
The programme was rated ‘excellent’ on many counts by independent academic referees who were asked by DH to review the programme. Reviewers commented on the ‘commendable array’ of publications arising from the programme; its ‘significant’ and ‘impressive’ impact on health and social care policy; and particularly commended the use of programme funding to develop skills and expertise in qualitative longitudinal research.
As well as academic outputs, the DH programme built on SPRU’s long-standing commitment to disseminating research managers and practitioners within local authorities, Primary Care Trusts, third sector and user organisations, using social and digital as well as conventional media.
Projects funded from the main DH Programme grant:
- Welfare consumerism, disability and social care
- Understanding the dynamics of decision-making and choice about social care and related services
- Choice and change: extending choice and control over the lifecourse - a qualitative longitudinal panel study - new
- Domiciliary care agencies' responses to increased user choice - new
- Transition to adult services of disabled young people leaving ‘out of authority’ residential schools
- National evaluation of the Individual Budgets (IB)Pilot Projects (IBSEN)
Responsive mode projects:
- Access to information about social care – response to recommendation from the Better Regulation Task Force - new
- Review of research on risk and social care - new
- Individual budgets (IBSEN): impact and outcomes for carers
- Home care re-ablement services: investigating the longer-term impacts (prospective longitudinal study)
- Investigating the longer-term effects of home care reablement services (retrospective longitudinal study)
- Reforming long-term care: lessons from other countries
- Scoping review of research on interventions to support carers
Projects linked to the DH programme
- Knowledge review on outcomes-focused services for older people and their carers
- Examining the dynamics of choice: the context for informal care - new
- Carers' aspirations and decisions around work and retirement
- Carers and asset management for older people
- Respite care for frail older people: an appraisal of effectiveness and cost effectiveness
- Care provision within families and its socio-economic impact on care providers
Glendinning, C. [et al.] (2012) Choice and Independence over the Lifecourse: Final report to the Department of Health, Social Policy Research Unit, University of York, York.- DH Programme - Final Report (PDF , 337kb)
Details of the numerous reports, journal articles and presentations given over the course of the research programme are available on the web pages for each individual project, see the links above. A full bibliography for the programme as a whole is available from section 6 of the final report available to download above.