1. Challenges of Social Care Research Martin Stevens Chair Social Care Research Ethics Committee Senior Research Fellow, Social Care Workforce Research Unit, King’s College London Association for Research Ethics Conference 14/11/2014

2. Challenges of Social Care Research Definitions Contexts Sources of ethics review Ethics topics Future direction

3. Definitions Social Care ‘all interventions provided or funded by statutory and/or independent agencies which support older people, younger adults and children in their daily lives, and provide services which they are unable to provide for themselves, or which it is not possible for family members to provide without additional support’ (Social Care Institute for Excellence’ Research the attempt to derive generalisable new knowledge by addressing clearly defined questions with systematic and rigorous methods (Research Governance Framework for Health and Social Care)

4. Organisation of Social Care Local authorities are responsible for running publicly funded social care services Social care provision affected by government austerity programme (Local Authorities have faced 25% cut in four years) The NHS funds some people with high level health needs, to receive social care as well as health services Some social care provided in integrated social care and NHS Trusts

5. Organisation of social care Publicly funded social care is only provided to people Who meet ever rising eligibility criteria (known as Fair Access to Care Services) Who have limited personal financial resources There are many ‘self funders’ - people who pay for care out of their own funds, who are not in contact with local authorities Most social care is provided by independent sector organisations

6. Key themes in social care Personalisation the attempt to provide tailored services – Emphasis on cash for care approaches (‘Self-Directed- Support’, Direct Payments ) Safeguarding Responses to allegations of abuse Efforts to minimise harm Local authority led, multi-agency Procedures Both Safeguarding and offering Self-Directed-Support now statutory duty under the Care Act, 2014 Outsourcing – increasing pressure to outsource all services and some statutory services (including social work)

7. Social care users in England 2013-4 Numbers receiving services = 1,267,000 ‘Self-Directed-Support received by 648,000, 153,000 receive ‘direct payments’ Community based services received by 1,046,000 Residential care received by 204,000 Nursing care received by 84,000 Context of increasing need, but downward trend in numbers using services (29% since 2005/6 – Fernandez et al, 2013 - http://www.pssru.ac.uk/archive/pdf/dp2867.pdf ) – http://www.pssru.ac.uk/archive/pdf/dp2867.pdf Source: Health and Social Care Information Centre, Provisional data

8. Types of needs In England, 685,812 have dementia (Alzheimer’s Society) 2013-4 Up to 70% of people in a care home have a form of dementia (Alzheimer’s Society, 2014a) Dementia UK report 7.1% prevalence of dementia for people over 65 908,000 people have learning disabilities (Learning Disabilities Observatory. 2012), about a quarter of whom are in touch with services

9. Social care workforce 1.52 million adult social care jobs in England (10% of jobs) 1.45 million people (Buchanan et al, 2012) 1,168,000 (72%) Independent sector 141,000 (9%) Local authority 145,000 (14%) individually employed (Source, Skills for Care, 2014) Majority (80%) are women, mean age is 43 Started working in sector around the age of 35 All ages including those aged 65 and over (Buchanan et al, 2012) Tends to be low paid and low status employment

10. Social Care providers 38,900 social care establishments Care and nursing homes – 20,400 Home care and other non residential – 18,500 Most (64%) regulated by CQC 92,000 people employ their own care workers through direct payments (Source: Skills for Care, 2014)

11. Fragmented research context Research undertaken by: Universities eg Academic research units, Private sector organisations, eg NatCen/Ipsos Mori Local authorities Charities, eg Age UK Social work and other students Service users

12. Funding and infrastructure Funding from DH, (Policy Research programme, NIHR), ESRC, Charities (eg Joseph Rowntree Foundation), local authorities Recent investment of £15 million over five years – NIHR School for Social Care Research 2 nd wave Limited infrastructure – no ‘social care levy’ or funding for developing research regulation or training

13. Sources of ethics and other reviews Health Research Authority, NRES Ethics Committees/Social Care Research Ethics Committee University Ethics Committees (for social care research not funded by the DH or involving people who lack capacity) Local Research Governance Association of Directors of Adult Social Services (for studies involving more than three local authority sites)

14. Social Care Research Ethics Committee Part of Health Research Authority (from 1 st Jan 2015) ‘Hosted’ by the Social Care Institute for Excellence Reviews all DH funded social care research Reviews any social care research involving people who lack capacity Health and Social Care Information Centre studies Some research undertaken by local authorities, or others, which raise significant ethics concerns Intergenerational studies involving children but not education or purely child care related research Broader definition of research compared with other HRA committees ie includes research involving only staff

15. Mental Capacity Act Research Key challenge to establish the case for including people who lack capacity we understand little about the experiences of people with these impairments in acute hospital settings. The evidence to date suggests that they are most vulnerable to not experiencing compassionate care. It is vital that we use this study to help understand how to develop compassionate care for this group… The research must benefit participants or people with similar conditions and has to be about the condition itself, its causes or treatment Identifying who assesses capacity – researchers’ responsibilities The role of the ethics committee – sometimes has to interpret researchers’ intentions and encourage them to state what appears to be obvious.

16. Mental Capacity Act Research: Consent – who can be a consultee? Personal – someone who knows the person well, but is not a paid care worker/professional – often a carer Nominated – can be a paid care worker or professional but not involved in the study – eg GP Respect advance decisions in respect of consent or choice of consultee.

17. Mental Capacity Act Research: Gaining consent for people who lack capacity Often confused with Best Interests decision making, which operates for clinical and other decisions Consultee gives an opinion on the presumed wishes of the person, and any knowledge of past and present feelings about research Consultees do not give proxy consent, nor should they consider their own feelings about research Consultee gets an information sheet, mirrors participant information sheets + explains their role Approach for people with fluctuating capacity Respect any indication that the person who lacks capacity is not happy about taking part

18. Mental Capacity Act Research: Methods Appropriate methods – usually not a straight interview Easy-Read materials – to enable as much involvement in decisions as possible Simplified questions Observational studies Use of different communication aids Withdraw participants if they show any sign of distress (and do not try to include them subsequently)

19. Recruitment Evidence of understanding of responsibilities and local hierarchies Eg Owners and managers of care homes Respecting distinctions of roles - eg researcher and social worker Indirect communication Awareness of potential sensitivities of approaching people in distressing or dangerous circumstances Data protection – role of ethics committee not to make legal judgements, but to establish whether there is an ethical approach Awareness of power differentials and pressure to participate – stress voluntary nature of participation Time to decide whether to take part

20. Informed consent Different language and formats for different groups of participants – easy read Multiple information sheets – different methods Make it clear whether participants can consent to different parts of the research (eg interview but not recording) Written consent not always needed Importance of continuous consent Sensitivity to verbal cues about willingness to continue and willingness to respond to them

21. Confidentiality Assume confidentiality as the norm, except for elite interviews Particularly important for social care topics – eg safeguarding Special measures to ensure a private space in people’s homes Sometimes confidentiality sacrificed by participants, who prefer to have carers present in interviews, for example. Limits on quotes and details used Other reasons for breaking confidentiality Need for clarity on limits of confidentiality Distinguishing anonymised and pseudonymised data

22. Minimising distress Social care research can raise very distressing memories, current experiences or create anxieties Approaches are needed to show awareness of this possibility Protocols are needed to show what researchers will do To minimise any potential distress ‘In the moment’ to respond to distress To leave people with sources of support However, it is important that research can cover potentially distressing topics, in order to progress areas of support in difficult areas (eg loss).

23. Safeguarding Researchers have a responsibility to respond if they suspect or are told about abuse We require all research to consider the possibility that this may occur. Researchers need to state what they would do, who they would contact (showing awareness of local safeguarding procedures) Participants need to be aware of the possibility of having to break confidentiality in these circumstances before agreeing to take part

24. User involvement Positive involvement of service users is expected Resourcing the involvement of service users – ie pay for work done Avoiding tokenism – but being open about limits of involvement Care about confidentiality – user researchers Evidence of skill development

25. Research in care homes Time is needed to develop an understanding of the context Researchers need to be aware of impact on staff and relatives in addition to residents Researchers can be present when people are ill or dying. Research is in people’s homes, and can be intrusive Using communal spaces, permissions to enter private areas Limiting observation in respect of personal care, unless this is specifically part of the topic Luff et al (2011) Care Home, SSCR Methods Review No 8. http://sscr.nihr.ac.uk/PDF/MR/MR8.pdfhttp://sscr.nihr.ac.uk/PDF/MR/MR8.pdf

26. Research in care homes Previous experience of working or researching in care homes is and important consideration Culture within the care home will affect how research can be undertaken Feeding back findings to avoid disillusionment

27. Future? SCREC to become formally part of HRA from Jan 1 st 2015 Health Research Authority has begun a consultation to replace the Research Governance Framework The NIHR School for Social Care Research is starting a second five year programme of funding social care research - major influx of studies Further austerity measures likely to affect local authorities social care and publicly funded research

28. Thanks for listening! Disclaimer The views given are my own and do not represent the position of the Social Care Research Ethics Committee, or the Social Care Institute for Excellence Martin Stevens – martin.stevens@kcl.ac.ukmartin.stevens@kcl.ac.uk