Challenges of Social Care Research

Martin StevensChair Social Care Research Ethics CommitteeSenior Research Fellow, Social Care Workforce Research Unit, King’s College LondonAssociation for Research Ethics Conference14/11/2014

Challenges of Social Care Research

• Definitions• Contexts• Sources of ethics review• Ethics topics• Future direction

DefinitionsSocial 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’

Researchthe attempt to derive generalisable new knowledge by addressing clearly defined questions with systematic and rigorous methods (Research Governance Framework for Health and Social Care)

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

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

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)

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 ) –

Source: Health and Social Care Information Centre, Provisional data

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

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

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)

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

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 2nd wave• Limited infrastructure – no ‘social care levy’ or funding for

developing research regulation or training

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)

Social Care Research Ethics Committee• Part of Health Research Authority (from 1st 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

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.

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.

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

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)

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

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

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

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).

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

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

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.pdf

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

Future?• SCREC to become formally part of HRA from Jan 1st

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

Thanks for listening!

DisclaimerThe 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.uk