Choice and control for carers: How is personalisation working?

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Much of the focus of the research, policy and practice development concerned with personalisation has been on people who use services. Yet carers (family, friends and neighbours) are also affected by personalisation. This may be in relation to the implementation of some of the mechanisms designed to deliver personalised care and support, such as personal budgets, or to do with carers’ entitlement to their own personalised support.

There still isn’t much evidence on how the opportunity for choice and control ostensibly offered by personalisation is affecting carers. So this paper by fellow elf Mary Larkin and colleague Wendy Mitchell provides a helpful overview of what we know about choice and control for family carers in the context of personalisation. The describe their research as

a literature review of existing knowledge around personalisation and family carers, with particular reference to personalisation’s emphasis on greater choice and control for people who use public services.

This literature review looks at choice for family carers in the context of personalisation

This literature review looks at choice for family carers in the context of personalisation

Method

The authors used a selection of key terms on carers and personalisation to search major social care and health databases, including Social Care Online, Social Policy and Research, Scopus, PsychINFO, ASSIA, MEDLINE, Embase, HMIC and CINHAL Plus. They searched for articles published in English from 2000 until 2014.

They search yielded fifty-four relevant papers, which were then appraised using Critical Appraisal Skills Programme (CASP) tools. The results were recorded on a spreadsheet and thematically analyzed.

Findings

There were six key themes to come from the analysis of the literature, given below with sub-themes:

The concept of choice

The literature fell into two categories:

  • choice for carers being intrinsically positive and
  • choice having the potential to cause stress and regret for carers.

The complexity of choice for carers

The limited literature in this theme highlighted that choice for carers is ‘mulitdimensionsal.’ It concerns a choice about continuing or ceasing caring and choosing which tasks to pass on to a care worker. This can involve continuous weighing up of options over time. The degree to which carers feel they can exercise choice can have consequences for their stress levels, quality of life, health and wellbeing. Organisational and contextual factors can also influence carer choice, and concern about professional attitudes and practices means carers may not feel safe to choose to give up caring for their family member.

Choice for carers in late modern society

The research suggests that there is a tension between personalisation social care policy that is both about individualism and ‘familism’ for carers and about citizenship and consumerism.

Personalisation and choice

The authors note that in recent social care policy, there has been little focus on choice and control for family carers within personalisation in England.

Existing knowledge about carers, personalisation and choice

Carers are still marginalised in existing social care research and practice knowledge about choice in the context of personalisation. However, there are findings on personal budgets, flexibility, responsibility and anxiety for carers as well as factors influencing choice for carers. There are also issues emerging about the potential effects of ‘monetarising’ caring relationships and gender role reinforcement.

Factors influencing choice

The authors found a number of factors that constrain the extent to which carers have choice and control within personalisation as follows:

Information and organisational factors:

  • having sufficient information to make an informed choice;
  • availability and flexibility in the local social care provider market;
  • inequalities concerning capacity and support to navigate complex care systems;
  • the management of personal budgets and care planning.

Frontline practice:

  • uncoordinated assessments between service users and carers;
  • carers not getting the separate assessment they are entitled to.

Carers’ personal experience of personalisation:

  • coping with changes to the caring role;
  • having to make more choices about care and support;
  • ceding control to the service user if they have increased choice and control.
Access to information, the local social care provider market and frontline practice were factors influencing carer choice.

Access to information, the local social care provider market and frontline practice were factors influencing carer choice.

Conclusion

The authors conclude that

The review of the existing literature…indicates that whilst personalisation does afford opportunities for increased carer choice, around who, when and how alternative support is provided to the cared for person, improvements to carers lives are also constrained by a range of factors.

…when identifying ways of improving choice for carers as personalisation becomes more embedded within health and social care, it is important to acknowledge that carers’ personal choice accounts may not always apply the same degree of proof when comparing the ‘old system’ of state provision and the ‘new system’ of personalisation and social care markets.

Strengths and limitations

By assessing existing research, this study identifies an important gap in the personalisation literature on family carers and choice.

As with many social care research papers, the paper would have benefited from more detailed methodological reporting. It isn’t clear how many articles were found in the search and what the inclusion and exclusion criteria were. Did the authors first find hundreds of articles and if so how did they decide on the fifty-four papers they included?

While the authors do not claim to have conducted a systematic review, it would have been helpful to know a little more about the type and quality of literature included in the review. So, how much of the material was empirical research published in peer reviewed journals and how much would be classified as ‘grey literature’? It would also have been useful to know which country appeared to have done the most research on the topic, how much was from UK and how generalisable the emerging picture was. These elements would have given an additional dimension to the research mapping of the topic, which was otherwise well considered in the analysis.

This study identifies an important gap in the personalisation literature on family carers and choice.

This study identifies an important gap in the personalisation literature on family carers and choice.

Summing up

If social care and health practice and policy is to be based in the best evidence, then more investigation is needed into the impact of personalisation and the policy of increasing choice in social care on carers, particularly the family and friends who do the most intensive caring for their relative or friend.

This literature review highlights some important gaps in the knowledge and gives an overview of the emerging areas for further research and for practice development with carers in the context of personalisation and increasing choice over care and support.

Link

Mary Larkin and Wendy Mitchell. Carers, Choice and Personalisation: What Do We Know?. Social Policy and Society, available on CJO2015. doi:10.1017/S1474746415000299. [Abstract]

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Sarah Carr

Dr Sarah Carr is Senior Fellow in Mental Health Policy at the University of Birmingham and was formerly Associate Professor of Mental Health Research at Middlesex University London. She has experience of mental distress and mental health service use and uses this to inform all her work. Sarah is Acting Chair of the National Survivor User Network (NSUN) and a member of the editorial boards of Disability and Society and The Lancet Psychiatry. She is a National Institute for Health Research, School for Social Care Research (NIHR SSCR) Fellow, a Fellow of the Royal Society of Arts and a Visiting Fellow at the School of Social Policy and Social Work at the University of York.

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