Choice literature review: a review of the literature and consultation on choice and decision-making for users and carers of mental health and social care services

Authors:
WARNER Lesley, et al
Publisher:
Sainsbury Centre for Mental Health
Publication year:
2006
Pagination:
130p., bibliog.
Place of publication:
London

This literature review on choice in mental health was commissioned by the Department of Health in July 2005 and submitted to the Department in January 2006. The main part of the review looked at the English language literature on choice in mental health over the past five years. It aimed to identify in particular what tools there are to help people make meaningful choices; what media are effective in facilitating decision-making; and to what extent methods such as advance directives might be used. The review also included a consultation exercise and an overview of how choice is reflected in national policy and guidance in four other countries.

Extended abstract:
Author

WARNER Lesley; et al;

 
 

Title

A review of the literature and consultation on choice and decision-making for users and carers of mental health and social care services.

Journal citation/publication details

London. Sainsbury Centre for Mental Health, 2006. 130p., bibliog.

Summary

This report is based on a systematically conducted review of the literature published between 2000 and 2005, consultation with service users and staff through focus groups and interviews, and a seminar involving UK and international experts in the field (including service users and carers) which discussed the preliminary findings of the literature review. It finds that, ‘despite examples of good practice, the government’s vision [of choice in mental health care] is still a long way from becoming reality for many people who use mental health services.’ Professional commitment and adequate resources are needed to build on existing good practice and enable all service users and carers to exercise choice in a meaningful way.

Context

The concept of choice underpins much of the reform of the National Health Service, and assumes that giving patients and carers increased choice over the care they receive will empower them, reduce inequalities in access, diversify the range of available services, and drive up standards and quality. This review aims to answer many of the difficult questions raised by the introduction of choice, including: Does it lead to confusion rather than clarity? What information is needed to exercise informed choice? How can services be commissioned to ensure that choice is meaningful? and What happens when people choose badly?

Methods

This section relates to the methods used for the literature review aspect of the report. The review is in the nature of a scoping exercise, with the additional aim of uncovering examples of good practice.

What sources were used?
Librarians at the King’s Fund and the Institute of Psychiatry searched: AgeInfo; ASSIA (Applied Social Sciences Index and Abstracts); the British Library’s integrated catalogue; British Nursing Index; CINAHL (Cumulative Index to Nursing and Allied Health Literature); DH Data; EMBASE (Excerpta Medica); the King’s Fund library catalogue; Medline; PsycINFO; the National Research Register; PubMed; the ReFer research database; and Social Care Online. In addition, the web sites of relevant organisations (identified through published documents, internet searches and links from other web sites) were searched, although the authors accept that ‘inevitably’ these ‘represent only some of the available sources of information’.

What search terms/strategies were used?
The varied nature of the sources searched means that a standard search strategy would have been impossible. Keywords used included: mental health problem(s), mental health disorder(s), learning disabilities, learning difficulties, older people, choice(s), empowerment, participation, decision making, options, advance directives, direct payments. Searches were limited to material published in English since 2000 and relating to the UK, USA, Canada, Australia and New Zealand. ‘A small number of key documents published before 2000 were included.’

What criteria were used to decide on which studies to include?
‘The criteria for inclusion of citations was [sic] kept deliberately broad, to reflect the wide range of services and people with mental health problems, including children, older people, adults of working age, people with learning difficulties, people from Black and ethnic minority (BME) groups, hard to reach populations (e.g. substance misusers, homeless people, refugees) and other traditionally excluded groups, such as people with personality disorders and those with profound and severe learning difficulties.’ The large body of literature on end of life choices for people with dementia was deliberately excluded on the grounds that the authors felt that it fell outside their remit. The aim was to look particularly for examples of good practice, and there were no restrictions on type of document, which range from research studies to policy documents and information published on web sites.

Who decided on their relevance and quality?
The searches delivered 1,708 references, of which 263 were selected for further examination. Over 190 additional references were also found via web sites and ‘personal resources’. ‘A critical appraisal framework was devised’ to select material that was ‘relevant and of high quality’ but this is not reproduced in the report. Nor are specific responsibilities for deciding on relevance and quality discussed. However, this process appears to have included input from the expert seminar convened to discuss the preliminary results of the review.

How many studies were included and where were they from?
A total of 475 publications were examined in detail, of which 392 were used in the review. These are listed in the references to the report, and come from the English speaking countries specified in the inclusion criteria.

How were the study findings combined?
The findings of are presented around a number of key themes, with the final conclusions of the report also encompassing the input from the consultation exercises and expert seminar.

Findings of the review

The findings of the literature review, the consultation with service users and carers, and the expert seminar are separately presented. The review is built around six themes and each chapter follows a common format of: a summary of key points; details of the policy context; information from the literature; examples of good practice; and details of ‘methods, media and tools’ for promoting and enabling choice.

The nature of choice and empowerment
Service user empowerment is ‘a crucial first step towards enabling people to make choices about their health and other aspects of their lives.’ Advocacy and support services can help but only if adequate resources are available and accessible: new access points in venues such as libraries and walk-in centres could help here. A ‘positive commitment’ on the part of professionals towards giving up some of their power is also essential. Better information on options is a high priority for service users, and issues of inequality affecting some groups (those with learning and communication difficulties, or from BME groups) must be addressed.

Treatment choices
It is ‘abundantly clear’ that service users want to be offered more than just medication, and that where this is the treatment of choice they want full information on effects and side-effects. They also want (but do not always get) support if they decide to stop taking medication. In respect of alternatives to medication, they want and need better information and support to enable them to make informed choices about services such as talking therapies and self-management programmes that take into account their ethnicity, gender and culture. Carers also need support to help them make choices on a service user’s behalf. Key points on effective communication about choices include the use of clear, jargon-free language, and the effective use of pictures and symbols. The authors note that the Department of Health’s Booking and Choice initiative has improved access and facilitated choice in areas such as outpatient appointments and referral processes.

Choice in care planning
There is ‘widespread agreement in the literature’ that mental health service users and carers should be fully involved in the Care Programme Approach and Person Centred Planning, and there is evidence to suggest that those who are so involved are more satisfied with the services they receive. ‘However, it is also very clear that currently many service users and carers are not meaningfully involved.’ As with other aspects of choice, help from advocates or support workers may well be needed.

Service planning and delivery
Involving service users and carers in service planning and delivery is not the same as enabling them to make choices about the services they would like to receive. However, without such involvement they can have no impact on the pattern of care provision. The literature suggests that organisational culture and professional resistance often limit involvement, especially by people from BME groups, older and younger people, and people with personality disorders. There are examples of the successful involvement of a range of service users (including people with dementia and people with learning difficulties), but this area ‘is under-researched and under-evaluated’ so that their impact on service planning and delivery is unclear.

Advance directives and advance statements
The literature shows that ‘mental health service users are keen to use advance directives and advance statements to make their wishes known, and they can also be used by people with dementia’. However, adoption in the UK is very slow, with some psychiatrists unconvinced of their value and validity. Support to draw up directives and statements is important if they are to be effective and ‘happily, information and guidance on them is widely available’. Research findings on whether they help to prevent emergency and compulsory admissions to hospital are ‘so far inconclusive’.

Direct payments
Direct payments are ‘potentially available to people with mental health problems and learning difficulties in all age groups, but uptake has been slow. ‘It is clear that staff in some services are not yet committed to supporting service users in using direct payments.’ Support in arranging and managing direct payments ‘is crucial for service users’ – for example to guard against the use of untrained or unsupervised staff – and where this has been provided, service users have been ‘very satisfied’ with the use of this tool to increase choice. However, ‘direct payments are of limited use if there is not a local choice of service providers’.

Results of consultations
The consultations with service users and carers echoed many themes identified in the literature, including the currently limited ability to exercise choice which users attributed in part to professional resistance. Participants were ‘significantly happier with voluntary sector providers than with the statutory sector’, which was seen as failing to provide an adequate range of treatment options or encourage choice. The desire for better information and for advocacy and support to help in exercising choice and participating in care planning was also evident. Individuals from some groups had particular concerns, including those from BME groups who wanted access to culturally appropriate services; people in forensic mental health settings, who felt that their ability to make choices was particularly limited; and young service users who felt that their ability to exercise choice was limited by lack of information and by the focus of services on adult needs.

Authors' conclusions

The authors find that ‘although choice is by no means a reality for many who use mental health services (and the UK is not alone in this) there are clear benefits for service users in pushing forward efforts to increase the choices they have’.

Implications for policy or practice

The focus on good practice means that examples of successful initiatives and approaches are highlighted and documented in each chapter.

Subject terms:
literature reviews, mental health services, service users, social care, social care provision, access to services, carers, choice, decision making;
Content type:
research review
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