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Article
Publication date: 3 September 2019

Camilla Malm, Stefan Andersson, Håkan Jönson, Lennart Magnusson and Elizabeth Hanson

In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a…

Abstract

Purpose

In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

Design/methodology/approach

A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations.

Findings

Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy.

Research limitations/implications

Limitations included the relative lack of male carer participants and the convenience sample.

Practical implications

Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement.

Originality/value

There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

Details

International Journal of Sociology and Social Policy, vol. 39 no. 7/8
Type: Research Article
ISSN: 0144-333X

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Article
Publication date: 1 April 2008

Anna Tickle and Clark Davison

The training of future mental health professionals offers one avenue of change to improve service user and carer involvement in mental health services. This study looked…

Abstract

The training of future mental health professionals offers one avenue of change to improve service user and carer involvement in mental health services. This study looked at experiences of trainees on the University of Surrey's Clinical Psychology Doctorate programme in involving service users and carers on training placements. Twenty trainees completed a self‐report semistructured questionnaire providing qualitative data that were analysed using thematic analysis. A number of benefits of service user and carer involvement in training were identified as well as practical considerations, including factors that might facilitate or limit such involvement on training placements. It is intended that the findings will prove useful to others involved with the training of mental health professionals.

Details

The Journal of Mental Health Training, Education and Practice, vol. 3 no. 1
Type: Research Article
ISSN: 1755-6228

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Article
Publication date: 14 December 2015

Eleanor Bradley

The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service…

Abstract

Purpose

The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Design/methodology/approach

The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Findings

Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Research limitations/implications

Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Practical implications

Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

Social implications

The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

Originality/value

This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

Details

Mental Health Review Journal, vol. 20 no. 4
Type: Research Article
ISSN: 1361-9322

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Article
Publication date: 16 September 2011

Marjorie Lloyd, Liz Lefroy, Stephen Yorke and Richard Mottershead

It is generally agreed that carers in mental health care play a vital role in helping people to maintain their place in the community and reducing the time clients spend…

Abstract

Purpose

It is generally agreed that carers in mental health care play a vital role in helping people to maintain their place in the community and reducing the time clients spend in hospital or residential settings. The purpose of this paper is to develop a conceptual approach to involving carers in higher education by acknowledging their contribution to improving practice and identify the impact upon student learning in mental health and social care professions.

Design/methodology/approach

A brief review of the policy and literature on involving carers in mental health services and education explored the historical and current influences upon practice. This was then applied to the experience of the authors when teaching nursing and social work students in a higher educational setting and evaluated as developing outcomes in carer involvement practice.

Findings

Relationships between carers and students in health and social care may be created in higher education settings that can develop supportive, informative and recovery‐focused care in practice. Creating such relationships in the higher educational setting helps students to prepare for developing relationships with carers in practice.

Originality/value

Involving carers in education may improve outcomes in recovery for the client and carer experience and the development of professional and self awareness skills in students. Developing involvement practices in higher education begins the process early in the experience of health and social care students, providing a safe environment in which to master such skills.

Details

The Journal of Mental Health Training, Education and Practice, vol. 6 no. 3
Type: Research Article
ISSN: 1755-6228

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Article
Publication date: 16 September 2013

Helen Kara

– The aim of the research is to assess the extent and value of mental health service user (MHSU) involvement in research in England.

Abstract

Purpose

The aim of the research is to assess the extent and value of mental health service user (MHSU) involvement in research in England.

Design/methodology/approach

This is a knowledge review, including academic and “grey” literature, and documented testimonial evidence.

Findings

The involvement of MHSUs in mental health research has become mainstream. There is clear evidence that involving MHSUs in research adds value. Four gaps in the literature were identified. First, a lack of evidence from non-service-user researchers about their experience of working with MHSUs. Second, a lack of recognition that anyone involved in research may hold more than one role. Third, failure to treat carers as separate from MHSUs, or – often – to include them at all. Fourth, a lack of understanding that MHSUs may have a useful role to play in research on topics other than mental health.

Research limitations/implications

The literature would benefit from some evidence about non-service-user researchers’ experiences of working with MHSU researchers. Carers should be recognised much more widely as different from MHSUs and with a valid role to play in mental health research from their own perspectives. MHSU researchers, and carer researchers, should be offered opportunities for involvement in research on topics other than mental health.

Practical implications

The evidence shows that involving service users in research can benefit everyone involved and the research itself. The process can be challenging for all concerned. However, there is now plenty of guidance about how to involve service users in research for maximum benefit to all (e.g. Faulkner, 2004b; SURGE, 2005; Morgan, 2006; Tew et al., 2006; Kotecha et al., 2007; Schrank and Wallcraft, 2008, pp. 243-247; Leiba, 2010, pp. 160-169; Armes et al., 2011; Morrow et al., 2012, p. 114). This guidance should be consulted by researchers, funders, ethics committees, and other stakeholders at the earliest possible stage of any relevant project.

Social implications

It is essential to recognise and acknowledge that anyone involved in research may hold more than one role. Embracing multiple and mutable identities is not an easy process, as the literature shows, and attempts to do so are likely to produce resistance at every level. Nevertheless, the example of the survivor researchers suggests that doing this has the potential to enrich our individual and collective experience, and therefore society as a whole.

Originality/value

The paper is written by an independent researcher who is also a carer for people with mental health problems: a viewpoint which is rarely found in the literature. The literature suggests that power imbalances and identity issues are at the root of most difficulties and gaps. Social identity and categorisation theory offers a useful theoretical perspective. The paper will be of value to anyone interested in mental health research, whether as a student, service user/survivor, researcher or teacher.

Details

Journal of Public Mental Health, vol. 12 no. 3
Type: Research Article
ISSN: 1746-5729

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Abstract

Details

Mental Health Review Journal, vol. 11 no. 1
Type: Research Article
ISSN: 1361-9322

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Article
Publication date: 10 December 2009

Joanna Fox

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across…

Abstract

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.

Details

Mental Health Review Journal, vol. 14 no. 4
Type: Research Article
ISSN: 1361-9322

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Article
Publication date: 2 September 2013

Axel Kaehne and Chris Catherall

There has been considerable discussion about the benefits of health and social care integration over the last decade but less research on the purpose and effectiveness of…

Abstract

Purpose

There has been considerable discussion about the benefits of health and social care integration over the last decade but less research on the purpose and effectiveness of carer and user involvement in service changes and service evaluation. The paper aims to report the findings of a study of two learning disabilities services in Wales that undertook co-location in a children development centre.

Design/methodology/approach

The study investigated whether carers of children with learning disabilities had any knowledge of organisational changes that occurred as a result of co-locating services. The study used a mixed method approach. The authors conducted semi-structured interviews with all parental representatives on the service planning groups and then asked local staff to facilitate a survey to parents of children with learning disabilities in their area.

Findings

Carers in both locations were mainly unaware of any changes, unless they were personally involved in service changes through advocacy or parental support groups. Carer responses mainly reflected national debates, such as service cuts, rather than the local context. Whilst there was significant support for co-location in general, parental views differed considerably on the merits of service changes depending on the needs of their own child.

Originality/value

These results caution against assuming a simple pathway from parental views of local services to defining service needs to plan new services. The authors argue that parents lack sufficient knowledge of organisational changes to make an informed decision on whether these changes would bring about service improvements. Implications for research and professional practice are spelled out.

Details

Journal of Health Organization and Management, vol. 27 no. 5
Type: Research Article
ISSN: 1477-7266

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Article
Publication date: 20 June 2016

Helen Kara

– The purpose of this paper is to assess the impact of a mental health carers’ research reference group on mental health research in the Heart of England region.

Abstract

Purpose

The purpose of this paper is to assess the impact of a mental health carers’ research reference group on mental health research in the Heart of England region.

Design/methodology/approach

The methodology was a co-produced participatory evaluation, and the research was co-produced by the group. The design involved a literature review of carersinvolvement in UK mental health research, and collection of secondary data (group records) and primary data from researchers, group members, and facilitators. Analysis was initially thematic, then synthesised.

Findings

The group’s work had a positive impact on researchers and group members, and to some extent on mental health research and networks more widely. No negative impact was identified.

Research limitations/implications

The researchers were not able to contact or include everyone who had been involved with the group. Some of those who did not give input may have felt less positive about the group than those who did respond. Co-production does not signify equality. Evaluation inevitably involves bias.

Practical implications

The conclusion is that mental health carers have a unique and positive contribution to make to mental health research, and have the right to be involved in such research in a non-tokenistic way. This has practical implications for mental health and mental health research services.

Originality/value

This is the first mental health carer-controlled evaluation of a mental health carer research reference group. Mental health carers conducted the research and wrote this paper, giving a perspective rarely found in the literature. This has value for people working in, studying, and researching mental health, and for other mental health carers.

Details

Journal of Public Mental Health, vol. 15 no. 2
Type: Research Article
ISSN: 1746-5729

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Article
Publication date: 10 May 2013

Heidi Emery, Bridget Jones and Eddie Chaplin

This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both…

Abstract

Purpose

This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.

Design/methodology/approach

Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.

Findings

This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.

Originality/value

This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 7 no. 3
Type: Research Article
ISSN: 2044-1282

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