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While the involvement of service users in mental health research has increased, a review of the literature suggests that this apparent increase in involvement does not necessarily coincide with service users having a ‘louder voice’ or greater control over service delivery.The purpose of this investigative study was to explore the barriers and support systems for service user‐led research within a local NHS trust. The study focused on an original research project that set out to be service user‐led by designing and piloting an evaluation tool to measure satisfaction with care planning across the trust. The paper describes a qualitative methodology that captured stakeholder's experiences of why the original project did not reach its intended conclusion. Interviews were conducted with a range of professionals and service users, alongside participant observations of steering group meetings. Data were analysed using a grounded theory approach that led to the identification of key lessons for those intending to involve service users in research in the future. The findings suggest that there are many support systems that can assist service user‐led research, but there are still too many barriers to implementing it effectively; in particular, processes surrounding ethical approval and the stigma attributed to such research by some professional staff.The lessons learned are presented to assist in the education and training of mental health service user researchers or professionals who are conducting research collaboratively with service user colleagues.

This article provides a discussion of the value of user‐led research in mental health, with particular reference to the Strategies for Living project at the Mental Health Foundation.

In this chapter, the author critically examines the relationship between sociology and the identities/experiences of disability and ‘mental illness’ (referred to throughout as distress). The author argues that despite sociology having an ethos of social justice and frequently producing critical accounts of inequalities – such as anti-racism and gender equality – it nonetheless uncritically reiterates the marginalisation of disability and distress. As such, sociology not only reflects the increasing ‘medicalisation of everyday life’ and shores up the essentialist discourses of genetics and neuroscience, but also consigns research and knowledge production about disability and distress to the medical sciences. The author challenges these sociological conventions and highlights the ways in which both disability and distress are socially structured, embodied experiences. The author argues that a sociological account of distress and disability are important not only in and of themselves, but also because they highlight the ways and means to challenge essentialism, inequality and the ever-narrowing definition of what is considered a normal or acceptable part of human experience. Furthermore, vibrant streams of user-led research, activism and practice-interventions – resulting in widespread social, legal and identity transformations – have emerged from the experiences of disability and distress. These user-led perspectives highlight the importance and potential of knowledge produced from the margins, not only for those experiencing disability and/or distress but also for the ways in which we perceive, theorise and research the social world more broadly.

This paper reports outcomes from a holistic, recovery‐based, user‐led group training for people with DSM‐IV bipolar disorder. Drawn from professional therapies and personal experience of the illness by the user‐researcher, the training was delivered over 12 weekly sessions. Using a case‐study approach, an experimental design incorporated pilot (eight participants), main study (five) and control groups (six). Self‐report scales measured mood, coping, empowerment and quality of life pre‐, post‐ and six months post‐training. Semi‐structured interviews noted individual change within the same time frame. Interviews with mental health professionals, medical note analysis and user‐researcher observations also informed the study. Findings from self‐report questionnaires indicated that participants experienced improved mood stability, symptom severity, coping and quality of life and greater empowerment. Out of the six controls, two indicated slight but slow recovery, four continued to use poor coping skills, and two of these four experienced major relapses.

Steve Gillard and Estelle Stacey of Slough User‐Led Consultation (SULC) describe the particular benefits of people with experience of mental health problems undertaking research if the service users being interviewed are to feel able to talk freely and openly about their views and experiences of services

Disabled women are reported to be between twice and five times more likely to experience sexual violence than non-disabled women or disabled men; when these are hate crimes they compound harms for both victims and communities.

This user-led research explores how disabled and Deaf victims and Survivors most effectively resist the harm and injustice they experience after experiencing disablist hate crime involving rape.

Feminist standpoint methods are employed with reciprocity as central. This small-scale peer research was undertaken with University ethics and supervision over a five year period. Subjects (n=522) consisted of disabled and Deaf victims and Survivors in North of England.

The intersectional nature of violence against disabled women unsettles constructed macro binaries of public/private space violence and the location of disabled women as inherently vulnerable. Findings demonstrate how seizing collective identity can usefully resist re-victimization, tackle the harms after disablist hate crime involving rape and resist the homogenization of both women and disabled people.

The chapter outlines inequalities in disabled people’s human rights and recommends service and policy improvements, as well as informing methods for conducting ethical research.

This is perhaps the first user-led, social model based feminist standpoint research to explore the collective resistance to harm after experiencing disablist hate crime involving rape. It crossed impairment boundaries and included community living, segregated institutions and women who rely on perpetrators for personal assistance. It offers new evidence of how disabled and Deaf victims and Survivors can collectively unsettle the harms of disablist hate crime and rape and achieve justice and safety on a micro level.

The purpose of this paper is to present some results of a qualitative study exploring people's memories of the pathways to the first episode of self-wounding. Specifically it will focus on the issue of “suicidality”.

In total, 11 participants, aged between 19 and 50, were described. They were asked to describe their first episode of self-wounding. The interviews were conducted using a semi-structured topic guide. An initial thematic and a subsequent narrative analysis were used to explore the participants’ stories.

The narratives of self-wounding show that the first episode occurs in a complex landscape of interactions between events and emotions. Even when participants were aware of suicidal feelings before self-wounding, the suicidal intention was abandoned as the self-wounding was shown to be an effective method for dealing with distress. For most of the participants the self-wounding was not associated with suicidality but with a strong need to gain or regain control of an emotionally charged and chaotic environment.

Focusing on the first episode of self-harm holds the key to a better appreciation of the underlying meanings of self-wounding as a complex and dynamic experience. It can provide health care practitioners with a new direction to understanding people's individual motivations rather than focusing relying on behaviour generalised assumptions.

This study provides a rare insight into the first episode of self-harm as a unique event. It is also a rare example of publicly funded service-user research with a focus on issues which are meaningful to them.

The purpose of this paper is to describe how an older people’s mental health service involves service users in research and service improvement projects, the value of this work and the ways in which barriers to user-led research have been approached and handled.

The authors conducted a reflective review of their experiences of running “ResearchNet”, a group aimed at putting service users’ perspectives at the heart of service improvement projects, which benefits from and develops its members’ related skills. The authors explore overcoming barriers to service user involvement in research.

This paper identified the following key elements that enabled ResearchNet to overcome barriers which might be found in service user–led research: recruitment processes; identifying research projects; building confidence, sustaining motivation and overcoming setbacks; developing service user’s research skills; keeping multiple views in mind; involving people with dementia; being responsive to group members’ needs; and keeping the group safe.

Oxleas National Health Service is currently looking at integrating with the quality improvement team to provide further structure and training to group members.

This paper explores an under-represented area of research – service user inclusion in older adult mental health research and service improvement. It provides much needed clinical implications for clinicians seeking to increase clients’ involvement in research and service development projects.

In this issue we include profiles of the Ermis database, now available on the net, and the Survivor Research Network. Many of you will already be familiar with Ermis which has for a number of years been providing invaluable information on who's doing what and where in the field of employment and disability, both in the UK and abroad. If you haven't encountered Ermis before, it's well worth a visit to their site. The Survivor Research Network is a user‐led programme that aims to support and promote research led by people with personal experience of mental health problems, and is part of the Mental Health Foundation's Strategies for Living Project.

The purpose of this paper is to examine the role of service user and carer involvement in NHS research and describe the nature of this involvement in three specialist mental health Trusts. It also aims to discuss the value of service user and carer involvement and present the perspective of the service user and research manager.

The paper reviews patient and public involvement policy and practice in the NHS and NHS research. It examines the effectiveness of involvement activity and utilises a case example to demonstrate the impact of patient/service user involvement on the NHS and the individuals who take part.

The paper concludes that service user involvement is essential if research is to support the development of health services that clearly reflect the needs of the service user and impact positively on service quality.

Service user involvement is an established element of NHS research and development at both national and local level. The Department of Health strategy for research, Best Research for Best Health, reiterates both the importance of research that benefits the patient and the involvement of the service user in the research process. Despite this, the changes in Department of Health support funding for research, introduced by the strategy, may inadvertently lead to some NHS Trusts experiencing difficulty in resourcing this important activity.

The paper illustrates the effectiveness of successful patient and public involvement in research. It also identifies how involvement has developed in a fragmented and uncoordinated way and how it is threatened by a failure to embed it more consistently in research infrastructure.