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Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions.

Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community.

Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective.

The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved.

The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

The purpose of this paper is to outline the development of a training package for service users and carers with an interest in NHS health and social care research. It demonstrates how the developers used their unique experience and expertise as service users and carers to inform their work.

Service users and carers, NHS Research and Development Forum working group members, supported by health professionals, identified a need for research training that was tailored to other service user and carer needs. After reviewing existing provision and drawing on their training and support experience, they developed a training package. Sessions from the training package were piloted, which evaluated positively. In trying to achieve programme accreditation and training roll-out beyond the pilots, the group encountered several challenges.

The training package development group formed good working relationships and a co-production model that proved sustainable. However, challenges were difficult to overcome owing to external factors and financial constraints.

Lessons learnt by the team are useful for other service users and carer groups working with health service professionals. Training for service users and carers should be designed to meet their needs; quality and consistency are also important. The relationships between service user and carer groups, and professionals are important to understanding joint working. Recognising and addressing challenges at the outset can help develop strategies to overcome challenges and ensure project success.

The training package was developed by service users and carers for other service users and carers. Their unique health research experience underpinned the group’s values and training development.

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.

This paper reports on action research which explored assertive outreach service users’ experiences of community participation and then fed this learning into a multi‐agency forum – where it was used in joint‐planning between mental health services and community partners, aiming to maximise social inclusion locally.

Action research methodology was chosen to examine the forum's work because it brings together different perspectives to reveal an issue in its entirety and effect change in practice. Service users’ experiences were explored using semi‐structured qualitative interviews.

Engagement in mainstream community‐based activities re‐connected service users with cherished life roles and developed feelings of self‐efficacy, belonging, and wellbeing. Effective inter‐sectoral working in the forum was based on a shared agenda and collective action planning.

Whilst every effort was made to ensure an authentic service user voice informed service development, it is unfortunate – in action research terms – that no service user interviewees were able to participate directly in the work of the forum. Community development work can build on micro‐level, person‐centred mental health care and extend outwards to collective community activity, aiming to harness social capital.

Assertive outreach – harnessing mainstream occupations through care‐planning – achieved outcomes that institutional rehab could not, and did so with a minimum of stigmatisation.

This inquiry highlights that social inclusion is the responsibility of the community as a whole.

This inquiry appreciated service users as evaluators of the services they used and aimed to bring that knowledge to bear on service development.

A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines.

PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project.

The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation.

The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

The purpose of this paper is to present a focused viewpoint of coercion in psychiatry from the perspective of a survivor and activist.

This paper takes elements from and builds on three recent conference and seminar presentations presented in France and the UK in 2014: International Congress on Clinical Ethics Consultation 2014, Paris: Comité Européen Droit Ethique et Psychiatrie, June 2014, Perpignan and Royal College of Psychiatrists’ Annual Congress, London 2014.

Coercion in psychiatry runs counter to the highest human rights standards, rules out genuine care and profoundly undermines trust.

Additional research from a user and survivor experience would offer a different and more grounded perspective of how coercion is actually exerted and experienced through, for instance, a narrative approach.

The paper is proposed from the viewpoint of a survivor of psychiatry and human rights activist. It is a contribution towards a more user/survivor oriented discourse in this area.