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Article
Publication date: 10 June 2019

Virginia Minogue, Mary Cooke, Anne-Laure Donskoy and Penny Vicary

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…

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Practical implications

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.

Originality/value

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.

Details

International Journal of Health Care Quality Assurance, vol. 32 no. 5
Type: Research Article
ISSN: 0952-6862

Keywords

Article
Publication date: 12 June 2017

Virginia Minogue and Anne-Laure Donskoy

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…

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Practical implications

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.

Originality/value

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.

Details

International Journal of Health Care Quality Assurance, vol. 30 no. 5
Type: Research Article
ISSN: 0952-6862

Keywords

Article
Publication date: 17 June 2013

Anne-Laure Donskoy and Rosemarie Stevens

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…

Abstract

Purpose

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”.

Design/methodology/approach

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.

Findings

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.

Practical implications

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.

Originality/value

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.

Details

Ethnicity and Inequalities in Health and Social Care, vol. 6 no. 2/3
Type: Research Article
ISSN: 1757-0980

Keywords

Article
Publication date: 16 August 2013

Jon Fieldhouse and Anne‐Laure Donskoy

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…

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Research limitations/implications

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.

Practical implications

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

Social implications

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

Originality/value

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

Details

Mental Health and Social Inclusion, vol. 17 no. 3
Type: Research Article
ISSN: 2042-8308

Keywords

Article
Publication date: 9 March 2015

Katherine Pollard, Anne-Laure Donskoy, Pamela Moule, Christine Donald, Michelle Lima and Cathy Rice

A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains…

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Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Originality/value

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.

Details

International Journal of Health Care Quality Assurance, vol. 28 no. 2
Type: Research Article
ISSN: 0952-6862

Keywords

Article
Publication date: 15 June 2015

Anne-Laure Donskoy

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

Abstract

Purpose

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

Design/methodology/approach

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.

Findings

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

Research limitations/implications

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.

Originality/value

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.

Details

International Journal of Human Rights in Healthcare, vol. 8 no. 2
Type: Research Article
ISSN: 2056-4902

Keywords

Content available
Article
Publication date: 16 August 2013

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Abstract

Details

Mental Health and Social Inclusion, vol. 17 no. 3
Type: Research Article
ISSN: 2042-8308

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