‘Dignity and respect’: An example of service user leadership and co‐production in mental health research

Faulkner, Alison; Carr, Sarah; Gould, Dorothy; Khisa, Christine; Hafford‐Letchfield, Trish; Cohen, Rachel; Megele, Claudia; Holley, Jessica

doi:10.1111/hex.12963

Cited by 22 publications

(31 citation statements)

References 35 publications

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“…Once co‐design commences, the main priority is to ensure that all participants are treated equally in the process. 18 , 19 , 52 Power relations within these interactions can manifest easily often because of where the co‐design occurs. 32 , 37 The space and place where the co‐design occurs are often overlooked.…”

Section: Process Of Involvementmentioning

confidence: 99%

Mitigating unintended consequences of co‐design in health care

Shé

Harrison

2021

Health Expectations

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Background Co‐design and associated terms are increasingly being used to facilitate values‐based approaches to health‐care improvement. It is messy and complex, involving diverse actors. Methods We explore the notion that initiatives have outcomes other than initially planned is neither new nor novel but is overlooked when thinking about co‐design. We explore some of the unintended consequences and outline some optimal conditions that can mitigate challenges. Discussion Although co‐design approaches are being applied in health care, questions remain regarding its ability to produce gains in health outcomes. Little is known about determining whether co‐design is the most suitable approach to achieve the given project goals, the levels of involvement required to realize the benefits of co‐design or the potential unintended consequences. There is a risk of further marginalizing or adding burden to under‐represented populations and/or over‐researched populations. Conclusion Undertaking a co‐design approach without the optimal conditions for inclusive involvement by all may not result in an equal partnership or improve health or care quality outcomes. Co‐design requires on‐going reflective discussions and deliberative thinking to remove any power imbalances. However, without adequate resources, a focus on implementation and support from senior leaders, it is a tough ask to achieve. Patient or Public Contribution This viewpoint article was written by two academics who have undertaken a significant amount of PPI and co‐design work with members of the public and patient's right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.

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Section: Process Of Involvementmentioning

confidence: 99%

Mitigating unintended consequences of co‐design in health care

Shé

Harrison

2021

Health Expectations

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“… 10 Documents are considered by a group of reviewers with a facilitator, and are returned within 7 working days. Patient involvement has been contested despite the supports for co-production, 11 , 12 so it is essential to understand whether there is an impact. Several potential measures are unexplored that affect whether someone has informed consent, such as readability and jargon.…”

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confidence: 99%

How to make study documents clear and relevant: the impact of patient involvement

et al. 2021

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Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who review research documents at the beginning of the research pipeline. Aims To investigate the impact of the FAST-R service, and to provide researchers with guidelines to improve study documents. Method A mixed-methods design assessing changes and suggestions in documents submitted to the FAST-R service from 2011 to 2020. Quantitative measures were readability, word count, jargon words before and after review, the effects over time and if changes were implemented. We also asked eight reviewers to blindly select a pre- or post-review participant information sheet as their preferred version. Reviewers’ comments were analysed qualitatively via thematic analysis. Results After review, documents were longer and contained less jargon, but did not improve readability. Jargon and the number of suggested changes increased over time. Participant information sheets had the most suggested changes. Reviewers wanted clarity, better presentation and felt that documents lacked key information such as remuneration, risks involved and data management. Six out of eight reviewers preferred the post-review participant information sheet. FAST-R reviewers provided jargon words and phrases with alternatives for researchers to use. Conclusions Longer documents are acceptable if they are clear, with jargon explained or substituted. The highlighted barriers to true informed consent are not decreasing, although this study has suggestions for improving research document accessibility.

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“…This was significant for investigating a highly sensitive and potential distressing topic and led to high recruitment and retention rates and improvement in data quality (Faulkner et al, 2019). The findings were grounded in service-users' perspectives to help inform their practical application (Nichols et al, 2003;.The findings from phase 1 are published elsewhere (Carr et al, 2019), as are the detailed methodological aspects of this user-led study (Faulkner et al, 2019). This paper reports solely on findings from Phase 2.…”

Section: Methodsmentioning

confidence: 97%

Practitioner perspectives on service users experiences of targeted violence and hostility in mental health and adult safeguarding

Hafford‐Letchfield

Carr

Faulkner³

et al. 2020

Disability & Society

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People with lived experience of mental distress experience high rates of targeted violence and hostility based on their mental health status. This user-led study explored practitioners' perceptions and experiences of supporting service users in these challenging situations and considered the role of adult safeguarding. Six focus groups with practitioners (n=46) enabled them to respond to data documenting service user's experiences. This process facilitated knowledge exchange between the research team and practitioners on the ground. The findings illuminate a complex picture where lack of effective structures and processes mitigate against service users in these difficult situations. Practitioners need to invest in trusting relationships, to optimise resources and actively help service users with lived experience of mental distress to find their own solutions. These should involve collaborative empowerment whereby feelings of isolation and rejection can be replaced with hope, a sense of agency and belief in personal control.

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‘Dignity and respect’: An example of service user leadership and co‐production in mental health research

Cited by 22 publications

References 35 publications

Mitigating unintended consequences of co‐design in health care

Mitigating unintended consequences of co‐design in health care

How to make study documents clear and relevant: the impact of patient involvement

Practitioner perspectives on service users experiences of targeted violence and hostility in mental health and adult safeguarding

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