Multiple stakeholders' perspectives on patient and public involvement in community mental health services research: A qualitative analysis

Yamaguchi, Sosei; Abe, Makiko; Kawaguchi, Takayuki; Igarashi, Momoka; Shiozawa, Takuma; Ogawa, Makoto; Yasuma, Naonori; Sato, Sayaka; Miyamoto, Yuki; Fujii, Chiyo

doi:10.1111/hex.13529

Cited by 8 publications

(5 citation statements)

References 40 publications

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“…Using these methods to encourage participation from the other Universities in the study may also increase the diversity of the SAG. There is also work to be done reducing the stigma of mental health, which may be especially important in recruiting more male members [ 8 ]. Other studies of including young people in development of mental health services have cited different methods, such as anonymous forums, or ‘think aloud’ activities, as ways to get those engaged who may otherwise not wish to take part [ 23 ].…”

Section: Discussionmentioning

confidence: 99%

“…While the importance of public involvement in research is well established, involvement in mental health research has its own challenges. Stigma, burden, and differing expectations as to research scope can all constitute barriers to participation [ 8 ]. Indeed, research into co-production of young people’s mental health services highlights the need to allow young people with mental health needs to discuss their own experiences within the collaborative space [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

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Assessing the impact of university students’ involvement in the first year of Nurture-U: a national student wellbeing research project

Dooley,

Ghezal,

Gilpin

et al. 2023

Res Involv Engagem

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Background Students experience lower levels of wellbeing than the general, age-matched population. A whole-university approach to mental health is encouraged, which must work for individuals from all backgrounds and experiences. Student input is vital in researching and designing these solutions. Nurture-U is a national, large-scale research project exploring better ways to support student wellbeing, with a Student Advisory Group (SAG) that feeds into project decision making. With the first year of the project now completed, we now critically review the processes and effectiveness of the SAG and how well the project is engaging and working with students. Methods Assessment of the SAG’s impact on the project, the student advisors, and the researchers was undertaken through a content analysis of team meetings and collection of advisor and researcher feedback using the Patient Engagement Quality Guidance Tool. Results 142 students worked on different tasks in the first year of the Nurture-U project. The SAG was involved in the project branding and marketing, and in the development and co-design of interventions and tools. They reported a positive experience, with involvement boosting confidence. They felt valued but reported not always knowing whether their input was implemented in final decisions. They also recommended different methods of providing feedback. Researchers found student input beneficial to communicate the viewpoint of a different generation and increase the relevance of the study, but also suggested improvements for communication between the research team and the student group. Conclusions This critical reflection of the SAG’s public advisor role in this large-scale research project was important in highlighting what worked well and areas to improve. As the project unfolds, we aim to adapt our methods of student input, increase the transparency of decision-making processes, and in turn increase student-led decision making within the project.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Assessing the impact of university students’ involvement in the first year of Nurture-U: a national student wellbeing research project

Dooley,

Ghezal,

Gilpin

et al. 2023

Res Involv Engagem

View full text Add to dashboard Cite

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“…Family members can also be included in definitions of lived experience, given the important role they can play in supporting a loved one. Defining lived experience as inclusive of family members would enable family members to represent loved ones whose lived experience has prevented them from achieving academic credentials, while also bringing learnings drawn from the process of supporting and caring for a loved one with lived experience 23,24 . While important, family member contributions should not supersede the voices of people who have personally and directly experienced mental health conditions.…”

Section: What Is Lived Experience?mentioning

confidence: 99%

Embedding lived experience into mental health academic research organizations: Critical reflections

Hawke

Sheikhan

Jones

et al. 2022

Health Expectations

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Background: As part of a growing emphasis on engaging people with lived experience of mental health conditios in mental health research, there are increasing calls to consider and embed lived experience throughout academic research institutes. This extends beyond the engagement of lay patients and also considers the potential roles of academic researchers with lived experience. When the lived experience of academic researchers is applied to academic work, there is the potential to improve the relevance of the research, while destigmatizing mental illness within academia. However, there are different and often contrasting perspectives on the way a lived experience academic researcher initiative should be implemented.Objectives: This article describes some of the key issues to be considered when planning an initiative that leverages and values the lived experience of academic researchers, including the advantages and disadvantages of each potential approach.Discussion & Recommendations: Institutions are encouraged to reflect on the ways that they might support and value lived experience among academic researchers. In developing any such initiative, institutions are encouraged to be transparent about their objectives and values, undertake a careful planning process, involve researchers with lived experience from the outset and consistently challenge the stigma experienced by academic researchers with lived experience.

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“…In many Western countries, in recent decades, patient participation has been a milestone in the health sector. The introduction of patient participation has given patients a new identity as active and decision-making participants in care [1,2]. Existing research shows how patient participation can be understood from different perspectives.…”

Section: Introductionmentioning

confidence: 99%

“…The healthcare system can be perceived as a company that is governed by a new public management way of thinking. The healthcare system must offer services to the customers (patients) and they must be involved and engage in their treatment so that they achieve as much self-care as possible and become independent of professional help [2,14,15].…”

Section: Introductionmentioning

confidence: 99%

Healthcare Professionals’ Experiences with Patient Participation in a Mental Healthcare Centre: A Qualitative Study

Jørgensen

Hansen²,

Andersen³

et al. 2023

IJERPH

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Introduction: Patient participation is a cornerstone of the debate concerning healthcare professionals and patients of mental health centres. It constitutes an objective in government health policy in Scandinavia and other Western countries. However, little is known about the experiences of healthcare professionals in mental healthcare practices involving patients under their treatment and care. Objective: This study aimed to explore the experiences of healthcare professionals with patient participation in the context of a mental health centre. Methodological design: Four focus group interviews with healthcare professionals reflected differing experiences with unfolding patient participation in clinical practices in four wards of a mental health centre. A content analysis developed and framed themes. Results: Patient participation was based on structural conditions, which shows that predetermined structural methods predominantly control involvement. The structural methods are seen as promoting participation from the patient’s perspective. At the same time, the methods also enable taking account of the individual patient’s wishes and needs for involvement. Discussion and conclusion: This study illuminates the meaning of patient participation in a mental health centre based on the social interactions among nurses and other healthcare professionals. The approach can contribute to dealing with the challenges of incorporating patient participation as an ideology for all patients in a psychiatric context, which is important knowledge for healthcare professionals.

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Multiple stakeholders' perspectives on patient and public involvement in community mental health services research: A qualitative analysis

Cited by 8 publications

References 40 publications

Assessing the impact of university students’ involvement in the first year of Nurture-U: a national student wellbeing research project

Assessing the impact of university students’ involvement in the first year of Nurture-U: a national student wellbeing research project

Embedding lived experience into mental health academic research organizations: Critical reflections

Healthcare Professionals’ Experiences with Patient Participation in a Mental Healthcare Centre: A Qualitative Study

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