Co-research with People with Mental Health Challenges

Spies, Rebecca; Ennals, Priscilla; Egan, Rebecca; Hemus, Philippa; Droppert, Kathryn; Tidhar, Michael; Simmons, Magenta; Bendall, Sarah; Wood, Tom; Lessing, Kate

doi:10.1007/978-3-030-89594-5_138

Cited by 4 publications

(6 citation statements)

References 33 publications

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“…Spies et al (2022a, 2022b, 2022c) findings were reinforced by the outcomes of the current study, which found that young people valued the supportive role that the RFUP played in facilitating positive relationships with their workers. Furthermore, the findings of this study support outcomes described by the YYRs report that young people learn to become experts of themselves via valuing diverse knowledge (Spies et al , 2022a, 2022b, 2022c). The RFUP, by valuing the young persons’ own expertise and knowledge, facilitates a process whereby young people gain a deeper understanding of themselves.…”

Section: Discussionsupporting

confidence: 72%

“…A recent report describing the practice approach and outcomes for the MHCSS’s YRR service (Spies et al , 2022a, 2022b, 2022c) highlighted the importance of relational factors between young people and workers. Spies et al (2022a, 2022b, 2022c) findings were reinforced by the outcomes of the current study, which found that young people valued the supportive role that the RFUP played in facilitating positive relationships with their workers. Furthermore, the findings of this study support outcomes described by the YYRs report that young people learn to become experts of themselves via valuing diverse knowledge (Spies et al , 2022a, 2022b, 2022c).…”

Section: Discussionmentioning

confidence: 99%

“…A limitation of the co-design is that – despite two peer researchers recruited to be involved – at most stages of the research process there was only one consumer LE voice actively involved. Involving multiple consumer perspectives would enhance future projects to ensure diverse representation (Spies et al , 2022a, 2022b, 2022c).…”

Section: Discussionmentioning

confidence: 99%

“…Capability of the other researchers in the team was also enhanced through increasing understanding of appropriate language, accessibility of language – for example use of acronyms – and challenging unconscious bias. “Co-research builds the capacity of researchers to listen, and to understand the personal and systemic barriers that prevent diverse voices from being heard” (Byrne and Wykes, 2020, as cited in Spies et al , 2022a, 2022b, 2022c). Co-research is a generative approach that values and builds the knowledge and expertise of consumers and researchers alike (Slay and Stephens, 2013; Roper et al , 2018; as cited in Spies et al , 2022a, 2022b, 2022c).…”

Section: Methodsmentioning

confidence: 99%

“…The service setting of the study reported that numerous young people have co-occurring mental health and AOD issues (Spies et al , 2022a, 2022b, 2022c). The service assists service users to explore their substance use from a position of positive regard (Spies et al , 2022a, 2022b, 2022c). This study aimed to use qualitative methods and co-design principles to gain an in-depth understanding of consumer experiences.…”

Section: Introductionmentioning

confidence: 99%

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Coproduction in evaluating a dual diagnosis tool with youth in a residential mental health service

Kroes

Myers

McLoughlan

et al. 2022

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Purpose The purpose of this study was to utilise a lived experience (LE) informed/co-designed approach to explore the service-user experience of using the reasons for use package (RFUP) within a youth residential rehabilitation mental health setting. Design/methodology/approach LE researchers (those who have lived through mental illness or distress), Master of social work students, a community of mental health service manager, community of mental health researchers, dual diagnosis service researchers and university-based researchers collaborated on the project. The study used an exploratory, qualitative approach of semi-structured interviews to invite young people's experiences of the resource. The research team conducted a collaborative thematic analysis drawing on the range of perspectives. Findings Through five interviews with young people, key themes identified included: client factors and extra-therapeutic events, relationship factors, technique/model factors/delivery and outcomes/things noticed. Practical implications The RFUP was a useful clinical tool with the young people in this pilot as it improved awareness of reasons for drug use and impact on mental health, service user to staff relationship, quality of the resource, mode of delivery and participant self-knowledge. Originality/value Young people valued the supportive role that the RFUP played in facilitating positive relationships with their workers.

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Section: Discussionsupporting

confidence: 72%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Coproduction in evaluating a dual diagnosis tool with youth in a residential mental health service

Kroes

Myers

McLoughlan

et al. 2022

ADD

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Knowledge Families Hold: Co‐Production and Co‐Research With Mental Health Family Carers in Understanding Experiences During the COVID‐19 Pandemic

Walters,

McDonald,

Sheers

et al. 2024

Health Expectations

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BackgroundThrough an in‐depth exploration of mental health family carers' experiences during the COVID‐19 pandemic in Australia, this co‐produced study identified recommendations for advocacy, practice and policy implications to uphold family carer wellbeing. Government‐enforced restrictions, changed service availability and difficulties accessing hospitals, led to additional anxiety, depression and elevated distress, especially for people experiencing mental health challenges before the pandemic. The National Mental Health Consumer and Carer Forum alongside two academic researchers aimed to discern the impact of care provision, levels of distress, unmet needs, challenges and benefits of providing support, across geographic locations and diverse communities.MethodsThis article reports on the survey component of a co‐designed mixed‐methods exploratory study of family carer experiences. A project steering group worked with two academic researchers, members of SWITCH Research Group, Monash University, to develop the 71‐question online survey across 9‐domains.ResultsFamily carers were relied upon to provide support and care when mental health services changed or closed. Carers support more than one person and typically people with daily and high‐level needs. Caring levels increased from 26‐h to an average of 40‐h a week of support provision, with changed roles and increased complexity. Heightened demands became stress‐inducing to the point of mental ill health and suicidality for some family carers.ConclusionGovernment policy and pandemic responses failed to address the financial, practical or emotional resources needed to fulfil the role of care provision and support to unwell and extremely distressed people with new or ongoing mental and psychological ill‐health.Patient or Public ContributionFrom its inception, this project was co‐produced and co‐designed with mental health family carers and service users based on their expertise in understanding their experiences and ways to best explore these to the benefit and wellbeing of families in distress. The academic research partners both have active experience of supporting people with mental health challenges. Through each of the identified phases, lived experience expertise (family carers and service users) co‐designed and co‐facilitated the process. At times leading the process, such as in recruitment strategies, and at other times acting as guides. Guidance was provided by lived experience expertise in reflecting upon the literature review to understand what had been researched internationally and what would be important to understand in Australia. The academic partners advised on the possible processes for data collection, and the lived experience experts decided on the methodology based on that advice. Both the focus group and survey questions were developed and scrutinised from the perspective of the service users and carers in the project team. Difficult conversations were handled with respect, service users within the project team gently addressed areas of enquiry that may suggest stigma or feed into societal stereotypes of people with mental health challenges. Carers were able to consider the wording of questions to still be able to address areas of concern including domestic violence within the family unit and suicide. Dissemination strategies were planned together with the carer and service user representatives being co‐presenters at conferences. The report for submission to the National Mental Health Commission (Australia) was written and reviewed with all partners. A committee of service users and carers, alongside the academic partners, planned the launch of the report in August 2023. The co‐authorship of peer‐reviewed articles has included family carers and service users from the National Mental Health Consumer and Carer Forum.

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Lived Experience as the Basis of Collaborative Knowing. Inclusivity and Resistance to Stigma in Co-Research

Kulmala,

Venäläinen,

Hietala

et al. 2024

International Journal of Qualitative Methods

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Social scientific research has become increasingly aware of power asymmetries and the elitist and exclusive nature of scientific knowledge production. These debates have resulted in more inclusive and participatory research practices. In this article, we focus on co-research, which is a participatory and multi-perspective research strategy that invites the people whom the research concerns to participate as active and influential agents throughout the research process as experts on ‘the studied world.’ Co-research is increasingly being adopted in research involving people who belong to marginalised groups or who face the threat of stigmatisation. Despite its increasing applications, engaging in co-research requires reflection on several methodological and ethical questions that so far have been underexplored in the methodological literature. In this article, we address challenges in practicing inclusion and overcoming power asymmetries in co-research, particularly when it is conducted with people who inhabit societal positions with institutionalised stigma and whose participation in research is usually highly limited. In this article, building on our own experiences from different co-research projects—with care leavers, experts-by-experience with a history of crime and mental health recoverers—we aim to contribute to this literature by specifically focusing on issues of inclusion of co-researchers who face the need to negotiate with institutionally stigmatised positions. We suggest that reflexivity on positionalities and attending to plurality in identity work could provide a fruitful tool for increasing inclusivity in co- (and peer) research. We claim that such reflexivity is crucial from the very beginning of a co-research process (including ways of inviting and recruiting co-researchers) because this stage is crucial, as it forms the basis for the following stages and for the possibility of practising inclusion—even if imperfect—throughout the process.

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Co-research with People with Mental Health Challenges

Cited by 4 publications

References 33 publications

Coproduction in evaluating a dual diagnosis tool with youth in a residential mental health service

Coproduction in evaluating a dual diagnosis tool with youth in a residential mental health service

Knowledge Families Hold: Co‐Production and Co‐Research With Mental Health Family Carers in Understanding Experiences During the COVID‐19 Pandemic

Lived Experience as the Basis of Collaborative Knowing. Inclusivity and Resistance to Stigma in Co-Research

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