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Lived Experience within Mental Health and Wellbeing Research

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Mental Health".

Deadline for manuscript submissions: closed (31 October 2022) | Viewed by 14643

Special Issue Editors


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Guest Editor
1. Public Health, Policy, and Systems, Institute of Population Health, University of Liverpool, Liverpool L69 3BX, UK
2. Tavistock and Portman NHS Foundation Trust, London NW3 5BA, UK
Interests: gender; parenting; mental health; suicide; self-harm; qualitative methodology

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Guest Editor
Tavistock and Portman NHS Foundation Trust, 120 Belsize Lane, London NW3 5BA, UK
Interests: children and young people’s mental health and wellbeing; perinatal mental health; preterm birth; life course health and wellbeing

Special Issue Information

Dear Colleagues,

We are organising a Special Issue entitled “Lived Experience within Mental Health and Wellbeing Research” for the International Journal of Environmental Research and Public Health.

The inclusion of lived experience within mental health research has been prioritized in recent years, acknowledging the importance of person- and patient-centred research, particularly when it focuses on services and intervention. However, there is sometimes a lack of clarity around how best to be guided by the voices of lived experience when developing a study, and when translating findings to practice, as well as how to ensure participation is valid, valued, and safe. This Special Issue aims to explore the processes of, and findings from collaborative mental health research, including the voices of lived experience at all stages of the research. Studies grounded by how community members, participants/patients, services, and researchers collaborate within community- and clinical-based research are encouraged, especially as they pertain to co-creation and co-development.

This Special Issue is open to any subject area related to mental health research where the inclusion of lived experience has played an important and consistent role in various stages of the research. Papers examining the methodological processes of undertaking collaborative mental health research are also encouraged. The listed keywords are noted below.

Dr. Kathy McKay
Dr. Eilis Kennedy
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • lived experience
  • mental health
  • co-creation
  • co-development

Published Papers (8 papers)

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Research

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13 pages, 854 KiB  
Article
Acute Mountain Sickness and the Risk of Subsequent Psychiatric Disorders—A Nationwide Cohort Study in Taiwan
by Ya-Hsuan Wang, Wu-Chien Chien, Chi-Hsiang Chung, Yu-Ning Her, Chia-Yi Yao, Biing-Luen Lee, Fang-Ling Li, Fang-Jung Wan and Nian-Sheng Tzeng
Int. J. Environ. Res. Public Health 2023, 20(4), 2868; https://doi.org/10.3390/ijerph20042868 - 06 Feb 2023
Viewed by 1237
Abstract
We aim to explore if there is a relationship between acute mountain sickness (AMS) and the risk of psychiatric disorders in Taiwan by using the National Health Insurance Research Database for to the rare studies on this topic. We enrolled 127 patients with [...] Read more.
We aim to explore if there is a relationship between acute mountain sickness (AMS) and the risk of psychiatric disorders in Taiwan by using the National Health Insurance Research Database for to the rare studies on this topic. We enrolled 127 patients with AMS, and 1270 controls matched for sex, age, monthly insured premiums, comorbidities, seasons for medical help, residences, urbanization level, levels of care, and index dates were chosen from 1 January 2000 to 31 December 2015. There were 49 patients with AMS and 140 controls developed psychiatric disorders within the 16-year follow-up. The Fine–Gray model analyzed that the patients with AMS were prone to have a greater risk for the development of psychiatric disorders with an adjusted sub-distribution hazard ratio (sHRs) of 10.384 (95% confidence interval [CI]: 7.267–14.838, p < 0.001) for psychiatric disorders. The AMS group was associated with anxiety disorders, depressive disorders, bipolar disorder, sleep disorders, posttraumatic stress disorder/acute stress disorder, psychotic disorder, and substance-related disorder (SRD). The relationship between anxiety, depression, sleep disorders, SRD, and AMS still persisted even after we excluded the psychiatric disorders within the first five years after AMS. There was an association between AMS and the rising risk of psychiatric disorders in the 16 years of long-term follow-up research. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
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20 pages, 335 KiB  
Article
Thinking Time, Shifting Goalposts and Ticking Time Bombs: Experiences of Waiting on the Gender Identity Development Service Waiting List
by Kathy McKay, Eilis Kennedy, Talen Wright and Bridget Young
Int. J. Environ. Res. Public Health 2022, 19(21), 13883; https://doi.org/10.3390/ijerph192113883 - 25 Oct 2022
Viewed by 1386
Abstract
LOGiC-Q is a prospective longitudinal qualitative study that explores the experiences of children and young people, and their families, who have been referred to the Gender Identity Development Service (GIDS) in the UK. This paper describes the experiences of children and young people [...] Read more.
LOGiC-Q is a prospective longitudinal qualitative study that explores the experiences of children and young people, and their families, who have been referred to the Gender Identity Development Service (GIDS) in the UK. This paper describes the experiences of children and young people and their parents while they are on the waiting list to be seen. Semi-structured interviews were undertaken with 39 families who had been referred to GIDS and were waiting for their first appointment with the service. Both parent and child/young person were interviewed. Analysis of the anonymised interview transcripts was informed by both narrative and thematic approaches, and three predominant narratives around waiting were identified: 1. Positive experiences attached to waiting; 2. Feelings of distress and stuckness; 3. Suggestions for support while waiting. Findings from this study indicate variations in how waiting is experienced depending on the age of the child, and how distressed their body makes them feel. Young people and their parents offered suggestions for how the service could support families on the waiting list. These suggestions related primarily to ways of checking in and providing reassurance that they were at least still on the list as well as ideas about how to make the wait less distressing, rather than necessarily making the wait shorter, which was more spoken about in terms of an ideal rather than a realistic option. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
14 pages, 737 KiB  
Article
Keeping the Agenda Current: Evolution of Australian Lived Experience Mental Health Research Priorities
by Amelia Gulliver, Alyssa R. Morse and Michelle Banfield
Int. J. Environ. Res. Public Health 2022, 19(13), 8101; https://doi.org/10.3390/ijerph19138101 - 01 Jul 2022
Cited by 3 | Viewed by 1779
Abstract
The value of including consumers’ and carers’ views at the early stages of study design is increasingly being recognised as essential to improving the relevance and quality of research. One method of achieving this is by actively seeking and regularly updating consumer and [...] Read more.
The value of including consumers’ and carers’ views at the early stages of study design is increasingly being recognised as essential to improving the relevance and quality of research. One method of achieving this is by actively seeking and regularly updating consumer and carer priorities for mental health research. The current study presents priorities for mental health research collected from two virtual World Cafés with consumers and carers (n = 4, n = 7) held in 2021. Over 200 priorities were identified (13 themes, 64 subthemes), which were then compared with two combined data collection activities from 2013 (face-to-face forum; n = 25), and 2017 (online survey; n = 70). There appears to be some evolution in consumer and carer priorities over time. A key difference was that in the previous studies, mental health service issues were at the individual service delivery level, whereas in the current study, a broader focus was on mental health systems of care and issues around service funding, accessibility, and equity of access. It is possible these changes may also have resulted from key differences between the studies, including the methods, setting, and participants. Overall, similar to our previous studies no clear priorities were identified; however, a significant number of important research topics were identified by consumers and carers, providing a rich agenda from which to improve the management of mental health. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
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23 pages, 2767 KiB  
Article
Consumer Perspectives on Anxiety Management in Australian General Practice
by Erin Parker and Michelle Banfield
Int. J. Environ. Res. Public Health 2022, 19(9), 5706; https://doi.org/10.3390/ijerph19095706 - 07 May 2022
Viewed by 1663
Abstract
The aim of the current study was to explore consumer views on the management of anxiety in general practice, which is often the first service from which a consumer seeks professional support. We used a mixed methods survey to explore three broad research [...] Read more.
The aim of the current study was to explore consumer views on the management of anxiety in general practice, which is often the first service from which a consumer seeks professional support. We used a mixed methods survey to explore three broad research questions: (1) what are consumer experiences of anxiety management in general practice, (2) what do consumers prioritise when considering treatment for anxiety and what are their preferences for type of treatment, and (3) how do consumers think care for anxiety could be improved? Consumers reported generally positive views of their GP when seeking help for anxiety, though they had mixed experiences of the approach taken to treatment. Consumers noted that they prioritise effective treatment above other factors and are less concerned with how quickly their treatment works. A preference for psychological intervention or combined treatment with medication was apparent. Consumers noted that key areas for improving care for anxiety were improving access and funding for psychological treatments, increasing community knowledge about anxiety, and reducing stigma. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
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15 pages, 342 KiB  
Article
Mental Health Peer Worker Perspectives on Resources Developed from Lived Experience Research Findings: A Delphi Study
by Shannon Li, Anne Honey, Francesca Coniglio and Peter Schaecken
Int. J. Environ. Res. Public Health 2022, 19(7), 3881; https://doi.org/10.3390/ijerph19073881 - 24 Mar 2022
Viewed by 1822
Abstract
Lived experience research is potentially useful for assisting the recovery journeys of people experiencing mental health challenges, when presented in user-friendly formats. Consumer peer workers are ideally placed to introduce such resources to the people they work with. This study sought to explore [...] Read more.
Lived experience research is potentially useful for assisting the recovery journeys of people experiencing mental health challenges, when presented in user-friendly formats. Consumer peer workers are ideally placed to introduce such resources to the people they work with. This study sought to explore the perspectives of expert consumer peer workers on the potential use of lived experience research resources in peer work practice. In particular: (1) what research topics would be most useful; and (2) what considerations are important for developing user-friendly and useful resources using findings from this research. A hybrid Delphi study was conducted. Eighteen expert peer workers participated in online group interviews, which included a semi-structured discussion and modified nominal group technique. These were followed by two rounds of surveys, which focused on prioritising the identified topics. Participants identified 47 topics suitable for lived experience research resources, 42 of which reached consensus as useful for consumers. A priority list of topics for use in peer work was identified through examination and grouping of peer worker rankings of the usefulness of resources for their work with consumers. The highest priority topics were as follows: developing and maintaining social networks; how peer workers can support consumers in their recovery journey; having choice with medications and participating in the decision-making process; and knowing your rights and responsibilities. Participants noted, however, that the usefulness of each topic ultimately depended on individual consumer’s needs. They highlighted that a variety of formats and presentation were required to reach diverse consumer groups. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
12 pages, 310 KiB  
Article
Peer Worker-Supported Transition from Hospital to Home—Outcomes for Service Users
by Nicola Hancock, Bridget Berry, Michelle Banfield, Georgia Pike-Rowney, Justin Newton Scanlan and Sarah Norris
Int. J. Environ. Res. Public Health 2022, 19(5), 2743; https://doi.org/10.3390/ijerph19052743 - 26 Feb 2022
Cited by 3 | Viewed by 1976
Abstract
Background: Transitioning from psychiatric hospitalisation back to community presents a period of heightened suicide, homelessness, relapse, and rehospitalisation risk. The Australian state of New South Wales established a state-wide Peer Supported Transfer of Care (Peer-STOC) initiative to enhance recovery-focused supports available during this [...] Read more.
Background: Transitioning from psychiatric hospitalisation back to community presents a period of heightened suicide, homelessness, relapse, and rehospitalisation risk. The Australian state of New South Wales established a state-wide Peer Supported Transfer of Care (Peer-STOC) initiative to enhance recovery-focused supports available during this transition period. Aims: To understand the impacts and outcomes of the Peer-STOC program on service users from three stakeholder perspectives: service users themselves, peer worker service providers, and other mental health workers and clinicians interfacing with the program. Methods: Qualitative data from 82 questionnaires and 58 individual in-depth interviews were analysed thematically using constant comparative methods and an iterative and inductive process. Results: All stakeholders described positive impacts and outcomes of the program for service users. These included: (a) a better, less traumatic inpatient experience; (b) felt understood, cared about and less alone; (c) easier to leave hospital; (d) easier to get back into life and daily routines; (e) built and re-established community connections; (f) gained new knowledge, strategies, and skills; and (g) felt more hopeful about my recovery. Conclusions: The Peer-STOC program had a positive impact. It enhanced people’s experience in hospital, eased their transition from hospital and assisted with people recovering community-based relationships, activities, and routines. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
8 pages, 322 KiB  
Article
Virtual World Café Method for Identifying Mental Health Research Priorities: Methodological Case Study
by Michelle Banfield, Amelia Gulliver and Alyssa R. Morse
Int. J. Environ. Res. Public Health 2022, 19(1), 291; https://doi.org/10.3390/ijerph19010291 - 28 Dec 2021
Cited by 10 | Viewed by 1705
Abstract
People with lived experience of mental health problems as both consumers and carers can bring significant expertise to the research process. However, the methods used to gather this information and their subsequent results can vary markedly. This paper describes the methods for two [...] Read more.
People with lived experience of mental health problems as both consumers and carers can bring significant expertise to the research process. However, the methods used to gather this information and their subsequent results can vary markedly. This paper describes the methods for two virtual World Cafés held to gather data on consumer and carer priorities for mental health research. Several methodological processes and challenges arose during data collection, including the achieved recruitment for each group (n = 4, n = 7) falling significantly short of the target number of 20 participants per group. This led to departures from planned methods (i.e., the use of a single ‘room’, rather than multiple breakout rooms). Despite this, the participants in the virtual World Cafés were able to generate over 200 ideas for research priorities, but not identify agreed-upon priorities. Virtual World Cafés can quickly generate a significant volume of data; however, they may not be as effective at generating consensus. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)

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15 pages, 727 KiB  
Protocol
A Mixed-Methods Outcomes Evaluation Protocol for a Co-Produced Psychoeducation Workshop Series on Recovery from Psychosis
by Ying Ying Lee, Wei Ler Koo, Yi Fong Tan, Vanessa Seet, Mythily Subramaniam, Suying Ang and Charmaine Tang
Int. J. Environ. Res. Public Health 2022, 19(23), 15464; https://doi.org/10.3390/ijerph192315464 - 22 Nov 2022
Viewed by 1418
Abstract
Co-production in mental health is a relatively new approach to designing and delivering mental health services, which involves collaboration amongst professionals, persons in recovery, and their caregivers to provide services. The aim of this protocol paper is to detail the implementation and evaluation [...] Read more.
Co-production in mental health is a relatively new approach to designing and delivering mental health services, which involves collaboration amongst professionals, persons in recovery, and their caregivers to provide services. The aim of this protocol paper is to detail the implementation and evaluation of a co-produced workshop series named Broken Crayons. Collaborating with an early intervention program for first-episode psychosis, the study team and peer volunteers generated a co-production framework based on their experience of co-producing 11 workshops. This paper also outlines a protocol to evaluate Broken Crayons, a psychoeducation workshop series co-created and co-delivered by mental health professionals, persons in recovery, and their caregivers. Indicators on personal recovery, mental wellbeing, community integration, etc., are included as outcomes. Two-tailed, paired t-tests will be used to compare pre- and post-workshop survey data. Focus group discussions will also be conducted to gather subjective experiences of participants of the Broken Crayons workshops. Cost-savings of co-production by Recovery Colleges are discussed. The implications of using co-production to foster citizenry in persons living with first-episode psychosis are discussed in the context of social causation and social drift theories. Taken together, we argued that co-production is not just a passing trend, but a moral imperative for inclusive and equitable mental health service design and delivery. Full article
(This article belongs to the Special Issue Lived Experience within Mental Health and Wellbeing Research)
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