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1.
BMJ Open ; 14(5): e081963, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38749688

ABSTRACT

OBJECTIVE: The introduction of peer support in mental health teams creates opportunities and challenges for both peer and non-peer staff. However, the majority of research on mental health workers' (MHWs) experiences with peer support comes from high-income countries. Using Peer Support In Developing Empowering Mental Health Services (UPSIDES) is an international multicentre study, which aims at scaling up peer support for people with severe mental illness in Europe, Asia and Africa. This study investigates MHWs experiences with UPSIDES peer support. DESIGN: Six focus groups with MHWs were conducted approximately 18 months after the implementation of the UPSIDES peer support intervention. Transcripts were analysed with a descriptive approach using thematic content analysis. SETTING: Qualitative data were collected in Ulm and Hamburg (Germany), Butabika (Uganda), Dar es Salaam (Tanzania), Be'er Sheva (Israel) and Pune (India). PARTICIPANTS: 25 MHWs (19 females and 6 males) from UPSIDES study sites in the UPSIDES Trial (ISRCTN26008944) participated. FINDINGS: Five overarching themes were identified in MHWs' discussions: MHWs valued peer support workers (PSWs) for sharing their lived experiences with service users (theme 1), gained trust in peer support over time (theme 2) and provided support to them (theme 3). Participants from lower-resource study sites reported additional benefits, including reduced workload. PSWs extending their roles beyond what MHWs perceived as appropriate was described as a challenge (theme 4). Perceptions about PSWs varied based on previous peer support experience, ranging from considering PSWs as equal team members to viewing them as service users (theme 5). CONCLUSIONS: Considering local context is essential in order to understand MHWs' views on the cooperation with PSWs. Especially in settings with less prior experience of peer support, implementers should make extra effort to promote interaction between MHWs and PSWs. In order to better understand the determinants of successful implementation of peer support in diverse settings, further research should investigate the impact of contextual factors (eg, resource availability and cultural values). TRIAL REGISTRATION NUMBER: ISRCTN26008944.


Subject(s)
Focus Groups , Mental Disorders , Mental Health Services , Peer Group , Qualitative Research , Humans , Female , Male , Mental Health Services/organization & administration , Adult , Mental Disorders/therapy , Social Support , Attitude of Health Personnel , Health Personnel/psychology , Middle Aged
2.
BMC Health Serv Res ; 24(1): 480, 2024 Apr 18.
Article in English | MEDLINE | ID: mdl-38637776

ABSTRACT

BACKGROUND: Stakeholder engagement is essential to the design, implementation and evaluation of complex mental health interventions like peer support. Theory of Change (ToC) is commonly used in global health research to help structure and promote stakeholder engagement throughout the project cycle. Stakeholder insights are especially important in the context of a multi-site trial, in which an intervention may need to be adapted for implementation across very different settings while maintaining fidelity to a core model. This paper describes the development of a ToC for a peer support intervention to be delivered to people with severe mental health conditions in five countries as part of the UPSIDES trial. METHODS: One hundred thirty-four stakeholders from diverse backgrounds participated in a total of 17 workshops carried out at six UPSIDES implementing sites across high-, middle- and low-income settings (one site each in India, Israel, Uganda and Tanzania; two sites in Germany). The initial ToC maps created by stakeholders at each site were integrated into a cross-site ToC map, which was then revised to incorporate additional insights from the academic literature and updated iteratively through multiple rounds of feedback provided by the implementers. RESULTS: The final ToC map divides the implementation of the UPSIDES peer support intervention into three main stages: preparation, implementation, and sustainability. The map also identifies three levels of actors involved in peer support: individuals (service users and peer support workers), organisations (and their staff members), and the public. In the UPSIDES trial, the ToC map proved especially helpful in characterising and distinguishing between (a) common features of peer support, (b) shared approaches to implementation and (c) informing adaptations to peer support or implementation to account for contextual differences. CONCLUSIONS: UPSIDES is the first project to develop a multi-national ToC for a mental health peer support intervention. Stakeholder engagement in the ToC process helped to improve the cultural and contextual appropriateness of a complex intervention and ensure equivalence across sites for the purposes of a multi-site trial. It may serve as a blueprint for implementing similar interventions with a focus on recovery and social inclusion among people with mental ill-health across diverse settings. TRIAL REGISTRATION: ISRCTN26008944 (Registration Date: 30/10/2019).


Subject(s)
Mental Health Services , Mental Health , Humans , Counseling , India , Uganda
3.
BMC Health Serv Res ; 24(1): 159, 2024 Feb 01.
Article in English | MEDLINE | ID: mdl-38302955

ABSTRACT

BACKGROUND: Peer support is an essential part of recovery-oriented care worldwide. Contextual factors have an impact on the implementation of peer support work. However, research has paid little attention to similarities and differences of implementation factors in settings varying by income-level and cultural values. The aim of this study is to assess the factors influencing the implementation of a peer support intervention across study sites in low-, middle- and high-income countries in line with the Consolidation Framework for Implementation Research (CFIR). METHOD: 6 focus groups with a total of 54 key informants with relevant contextual (organisational) knowledge regarding implementation facilitators and barriers were conducted at six study sites Ulm and Hamburg (Germany), Butabika (Uganda), Dar es Salaam (Tanzania), Be'er Sheva (Israel), and Pune (India) before and 1.5 years after the start of UPSIDES peer support. Transcripts were analysed using qualitative content analysis. RESULTS: Across study sites key informants reported benefits of peer support for service users and peer support workers as implementation facilitators. At study sites with lower resources, reduced workload for mental health workers and improved access to mental health services through peer support were perceived as implementation facilitators (CFIR Domain 1: Intervention characteristics). The degree of engagement of mental health workers (CFIR Domain 3: Inner Setting/Domain 4: Individuals involved) varied across study sites and was seen either as a barrier (low engagement) or a facilitator (high engagement). Across study sites, adequate training of peer support workers (CFIR Domain 5: Implementation process) was seen as animplementation facilitator, while COVID-19 as well as low resource availability were reported as implementation barriers (CFIR Domain 2: Outer setting). CONCLUSIONS: This study highlights the importance of considering contextual factors when implementing peer support, including previous experience and perceived benefits. Particular attention should be given to organisational benefits such as workload reduction and the allocation of sufficient resources as key drivers in LMICs. In HICs, the potential of organisational benefits for successful implementation should be further investigated and promoted.


Subject(s)
COVID-19 , Mental Health Services , Humans , Counseling , India , Qualitative Research , Tanzania
4.
BMJ Open ; 13(8): e058724, 2023 08 23.
Article in English | MEDLINE | ID: mdl-37612104

ABSTRACT

OBJECTIVES: Despite the established evidence base for mental health peer support work, widespread implementation remains a challenge. This study aimed to explore societal and organisational influences on the implementation of peer support work in low-income and high-income settings. DESIGN: Study sites conducted two focus groups in local languages at each site, using a topic guide based on a conceptual framework describing eight peer support worker (PSW) principles and five implementation issues. Transcripts were translated into English and an inductive thematic analysis was conducted to characterise implementation influences. SETTING: The study took place in two tertiary and three secondary mental healthcare sites as part of the Using Peer Support in Developing Empowering Mental Health Services (UPSIDES) study, comprising three high-income sites (Hamburg and Ulm, Germany; Be'er Sheva, Israel) and two low-income sites (Dar es Salaam, Tanzania; Kampala, Uganda) chosen for diversity both in region and in experience of peer support work. PARTICIPANTS: 12 focus groups were conducted (including a total of 86 participants), across sites in Ulm (n=2), Hamburg (n=2), Dar es Salaam (n=2), Be'er Sheva (n=2) and Kampala (n=4). Three individual interviews were also done in Kampala. All participants met the inclusion criteria: aged over 18 years; actual or potential PSW or mental health clinician or hospital/community manager or regional/national policy-maker; and able to give informed consent. RESULTS: Six themes relating to implementation influences were identified: community and staff attitudes, resource availability, organisational culture, role definition, training and support and peer support network. CONCLUSIONS: This is the first multicountry study to explore societal attitudes and organisational culture influences on the implementation of peer support. Addressing community-level discrimination and developing a recovery orientation in mental health systems can contribute to effective implementation of peer support work. The relationship between societal stigma about mental health and resource allocation decisions warrants future investigation. TRIAL REGISTRATION NUMBER: ISRCTN26008944.


Subject(s)
Mental Health , Poverty , Humans , Adult , Middle Aged , Focus Groups , Tanzania , Uganda
5.
J Recovery Ment Health ; 6(1): 38-44, 2023 Jan 06.
Article in English | MEDLINE | ID: mdl-36926313

ABSTRACT

Objectives: To identify design features of the CHIME conceptual framework of mental health recovery which are associated with high rates of citation. Research Design and Methods: Systematic review of all citations of the Connectedness, Hope, Identity, Meaning, and Empowerment (CHIME) framework of mental health recovery. Papers citing CHIME were screened and extracted from three citation databases. Citation content analysis was used to investigate associations between nine CHIME design features. Citations were investigated across six forms of visibility: all citations; Anglophone vs non-Anglophone; academic vs non-academic; academic discipline; professional group; and clinical population. Results: There were 915 eligible documents identified. Six CHIME framework design features met predefined thresholds for high levels of influence: (i) using a systematic review methodology for development, (ii) adopting a memorable acronym, (iii) having disaggregable components, and being unaligned to a (iv) particular discipline (i.e., transdisciplinary), (v) professional group, or (vi) diagnostic population. Documents from Anglophone countries were more likely to cite CHIME with reference to trans-professional (χ2=3.96, df=1, p=0.05) and ethnicity sub-group analysis (p=0.039) design features than non-Anglophone documents. Non-academic documents were more likely to cite the acronym design feature than academic papers (χ2=5.73, df=1, p=0.01). Public Health-related publications were more likely to cite CHIME within a trans-diagnostic framework (χ2=16.39, df=1, p<0.001) than other disciplines. Conclusions: The influence and impact of conceptual frameworks for recovery are increased when the framework is underpinned by a systematic review, includes disaggregable components which can be summarized using a memorable acronym, and when the framework is transdisciplinary, trans-professional, and trans-diagnostic.

6.
BMC Psychiatry ; 22(1): 604, 2022 09 10.
Article in English | MEDLINE | ID: mdl-36088330

ABSTRACT

BACKGROUND: Peer support is increasingly acknowledged as an integral part of mental health services around the world. However, most research on peer support comes from high-income countries, with little attention to similarities and differences between different settings and how these affect implementation. Mental health workers have an important role to play in integrating formal peer support into statutory services, and their attitudes toward peer support can represent either a barrier to or facilitator of successful implementation. Thus, this study investigates mental health workers' attitudes toward peer support across a range of high- (Germany, Israel), middle- (India), and low-income country (Tanzania, Uganda) settings. METHODS: Six focus groups were conducted in Ulm and Hamburg (Germany), Butabika (Uganda), Dar es Salaam (Tanzania), Be'er Sheva (Israel), and Ahmedabad, Gujarat (India) with a total of 35 participants. Transcripts were analyzed using thematic content analysis. RESULTS: Participants across the study sites demonstrated overall positive attitudes towards peer support in mental health care, although some concerns were raised on potentially harmful effects of peer support such as negative role modelling and giving inadequate advice to service users. Notably, mental health workers from low- and middle-income countries described peer support workers as bridge-builders and emphasized the mutual benefits of peer support. Mental health workers' views on peer support workers' roles and role boundaries differed between sites. In some settings, mental health workers strongly agreed on the need for role clarity, whereas in others, mental health workers expressed mixed views, with some preferring blurred role boundaries. Regarding collaboration, mental health workers described peer support workers as supporters and utilizers, equal partners or emphasized a need for trust and commitment. CONCLUSIONS: Mental health workers' attitudes toward peer support workers were positive overall, but they also varied depending on local context, resources and previous experiences with peer support. This affected their conceptions of peer support workers' roles, role clarity, and collaboration. This study demonstrated that reconciling the need for local adaptations and safeguarding the core values of peer support is necessary and possible, especially when the implementation of recovery-oriented interventions such as peer support is accelerating worldwide.


Subject(s)
Mental Disorders , Mental Health , Focus Groups , Humans , Mental Disorders/psychology , Mental Disorders/therapy , Peer Group , Tanzania
7.
J Nurs Manag ; 30(7): 2715-2723, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35770714

ABSTRACT

AIM: To identify and describe the impact areas of a newly developed leadership development programme focussed on positioning leaders to improve the student experience of the clinical learning environment. BACKGROUND: There is a need to consider extending traditional ways of developing leaders within the clinical learning in order to accommodate an increased number of students and ensure their learning experience is fulfilling and developmental. The Florence Nightingale Foundation implemented a bespoke leadership development programme within the clinical learning environment. Identifying the areas of impact will help to inform organisational decision making regarding the benefits of encouraging and supporting emerging leaders to undertake this type of programme. METHOD: For this qualitative descriptive study, eight health care professionals who took part in a bespoke leadership development programme were interviewed individually and then collectively. The Florence Nightingale Foundation fellowship/scholarship programme is examined to determine impact. RESULTS: Two key themes were described in relation to impact of the programme. These were 'Personal Development' and 'Professional Impact'. The two key themes comprised several subthemes. The notion of time and space to think was subsumed within each theme. CONCLUSION: Data highlights that the Florence Nightingale Foundation programme had a distinct impact on participants by transforming thinking and increasing self-confidence to enable changes to make improvements both within their organisations and at national level. IMPLICATIONS FOR NURSING MANAGEMENT: Health care managers must continue to invest in building leadership capacity and capability through programmes that can help position individuals to realize their potential to positively influence health outcomes and wider society.


Subject(s)
Leadership , Learning , Humans , Health Personnel , Qualitative Research
8.
PLoS One ; 17(5): e0266722, 2022.
Article in English | MEDLINE | ID: mdl-35507551

ABSTRACT

Content and trigger warnings give information about the content of material prior to receiving it. Different typologies of content warnings have emerged across multiple sectors, including health, social media, education and entertainment. Benefits arising from their use are contested, with recent empirical evidence from educational sectors suggesting they may raise anxiety and reinforce the centrality of trauma experience to identity, whilst benefits relate to increased individual agency in making informed decisions about engaging with content. Research is hampered by the absence of a shared inter-sectoral typology of warnings. The aims of this systematic review are to develop a typology of content warnings and to identify the contexts in which content warnings are used. The review was pre-registered (ID: CRD42020197687, URL: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020197687) and used five sources: electronic databases covering multiple sectors (n = 19); table of contents from multi-sectoral journals (n = 5), traditional and social media websites (n = 53 spanning 36 countries); forward and backward citation tracking; and expert consultation (n = 15). In total, 6,254 documents were reviewed for eligibility and 136 documents from 32 countries were included. These were synthesised to develop the Narrative Experiences Online (NEON) content warning typology, which comprises 14 domains: Violence, Sex, Stigma, Disturbing content, Language, Risky behaviours, Mental health, Death, Parental guidance, Crime, Abuse, Socio-political, Flashing lights and Objects. Ten sectors were identified: Education, Audio-visual industries, Games and Apps, Media studies, Social sciences, Comic books, Social media, Music, Mental health, and Science and Technology. Presentation formats (n = 15) comprised: education materials, film, games, websites, television, books, social media, verbally, print media, apps, radio, music, research, DVD/video and policy document. The NEON content warning typology provides a framework for consistent warning use and specification of key contextual information (sector, presentation format, target audience) in future content warning research, allowing personalisation of content warnings and investigation of global sociopolitical trends over time.


Subject(s)
Social Media , Anxiety , Humans , Neon
9.
Int J Ment Health Nurs ; 31(5): 1186-1197, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35607709

ABSTRACT

Compassion is an important element of contemporary nursing work. Compassion has been recognized as necessary for improving health outcomes. However, very little is known about how compassion is understood in the mental health practice setting. We conducted interviews with seven mental health nurses to explore their perspectives on compassion and views on compassion policy. Analysis of the data revealed that compassion was identified and discussed as Compassion as part of the person (and the profession); Compassion: Fundamental to the nursing role; Barriers to compassion; Perspectives on compassion policy. In addition, findings demonstrated ethical constraints on compassion in the mental health context, as well as the administrative burden on nurses more broadly, which was also a reported barrier to compassion. Mental health nurses identified compassion as fundamental to their clinical practice, yet compassion was impeded owing to practical and emotional constraints upon nurses. System-wide action must be taken to increase and support the mental health nursing workforce to strengthen the practice of compassion. This will be fundamental to improving health outcomes that are claimed to be enhanced by compassion. This study is reported according to the COREQ guidelines.


Subject(s)
Nurses , Psychiatric Nursing , Empathy , Humans , Mental Health , Nurse's Role
10.
BMJ Open ; 12(1): e058083, 2022 Jan 20.
Article in English | MEDLINE | ID: mdl-35058270

ABSTRACT

OBJECTIVES: Current translation guidelines do not include sufficiently flexible translation approaches for different study materials. We aimed to develop a proportionate methodology to inform translation of all types of study materials in global health trials. DESIGN: The design included three stages: (1) categorisation of study materials, (2) integration of existing translation frameworks and (3) methodology implementation (Germany, India, Israel, Tanzania and Uganda) and refinement. PARTICIPANTS: The study population comprised 27 mental health service users and 27 mental health workers who were fluent in the local language in stage 7 (pretesting), and 54 bilingual mental health service users, aged 18 years or over, and able to give consent as judged by a clinician for step 9 (psychometric evaluation). SETTING: The study took place in preparation for the Using Peer Support in Developing Empowering Mental Health Services (UPSIDES) randomised controlled trial (ISRCTN26008944). PRIMARY OUTCOME MEASURE: The primary outcome measure was the Social Inclusion Scale (SIS). RESULTS: The typology identifies four categories of study materials: local text, study-generated text, secondary measures and primary measure. The UPSIDES Proportionate Translation Methodology comprises ten steps: preparation, forward translation, reconciliation, back translation, review, harmonisation, pretesting, finalisation, psychometric evaluation and dissemination. The translated primary outcome measure for the UPSIDES Trial (SIS) demonstrated adequate content validity (49.3 vs 48.5, p=0.08), convergent validity and internal consistency (0.73), with minimal floor/ceiling effects. CONCLUSION: This methodology can be recommended for translating, cross-culturally adapting and validating all study materials, including standardised measures, in future multisite global trials. The methodology is particularly applicable to multi-national studies involving sites with differing resource levels. The robustness of the psychometric findings is limited by the sample sizes for each site. However, making this limitation explicit is preferable to the typical practice of not reporting adequate details about measure translation and validation. TRAIL REGISTRATION NUMBER: ISRCTN26008944.


Subject(s)
Global Health , Mental Health Services , Adolescent , Germany , Humans , Psychometrics , Translations
11.
JMIR Form Res ; 5(5): e24417, 2021 May 27.
Article in English | MEDLINE | ID: mdl-34042595

ABSTRACT

BACKGROUND: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). OBJECTIVE: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. METHODS: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. RESULTS: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. CONCLUSIONS: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

12.
JMIR Ment Health ; 8(5): e25528, 2021 May 27.
Article in English | MEDLINE | ID: mdl-34042603

ABSTRACT

BACKGROUND: Initial training is essential for the mental health peer support worker (PSW) role. Training needs to incorporate recent advances in digital peer support and the increase of peer support work roles internationally. There is a lack of evidence on training topics that are important for initial peer support work training and on which training topics can be provided on the internet. OBJECTIVE: The objective of this study is to establish consensus levels about the content of initial training for mental health PSWs and the extent to which each identified topic can be delivered over the internet. METHODS: A systematized review was conducted to identify a preliminary list of training topics from existing training manuals. Three rounds of Delphi consultation were then conducted to establish the importance and web-based deliverability of each topic. In round 1, participants were asked to rate the training topics for importance, and the topic list was refined. In rounds 2 and 3, participants were asked to rate each topic for importance and the extent to which they could be delivered over the internet. RESULTS: The systematized review identified 32 training manuals from 14 countries: Argentina, Australia, Brazil, Canada, Chile, Germany, Ireland, the Netherlands, Norway, Scotland, Sweden, Uganda, the United Kingdom, and the United States. These were synthesized to develop a preliminary list of 18 topics. The Delphi consultation involved 110 participants (49 PSWs, 36 managers, and 25 researchers) from 21 countries (14 high-income, 5 middle-income, and 2 low-income countries). After the Delphi consultation (round 1: n=110; round 2: n=89; and round 3: n=82), 20 training topics (18 universal and 2 context-specific) were identified. There was a strong consensus about the importance of five topics: lived experience as an asset, ethics, PSW well-being, and PSW role focus on recovery and communication, with a moderate consensus for all other topics apart from the knowledge of mental health. There was no clear pattern of differences among PSW, manager, and researcher ratings of importance or between responses from participants in countries with different resource levels. All training topics were identified with a strong consensus as being deliverable through blended web-based and face-to-face training (rating 1) or fully deliverable on the internet with moderation (rating 2), with none identified as only deliverable through face-to-face teaching (rating 0) or deliverable fully on the web as a stand-alone course without moderation (rating 3). CONCLUSIONS: The 20 training topics identified can be recommended for inclusion in the curriculum of initial training programs for PSWs. Further research on web-based delivery of initial training is needed to understand the role of web-based moderation and whether web-based training better prepares recipients to deliver web-based peer support.

13.
J Recovery Ment Health ; 4(2): 16-28, 2021.
Article in English | MEDLINE | ID: mdl-34988285

ABSTRACT

OBJECTIVE: The aim of this study was to investigate how curator goals influence the design of curation processes for collections of mental health lived experience narratives. The objectives were (1) to characterize the goals of a range of curators of existing collections, and (2) to identify specific working practices impacted by these goals. RESEARCH DESIGN AND METHODS: Thirty semi-structured interviews were conducted with a purposive sample of curators of collections of lived experience narratives. Thematic analysis was conducted. Goals and impacts on working practice were tabulated, and narrative summaries were constructed to describe the relation between the two. RESULTS: Curators interviewed were from seven countries (Brazil, Canada, Hong Kong, India, Italy, UK, USA), and 60% had lived experience of mental health service usage. Participants discussed eight goals that inspired their work: fighting stigma, campaigning for change in service provision, educating about mental health and recovery, supporting others in their recovery journey, critiquing psychiatry, influencing policy, marketing health services, and reframing mental illness. These goals influenced how decisions were made about inclusion of narratives, editing of narrative content, withdrawal rights, and anonymization. CONCLUSIONS: Our work will support the development of curatorship as a professional practice by shaping training for curators, helping curators reflect on the outcomes they would like to achieve, and helping individuals planning a collection to reflect on their motivations. We argue that transparency is an essential orientation for curators. Transparency allows narrators to make an informed choice about donating a narrative. It allows policy makers to understand the influences on a collection and hence treat it as a source of collective evidence.

14.
Trials ; 21(1): 371, 2020 May 01.
Article in English | MEDLINE | ID: mdl-32357903

ABSTRACT

BACKGROUND: Peer support is an established intervention involving a person recovering from mental illness supporting others with mental illness. Peer support is an under-used resource in global mental health. Building upon comprehensive formative research, this study will rigorously evaluate the impact of peer support at multiple levels, including service user outcomes (psychosocial and clinical), peer support worker outcomes (work role and empowerment), service outcomes (cost-effectiveness and return on investment), and implementation outcomes (adoption, sustainability and organisational change). METHODS: UPSIDES-RCT is a pragmatic, parallel-group, multicentre, randomised controlled trial assessing the effectiveness of using peer support in developing empowering mental health services (UPSIDES) at four measurement points over 1 year (baseline, 4-, 8- and 12-month follow-up), with embedded process evaluation and cost-effectiveness analysis. Research will take place in a range of high-, middle- and low-income countries (Germany, UK, Israel, India, Uganda and Tanzania). The primary outcome is social inclusion of service users with severe mental illness (N = 558; N = 93 per site) at 8-month follow-up, measured with the Social Inclusion Scale. Secondary outcomes include empowerment (using the Empowerment Scale), hope (using the HOPE scale), recovery (using Stages of Recovery) and health and social functioning (using the Health of the Nations Outcome Scales). Mixed-methods process evaluation will investigate mediators and moderators of effect and the implementation experiences of four UPSIDES stakeholder groups (service users, peer support workers, mental health workers and policy makers). A cost-effectiveness analysis examining cost-utility and health budget impact will estimate the value for money of UPSIDES peer support. DISCUSSION: The UPSIDES-RCT will explore the essential components necessary to create a peer support model in mental health care, while providing the evidence required to sustain and eventually scale-up the intervention in different cultural, organisational and resource settings. By actively involving and empowering service users, UPSIDES will move mental health systems toward a recovery orientation, emphasising user-centredness, community participation and the realisation of mental health as a human right. TRIAL REGISTRATION: ISRCTN, ISRCTN26008944. Registered on 30 October 2019.


Subject(s)
Crisis Intervention/methods , Global Health , Mental Disorders/psychology , Mental Disorders/therapy , Mental Health , Peer Group , Adolescent , Adult , Cost-Benefit Analysis , Counseling , Female , Follow-Up Studies , Germany/epidemiology , Humans , India/epidemiology , Israel/epidemiology , Male , Mental Disorders/epidemiology , Middle Aged , Multicenter Studies as Topic , Pragmatic Clinical Trials as Topic , Qualitative Research , Tanzania/epidemiology , Treatment Outcome , Uganda/epidemiology , United Kingdom/epidemiology , Young Adult
15.
Child Adolesc Ment Health ; 25(1): 13-20, 2020 02.
Article in English | MEDLINE | ID: mdl-32285642

ABSTRACT

INTRODUCTION: The mental health of young people is a major global public health concern. A shift in focus towards children and young people's mental health in the UK has emphasized young people's voices, as of paramount importance in shaping the path for future quality care provision. The paper examines a study that aimed to explore young people's perceptions of mental health and well-being using photographs. METHOD: The methodology employed for this study placed young people at the centre of the research process by using photographs to capture their experiences. Ten young people who attended a youth group used disposable cameras to take photographs of their experiences and perceptions of mental health and well-being. Semi-structured interviews with the young people elicited their narratives behind the images. Data were analysed using photo-elicitation and thematic analysis. FINDINGS: Young people's experiences of mental health and well-being were internalized and located predominantly in the private and hidden regions of their everyday lives. Stigma, social isolation and marginalization were prevalent whilst spirituality and connection with the environment expressed hope. CONCLUSION: Mental health appears to be firmly located in the private 'back regions' of young individuals' lives, demonstrating that young people conceptualize these experiences as a vulnerable and hidden part of their being. Understanding the needs of this new generation of youth including the prevalence of stigma, risk of isolation and social exclusion are paramount. Future service provision needs to recognize the extent stigma impacts upon young people's experiences of mental health and well-being.


Subject(s)
Creativity , Mental Health , Photography , Adolescent , Adult , Humans , Qualitative Research , Social Stigma , Spirituality , Young Adult
16.
Br J Psychiatry ; 216(6): 301-307, 2020 06.
Article in English | MEDLINE | ID: mdl-31992375

ABSTRACT

BACKGROUND: Peer support work roles are being implemented internationally, and increasingly in lower-resource settings. However, there is no framework to inform what types of modifications are needed to address local contextual and cultural aspects. AIMS: To conduct a systematic review identifying a typology of modifications to peer support work for adults with mental health problems. METHOD: We systematically reviewed the peer support literature following PRISMA guidelines for systematic reviews (registered on PROSPERO (International Prospective Register of Systematic Reviews) on 24 July 2018: CRD42018094832). All study designs were eligible and studies were selected according to the stated eligibility criteria and analysed with standardised critical appraisal tools. A narrative synthesis was conducted to identify types of, and rationales for modifications. RESULTS: A total of 15 300 unique studies were identified, from which 39 studies were included with only one from a low-resource setting. Six types of modifications were identified: role expectations; initial training; type of contact; role extension; workplace support for peer support workers; and recruitment. Five rationales for modifications were identified: to provide best possible peer support; to best meet service user needs; to meet organisational needs, to maximise role clarity; and to address socioeconomic issues. CONCLUSIONS: Peer support work is modified in both pre-planned and unplanned ways when implemented. Considering each identified modification as a candidate change will lead to a more systematic consideration of whether and how to modify peer support in different settings. Future evaluative research of modifiable versus non-modifiable components of peer support work is needed to understand the modifications needed for implementation among different mental health systems and cultural settings.


Subject(s)
Mental Disorders/psychology , Peer Group , Social Support , Work/psychology , Adult , Humans
17.
BMC Psychiatry ; 19(1): 413, 2019 12 21.
Article in English | MEDLINE | ID: mdl-31864315

ABSTRACT

BACKGROUND: Mental health recovery narratives are a core component of recovery-oriented interventions such as peer support and anti-stigma campaigns. A substantial number of recorded recovery narratives are now publicly available online in different modalities and in published books. Whilst the benefits of telling one's story have been investigated, much less is known about how recorded narratives of differing modalities impact on recipients. A previous qualitative study identified connection to the narrator and/or to events in the narrative to be a core mechanism of change. The factors that influence how individuals connect with a recorded narrative are unknown. The aim of the current study was to characterise the immediate effects of receiving recovery narratives presented in a range of modalities (text, video and audio), by establishing the mechanisms of connection and the processes by which connection leads to outcomes. METHOD: A study involving 40 mental health service users in England was conducted. Participants were presented with up to 10 randomly-selected recovery narratives and were interviewed on the immediate impact of each narrative. Thematic analysis was used to identify the mechanisms of connection and how connection leads to outcome. RESULTS: Receiving a recovery narrative led participants to reflect upon their own experiences or those of others, which then led to connection through three mechanisms: comparing oneself with the narrative and narrator; learning about other's experiences; and experiencing empathy. These mechanisms led to outcomes through three processes: the identification of change (through attending to narrative structure); the interpretation of change (through attending to narrative content); and the internalisation of interpretations. CONCLUSIONS: This is the first study to identify mechanisms and processes of connection with recorded recovery narratives. The empirically-based causal chain model developed in this study describes the immediate effects on recipients. This model can inform selection of narratives for use in interventions, and be used to support peer support workers in recounting their own recovery narratives in ways which are maximally beneficial to others.


Subject(s)
Empirical Research , Mental Disorders/psychology , Mental Disorders/therapy , Mental Health Recovery , Models, Psychological , Narrative Medicine/methods , Adolescent , Adult , Aged , England/epidemiology , Female , Humans , Male , Mental Disorders/diagnosis , Mental Health Recovery/trends , Mental Health Services/trends , Middle Aged , Narration , Narrative Medicine/trends , Qualitative Research , Social Stigma , Young Adult
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