The Influence of Curator Goals on Collections of Lived Experience Narratives: A Qualitative Study

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

The mechanisms and processes of connection: developing a causal chain model capturing impacts of receiving recorded mental health recovery narratives.

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

Typology of mental health peer support work components: systematised review and expert consultation

The employment of mental health peer support (PS) is recommended in national and international mental health policy, and widely implemented across many countries. The key components of PS remain to be identified. This study aimed to develop a typology of components involved in one-to-one PS for adults in mental health services. A systematised review was performed to establish a preliminary long list of candidate components, followed by expert consultation (n = 21) to refine the list. Forty-two publications were full-text reviewed, comprising 26 trial reports, nine training manuals, and seven change model papers. Two hundred forty-two candidate components were identified, which were thematically synthesised to 16 components and eight sub-components, categorised into four themes: recruitment, preparation, practice, and PS worker wellbeing. Our typology can inform reflection and planning of PS practice, and allow more rigorous and synthesised studies, such as component network meta-analyses, to characterise the impact of each component and their interactions

Differences between online trial participants who have used statutory mental health services and who have not: analysis of baseline data from two pragmatic trials of a digital health intervention

Background:Digital health interventions have become an established part of mental health service provision internationally. Regulators have positioned the best-practice standard of evidence as an interventional study with a comparator reflective of standard care, often operationalised as a pragmatic trial. Digital health interventions can extend healthcare provision to those not currently using mental health services, and hence for external validity trials might openly recruit a mixture of people who have and have not used current mental health services. Prior research has demonstrated phenomenological differences in mental health experiences between these groups. Some differences between service users and non-service users might influence the change created by digital health interventions, and hence research should systematically examine these differences so as to inform intervention development and evaluation work. This paper presents an analysis of baseline data collected in the NEON Trial (ISRCTN11152837) and NEON-O Trial (ISRCTN63197153). These were pragmatic trials of a digital health intervention which openly recruited people who had and had not used specialist mental health services. All participants were experiencing mental health distress. NEON Trial participants had experienced psychosis in the previous five years.Objective:To identify differences in baseline sociodemographic and clinical characteristics associated with specialist mental health service use, for NEON Trial and NEON-O Trial participants.Methods:For both trials, hypothesis testing (with P-value adjustment for multiple comparison) was used to compare baseline sociodemographic and clinical characteristics of participants in the intention to treat sample who had and had not used specialist mental health services. The significance threshold was P=.05.Results:Compared to non-service users (n=124), NEON Trial specialist service users (n=609) were more likely to be female (adjusted P<.001), older (adjusted P<.001) and White British (adjusted P<.001), with lower quality of life (adjusted P=.001) and lower health status (adjusted P=.03). There were differences in geographical distribution (adjusted P=.03), employment (adjusted P=.009, more unemployment), current mental health problem (adjusted P=.009, more psychosis and personal disorders) and recovery status (adjusted P=.009, more recovered). Compared to non-service users (n=399), NEON-O Trial specialist service users (n=614) had differences in employment (adjusted P=.02, more unemployment) and current mental health problem (adjusted P=.009, more personality disorders), with lower quality of life (adjusted P=.004), more distress (adjusted P<.001), less hope (adjusted P<.001), less empowerment (adjusted P<.001), less meaning in life (adjusted P<.001) and lower health status (adjusted P<.001).Conclusions:Specialist mental health service use was associated with numerous demographic and clinical differences in baseline characteristics. Change models for complex intervention should attend to service use history. Investigators for trials recruiting openly should consider randomised stratification on service use history. Evaluations of interventions should attend to in-study changes in service use. Clinical Trial: International Standard Randomized Controlled Trial Number (ISRCTN) 11152837; http://www.controlled-trials.com/ISRCTN11152837 and 63197153; http://www.controlled-trials.com/ISRCTN63197153

Data_Sheet_3_Pragmatic, feasibility randomized controlled trial of a recorded mental health recovery narrative intervention: narrative experiences online intervention for informal carers (NEON-C).docx

IntroductionInformal carers of people with mental health problems often have unmet support needs. Mental health recovery narratives are increasingly accessible, but their relevance to and effect on informal carers have been minimally investigated. The Narrative Experiences Online (NEON) Intervention is a first-in-field intervention that provides informal carers with access to a diverse collection of recorded mental health recovery narratives. This trial aimed to examine the feasibility and acceptability of the NEON Intervention for informal carers.MethodsThis study involved a two-arm feasibility randomized controlled trial. Carers were randomly assigned to receiving versus not receiving the NEON Intervention. The feasibility aspects investigated included the acceptability of the intervention and of randomization, trial processes, engagement rates, recruitment procedures, attrition, sample size estimation, identification of candidate primary and secondary outcomes, and the feasibility of conducting a definitive trial. A qualitative process evaluation was conducted.FindingsA total of 121 carers were eligible, of whom 54 were randomized (intervention: 27, control: 27). Twelve-month follow-up data were available for 36 carers. Carers accessed a mean of 25 narratives over a 12-month period, and the intervention group, compared with the control group, reported a small effect on hope and a moderate effect on the presence of meaning in life. Five modifications were recommended to improve the user experience, applicability, and trial processes.DiscussionThe NEON Intervention is feasible and acceptable. Significant refinement of the NEON Intervention and trial processes is required to personalize and ensure applicability to carers. Further feasibility testing is recommended prior to a definitive trial.</p

Data_Sheet_1_Pragmatic, feasibility randomized controlled trial of a recorded mental health recovery narrative intervention: narrative experiences online intervention for informal carers (NEON-C).docx

IntroductionInformal carers of people with mental health problems often have unmet support needs. Mental health recovery narratives are increasingly accessible, but their relevance to and effect on informal carers have been minimally investigated. The Narrative Experiences Online (NEON) Intervention is a first-in-field intervention that provides informal carers with access to a diverse collection of recorded mental health recovery narratives. This trial aimed to examine the feasibility and acceptability of the NEON Intervention for informal carers.MethodsThis study involved a two-arm feasibility randomized controlled trial. Carers were randomly assigned to receiving versus not receiving the NEON Intervention. The feasibility aspects investigated included the acceptability of the intervention and of randomization, trial processes, engagement rates, recruitment procedures, attrition, sample size estimation, identification of candidate primary and secondary outcomes, and the feasibility of conducting a definitive trial. A qualitative process evaluation was conducted.FindingsA total of 121 carers were eligible, of whom 54 were randomized (intervention: 27, control: 27). Twelve-month follow-up data were available for 36 carers. Carers accessed a mean of 25 narratives over a 12-month period, and the intervention group, compared with the control group, reported a small effect on hope and a moderate effect on the presence of meaning in life. Five modifications were recommended to improve the user experience, applicability, and trial processes.DiscussionThe NEON Intervention is feasible and acceptable. Significant refinement of the NEON Intervention and trial processes is required to personalize and ensure applicability to carers. Further feasibility testing is recommended prior to a definitive trial.</p

Data_Sheet_2_Pragmatic, feasibility randomized controlled trial of a recorded mental health recovery narrative intervention: narrative experiences online intervention for informal carers (NEON-C).docx

IntroductionInformal carers of people with mental health problems often have unmet support needs. Mental health recovery narratives are increasingly accessible, but their relevance to and effect on informal carers have been minimally investigated. The Narrative Experiences Online (NEON) Intervention is a first-in-field intervention that provides informal carers with access to a diverse collection of recorded mental health recovery narratives. This trial aimed to examine the feasibility and acceptability of the NEON Intervention for informal carers.MethodsThis study involved a two-arm feasibility randomized controlled trial. Carers were randomly assigned to receiving versus not receiving the NEON Intervention. The feasibility aspects investigated included the acceptability of the intervention and of randomization, trial processes, engagement rates, recruitment procedures, attrition, sample size estimation, identification of candidate primary and secondary outcomes, and the feasibility of conducting a definitive trial. A qualitative process evaluation was conducted.FindingsA total of 121 carers were eligible, of whom 54 were randomized (intervention: 27, control: 27). Twelve-month follow-up data were available for 36 carers. Carers accessed a mean of 25 narratives over a 12-month period, and the intervention group, compared with the control group, reported a small effect on hope and a moderate effect on the presence of meaning in life. Five modifications were recommended to improve the user experience, applicability, and trial processes.DiscussionThe NEON Intervention is feasible and acceptable. Significant refinement of the NEON Intervention and trial processes is required to personalize and ensure applicability to carers. Further feasibility testing is recommended prior to a definitive trial.</p