11 research outputs found
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The impact of mental health recovery narratives on recipients experiencing mental health problems: Qualitative analysis and change model.
BACKGROUND: Mental health recovery narratives are stories of recovery from mental health problems. Narratives may impact in helpful and harmful ways on those who receive them. The objective of this paper is to develop a change model identifying the range of possible impacts and how they occur. METHOD: Semi-structured interviews were conducted with adults with experience of mental health problems and recovery (n = 77). Participants were asked to share a mental health recovery narrative and to describe the impact of other people's recovery narratives on their own recovery. A change model was generated through iterative thematic analysis of transcripts. RESULTS: Change is initiated when a recipient develops a connection to a narrator or to the events descripted in their narrative. Change is mediated by the recipient recognising experiences shared with the narrator, noticing the achievements or difficulties of the narrator, learning how recovery happens, or experiencing emotional release. Helpful outcomes of receiving recovery narratives are connectedness, validation, hope, empowerment, appreciation, reference shift and stigma reduction. Harmful outcomes are a sense of inadequacy, disconnection, pessimism and burden. Impact is positively moderated by the perceived authenticity of the narrative, and can be reduced if the recipient is experiencing a crisis. CONCLUSIONS: Interventions that incorporate the use of recovery narratives, such as peer support, anti-stigma campaigns and bibliotherapy, can use the change model to maximise benefit and minimise harms from narratives. Interventions should incorporate a diverse range of narratives available through different mediums to enable a range of recipients to connect with and benefit from this material. Service providers using recovery narratives should preserve authenticity so as to maximise impact, for example by avoiding excessive editing
How do recorded mental health recovery narratives create connection and improve hopefulness?
Background: Mental health recovery narratives are an active ingredient of recovery-oriented interventions such as peer support. Recovery narratives can create connection and hope, but there is limited evidence on the predictors of impact. Aims: The aim of this study was to identify characteristics of the narrator, narrative content and participant which predict the short-term impact of recovery narratives on participants. Method: Independent studies were conducted in an experimental (n = 40) and a clinical setting (n = 13). In both studies, participants with mental health problems received recorded recovery narratives and rated impact on hopefulness and connection. Predictive characteristics were identified using multi-level modelling. Results: The experimental study found that narratives portraying a narrator as living well with mental health problems that is intermediate between no and full recovery, generated higher self-rated levels of hopefulness. Participants from ethnic minority backgrounds had lower levels of connection with narrators compared to participants from a white background, potentially due to reduced visibility of a narrator’s diversity characteristics. Conclusions: Narratives describing partial but not complete recovery and matching on ethnicity may lead to a higher impact. Having access to narratives portraying a range of narrator characteristics to maximise the possibility of a beneficial impact on connection and hopefulness
Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention.
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
Co-production of future scenarios of policy action plans in a science-policy-industry interface – The case of microfibre pollution from waste water treatment plants in Norway
One of the ambitions of the UN Decade of Ocean Science is stakeholder interaction to co-produce new ideas and solutions for policy action plans to ensure that environmental challenges are mitigated in a timely manner. Regulations around the release of microfibres are largely lacking, and we are at an excellent point of departure to test integrative methods of such co-production. We co-designed conceptual maps and Bayesian Belief Networks with probabilistic future scenarios within both inter- and intra-sectoral workshops with industry and scientific stakeholders to gain comparable results of policy action scenarios for curbing the challenge of microfibre pollution within this context. We found that when scientists worked on this alone, their focus was different than when working together with industry directly. Scientists focused on methods for avoiding release into the environment from a technical vantage point, whereas industry emphasized regulatory requirements needed to avoid ambiguity within the sector
Co-production of future scenarios of policy action plans in a science-policy-industry interface – The case of microfibre pollution from waste water treatment plants in Norway
One of the ambitions of the UN Decade of Ocean Science is stakeholder interaction to co-produce new ideas and solutions for policy action plans to ensure that environmental challenges are mitigated in a timely manner. Regulations around the release of microfibres are largely lacking, and we are at an excellent point of departure to test integrative methods of such co-production. We co-designed conceptual maps and Bayesian Belief Networks with probabilistic future scenarios within both inter- and intra-sectoral workshops with industry and scientific stakeholders to gain comparable results of policy action scenarios for curbing the challenge of microfibre pollution within this context. We found that when scientists worked on this alone, their focus was different than when working together with industry directly. Scientists focused on methods for avoiding release into the environment from a technical vantage point, whereas industry emphasized regulatory requirements needed to avoid ambiguity within the sector.publishedVersio
Assessing Fuzzy Cognitive Mapping as a participatory and interdisciplinary approach to explore marine microfiber pollution
Fuzzy Cognitive Mapping (FCM) is a participatory modelling tool used to explore complex systems by facilitating interdisciplinary cooperation and integrating a variety of knowledge systems. Here FCM was used to explore marine microfiber pollution. Through individual interviews with representatives from the research, industry, water and environmental sectors, five stakeholder FCMs were developed and used to produce an aggregated community FCM in a stakeholder workshop. Stakeholder FCMs and the revised community FCM were used to compute how the modelled system reacted to changes under two scenarios developed during the stakeholder workshop; (i) Green Shift and (ii) increased textile consumption and production. Significant differences were observed in scenario results from the stakeholder-based models and the community-based model. For societal challenges characterized by unknowns around the problem and potential solutions, inclusion of a variety of knowledge systems through FCM and deliberation processes contribute to a more holistic picture of the system and its uncertainties
Body composition and lung cancer-associated cachexia in TRACERx
Cancer-associated cachexia (CAC) is a major contributor to morbidity and mortality in individuals with non-small cell lung cancer. Key features of CAC include alterations in body composition and body weight. Here, we explore the association between body composition and body weight with survival and delineate potential biological processes and mediators that contribute to the development of CAC. Computed tomography-based body composition analysis of 651 individuals in the TRACERx (TRAcking non-small cell lung Cancer Evolution through therapy (Rx)) study suggested that individuals in the bottom 20th percentile of the distribution of skeletal muscle or adipose tissue area at the time of lung cancer diagnosis, had significantly shorter lung cancer-specific survival and overall survival. This finding was validated in 420 individuals in the independent Boston Lung Cancer Study. Individuals classified as having developed CAC according to one or more features at relapse encompassing loss of adipose or muscle tissue, or body mass index-adjusted weight loss were found to have distinct tumor genomic and transcriptomic profiles compared with individuals who did not develop such features. Primary non-small cell lung cancers from individuals who developed CAC were characterized by enrichment of inflammatory signaling and epithelial–mesenchymal transitional pathways, and differentially expressed genes upregulated in these tumors included cancer-testis antigen MAGEA6 and matrix metalloproteinases, such as ADAMTS3. In an exploratory proteomic analysis of circulating putative mediators of cachexia performed in a subset of 110 individuals from TRACERx, a significant association between circulating GDF15 and loss of body weight, skeletal muscle and adipose tissue was identified at relapse, supporting the potential therapeutic relevance of targeting GDF15 in the management of CAC