Design decisions and data completeness for experience sampling methods used in psychosis: systematic review.

BACKGROUND: The experience sampling method (ESM) is an intensive longitudinal research method.  Participants complete questionnaires at multiple times about their current or very recent state. The design of ESM studies is complex. People with psychosis have been shown to be less adherent to ESM study protocols than the general population. It is not known how to design studies that increase adherence to study protocols. A lack of typology makes it is hard for researchers to decide how to collect data in a way that allows for methodological rigour, quality of reporting, and the ability to synthesise findings. The aims of this systematic review were to characterise the design choices made in ESM studies monitoring the daily lives of people with psychosis, and to synthesise evidence relating the data completeness to different design choices. METHODS: A systematic review was conducted of published literature on studies using ESM with people with psychosis. Studies were included if they used digital technology for data collection and reported the completeness of the data set. The constant comparative method was used to identify design decisions, using inductive identification of design decisions with simultaneous comparison of design decisions observed. Weighted regression was used to identify design decisions that predicted data completeness. The review was pre-registered (PROSPERO CRD42019125545). RESULTS: Thirty-eight studies were included. A typology of design choices used in ESM studies was developed, which comprised three superordinate categories of design choice: Study context, ESM approach and ESM implementation. Design decisions that predict data completeness include type of ESM protocol used, length of time participants are enrolled in the study, and if there is contact with the research team during data collection. CONCLUSIONS: This review identified a range of design decisions used in studies using ESM in the context of psychosis. Design decisions that influence data completeness were identified. Findings will help the design and reporting of future ESM studies. Results are presented with the focus on psychosis, but the findings can be applied across different mental health populations.

Institutional injustice: Implications for system transformation emerging from the mental health recovery narratives of people experiencing marginalisation.

BACKGROUND: Institutional injustice refers to structures that create disparities in resources, opportunities and representation. Marginalised people experience institutional injustice, inequalities and discrimination through intersecting personal characteristics and social circumstances. This study aimed to investigate sources of institutional injustice and their effects on marginalised people with experience of mental health problems. METHODS: Semi-structured interviews were conducted with 77 individuals from marginalised groups with experience of mental health problems, including psychosis, Black, Asian and minority ethnic (BAME) populations, complex needs and lived experience as a work requirement. These were analysed inductively enabling sensitising concepts to emerge. FINDINGS: Three processes of institutional injustice were identified: not being believed because of social status and personal backgrounds; not being heard where narratives did not align with dominant discourses, and not being acknowledged where aspects of identity were disregarded. Harmful outcomes included disengagement from formal institutions through fear and mistrust, tensions and reduced affiliation with informal institutions when trying to consolidate new ways of being, and damaging impacts on mental health and wellbeing through multiple oppression. CONCLUSIONS: Institutional injustice perpetuates health inequalities and marginalised status. Master status, arising from dominant discourses and heuristic bias, overshadow the narratives and experiences of marginalised people. Cultural competency has the potential to improve heuristic availability through social understandings of narrative and experience, whilst coproduction and narrative development through approaches such as communities of practice might offer meaningful avenues for authentic expression.

INCRESE: Development of an Inventory to Characterize Recorded Mental Health Recovery Narratives.

OBJECTIVE: Mental health recovery narratives are increasingly used in clinical practice, public health campaigns, and as directly-accessed online resources. No instrument exists to describe characteristics of individual recovery narratives. The aims were to develop and evaluate an inventory to characterize recorded recovery narratives. RESEARCH DESIGN AND METHODS: A preliminary version of the Inventory of Characteristics of Recovery Stories (INCRESE) was generated from an existing theory-base. Feasibility and acceptability were evaluated by two coders each rating 30 purposively-selected narratives. A refined version was produced and a formal evaluation conducted. Reliability was assessed by four coders each rating 95 purposively-selected narratives. Inter-coder reliability was assessed using Fleiss's kappa coefficients; test-retest reliability was assessed using intra-class correlation coefficients (ICCs). RESULTS: Multiple refinements to description, coding categories, and language were made. Data completeness was high, and no floor or ceiling effects were found. Intercoder reliability ranged from moderate (k=0.58) to perfect (k=1.00) agreement. Test-retest reliability ranged from moderate (ICC=0.57) to complete (ICC=1.00) agreement. The final INCRESE comprises 77 items spanning five sections: Narrative Eligibility; Narrative Mode; Narrator Characteristics; Narrative Characteristics; Narrative Content. CONCLUSION: INCRESE is the first evaluated tool to characterize mental health recovery narratives. It addresses current concerns around normative recovery narratives being used to promote compulsory wellness, e.g. by identifying narratives that reject diagnosis as an explanatory model and those with non-upward trajectories. INCRESE can be used to establish the diversity of a narrative collection and will be used in the NEON trials (ISRCTN11152837, ISRCTN63197153, ISRCTN76355273) to allow a recommender system to match narratives to participants.

Post-traumatic growth in mental health recovery: qualitative study of narratives.

OBJECTIVES: Post-traumatic growth, defined as positive psychological change experienced as a result of the struggle with challenging life circumstances, is under-researched in people with mental health problems. The aim of this study was to develop a conceptual framework for post-traumatic growth in the context of recovery for people with psychosis and other severe mental health problems. DESIGN: Qualitative thematic analysis of cross-sectional semi-structured interviews about personal experiences of mental health recovery. SETTING: England. PARTICIPANTS: Participants were adults aged over 18 and: (1) living with psychosis and not using mental health services (n=21); (2) using mental health services and from black and minority ethnic communities (n=21); (3) underserved, operationalised as lesbian, gay, bisexual and transgender community or complex needs or rural community (n=19); or (4) employed in peer roles using their lived experience with others (n=16). The 77 participants comprised 42 (55%) female and 44 (57%) white British. RESULTS: Components of post-traumatic growth were present in 64 (83%) of recovery narratives. Six superordinate categories were identified, consistent with a view that post-traumatic growth involves learning about oneself (self-discovery) leading to a new sense of who one is (sense of self) and appreciation of life (life perspective). Observable positively valued changes comprise a greater focus on self-management (well-being) and more importance being attached to relationships (relationships) and spiritual or religious engagement (spirituality). Categories are non-ordered and individuals may start from any point in this process. CONCLUSIONS: Post-traumatic growth is often part of mental health recovery. Changes are compatible with research about growth following trauma, but with more emphasis on self-discovery, integration of illness-related experiences and active self-management of well-being. Trauma-related growth may be a preferable term for participants who identify as having experienced trauma. Trauma-informed mental healthcare could use the six identified categories as a basis for new approaches to supporting recovery. TRIAL REGISTRATION NUMBER: ISRCTN11152837.