Whose responsibility? Part 1 of 2: A scale to assess how stakeholders apportion responsibilities for addressing the needs of persons with mental health problems.

BACKGROUND: Individuals with mental health problems have multiple, often inadequately met needs. Responsibility for meeting these needs frequently falls to patients, their families/caregivers, and governments. Little is known about stakeholders' views of who should be responsible for these needs and there are no measures to assess this construct. This study's objectives were to present the newly designed Whose Responsibility Scale (WRS), which assesses how stakeholders apportion responsibility to persons with mental health problems, their families, and the government for addressing various needs of persons with mental health problems, and to report its psychometric properties. METHODS: The 22-item WRS asks respondents to assign relative responsibility to the government versus persons with mental health problems, government versus families, and families versus persons with mental health problems for seven support needs. The items were modelled on a World Values Survey item comparing the government's and people's responsibility for ensuring that everyone is provided for. We administered English, Tamil, and French versions to 57 patients, 60 family members, and 27 clinicians at two early psychosis programs in Chennai, India, and Montreal, Canada, evaluating test-retest reliability, internal consistency, and ease of use. Internal consistency estimates were also calculated for confirmatory purposes with the larger samples from the main comparative study. RESULTS: Test-retest reliability (intra-class correlation coefficients) generally ranged from excellent to fair across stakeholders (patients, families, and clinicians), settings (Montreal and Chennai), and languages (English, French, and Tamil). In the standardization and larger confirmatory samples, internal consistency estimates (Cronbach's alphas) ranged from acceptable to excellent. The WRS scored average on ease of comprehension and completion. Scores were spread across the 1-10 range, suggesting that the scale captured variations in views on how responsibility for meeting needs should be distributed. On select items, scores at one end of the scale were never endorsed, but these reflected expected views about specific needs (e.g., Chennai patients never endorsed patients as being substantially more responsible for housing needs than families). CONCLUSIONS: The WRS is a promising measure for use across geo-cultural contexts to inform mental health policies, and to foster dialogue and accountability among stakeholders about roles and responsibilities. It can help researchers study stakeholders' views about responsibilities, and how these shape and are shaped by sociocultural contexts and mental healthcare systems.

Adapting, updating and translating the Social Functioning Scale to assess social, recreational and independent functioning among youth with psychosis in diverse sociocultural contexts.

AIM: To compare social, recreational and independent functioning among persons with psychosis across two geo-cultural contexts, we adapted the well-established Social Functioning Scale (SFS) and translated it into French and Tamil. We present the development and psychometric testing of this adaptation, the SFS-Early Intervention. METHODS: Sixteen items were added to reflect contemporary youth activities (e.g., online games) and 31 items adapted to enhance applicability and/or include context-specific examples (e.g., 'church activity' replaced with 'religious/spiritual activity'). Psychometric properties and participant feedback were evaluated. RESULTS: Test-retest reliability (ICCs) ranged from 0.813 to 0.964. Internal consistency (Cronbach's α) ranged from .749 to .936 across sites and languages. Correlations with original subscales were high. The scale was rated easy to complete and understand. CONCLUSIONS: The SFS-Early Intervention is a promising patient-reported measure of social, recreational and independent functioning. Our approach shows that conceptually sound existing measures are adaptable to different times and contexts.

Fit for purpose: Conception and psychometric evaluation of developmentally appropriate measures to assess functional recovery in first-episode psychosis across geo-cultural contexts.

OBJECTIVE: Given the paucity of functional recovery measures for young people with psychosis, we developed and conducted psychometric testing of the Functional Outcomes Interview (FOI) and the Roles and Aspirations Among Youth scale (RAY; a much-needed patient-reported outcome measure). METHOD: Both measures were developed in English, Tamil, and French through discussions with professionals, participants, and families at early psychosis programs in Canada and India. The FOI assesses the number and tenure of functional roles and allows the nuanced assessment of each role in terms of performance, need for support, and quality of social contacts. The roles include work, school, household responsibilities, parenting/caregiving, and efforts to return to work/school. The RAY is a self-report of current roles and future aspirations. Test-retest reliability, internal consistency, factorial validity, and concurrent validity for the RAY; and inter-rater reliability (IRR), internal consistency, and concurrent validity for the FOI were assessed. RESULTS: The RAY had adequate internal consistency and temporal stability and was unidimensional in factor analysis. The FOI had acceptable IRR and internal consistency, as evinced by comparable performance ratings across functional roles. Significant associations between our novel measures and well-established measures of functioning and negative symptoms indicate concurrent validity. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The FOI and RAY were designed to be youth friendly, assess aspirations, and acknowledge individuals as desiring and holding multiple roles. They thus represent a significant advancement in assessing functional recovery in first-episode psychosis. Having been tested in two distinct settings, these measures show promise for wider deployment across geo-cultural contexts. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

ShareDisk: A novel visual tool to assess perceptions about who should be responsible for supporting persons with mental health problems.

OBJECTIVES: Views on who bears how much responsibility for supporting individuals with mental health problems may vary across stakeholders (patients, families, clinicians) and cultures. Perceptions about responsibility may influence the extent to which stakeholders get involved in treatment. Our objective was to report on the development, psychometric properties and usability of a first-ever tool of this construct. METHODS: We created a visual weighting disk called 'ShareDisk', measuring perceived extent of responsibility for supporting persons with mental health problems. It was administered (twice, 2 weeks apart) to patients, family members and clinicians in Chennai, India (N = 30, 30 and 15, respectively) and Montreal, Canada (N = 30, 32 and 15, respectively). Feedback regarding its usability was also collected. RESULTS: The English, French and Tamil versions of the ShareDisk demonstrated high test-retest reliability (rs = .69-.98) and were deemed easy to understand and use. CONCLUSION: The ShareDisk is a promising measure of a hitherto unmeasured construct that is easily deployable in settings varying in language and literacy levels. Its clinical utility lies in clarifying stakeholder roles. It can help researchers investigate how stakeholders' roles are perceived and how these perceptions may be shaped by and shape the organization and experience of healthcare across settings.

A controlled evaluation of a targeted early case detection intervention for reducing delay in treatment of first episode psychosis.

PURPOSE: Interventions aimed at influencing specific pathways to care may reduce the duration of untreated psychosis (DUP). The purpose of this study was to reduce delay in referral to an early intervention service following first contact for help seeking for psychosis in a defined urban catchment area. METHODS: Using a historical control design, we conducted a targeted intervention comprised of intensive training and education regarding first onset of psychosis and benefits of early intervention with all potential points of contact in pathways to care in a defined catchment area of a specialized early intervention (EI) service. Data collected on different components of DUP [help seeking (H-DUP) and referral (R-DUP)] and demographic and clinical characteristics on patients seeking treatment of first episode of a psychotic (FEP) disorder accepted in the EI service for 3 years before and 3 years after the intervention were contrasted. No other systemic changes occurred in this catchment area during this period. RESULTS: There was a significant increase in the number of cases of FEP referred to the EI service post-intervention from hospitals other than the parent institute, in the proportion with a diagnosis of affective psychosis and proportion of patients from a lower socioeconomic status (SES). Although largest proportion of patients continued to make their first contact with community services, the latter failed to refer cases of psychosis to the EI service despite making a large number of mostly non-cases (for psychosis). The intervention had no direct effect on total DUP, R-DUP or H-DUP. After controlling for diagnosis and SES, post-intervention, R-DUP remained significantly lower for patients making first contact with the emergency service of the parent institute. CONCLUSIONS: The intervention failed to reduce R-DUP for patients making contact with or referred from community services and most patients still used hospital resources to enter treatment at the EI service.

Concerns reported by family members of individuals with first-episode psychosis.

AIM: Our aim was to examine the concerns reported by family members and other caregivers of individuals with first-episode psychosis (FEP). METHODS: Family members who attended group psychoeducation selected their top two concerns from a list of nine concerns: stigma, medication, substance abuse, social behaviour, stressful situations, self-esteem and identity, sexuality and intimacy, early warning signs, and resources and support. RESULTS: Parents, particularly mothers, were a significant majority of those who attended psychoeducation sessions. In order of frequency of endorsement, the concerns endorsed were self-esteem and identity, social behaviour, substance abuse, medications, stressful situations, early warning signs, resources and support, stigma, and sexuality and intimacy. CONCLUSION: Families were most concerned about the self-esteem and identity of their young relatives with FEP. Our findings suggest that early intervention programmes should specifically address issues of self-esteem and identity. Further research on the concerns shared by families of individuals with FEP is needed.