Collaboration With People With Lived Experience of Mental Illness to Reduce Stigma and Improve Primary Care Services: A Pilot Cluster Randomized Clinical Trial

Abstract

Importance: Collaboration with people with lived experience of mental illness (PWLE), also referred to as service users, is a growing priority to reduce stigma and improve mental health care.

Objective: To examine feasibility and acceptability of conducting an antistigma intervention in collaboration with PWLE during mental health training of primary care practitioners (PCPs).

Design, setting, and participants: This pilot cluster randomized clinical trial was conducted from February 7, 2016, to August 10, 2018, with assessors, PCPs, and patients blinded to group assignment. The participants were PCPs and primary care patients diagnosed with depression, psychosis, or alcohol use disorder at primary care facilities (the cluster unit of randomization) in Nepal. Statistical analysis was performed from February 2020 to February 2021.

Interventions: In the control group, PCPs were trained on the World Health Organization Mental Health Gap Action Programme-Intervention Guide (mhGAP-IG). In the Reducing Stigma Among Healthcare Providers (RESHAPE) group, the mhGAP-IG trainings for PCPs were cofacilitated by PWLE who presented recovery testimonials through photographic narratives.

Main outcomes and measures: Prespecified feasibility and acceptability measures were adequacy of randomization, retention rates, intervention fidelity, data missingness, and safety. Outcome measures for PCPs included the Social Distance Scale (SDS), accuracy of diagnoses of mental illness in standardized role-plays using the Enhancing Assessment of Common Therapeutic factors tool (ENACT), and accuracy of diagnosis with actual patients. The primary end point was 16 months posttraining.

Results: Among the overall sample of 88 PCPs, 75 (85.2%) were men and 67 (76.1%) were upper caste Hindus; the mean (SD) age was 36.2 (8.8) years. Nine of the PCPs (10.2%) were physicians, whereas the remaining 79 PCPs (89.8%) were health assistants or auxiliary health workers. Thirty-four facilities were randomized to RESHAPE or the control group. All eligible PCPs participated: 43 in RESHAPE and 45 in the control group, with 76.7% (n = 33) and 73.3% (n = 33) retention at end line, respectively. Due to PCP dropout, 29 facilities (85.3%) were included in end line analysis. Of 15 PWLE trained as cofacilitators, 11 (73.3%) participated throughout the 3 months of PCP trainings. Among PCPs, mean SDS changes from pretraining to 16 months were -10.6 points (95% CI, -14.5 to -6.74 points) in RESHAPE and -2.79 points (-8.29 to 2.70 points) in the control group. Role-play-based diagnoses with ENACT were 78.1% (25 of 32) accurate in RESHAPE and 66.7% (22 of 33) in the control group. Patient diagnoses were 72.5% (29 of 40) accurate by PCPs in RESHAPE compared with 34.5% (10 of 29) by PCPs in the control group. There were no serious adverse events.

Conclusions and relevance: This pilot cluster randomized clinical trial found that procedures were feasible and acceptable for PCPs to be trained by PWLE. These pilot results will help inform a full trial to evaluate benefits of collaboration with PWLE during training of PCPs to reduce stigma and improve diagnostic accuracy.

Trial registration: ClinicalTrials.gov Identifier: NCT02793271.

Conflict of interest statement

Conflict of Interest Disclosures: None reported.

Figures

Figure 1.. Training as Usual (TAU) vs Reducing Stigma Among Healthcare Providers (RESHAPE) Training Strategy

Differences in strategies for PCPs being trained to deliver mental health services in primary care settings. In TAU, PCPs are trained by mental health specialists for 9 days on the mhGAP-IG vs the RESHAPE training strategy in which people with lived experience of mental illness and aspirational figures cofacilitate sections of the training alongside mental health professionals. mhGAP-IG indicates Mental Health Gap Action Programme-Intervention Guide; PCPs, primary care practitioners.

Figure 2.. Flowchart for RESHAPE Pilot Cluster Randomized Clinical Trial

CONSORT flowchart for pilot cluster randomized clinical trial comparing training as usual (standard Mental Health Gap Action Programme-Intervention Guide implementation) with the experimental condition (Reducing Stigma Among Healthcare Providers [RESHAPE] version of Mental Health Gap Action Programme-Intervention Guide training which includes people with lived experience of mental illness and aspirational figures as cofacilitators). PCP indicates primary care practitioner; RESHAPE, Reducing Stigma Among Healthcare Providers.

Figure 3.. Stigma, Knowledge, Competency, and Diagnostic Accuracy Outcomes for Primary Care Practitioners in TAU vs RESHAPE

A, Primary care practitioners’ (PCPs’) absolute change and 95% CI for baseline (pretraining) to midline (4 months after training) and baseline to end line (16 months after training) for training as usual (TAU) and Reducing Stigma Among Healthcare Providers (RESHAPE). B, Diagnostic accuracy in standardized role-plays is presented for 4- and 16-months posttraining, and diagnostic accuracy with actual patients is presented for the period of 14 to 22 months after training. Sample size: midline primary care practitioners (n = 40 TAU; n = 38 RESHAPE); end line primary care practitioners (n = 33 TAU; n = 33 RESHAPE); actual patients (n = 31 TAU; n = 51 RESHAPE). ENACT indicates Enhancing Assessment of Common Therapeutic Factors; IAT, Implicit Association Test; mhGAP, mental health Gap Action Programme-Intervention Guide.