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To develop and validate two new standardised measures assessing, respectively, experienced discrimination (Covid-19 Experienced DISCrimination scale, CEDISC) and internalised stigma (COvid-19 INternalised Stigma scale, COINS) in people who had been infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) or had developed coronavirus disease 2019 (Covid-19) disease.
Methods
Both the CEDISC and the COINS were developed in Italian and tested for ease of use, comprehension, acceptability, the relevance of items and response options within a focus group session. Online cross-sectional validation survey was conducted among adults infected with SARS-CoV-2 or who developed Covid-19 disease, members of a closed Facebook discussion group in Italy. Exploratory factor analysis (EFA) with Promax oblique rotation; the Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy and the Bartlett's test of sphericity were used to assess the suitability of the sample for factor analysis. Reliability was assessed as internal consistency using Cronbach's alpha and as test–retest reliability using weighted kappa and intraclass correlation coefficient (ICC). Precision was examined by Kendall's tau-b coefficient.
Results
Overall, 579 participants completed the CEDISC, 519 also completed the COINS, 155 completed the retest for both scales after two weeks. The 12 items of the CEDISC converged over a 2-factor solution (‘social life’ and ‘close relations’) accounting for 49.2% of the variance (KMO = 0.894; Bartlett's test p < 0.001); the 13 items of the COINS converged over a 3-factor solution (‘self-perception’, ‘close relations’ and ‘social life’) accounting for 67.7% (KMO = 0.827; Bartlett's test p < 0.001). Cronbach's α was 0.848 for the CEDISC, and 0.837 for the COINS. The CEDISC showed three items (25%) with kappa between 0.61 and 0.80 and seven (58.4%) between 0.41 and 0.60, with only two items scoring 0.21 and 0.40; the COINS had ten items (76.9%) with kappa ranging from 0.41 to 0.60, and three items below 0.31. ICC was 0.906 (95% CI, 0.871–0.932) for the, CEDISC and 0.860 (95% CI, 0.808–0.898) for the COINS. Kendall's tau-b ranged from 0.360 to 0.556 (p < 0.001) for the CEDISC and from 0.290 to 0.606 (p < 0.001) for the COINS.
Conclusions
Both the CEDISC and the COINS are two valid and reliable scales to be used in studies examining the role of stigma and discrimination of people infected with SARS-CoV-2 and Covid-19 patients, and in research evaluating interventions designed to mitigate stigma in this population.
Mental health patients can experience involuntary treatment as disempowering and stigmatising, and contact with recovered peers is cited as important for countering stigma and fostering agency and autonomy integral to recovery.
Aims
To advance understanding of the interaction between involuntary treatment and contact with recovered peers, and explore hypothesised relationships to mechanisms of self-evaluation relevant to recovery.
Method
Eighty-nine adults diagnosed with serious mental illness completed items to assess involuntary treatment experience and the extent of prior contact with recovered peers, the Internalised Stigma of Mental Illness Scale, the Self-efficacy for Personal Recovery Scale, the Questionnaire about the Process of Recovery and relevant demographic and clinical scales.
Results
Contact with recovered peers was found to moderate the effects of involuntary treatment on internalised stigma. Sequential conditional process models (i.e. moderated mediation) then demonstrated that conditional internalised stigma (i.e. moderated by contact with recovered peers) mediated the indirect effect of involuntary treatment on recovery-specific self-efficacy, which in turn influenced recovery. Compared with those with low contact with recovered peers, recovery scores were 3.54 points higher for those with high contact.
Conclusions
Although study methods limit causative conclusions, findings are consistent with proposals that contact with recovered peers may be helpful for this patient group, and suggest this may be particularly relevant for those with involuntary treatment experience. Directions for future research, to further clarify measurement and conceptual tensions relating to the study of (dis)empowering experiences in mental health services, are discussed in detail.
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