'We are the change' - An innovative community-based response to address self-stigma: A pilot study focusing on people living with HIV in Zimbabwe

Abstract

Introduction: Self-stigma-negative self-judgements resulting in shame, worthlessness and self-blame-may play a crucial role in emotional reactions and cause emotional distress among many people living with HIV and other chronic illnesses. Furthermore, self-stigma negatively impacts on self-agency, quality of life, adherence to treatment, and access to services. High levels of self-stigma have been reported across many countries, however few programmes or interventions exist to specifically tackle this phenomenon. This paper reports the findings of a pilot study carried out in Zimbabwe using a programme incorporating "Inquiry-Based Stress Reduction (IBSR): The Work of Byron Katie"-a guided form of self-inquiry which helps users to overcome negative thoughts and beliefs.

Objectives: The primary objective of this uncontrolled pilot study was to examine the potential role of the IBSR intervention in helping people living with HIV to overcome self-stigma and associated states.

Methods: 23 people living with HIV (17 Female, 6 male, average age 41 years) were recruited from a local HIV support network, via open call for volunteers. All participants received the intervention, consisting of a 12-week facilitated programme using techniques derived from IBSR: The Work of Byron Katie. Qualitative and quantitative data were collected and analysed pre- and post-programme.

Results: After taking part in the intervention, participants reported significant improvements in factors including self-stigma (1-month follow-up vs baseline Z = 2.1, p = 0.039; 3-month follow-up vs baseline Z = 3.0, p = 0.003, n = 23, Wilcoxon Matched Pairs Signed Rank Test) and depression (1mo vs baseline Z = 3.7, p = <0.001; 3mo vs baseline Z = 3.3, p = 0.001). Qualitatively, participants reported improvements including lessened fears around disclosure of their HIV status, reduced feelings of life limitations due to HIV, and greater positive mentality. Improvements persisted at three-month follow-up.

Conclusion: With further development and larger comparative studies to confirm effects, the IBSR programme could become a novel tool to enable people living with HIV to support themselves in overcoming self-stigma.

Fig 1. Core beliefs which contribute to HIV self-stigma.

Showing core beliefs contributing to HIV self-stigma among persons living with HIV (unshaded boxes), which fall broadly across four categories (shaded boxes): Disclosure; Sexuality & Sexual Pleasure; Self-perception; and Body, illness and death. (Reproduced from Ferris France et al., 2015 [12] (Swiss Med Wkly. 2015;145:w14113) under a CC-BY License with permission from EMH Swiss Medical Publishers Ltd., original copyright 2015).

Fig 2. Sequential mixed methods study design.

Initial data collection and analysis of quantitative scales was carried out using a questionnaire delivered to participants, incorporating items from the Internalised AIDS Stigma scale; Centre for Epidemiologic Studies–Depression scale; and HIV/AIDS Targeted Quality of Life Scale. This was followed by qualitative data collection and thematic analysis from Focus Group Discussions and one-on-one Interviews.

Fig 3. Alignment of themes from participant interviews with Ryff scales of wellbeing.

Showing categories (left column, dark grey), and themes (middle column; light grey) which emerged during thematic analysis of participant interviews and focus group discussions. These broadly fell into the six dimensions of wellbeing (right column; unshaded), as proposed by Ryff and Keyes [73], suggesting that this scale may be of future utility in measuring outcomes following interventions that address HIV self-stigma.