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Abstract
Background HIV-related self-stigma is a significant barrier to HIV management. However, very little research has explored this phenomenon, particularly in sub-Saharan Africa. This study explored the beliefs, experiences, and impacts of HIV self-stigma amongst adolescents and young adults (AYALHIV) in Harare, Zimbabwe to inform future interventions. It aimed to capture the lived experience of self-stigmatization among AYALHIV and its impact on their social context using Corrigan et al (2009) self-stigma framework of ‘awareness’, ‘agreement’, and ‘application’. Methods Virtual semi-structured key informant interviews were conducted between June and July 2020 with adolescents and young adults (Female = 8; Male = 8) living with HIV (18–24 years) in Harare, Zimbabwe. We conducted the interviews with a purposive sample of AYALHIV enrolled in Africaid’s ‘Zvandiri’ program which provides HIV support services. Interviews were mainly conducted in English and with three in Shona, the main indigenous language. Audio-recorded qualitative data were transcribed, translated into English (where necessary) and deductively coded using Corrigan et al.’s self-stigma framework. The outbreak of SARS-CoV-2 coincided with the commencement of data collection activities, which impacted on both the sample size and a shift from in-person to virtual interviewing methods. Results Sixteen respondents (50% male) took part in the interviews. The mean age of respondents was 22 years. All respondents reported HIV-related self-stigma either occasionally or frequently. Three main themes of self-stigmatizing experiences emerged: disclosure, relationships, and isolation. These themes were then analyzed within the self-stigma development framework by Corrigan et al. (2009) known as ‘the three As’: awareness, agreement, and application of self-stigmatizing thoughts. Respondents’ experiences of self-stigma reportedly led to poor well-being and decreased mental and physical health. Gendered experiences and coping mechanisms of self-stigma were reported. Data suggested that context is key in the way that HIV is understood and how it then impacts the way people living with HIV (PLHIV) live with, and experience, HIV. Conclusions HIV-related negative self-perceptions were described by all respondents in this study, associated with self-stigmatizing beliefs that adversely affected respondents’ quality of life. Study findings supported Corrigan et al.’s framework on how to identify self-stigma and was a useful lens through which to understand HIV-related self-stigma among young people in Harare. Study findings highlight the need for interventions targeting PLHIV and AYALHIV to be context relevant if they are to build individual resilience, while working concurrently with socio-political and systemic approaches that challenge attitudes to HIV at the wider societal levels. Finally, the gendered experiences of self-stigma point to the intersecting layers of self-stigma that are likely to be felt by particularly marginalized populations living with HIV and should be further explored. |
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Abstract: 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 (2019) |
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Abstract: Sex workers are among the most stigmatised people globally, with sex workers in Vietnam being no exception. Self-stigma affects sex workers adversely, harming psychological health and acting as a barrier to seeking health care. To inform programmes and interventions to improve well-being, identifying unhelpful or negative core beliefs may provide the basis from which individuals can be supported. With this in mind, this study aimed to gain the perspective of sex workers in Vietnam on the contexts of their working lives. Data were collected in Hanoi. Fourteen semi-structured interviews were conducted with Vietnamese sex workers over the age of 18 who were working or formerly worked in Vietnam. Data were analysed manually, informed by theoretical models of self-stigma using inductive thematic analysis. The analysis identified negative/unhelpful core beliefs (disclosure, self-stigma and shame, sexuality, sexual pleasure relationships, health care); contextual life circumstances (sex work, violence, traditional education); and coping mechanisms (problem-focused coping, emotion-focused coping). Findings identify the importance of core beliefs in understanding self-stigma, paving the way for programmes and interventions to address self-stigma among sex workers (2019)
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PRINCIPLES: Human immunodeficiency virus (HIV) related self-stigma – negative self-judgements resulting in shame, worthlessness and self-blame – negatively influences access to care and treatment, and overall quality of life for people living with HIV (PLHIV). Despite evidence that high levels of self-stigma exist among PLHIV, and is experienced to a far greater extent than stigma received from the broader community, there is a paucity of research aimed at understanding causes and functions of self-stigma, and an absence of interventions to mitigate its harmful effects. Understanding the core beliefs underlying self-stigma is therefore essential.
METHODS: This pilot study used a qualitative approach to analyse interviews and written statements to uncover core beliefs underlying self-stigma, the functions thereof, and strategies used to overcome it, among a heterogeneous group of PLHIV in Ireland. RESULTS: Core beliefs underlying HIV-related self-stigma were uncovered and grouped into four categories: disclosure; sexuality and sexual pleasure; self-perception; and body, illness and death. Reported functions of self-stigma included contributing to maintaining a “victim” status; providing protection against stigma received from others; and justifying non-disclosure of HIV status. To cope with self-stigma, participants highlighted: community involvement and professional development; personal development; and connection to others and sense of belonging. Findings were also used to create a conceptual framework. CONCLUSIONS: This study helps fill identified gaps in knowledge about self-stigma as experienced by PLHIV. By understanding the core beliefs driving self-stigma, it will be possible to create targeted interventions to challenge and overcome such beliefs, supporting PLHIV to achieve improved wellbeing and lead productive lives free of self-limitation and self-judgement (2015) | ||
The theoretical framework for this work can be seen from the figures below:
Figure 1
Framework for qualitative analysis of interview data. Three main areas of analysis are shown: Categories of core beliefs (A, red), Functions of self-stigma (B, magenta) and Coping strategies (C, blue). Emergent themes were organised into categories (solid boxes), and subcategories where required (open boxes).
Figure 2
Conceptual framework of self-stigma. Designed using concepts from Morrison (2006) [52], the framework comprises three interacting groups of factors (factors listed are non- exhaustive) which influence self-stigma: social factors, contextual factors and self factors. The complex interaction between these factors influences the development and perpetuation of self-stigma.
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A Qualitative Exploration of the Beliefs and Experiences of HIV Self-Stigma Amongst Young Adults Living with HIV in Harare, Zimbabwe
This study was completed to help inform and design the BE-SWAG program in Harare, Zimbabwe. This presentation is a brief summary of the research and the methodologies applied to collect the qualitative data. Camille Rich presented this at the International Conference on Global Health held by the World Academy of Science, Engineering and Technology on January 21st 2021. |
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References to other research using IBSR: The Work of Byron Katie for health:
1. Nye FA. The Work of Byron Katie: The effect of applying principles of inquiry on the reduction of perceived stress. Dissertation Institute of Transpersonal Psychology. 2011.
2. Leufke R, Zilcha-Mano S, Feld A, Lev-Ari S. Effects of “The Work” Meditation on
Psychopathologic Symptoms: A Pilot Study. Journal of Alternative and Complementary Therapies. 2013; 147-152. (doi: 10.1089/act.2013.19303).
3. Lev-ari S, Zilcha-Mano S, Rivo L, Geva R , Ron I. A prospective pilot clinical trial of "The Work" meditation technique for survivors of breast cancer. European Journal of Integrative Medicine. 2013; 5(6): 487-494. [doi:10.1016/j.eujim.2013.07.003).
4. Landau C, Lev-Ari S, Cohen-Mansfield J, Tillinger E, Geva R, Tarrasch R, Mitnik I, Friedman E. Randomized controlled trial of Inquiry-Based Stress Reduction (IBSR) technique for BRCA1/2 mutation carriers. Psychooncology. 2014 Oct 18. (doi: 10.1002/pon.3703).
5. Smernoff E, Mitnik I, Kolodner K, Lev-Ari S. The Effects of "The Work" Meditation (Byron Katie) on Psychological Symptoms and Quality of Life-A Pilot Clinical Study. Explore (NY). 2014 Oct 22. pii: S1550-8307(14)00206-7. (doi: 10.1016/j).
6. Mitnik I, Lev-Ari S. The Effects of The Work meditation technique on psychological scales among a non-clinical sample, Harefuah. January 2015.
7. France, N. F., Macdonald, S. H. F., Conroy, R. R., Chiroro, P., Cheallaigh, D. N., Nyamucheta, M., Mapanda, B., Shumba, G., Mudede, D., & Byrne, E. (2019). ‘We are the change’: An innovative community-based response to address self-stigma: A pilot study focusing on people living with HIV in Zimbabwe. PLoS ONE, 14(2), e02101552.
8. Gaanderse, J. (2013). Leren relativeren: Geef een positieve wending aan je gedachten—Praktische handleiding voor cognitieve mindfulness priming therapie. Amsterdam: Swp, Uitgeverij B.V.
9. Jundt, T. (2017). Effects of an IBSR—inquiry-based stress reduction intervention on contingencies of self-worth. (Unpublished thesis). University of Mannheim, Germany.
10.Krispenz, A. & Dickhauser, O. (2018). Effects of an inquiry-based short intervention on test anxiety in comparison to alternate coping strategies. Frontiers in Psychology, 9(201).
11. Krispenz, A. & Dickhauser, O. (2019). Reduction of chronic stress and trait anxiety by inquiry of cognitive appraisals with the inquiry-based stress reduction (IBSR) method. Open Psychology, 1, 185-199.
12. Krispenz, A. & Dickhauser, O. (2016). That’s stressful—"Is it true?”—Lasting reduction of chronic stress and trait anxiety through questioning of stressful cognitions. Paper presented at the 50th Congress of the German Psychological Society, Leipzig, Germany.
13. Krispenz, A., Gort, C., Schultke, L., & Dickhauser, O. (2019). How to reduce text anxiety and academic procrastination through inquiry of cognitive appraisals: A pilot study investigating the role of academic self-efficacy. Frontiers in Psychology, 10(1917).
14. Landau, C., Lev-Ari, S., Cohen-Mansfield, J., Tillinger, E., Geva, R., Tarrasch, R., Mitnik, I, & Friedman, E. (2015). Randomized controlled trial of inquiry-based stress reduction (IBSR) technique for BRCA1/2 mutation carriers. Psycho-oncology, 24, 726-731.
15. Luff, J. & Ledingham, M. (2017). Exploring inquiry-based stress reduction (IBSR) as a counselling intervention. International Conference on Education, Psychology, and Social Sciences (ICEPS).
16. Mitnik, I. & Lev-ari, S. (2015). The effects of “The Work” meditation technique on psychological scales among a non-clinical sample. Harefuah, 154(1), 16-20.
17. Schnaider-Levi, L., Mitnik, I., Zafrani, K., Goldman, Z., & Lev-ari, S. (2017). Inquiry-based stress reduction meditation technique for teacher burnout: A qualitative study. Mind, Brain, and Education, 11(2), 75-84.
18. Schnaider-Levi, L., Zafrani, K., Goldman, Z., Mitnik, I., & Lev-ari, S. (under review). Controlled trial of the inquiry-based stress reduction (IBSR) meditation technique for teachers’ burnout. Tel Aviv University.
19. Smernoff, E., Mitnik, I., & Lev-ari, S. (2019). The effects of inquiry-based stress reduction (IBSR) on mental health and well-being among a non-clinical sample. Complementary Therapies in Clinical Practice, 34, 30-34.
2. Leufke R, Zilcha-Mano S, Feld A, Lev-Ari S. Effects of “The Work” Meditation on
Psychopathologic Symptoms: A Pilot Study. Journal of Alternative and Complementary Therapies. 2013; 147-152. (doi: 10.1089/act.2013.19303).
3. Lev-ari S, Zilcha-Mano S, Rivo L, Geva R , Ron I. A prospective pilot clinical trial of "The Work" meditation technique for survivors of breast cancer. European Journal of Integrative Medicine. 2013; 5(6): 487-494. [doi:10.1016/j.eujim.2013.07.003).
4. Landau C, Lev-Ari S, Cohen-Mansfield J, Tillinger E, Geva R, Tarrasch R, Mitnik I, Friedman E. Randomized controlled trial of Inquiry-Based Stress Reduction (IBSR) technique for BRCA1/2 mutation carriers. Psychooncology. 2014 Oct 18. (doi: 10.1002/pon.3703).
5. Smernoff E, Mitnik I, Kolodner K, Lev-Ari S. The Effects of "The Work" Meditation (Byron Katie) on Psychological Symptoms and Quality of Life-A Pilot Clinical Study. Explore (NY). 2014 Oct 22. pii: S1550-8307(14)00206-7. (doi: 10.1016/j).
6. Mitnik I, Lev-Ari S. The Effects of The Work meditation technique on psychological scales among a non-clinical sample, Harefuah. January 2015.
7. France, N. F., Macdonald, S. H. F., Conroy, R. R., Chiroro, P., Cheallaigh, D. N., Nyamucheta, M., Mapanda, B., Shumba, G., Mudede, D., & Byrne, E. (2019). ‘We are the change’: An innovative community-based response to address self-stigma: A pilot study focusing on people living with HIV in Zimbabwe. PLoS ONE, 14(2), e02101552.
8. Gaanderse, J. (2013). Leren relativeren: Geef een positieve wending aan je gedachten—Praktische handleiding voor cognitieve mindfulness priming therapie. Amsterdam: Swp, Uitgeverij B.V.
9. Jundt, T. (2017). Effects of an IBSR—inquiry-based stress reduction intervention on contingencies of self-worth. (Unpublished thesis). University of Mannheim, Germany.
10.Krispenz, A. & Dickhauser, O. (2018). Effects of an inquiry-based short intervention on test anxiety in comparison to alternate coping strategies. Frontiers in Psychology, 9(201).
11. Krispenz, A. & Dickhauser, O. (2019). Reduction of chronic stress and trait anxiety by inquiry of cognitive appraisals with the inquiry-based stress reduction (IBSR) method. Open Psychology, 1, 185-199.
12. Krispenz, A. & Dickhauser, O. (2016). That’s stressful—"Is it true?”—Lasting reduction of chronic stress and trait anxiety through questioning of stressful cognitions. Paper presented at the 50th Congress of the German Psychological Society, Leipzig, Germany.
13. Krispenz, A., Gort, C., Schultke, L., & Dickhauser, O. (2019). How to reduce text anxiety and academic procrastination through inquiry of cognitive appraisals: A pilot study investigating the role of academic self-efficacy. Frontiers in Psychology, 10(1917).
14. Landau, C., Lev-Ari, S., Cohen-Mansfield, J., Tillinger, E., Geva, R., Tarrasch, R., Mitnik, I, & Friedman, E. (2015). Randomized controlled trial of inquiry-based stress reduction (IBSR) technique for BRCA1/2 mutation carriers. Psycho-oncology, 24, 726-731.
15. Luff, J. & Ledingham, M. (2017). Exploring inquiry-based stress reduction (IBSR) as a counselling intervention. International Conference on Education, Psychology, and Social Sciences (ICEPS).
16. Mitnik, I. & Lev-ari, S. (2015). The effects of “The Work” meditation technique on psychological scales among a non-clinical sample. Harefuah, 154(1), 16-20.
17. Schnaider-Levi, L., Mitnik, I., Zafrani, K., Goldman, Z., & Lev-ari, S. (2017). Inquiry-based stress reduction meditation technique for teacher burnout: A qualitative study. Mind, Brain, and Education, 11(2), 75-84.
18. Schnaider-Levi, L., Zafrani, K., Goldman, Z., Mitnik, I., & Lev-ari, S. (under review). Controlled trial of the inquiry-based stress reduction (IBSR) meditation technique for teachers’ burnout. Tel Aviv University.
19. Smernoff, E., Mitnik, I., & Lev-ari, S. (2019). The effects of inquiry-based stress reduction (IBSR) on mental health and well-being among a non-clinical sample. Complementary Therapies in Clinical Practice, 34, 30-34.