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By Deirdre Ní Cheallaigh and Deirdre Lomasney
People living with HIV can often find themselves stigmatised in their communities. But ‘self-stigma’ is also a huge problem.
Self-stigma is negative self-judgment resulting in shame, worthlessness and blame and represents an important but neglected aspect of living with HIV.
It can limit meaningful self-agency, quality of life, adherence to treatment and access to health services.
The People Living with HIV Stigma Index tells us that self-stigma is up to three times higher than other forms of stigma, but there are few interventions to specifically tackle this issue.
In response to the problem of self-stigma, Trócaire in partnership with the Zimbabwe Network of People Living with HIV (ZNNP+) and Connect, have piloted a new initiative “We Are the Change: Dealing with HIV Related Self Stigma in Zimbabwe” using a method called ‘Inquiry Based Stress Reduction’ (IBSR).
IBSR aims to support participants to work through self-stigmatising beliefs including self-abasement, shame, guilt and hopelessness.
Based on ‘The Work’ of Byron Katie, the 12-week pilot programme was undertaken by two groups of 11 participants.
Results at the three-month follow-up show positive impact. Qualitatively, participants report profound shifts in their lives around living positively with HIV, improved communication with their families, lessened fears about disclosure, not feeling limited by HIV and increased peacefulness.
Quantitatively, results show statistically significant improvements in a number of areas (% improved): self-stigma (61%), depression (78%), life satisfaction (52%), fears around disclosure (52%) and daily activity (70%).
The pilot model and impact will be carefully measured and evaluated, and based on that, the programme will be scaled up across Zimbabwe.
A Resource Centre was launched on 16th October 2015, as the next phase of the programme. The Resource Centre is at Connect, a well-established psychological and educational organisation in Zimbabwe.
Nyasha Tugwete from The Community of The Work in Zimbabwe spoke at the launch about her own personal experience living with HIV and dealing with self-stigma, she said: “From the day I knew my status, I saw myself as unfit, as one who couldn’t continue with my work, as somebody who is in the grave, as one who couldn’t see her sons grow.”
She continued by talking about the positive impact of IBSR on her own life and of her current work using the tool to help other people living with HIV. She hopes the programme will expand beyond Zimbabwe stating: “As a trainee facilitator of IBSR, I would love to see this tool or this intervention being taken to the whole of Zimbabwe, the ten provinces, into southern Africa, into Africa as a region.”
Zimbabwe’s Deputy Minister for Health and Child Care, Aldrin Musiiwa attended the launch and praised the programme saying: “I believe that we in Zimbabwe have devised an innovative and effective response to self-stigma, and that we can be leaders in this area, not only here at home but globally.”
Trócaire will present “We Are the Change: Dealing with HIV Related Self Stigma in Zimbabwe” as part of the panel on Stigma, Self-Stigma and Disclosure at the International Conference on AIDS and STIs in Africa (ICASA 2015) on 1 December, World AIDS Day.
This is the 18th ICASA and will take place in Harare, Zimbabwe from 29th November to 4th December.
Note: The Internalized-AIDS Stigma Scale and the Quality of Life scale were used and research was supported by Royal College of Surgeons in Ireland. Ethics approval was secured from the Medical Research Council of Zimbabwe with a local research institution Impact Research International.
