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Self-stigma: an unspoken world of unspoken things - Nadine Ferris France

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Presentation from Nadine Ferris France at the slef-stigma roundtable convened by ReShape on 23/06/2015

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Self-stigma: an unspoken world of unspoken things - Nadine Ferris France

  1. 1. Nadine Ferris France, The Work for Change Irish Forum for Global Health/ESTHER Ireland HIV Advocate &Certified Facilitator of the Work of Byron Katie Email: nadinefrance@gmail.com Self-stigma: An unspoken world of unspoken things Source: http://onlythejodi.com/2012/06/mirror-rorrim/
  2. 2. If I don’t think I’m bad, why would I think you think I’m bad?
  3. 3. Source: http://bradnd24.wordpress.com/2010/09/17/loneliness-the-void-within/
  4. 4. Name it • Self-stigma is self-disabling inner feelings of contamination, shame, self-rejection and self- loathing experienced by people with HIV, and those who fear they have HIV, even when there is no objective reason to fear rejection or discrimination, and even when there is good objective reason to believe that they will receive external support, protection, treatment and acceptance’ (Justice E. Cameroon, 2012)
  5. 5. Where is stigma greatest? • Consistently, people living with HIV stigmatise themselves more than HIV negative people do (Simbayi, 2007, South African Stigma Index 2015) – up to three times as much
  6. 6. What the evidence says? People living with HIV (PLHA) General public South Africa (Simbayi, et al, 2007) Feel dirty 27% 10% Think PLHA are dirty Feel guilty 41% 13% Think PLHA did something to deserve it Feel ashamed 38% 16% Think PLHA should be ashamed Ireland (SOSC, 2007) Think PLHA are viewed negatively 84% 54% View PLHA negatively
  7. 7. How bad is self-stigma? • Asia-Pacific Stigma Index Study (2012) analysis of 4395 people from nine countries: 75% of people in Pakistan saying they were ashamed of their HIV status to 54% in Sri Lanka • Zimbabwe Stigma Index Study (2014), 1905 people: • 17%, said they were ashamed, 21% felt guilty. • South African Index Study (2015), of 10,473 people: • 29% felt ashamed, 28% had feelings of guilt, 31% blamed themselves, and 19% blamed others and had low self-esteem (22%). • UK Stigma Index Study (2009), of 867 people: • 44% felt ashamed, 43% felt guilty, 48% blame themselves, 64% have low self-esteem
  8. 8. Identifying and Exploring Core Beliefs Underlying Self-stigma among People Living with HIV & AIDS in Ireland Formative research
  9. 9. Breaking it down
  10. 10. (participants in Ferris France, N., 201
  11. 11. ‘It’s great when I’m here, when I’m in Open Heart House, cause I’m with like me own. But it’s different when I’m outside, I try, you know, I’m getting better, but it’s very hard... because I, in me head I know I’m just the same as everybody else, and I don’t deserve, you know, no one deserves... but that dirty feeling still stands, no matter how much I wash, or how many clothes you buy, or how pretty you look, inside your’e still that, I don’t know what you call it, worm picking away... some days like I feel toxic, [..], it’s like as if there’s something eating away from the inside that no one else can see but every day I feel a little bit less - I really believe, it’s an unspoken world of unspoken things’ (participants in Ferris France, N., 2012)
  12. 12. (participants in Ferris France, N., 201
  13. 13. Restricted agency • I can’t have a child • I can’t get a job • I can’t find normal work in places of my choice • I don’t get any opportunity at work • I can’t work in certain companies • I can’t travel where I want • I can’t share my personal items • I have to choose my friends carefully for the rest of my life or chose to stay alone (participants in Ferris France, N., 2012)
  14. 14. More of the same is not going to work Its beliefs we are dealing with
  15. 15. What can we do? •Recognise self-stigma-self- worth – be advocates! •Take action
  16. 16. Sign the Dublin Declaration on HIV self-stigma – http://bit.ly/1FwYPsQ
  17. 17. What can we do? • Be honest and start with ourselves
  18. 18. What can we do? • Design, test, fund and scale-up more innovations such as ‘We are the change’ (The Work of Bryon Katie: Inquiry-based stress reduction) • Over coming self-stigma through self-love and compassion, Positively UK
  19. 19. Intervention Guide
  20. 20. What can we do? • Be part of the paradigm shift needed to make change
  21. 21. If I don’t think I’m bad, why would I think you think I’m bad?
  22. 22. Ronan Conroy, Steve MacDonald, Elaine Byrne, Deirdre Ni Cheallaigh, Byron Katie, Ben Collins, Chris Mallouris, Shaun Mellors, Sandra King, Open Heart House participants and staff, Jo Manchester, Ian Hodgson, Fr Michael Kelly, Noerine Kaleeba, Susan Vielguth, Margot Diskin Thanks
  23. 23. References • Cameron, E 2012, Accessed online 26 October 2014: http://www.constitutionalcourt.org.za/site/judges/justicecameron/SASOP-internalised-stigma-17th-NATIONAL-CONGRESS- OF-SOUTH-AFRICAN-SOCIETY-OF-SYCHIATRISTS-7-September-2012-for-CC-website.pdf • Kalichman, S. C., Simbayi, L., Jooste, S., Toefy, Y., Cain, D., Cherry, C., et al. (2005). Development of a brief scale to measure AIDS-related stigmas in South Africa. AIDS and Behavior, 9, 135–143.Kalichman, S.C., Simbayi, L.C., Cloete, A., Mthembu, P.P., Mkhonta, R.N. & Ginindza, T., 2009. Measuring AIDS stigmas in people living with HIV/AIDS: the Internalized AIDS-Related Stigma Scale. AIDS care, 21, 87-93. • Simbayi, L., Kalichman S, Strebel A. Cloete, Nomvo H, & Mqeketo A., 2007. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Social Science & Medicine 64, 1823- 1831. • Ferris France, MacDonald et al 2012 (currently under consideration with journal) ‘An unspoken world of unspoken things’: A study identifying and exploring core beliefs underlying self-stigma among people living with HIV and AIDS in Ireland • European AIDS Clinical Society Conference, November 2013: Presentation:‘An unspoken world of unspoken things’ Accessed online 1 September 2014 www.eacsociety.org • Cairns, G., 2013, The diminished self – HIV and self-stigma, NAM Treatment Update, Issue 215: Spring 2013: Accessed online 5 October 2013 at: http://www.aidsmap.com/The-diminished-self-HIV-and-self-stigma/page/2657859/ • Mann, J., 1987. Statement at an informal briefing on AIDS to the 42nd Session of the United Nations General Assembly [online]. United Nations. Available from: http://www.jstor .org/discover/10.2307/2982189?uid=3738232&uid=2129 &uid=2&uid=70&uid=4&sid=21100918296851 [Accessed 2 July 2012]. • Link, B.G. & Phelan, J.C., 2006. Stigma and its public health implications. Lancet, 367, 528-9. • NiCheallaigh D., Ferris France, N, 2014 We are the change Zimbabwe: Video online: http://vimeo.com/100042699 (Journal article currently under preparation) • Sosc, 2007. HIV-related stigma and discrimination in Ireland today Dublin, Ireland: National Stamp Out Stigma Campaign
  24. 24. Further reading/sources • Avvais., Cnls., Rrp. & Unaids, 2009. People Living with HIV Stigma Index: Rwandan Stigma and Discrimination Survey Report Kigali, Rwanda: L’Association des Veuves Vulnérables Affectées et Infectées par le VIH/SIDA (AVVAIS), Rwandan Network of People Living with HIV (RRP+) Commission Nationale de Lutte contre le SIDA (CNLS), Le Réseau Rwandais des Personnes Vivant avec le VIH (RRP), The United Nations Joint Programme on HIV/AIDS (UNAIDS). • Brown, J.L. & Vanable, P.A., 2011. Stress management interventions for HIV-infected individuals: Review of recent intervention approaches and directions for future research. Neurobehavioral HIV Medicine, 3, 95-106. • Byron, K. & Mitchell, S. (eds.) (2002) Loving What Is: Four Questions That Can Change Your Life: Harmony Books. • Cairns, G., 2013, The diminished self – HIV and self-stigma, NAM Treatment Update, Issue 215: Spring 2013: Accessed online 5 October 2013 at: http://www.aidsmap.com/The-diminished-self-HIV-and-self-stigma/page/2657859/ • I.L. Demchenko, T.I. Sosidko, M.M. Kostyuchok, N.A. Be- lonosova, N.V. Salabai, O.M. Hvozdetska, O.S. Bryzhovata, P.I. Poliantsev. Analytical Report Based on Research Findings: The People Living with HIV Report, Ukraine, 2011: Accessed online 9 October 2013 at: http://www.stigmaindex.org/download.php?id=100 • Ferris France, N., 2012. ‘An unspoken world of unspoken things’: A study identifying and exploring core beliefs underlying self-stigma among people living with HIV and AIDS in Ireland. Unpublished Masters Thesis: Trinity College Dublin. • Ferris France, N, 2012. ‘HIV and self-stigma Core Belief Sheet: A practical tool for designing interventions to support people living with HIV’. Unpublished • Gnp+., Icw., Ippf. & Unaids., 2011. People Living with HIV Stigma Index: Asia Pacific Regional Analysis 2011 Bangkok, Thailand: Global Network of People Living with HIV and AIDS (GNP+), International Community of Women Living with HIV and AIDS (ICW), International Planned Parenthood Federation (IPPF), United Nations Joint Programme on HIV and AIDS (UNAIDS. • Hayes, C. (ed.) (2011) Clinical Psychology: A pyschoeducational cognitive behavioural approach to helping people cope, UK: Nova Science Publishers. • Hudson, A., Osborne, K., Paterson, H., Sharp, L., Stackpool-Moore, L., Give the Stigma Index Finger, Scotland Report 2009, The People Living with HIV Stigma Index: Accessed online 9 October 2013 at: http://www.stigmaindex.org/download.php?id=81 • Kalichman, S.C. & Simbayi, L., 2004. Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care: Psychological and Socio-Medical Aspects of AIDS/HIV, 16, 572-580. • Kalichman, S. C., Simbayi, L., Jooste, S., Toefy, Y., Cain, D., Cherry, C., et al. (2005). Development of a brief scale to measure AIDS-related stigmas in South Africa. AIDS and Behavior, 9, 135–143.Kalichman, S.C., Simbayi, L.C., Cloete, A., Mthembu, P.P., Mkhonta, R.N. & Ginindza, T., 2009. Measuring AIDS stigmas in people living with HIV/AIDS: the Internalized AIDS-Related Stigma Scale. AIDS care, 21, 87-93. • Lev-ari S, et al. A prospective pilot clinical trial of “The work” meditation technique for survivors of breast cancer. Eur J Integr Med (2013), http://dx.doi.org/10.1016/j.eujim.2013.07.003 [in press] • League of People Living with HIV of Moldova: Moldova: The People Living with HIV Stigma Index, 2012: Accessed online 9 October 2013 at: http://www.gnpplus.net/en/resources/human-rights-and-stigma/item/140-plhiv-stigma-index-moldova • Nep+., Unaids., Gnp+., Ippf., Unaids., Cordaid. & Ukaid., 2010. People living with HIV stigma index: Ethiopia stigma and discrimination report Addis Ababa, Ethiopia: Network of Networks of HIV Positives in Ethiopia (NEP+), United Nations Joint Programme on HIV and AIDS (UNAIDS), Global Network of People Living with HIV (GNP+), International Planned Parenthood Federation (IPPF), Cordaid, UK Aid Department for International Development. • Nephak., Gnp+. & Ukaid., 2011. The People Living with HIV Stigma Index: Kenya Nairobi, Kenya: National Network for Empowerment of People Living with HIV in Kenya (NEPHAK), Global Network of People Living with HIV (GNP+), UKAid Department of International Development. • Nepwhan., Gnp+. & Ukaid., 2011. The People Living with HIV Stigma Index: Nigeria Abuja, Nigeria: Network of People Living with HIV/AIDS in Nigeria (NEPWHAN), Global Network of People Living with HIV (GNP+), UKAid Department of International Development. • Nzp+., Gnp+. & Ukaid., 2012. The People Living with HIV Index: Zambia Lusaka, Zambia: Network of Zambian People Living with HIV/AIDS (NZP+), Global Network of People Living with HIV (GNP+), UKAid Department of International Development. • Lev-ari S, et al. A prospective pilot clinical trial of “The work” meditation technique for survivors of breast cancer. Eur J Integr Med (2013), http://dx.doi.org/10.1016/j.eujim.2013.07.003 [in press] • Simbayi, L., Kalichman S, Strebel A. Cloete, Nomvo H, & Mqeketo A., 2007. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Social Science & Medicine 64, 1823-1831.

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