Sepo I Study

BackgroundSix individuals standing at front of room

People with disabilities have historically been excluded from HIV care and research based on faulty assumptions that they are not at risk. This pattern shifted in the last decade with new attention to the HIV prevention needs of people with disabilities; however, there has been little attention to the needs of people with disabilities who are living with HIV.

Purpose

The Sepo I Study explored the experiences and perceptions of people with disabilities who are HIV-positive and key informants regarding health equity issues related to HIV care for people with disabilities who are HIV-positive.

What does “Sepo” mean?

“Sepo” is a Lozi word that means hope.

Lozi is one of Zambia’s official languages.  After research training, we invited the Zambian fieldwork team to name the study based on their impressions of the study’s overall aims.

The team selected hope as the focus of the study, and the Lozi translation, Sepo, as the official study name.

Methods

This qualitative study was implemented in two phases:

  • Phase 1: Interviews with 21 people with disabilities in Zambia (mainly Lusaka) who are HIV-positive.
  • Phase 2: Interviews with 11 people with disabilities who are HIV-positive and also with key informants from among HIV Service Organizations, Disabled People’s Organizations (DPOs), health care providers and health policy makers.

The Zambia-based fieldwork team included a project coordinator, 7 fieldworkers (4 men, 3 women including individuals with disabilities, sign language interpreters and trained HIV counselors) and 2 transcriptionists/translators.

The study was conducted in three local languages – Nyanja, Bemba and English.

Participatory collaborative analysis included researchers, people with disabilities and community advocates to identify study themes and recommendations for action.

Ethics approval was received from the University of Zambia, University of Toronto in Canada and University of KwaZulu-Natal in South Africa.

Results and Outputs 

The Sepo I Study Report (2011)

The Sepo I Study Report (2011) is a plain language study overview addressing the following study themes:

  • Stigma, discrimination and rights
  • HIV testing, care and support
  • Sexuality and intimacy
  • Living with HIV and disability
  • Unique challenges facing women with disabilities who are HIV+

Understanding and Addressing HIV and Disability-Related Stigma (2012)

Understanding and Addressing HIV and Disability-Related Stigma (2012) is a report on the community-based workshop and the policy meeting, convened 19-22 March 2012 in Lusaka, Zambia to build on results of the Sepo I Study.

Peer-reviewed publications presenting Sepo I Study results

Parsons J, Nixon SA, Bond VA. “Are we not human?” Stories of stigma, disability and HIV from Lusaka, Zambia and their implications for access to health services. 2015. PLoS One, DOI: 10.1371/journalpone.0127392.

Njelesani J, Nixon SA, Cameron D, Parsons J, Menon JA. Experiences of work among people with disabilities who are HIV-positive in Lusaka, Zambia. African Journal of AIDS Research. 2015;14(1):51-56.

Yoshida K, Hanass-Hancock J, Nixon SA, Bond V. Using intersectionality to explore experiences of disability and HIV among women and men in Zambia. Disability and Rehabilitation. 2014;36(25):2161-2168.

Nixon SA, Cameron C, Hanass-Hancock J, Simwaba P, Solomon P, Bond V, et al., Perceptions of HIV-related health services in Zambia for people with disabilities who are HIV-positive. Journal of the International AIDS Society. 2014;17:18806.

Wickenden A, Nixon SA, Yoshida K. Disabling sexualities: Exploring the impact of the intersection of HIV, disability and gender on the sexualities of women in Zambia. African Journal of Disability. 2013;2(1),Art.#50, 8 pages. doi: 10.4102/ajod.v2i1.50.

A person standing beside a poster that reads "Wha Kind of stigma have we experienced in relation to disability, or disability and HIV?"Top priority recommendations for action

  1. Anti-stigma interventions are urgently needed to address disability-related stigma and discrimination. These interventions should target certain audiences, including:
  • Health care workers providing HIV prevention, care, treatment and support services (e.g., a disability-related anti-stigma toolkit)
  • HIV policy-making or direction-setting organizations (e.g., awareness-raising activities regarding inclusion of PWDs in leadership on HIV)
  1. Policies and programs to address the basic food, shelter, education and income-generation needs of people with disabilities who are HIV+, with attention to the unique needs of women and men.
  2. The many people with disabilities in the Sepo I Study sample who are on ART (i.e. HIV drugs) need support for nutrition, and care to address the side effects of ART.

Research team

Group shot of approximately 30 individuals from HIV & Disability Anti-Stigma Meeting

Fieldwork team in Zambia

  • Agness Banda
  • Wendy Kateka
  • Joan Luyanga
  • Christine Mainza
  • Kebby Mundia
  • Francisca Muyenga
  • Samson Mwale
  • Fortress Mweemba
  • Psalms Ndewe
  • Dixson Phiri

HIV and Disability-Related Anti-Stigma Team

  • Virginia Bond, ZAMBART, Zambia
  • Chipo Chiiya, Mutale Chonta and Sue Clay, 3C Regional Consultants, Zambia
  • Jill Hanass-Hancock, Health Economics and HIV/AIDS Research Division (HEARD), South Africa
  • Stephanie Nixon, International Centre for Disability and Rehabilitation, University of Toronto, Canada
  • Phillimon Simwaba, Disability HIV and AIDS Trust (DHAT), Zimbabwe
  • Patty Solomon, McMaster University, Canada 

Funders

  • Canadian Institutes of Health Research (CIHR)
  • Centre for Urban Health Initiatives (CUHI)
  • University of Toronto Dean’s Fund