Sepo II Study

2015 Press Release

Quote from man, age 50, on ART 1 year: “I am not thinking about HIV. No, I’m thinking about how I am living. Since I have life, I think about how I will live in the future.” Background 

Improved access to antiretroviral therapy (ART) in Sub-Saharan Africa has had a profound impact on the experiences of people living with HIV. For many, ART has transformed HIV into a chronic illness with ups and downs.

As such, people are likely to have new needs related to living with HIV. But what are these needs and what are the implications for HIV policy, programs and service delivery?

Purpose

The Sepo II Study explored the experiences of women and men living with HIV and on ART in Lusaka, Zambia to better understand their hopes and challenges over time.

The goal of the Sepo II Study is to inform the evolution of policy and care to better address the long-term management of HIV as a chronic condition. 

How was this rehabilitation research?

This study used two rehabilitation frameworks (the ICF and the Episodic Disability Framework) to focus on not only medical issues related to HIV, but also life-related challenges.

By rehabilitation, we mean activities that address or prevent impairments, activity limitations or social participation restrictions. Rehabilitation is concerned with physical wellbeing as well as mental and spiritual dimensions of health. This approach also focused on changes that occur over time to better understand the ups and downs of living with HIV. 

The Sepo II Study is part of a broader program of research and advocacy to advance the field of rehabilitation in the context of HIV in sub-Saharan Africa.

Methods 

This was a qualitative longitudinal study.

35 adults living with HIV and on ART for at least 6 months participated in this study from December/2012 to April/2015.

Participants were recruited from 2 sites in Lusaka, Zambia:

  • a public clinic called Chawama Level I Hospital
  • a private clinic called the Lusaka Trust Hospital

One-on-one in-depth interviews were conducted with each participant on 3 occasions about 6 months apart. In the interviews, participants were asked to share their experiences of living with HIV and ART related to their body’s functioning, day-to-day activities, and their relationships at home, at work and in their communities.

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

Participatory collaborative analysis was conducted after each interview and longitudinally (over time).

Participants and health staff provided input on the findings prior to dissemination.

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

Results

Our 8-page Sepo II Study Brief is now available.

Top priority findings

Sepo II findings point to shortcomings in the current model of HIV care in Zambia that focuses primarily on initiating and adhering to ART. These health services are necessary but not sufficient for meeting the new needs of people living longer as a result of ART.

HIV policy and programs also need to address the health- and life-related impacts of living longer with HIV such as counseling for issues beyond VCT and adherence, and rehabilitation to promote function and quality of life.

Overall, findings from the Sepo II Study promote an evolution of the HIV care continuum to embrace a long-term approach to living well with chronic HIV. 

Result diagram

Research team

  • Stephanie Nixon, University of Toronto and International Centre for Disability and Rehabilitation
  • Virginia Bond, Zambart, Zambia
  • Patty Solomon, McMaster University, Canada
  • Jill Hanass-Hancock, Health Economics and HIV and AIDS Research Division (HEARD), South Africa
  • Francisco Ibanez-Carrasco, Universities Without Walls, Canada
  • Margaret Maimbolwa, University of Zambia, Zambia
  • Anitha Menon, University of Zambia, Zambia
  • Cathy Cameron, International Centre for Disability and Rehabilitation
  • Chanda Mwamba, Zambart, Zambia
  • Margaret Siwale, Lusaka Trust Hospital, Zambia
  • Phillimon Simwaba and Robert Sinyinza, Disability, HIV and AIDS Trust (DHAT), Zambia
  • Elisse Zack, Stephen Tattle and Tammy Yates, Canadian Working Group on HIV and Rehabilitation (CWGHR), Canada

Quote from woman, age 40, on ART 2 years: “Living with HIV has made me stronger and it has helped me to stand on my own. I see life in a different way, in a different picture, you know? It’s bright, the future is bright!”Acknowledgements

We thank the women and men who courageously shared their personal stories with us so that we can better understand the experiences of living with HIV on ART in Lusaka, Zambia.

We also acknowledge our generous collaborators at the Lusaka Trust Hospital and the Chawama Level I Hospital. 

Funders

Canadian Institutes of Health Research