Medium-Term Quality of Life Outcomes for Patients on HIV Treatment in Western Uganda

  • Author / Creator
    Paulsen, Catherine A
  • Background: A pilot community-based antiretroviral therapy (CBART) program in western Uganda was previously shown to significantly improve quality of life outcomes among HIV patients in their first year of treatment, though certain psychosocial challenges and issues remained. What is not known is whether these issues diminish and if new issues arise with more time. Objectives: This study builds on previous research evaluating health-related quality of life outcomes of patients in the CBART program. This study aimed to explore the physical and psychosocial challenges faced by patients five to six years after the initiation of antiretroviral treatment. Methods: In-depth semi-structured interviews were conducted in Uganda in 2012 with 25 purposefully selected CBART patients who had undetectable viral loads just prior to the interviews. Interviews explored the topics of death and dying, hope, physical functioning, financial well-being, stigma, social and family relations, sexual relations and childbearing in relation to HIV infection and HIV treatment. Data were analyzed using thematic analysis. Results: Income had improved for all participants, compared with pre-treatment levels. As participants’ health improved and their strength returned, they felt a pressing need to establish and secure their family’s future, while their health remained strong. However, given their baseline poverty and the sale of assets to fund medical care, improvements were slow. Additionally, reduced strength meant participants needed to look outside of subsistence farming alone to meet their financial needs. Social relationships have largely been re-established. A return to good health meant that participants were once again able to engage in social activities in meaningful ways. Most patients were able to forgive those who treated them poorly. Similarly, once the initial fear that the patient would die had passed, family and community members were once again welcoming. Occasionally, past disputes proved too great to overcome and participants elected to dissolve these relationships instead. The ability to engage with others about HIV in a positive manner was important to participants. This included both discussing life-challenges and support with their peers, as well as helping newly diagnosed patients adapt to life with HIV. These acts of engagement both helped patients to feel less alone, and allowed them to contribute positively to their community. Attitudes around child-bearing revealed many conflicting priorities for people living with HIV/AIDS (PLWHA). While children were highly valued, patients had many reservations regarding continued reproduction. Desire to provide well financially for all children, HIV-related risks to the health of the mother and child, and social pressure that PLWHA should limit family size discouraged reproduction. Those who did choose to reproduce were at times reluctant to seek advice from health care staff. Conclusions: Physical and psychosocial issues have reduced over time, which suggests treatment continues to improve quality of life; however, many challenges remain. As antiretroviral therapy (ART) improved patients’ physical functioning, and with it their physical capacity and self-confidence, they were able to resume normal activities. However, patients could not simply return to their old lives. Adjustments had to be made, and a ‘new normal’ established. PLWHA require more than the provision of ART alone to rebuild their lives. Patients need financial and social support to help adjust into this new sense of ‘normal’. The most pressing issue for this population is their reduced physical work capacity, and the resulting loss of income earning ability. Skills training and assistance accessing local development programs could help alleviate this burden. Peer counselling and support should be facilitated for PLWHA, in order to help patients to adapt and live in a new normal with HIV. Increased inclusion of patients in community support and outreach programs could benefit all parties involved. There is a desire to have smaller families because of the challenges inherent to living with HIV/AIDS. However, for those without children, the desire to reproduce remains. More support is needed to counsel patients and help them find safer methods of conception.

  • Subjects / Keywords
  • Graduation date
  • Type of Item
  • Degree
    Master of Science
  • DOI
  • License
    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.
  • Language
  • Institution
    University of Alberta
  • Degree level
  • Department
    • School of Public Health
  • Specialization
    • Global Health
  • Supervisor / co-supervisor and their department(s)
    • Arif Alibhai, School of Public Health
    • Duncan Saunders, School of Public Health
  • Examining committee members and their departments
    • Gian Jhangri, School of Public Health
    • Vera Caine, Faculty of Nursing
    • Amy Kaler, Sociology