Lifestyle, attitudes and needs of uncured XDR-TB patients living in the communities of South Africa: a qualitative study.
Senthilingam, Meera;
Pietersen, Elize;
McNerney, Ruth;
Te Riele, Julian;
Sedres, Pat;
Wilson, Ruth;
Dheda, Keertan;
(2015)
Lifestyle, attitudes and needs of uncured XDR-TB patients living in the communities of South Africa: a qualitative study.
Tropical medicine & international health, 20 (9).
pp. 1155-1161.
ISSN 1360-2276
DOI: https://doi.org/10.1111/tmi.12532
Permanent Identifier
Use this Digital Object Identifier when citing or linking to this resource.
OBJECTIVE: Patient-level data are required to inform strategies interrupting transmission and default in patients with extensively drug-resistant TB (XDR-TB) to improve models of care and identify potential routes of transmission. We therefore explored the experiences, lifestyle, attitudes and needs of patients with uncured XDR-TB, who failed or interrupted therapy, living without treatment in the community. METHODS: We conducted in-depth interviews with 12 community-based patients from South Africa. Family members were interviewed when patients were unavailable. Interviews were analysed using inductive thematic analysis. RESULTS: The thematic experiences identified from the interviews were as follows: (i) living with but not being cured of XDR-TB, (ii) altered lifestyle in the community, (iii) experiences with community health care, (iv) local community members, and (v) wants and needs. Patients identified mistrust in health care, futility of treatment regimens, a need for a purpose in life and subsistence as major concerns. Restriction of living in the community for patients whose treatment had failed resulted in self-imposed isolation. Defaulters focused more on the never-ending drug regimen and bad experiences with health care contributing to non-adherence. Family members emphasised an under-recognised experience of unforeseen burden, obligation, worry and discomfort. Lack of knowledge and lack of concern about transmission was evident. CONCLUSION: Current models of care are not adequately meeting the needs of patients with uncured XDR-TB and relatives. These data inform the need for community-based palliative care, vocational facilities to improve economic opportunities, home-based infection control and improved psychosocial support to increase patient adherence, reduce transmission, provide income and relieve the burden on family members.