Food meanings in HIV and AIDS caregiving trajectories: Ritual, optimism and anguish among caregivers in Lesotho

Abstract

The article describes the caregiving responsibility to provide food for chronically ill family members and the meanings attached to food and eating when ill created stress for family caregivers. The results come from a qualitative phenomenological study using in-depth interviews with 21 family caregivers of chronically ill HIV and AIDS patients in one district in Lesotho. Analysis of the interview data showed that the caregivers attached profound meanings to food and feeding care recipients. Their perceptions about food as part of family life and caring, the role of food and eating in curbing disease progression, the link between food and medical efficacy and the link between food and life led to ritualised behaviour around food, and moments of optimism and anguish in caregiving. Patients' behaviour in relation to food was in most instances inconsistent with the caregivers' goals, thus leading this aspect of caregiving to induce stress. Services intended to support home-based caregivers and patients could contribute to the reduction of stress associated with food through suitably tailored food assistance and professional support to caregivers to enhance their competences and understanding of the dynamics of food intake as AIDS progressed.

Keywords:

• AIDS caregiving
• food meanings
• eating-related stress
• stress proliferation

Acknowledgements

I thank the caregivers and their relatives, the healthcare workers who assisted with access to the caregivers and the WFK Kellogg Foundation (USA) and the Academy for Educational Development for funding the study. My gratitude goes to Professor Ken Jubber, University of Cape Town, for his comments on the earlier versions of the manuscript.