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 ritualized 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.
Subject(s)
Acquired Immunodeficiency Syndrome/psychology , Caregivers/psychology , Cost of Illness , Developing Countries , Eating , Feeding Behavior/psychology , HIV Infections/psychology , Adult , Aged , Aged, 80 and over , Attitude to Death , Ceremonial Behavior , Cultural Characteristics , Disease Progression , Female , Goals , Humans , Illness Behavior , Lesotho , Male , Middle Aged , Social Support , Stress, Psychological/complications , Stress, Psychological/psychology , Symbolism , Young AdultABSTRACT
This study provides an account of caregivers' experiences with the bodily care of AIDS patients before antiretroviral therapies were available in the public health sector in Lesotho. It describes the mechanisms through which the body may become a stressor in caregiving. The phenomenological method, guided by the notion of epoché, was used to understand caregiving experiences from the perspective of family caregivers. Data on caregivers' physical activities and what they saw and thought were collected through in-depth interviews with 21 caregivers (mostly females); the caregivers were identified with the help of HIV/AIDS counsellors at two hospitals where AIDS patients received medical treatment. The thematic analysis shows that a patient's body was central in caregiving experiences. Social interaction in caregiving was mediated through seeing and touching the bodies of the patients. The different aspects of caregiving and the close interaction with the body of an ill family member - especially seeing major changes in the patient's physical appearance, their declined capacity to perform the activities of daily living, and discovering the symptoms of their illness - contributed to the caregivers' experiences of sympathy and pain. The social meanings and boundaries that tended to persist regarding touching and accessing others' bodies and bodily matter also contributed to the caregivers' stress.
ABSTRACT
In the context of poor access to antiretroviral therapies in sub-Saharan Africa, the minimum treatment package intended to treat opportunistic infections common with HIV infection is inadequate but appealing, since it presumes universal coverage of medical care for patients living with HIV and AIDS. The overall objective of this study was to analyse the challenges which family caregivers encountered in home-based care when they tried to access medical treatment for home-based AIDS patients in the context of confidentiality and limited medical care. A qualitative study using in-depth interviews with a sample of 21 family caregivers -16 females and 5 males aged between 23 and 85 years was conducted with the assistance of health personnel in two hospitals in Lesotho. Using the concept of continuity of care, this article discusses the experiences of family caregivers about home care, including their experiences of adherence to confidentiality by health care professionals and non-disclosure of AIDS as the context of illness, the circumstances under which the caregivers initiated caregiving and sought medical care, and how these factors could be stressors in caregiving. There was continuity of care where the caregivers obtained hospital support. However, when confidentiality was adhered to the caregivers were frustrated by lack of information, disrupted treatment, exclusion of their perspectives in medical care, failure to secure hospitalisation, ambiguous goals and non-responsiveness, so that continuity of care was jeopardised. Thus it can be concluded that professional-assisted disclosure benefited the patients because it facilitated continuity of care through the caregivers.