Executive Summary
In Africa, there has been a gradual shift in the model of care of people living with HIV/AIDS from hospital care to home-based care. People living with HIV/AIDS often constitute a large, if not majority of people seeking medical treatment at hospitals. However, many hospitals do not have adequate staff and space to care for HIV patients. In response, hospitals, departments of health and even national governments, have implemented policies to promote home-based care of patients. However, particularly in South Africa, the effectiveness of home-based care programmes is questionable. Patients living with HIV/AIDS are often discharged from the hospitals after a short admission period or not admitted at all. Accordingly, this study was commissioned to understand the contexts in which home-based care and its variations is being provided in Uganda and South Africa, and to assess the gendered impacts that these programmes have on the members of the family and community as well as the organisations offering care for PLWHAs (‘people living with HIV/AIDS’). This is intended to assist in designing policies and in the planning of home-based care programmes.
The study set six objectives to achieve its purpose:
- To describe the characteristics of family and volunteer community caregivers and the nature of the work they carry out;
- To describe the burden of caring for PLWHAs and determine whether it impacts differently on the health and welfare of male and female caregivers and if so, how?
- To describe the factors affecting men’s involvement in the care of PLWHAs;
- To document the challenges and needs of family and volunteer community caregivers and care programmes;
- To describe the nature and magnitude of support available to volunteer and family caregivers from households members, community members, government and non-governmental agencies;
- To inform the design of policies and programmes that will mitigate the burden of care on families and communities.
This study made use of data from two main sources. The first was a rapid assessment of organisations offering home-based care as well as other forms of care to PLWHAs in South Africa and Uganda. To carry out the rapid assessment, various organisations offering home-based care in Uganda and South Africa were contacted. Interviews were conducted with programme staff, including heads of organisations, programme co-ordinators as well as doctors, nurses, volunteers and counsellors. These interviews were tape recorded and thereafter transcribed for analysis. Follow-up interviews were conducted with participants on the telephone. E-mails were also used to collect further information and to seek clarifications. The second main source of data was my recent ethnographic study (Akintola, 2004) among family and volunteer caregivers for PLWHAs in two semi-rural communities located 35 kms from Durban, South Africa. In addition, secondary data was also obtained from literature searches.
Models of care
The common thread in the development of home-based care models is the need to provide care for PLWHAs who otherwise would not be cared for adequately. Thus home-based care organisations are usually set up in response to the growing problem of care for PLWHAs. Care organisations are usually set up by hospitals, particularly Mission hospitals, to cope with the overstretching of health facilities; concerned individuals and groups of people some of whom may be infected with HIV or retired health professionals, and religious and international organisations.
Different care models have emerged that reflect the origin of the care organisations, their particular aims and objectives, and the actual needs of the PLWHAs:
- Community home-visiting care programmes which use volunteers (who are not paid) to recruit and provide patients with basic nursing care as well as spiritual and moral support.
- Home-based palliative care programmes that use hospitals and volunteers to recruit and refer patients to specialist nurses and doctors who visit homes regularly, using modern methods of pain control to relieve the pain of the patient.
- ‘Step down’ care with palliative care where patients are given care for severe opportunistic infections in stage 3 of illness and the dying are given palliative end-of life care.
- Tertiary out-patient care programmes which provide comprehensive rehabilitative and palliative outpatient care and receives referrals from hospitals, religious groups and local chiefs and other NGOs.
- Semi-comprehensive care programmes usually associated with home visiting by a team of medical personnel as well as counsellors and religious people.
- Comprehensive care programmes which provide services that include HIV/AIDS prevention, voluntary counselling and testing as well as treatment, care and support to PLWHAs.
The gendered burden of care
Caregiving is usually carried out by family members who serve as primary caregivers, and by community members who are recruited and trained to provide service as volunteer caregivers. Caregiving activities include provision of physical and emotional support to patients, and work such as carrying, lifting and bathing of patients, staying awake at night to attend to patients who are in the terminal stages of their illness, and cleaning those with frequent bouts of diarrhoea among other debilitations. Family members and volunteers often take on household chores and assist with the care of the children of the sick people. For volunteer caregivers, their work involves transferring knowledge by training family members on how to care for the sick, visiting several homes a day, working long hours and walking in heat of day to assist. Many volunteer caregivers become the primary caregivers of the sick person.
Caregiving is very demanding for the family and volunteer caregivers alike. The work leads to physical stress, emotional and psychological stress, social and economic stress. Caregivers experience physical stress related symptoms such as headaches, backaches, and general body weakness and fatigue. Some of the family members also face the risk of infection with TB because of frequent close contact with patients and also risk of HIV infection because they do not use protective devices when caring for the sick. Emotional and psychological stress manifests in tearfulness, sleeplessness, nightmares, feelings of guilt, helplessness and hopelessness about the imminent and frequent deaths of patients, and tearfulness. Caregivers experience social stress as a result of alienation from friends and other social activities and also strains in caregiver-care recipient relationship. The economic burden of caring for the sick sometimes fall on the caregivers who often have to grapple with increased cost of living, decreased income from loss of jobs/job opportunities, transport to health facilities and transport of dead/funeral costs.
The burden of caring for the sick weighs disproportionately on women not only because they are the main providers of care in homes, but also because many have lost their male partners or have never been married and, therefore, have to bear alone the financial costs of caring for self and sick family members. Furthermore, men rarely assist with caregiving because they are usually involved in formal or informal activities to earn an income for the family. Some however, deliberately shirk their responsibilities. When men do assist (e.g. bathing patients, cleaning and treating pressure sores), women caregivers often feel uncomfortable as opposed to when men assist with hospital visits and arranging transport for the sick.
Conclusions
This study shows that many families are not in a position to offer home-based care without undermining the wellbeing of family members. The needs of affected households are enormous, and increase and become more complex over time. This highlights the need for substantial investment in the care of people living with HIV/AIDS and their families. In addition, the study raises questions around the adequacy and sustainability of many of the care models that make use of volunteer caregivers. There is a need to recognise the effects that caregiving has on women and that home-based care is not a simple, easy answer to the demand for extensive care programmes for PLWHA. This study shows that it is necessary to rethink existing care models in order not to exacerbate poverty and existing gender inequalities among affected families and communities.
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