Family and community involvement

The magnitude of the HIV/Aids crisis in Africa necessitates the involvement of the family and the community in care programmes. We will only be able to cope with the demands of HIV/Aids if we establish well functioning community home-based care organisations.

1. A definition of community home-based care:
Community home-based care (CHBC) is the care given to individuals in their own homes where they are supported by their families, extended families or those of their choice and when these home-based caregivers are supported by a multi-disciplinary team and complementary caregivers who are able to meet the specific needs of the individual and family. (Based on work done by Fröhlich)

2. Advantages of home-based care
Home-based care is often the best way to look after someone with Aids, and it is often preferable to hospital care:

• Good basic care can be successfully provided in the home.
• People who are very sick or dying would very often rather stay at home so that they can spend their last days in familiar surroundings - especially when they know they cannot be cured in a hospital.
• Sick people are comforted by being in their own homes and communities with family and friends all around them. The ambience of home prevents the patient from feeling isolated and rejected.
• Home-based care promotes a holistic approach to care. This means that the physical, social, cultural, psychological, emotional, religious and spiritual needs of a patient can all be fulfilled by the family and the health team.
• It is usually less expensive for families to care for someone at home. The cost of hospitalisation and transportation to and from a hospital can be financially crippling.
• If the sick person is at home, family members can attend to their other responsibilities more easily. It can become very difficult to cope with one’s own life if a loved one is in hospital and if the caregiver has to make frequent trips to a hospital to take food to the sick person and to assist in the tasks of physically caring for the sick person.
• Because home care reduces the pressure on hospital beds, and doctors, nurses and other health care professionals, these people can use their time more effectively to care for other critically ill patients in hospitals.
• The network of health services available in the CHBC programme enables family members to gain access to counselling support for themselves.
• Families and community involvement in the care of their own patients creates general Aids awareness in the community and this helps to break down fear, ignorance, prejudice and negative attitudes towards people with Aids.
• Community home-based care is sensitive to the culture and value systems of the local community - a sensitivity that is often missing in cold, neutral hospital settings.
• Community home-based care puts Aids care providers in touch with potential orphans and people who really need help desperately.
• Community home-based care is empowering. This means that people take responsibility for and control of their own lives and communities.

3. Development of a home-based care programme: Where to start

• Compile a community profile in order to establish the extent of the need, resources and networks in a specific community.
• Talk to, listen to and collaborate with community leaders (because they are the key role players in any community), as well as with the HIV-positive people and their families (because they are the people directly affected by the programme).
• A programme that is developed by outsiders without close consultation with the people in the community will most certainly fail.
• Establish programme objectives that meet the needs of the community and appoint a programme coordinator.
• Recruit staff and volunteers for the CHBC programme and train them thoroughly.
• Offer a HIV/Aids awareness programme that runs concurrently with the CHBC programme in the community so that you can obtain the understanding, appreciation and support of the community for the CHBC programme.
• Collaborate closely with health care professionals, and community and religious leaders as you put together the multi-disciplinary team that will offer comprehensive care to patients with Aids.
• Establish a care network and referral system - and make sure that all health-providing services in the community know about the CHBC programme.
• Fundamental CHBC practices involve raising funds, instituting a reliable accounting system and monitoring how well the CHBC programme operates by keeping record of all its activities.

4. Implementation of the CHBC programme: What the client needs
Before a comprehensive service that meets the physical, psycho-social, emotional, spiritual and cultural needs of those living with HIV/Aids can be offered, it is obviously necessary to find out exactly what these needs are:

• Medical or nursing needs: Does the client have any medical or nursing problems that need to be attended to by a nurse or does he or she need to be referred to a clinic or hospital?
• Basic needs: Does the client have food, shelter, clothes and blankets, electricity, water and sanitation? If the client lacks these basic requirements, ask the social worker to visit the client.
• Activities of daily living: Is the client mobile, or is he or she confined to bed or house-bound? Can the client eat normally or must somebody assist him or her to eat? Is the client incontinent or is he or she able to use the toilet? Is there a toilet in the home, and if not, can a bedpan or commode be arranged for the client? Who does the following tasks for the client: collecting water, cooking, bathing, washing the clothes, the shopping, collecting children from school, caring for pets, maintaining the house and garden? Volunteers can make an invaluable contribution by helping with all these chores.
• Social needs: Who is the primary caregiver? How many people live in the house with the client? Do friends, neighbours and family members offer their support?
• Financial needs: Does the household have any income? Does the client receive a disability grant or pension? Possible sources of income (e.g. welfare departments, NGOs, help from the church, mosque, temple or other religious organisations) should be investigated and a list compiled.
• Spiritual needs: To what religious group does the client belong to? Does the client have any spiritual needs that are not being attended to?
• Hospital, hospice and palliative care: A time may come when the family is no longer able to cope with a critically ill patient. At this time it is important to refer the patient to a hospital or to ask for help from a hospice. If a patient prefers to die at home, counselling, palliative care and practical support should be available to the patient and the caregivers.
• Needs of the primary caregiver: The primary caregiver (who is most often the mother or grandmother of the family) has to carry a huge load. Not only does she often have to look after a sick and dying person, but she also often has to ensure that life goes on for the young ones living in her home. Because this load can sometimes become overwhelming, it is vital for the primary caregiver to get time off from her duties. Volunteers can provide invaluable support by taking over the care of the patient for a few hours while the primary caregiver catches up on lost sleep, goes shopping, visits her friends, or even just goes to see a film.