Integrated community-based home care: Striving towards balancing quality with coverage in South Africa
Keywords: Community-based, continuum of care, coverage, palliative care, networking, HIV AIDS
This collaborative, community-based model was developed and piloted by South Coast Hospice in rural KwaZulu-Natal in 1996. The Integrated Community-based Home Care (ICHC) model was introduced in response to the increasing need for palliative care brought about by the HIV/AIDS epidemic. It was based on a successful Rural Outreach Programme, in which South Coast Hospice had been liasing closely with government Primary Health Care clinics in order to extend hospice care to the under-served, outlying areas since 1986. Highly trained and professionally supervised community caregivers and community volunteers provide a home-based palliative care service. By networking with a host of community organizations they empower impoverished families and neighbours to cope and enable them to keep critically ill patients at home. ICHC is diagrammatically represented in [Figure - 1].
The replicability of this model in urban, rural, peri-urban and metropolitan settings has been documented. It was successfully piloted by the Hospice Palliative Care Association of South Africa (HPCA), in conjunction with the University of KwaZulu-Natal in 1999/2000. The HPCA actively promotes Integrated Community Home Care (ICHC) via a Mentorship Programme that uses hospices with an established programme to provide guidance and support to HPCA member hospices that are still developing their own community home care programmes.
The actual process of care varies according to site-specific needs and resources. The way care is usually initiated in the UGU Health District of KwaZulu-Natal is described here.
Following diagnosis, the home-based care co-ordinator in participating government hospitals and clinics suggests referral to the ICHC programme. The client either gives consent to be visited at home or is given a brochure with contact details and a brief description of the programme and the option to self refer later. The HBC co-ordinator contacts the ICHC team serving the client's geographic area.
Hospice teams often transport the patient home from hospital, to meet the family and to see where the patient lives (there are no street names or numbers in the rural areas).
At first visit, a nursing care plan is drawn up based on a holistic assessment and incorporating all available community support. Hospice staff then notify the nearest clinic and volunteers who live within walking distance of the patient's home.
In addition to providing care and support themselves, community caregivers teach basic nursing care to the family and neighbours. Typically, this includes universal precautions, pressure and mouth care and lifting of bedridden patients. The caregivers also check that there is enough prescribed medication to last until the next visit and make sure that it is being given correctly and that there is no evidence of side effects. They also give the family gloves and loan them basic equipment such as bedpans and foam mattresses. Another important aspect of their work is facilitating additional community support from church members and any other relevant community-based groups or organizations.
A community social worker is shared between five ICHC teams. Community caregivers refer to the social worker when they come across situations and family dynamics that they do not feel equipped to handle. Extreme poverty, substance abuse and domestic violence are commonly encountered. The social worker often arranges family consultations to try and find a solution to these difficult problems and is instrumental in facilitating welfare grants and the optimal placement of orphans. The social worker also provides emotional support to the community caregivers and encourages them to voice their personal work-related problems.
Each team of two community caregivers is also supported by a professional nurse supervisor who accompanies them on home visits once or twice a week, volunteers who live within walking distance of the patient's home, primary health care clinic staff who have received training in palliative care and community-based religious counsellors. They also have an allocated vehicle.
A team that includes community representatives and professionals from the partner organizations (Hospital - Hospice - Clinic) and a person representing people living with HIV/AIDS (PLHA), select, train and supervise employed community caregivers and volunteers. They collectively provide care, support and education for patients and their families as well as their specific micro-community.
Hospitals commit to providing back-up beds and medication, they teach hospice staff about managing HIV and opportunistic infections. The HBC co-ordinator, together with the recently introduced multi-disciplinary, hospital-based palliative care teams, provides support to caregivers and holistic care to hospitalized clients.
The clinics provide interim and emergency care to patients and families. Due to the volume of patients, hospice teams visit each area on average once a week. Professional nurses from both hospice and the clinics are authorized to arrange an admission to hospital.
South Coast Hospice provides ongoing supervision of employed community caregivers and volunteers and shares palliative care expertize with role players in the formal health care sector. The hospice is also responsible for data collection, for ensuring that all networking partners refer appropriately and for the overall management of the programme.
A community network action group with the appropriate acronym of NAG, includes traditional healers, church groups, youth organizations and the business sector.
PLHA selected by the community participate in training and the facilitation of support groups.
This collaboration and networking results in PLHAs and their families having access to a continuum of care that extends from the time of diagnosis onwards.
Planning for the optimal placement of orphans and vulnerable children occurs during the process of home-based care. A special Children's team has been established to focus on specific children's needs. This team also provides bereavement support and counselling to children and their families via a Memory Box Project. Liaison with the Department of Home Affairs has resulted in specially trained caregivers being allowed to complete official application forms for birth certificates, without which there is no hope of obtaining a foster care or child-care grant.
On average, one ICHC team provides care for 145 patients with a diagnosis of HIV/AIDS and/or advanced cancer. ICHC is currently implemented by over 40 South African hospices. A total of 4500 HIV+ patients were receiving ICHC via the South Coast Hospice component of the KwaZulu-Natal Global Fund project at the end of May, 2005. South Coast Hospice is currently co-ordinating ICHC at twelve sites spread throughout the province.
Six monthly audits indicate that patients including children and their families, are satisfied with the quality of care. There are fewer admissions to hospital and a shorter length of stay. There is better pain and symptom control in government hospitals and clinics, and improved management of opportunistic infections by the hospice team at home.
Palliative Care forms an integral component of the continuum of care. Home-based care is effectively linked to HIV/AIDS prevention and ARV therapy. A module on teaching is included in caregiver training. Caregivers provide up to date factual information on HIV/AIDS in terms of mode of spread, infection control and divulgence of status as well as treatment and care options. As a result there is increased divulgence of HIV status and a significant reduction in stigma associated with HIV/AIDS. There is increased community involvement in the provision of care and improved health care worker morale across the spectrum of networking partners.
The South Coast Hospice response to HIV/AIDS has been acknowledged as a best practice by the South African National Department of Health.
This model that balances quality and coverage and that has already been successfully scaled up nationally has potential value for resource poor settings globally.
[Figure - 1]