Caring for those who care

We can learn how Home Based Care services work by visiting Chilanga – a small town not far from Lusaka, the capital of Zambia, where a Home Based Care project is coordinated by Sister Leonia Kornas, a nurse from the St. Borromeo Congregation. It seems that the structures for establishing this kind of service already exist and that the families do not need much help to take care of their ill relatives. But this is true only for short and not so serious diseases. In case of AIDS a lot of new activities are needed to make this care successful and efficient.

When there is no hospital, nor any other medical services available, family members take responsibility for their relatives. The problem begins when the patient starts to be a too great burden for them, requires too much time, or is potentially dangerous for others. The resources and knowledge of the family members may be insufficient to assure the required care, or they themselves could need psychological support in struggling with the tragedy that touches their close relatives. This was the reason why a Home Based Care project had to be introduced, and this is the reason why the project should be planned and structured in action.

Regular visits to the families with terminal or chronic patients (not only AIDS) are crucial for the project. In Chilanga such visits are organised practically every day. They are necessary to assess the needs of the families. According to them the plan of specific activities is developed. For example the volunteers have to show to the family members how to deal with terminally ill relatives. This includes not only theoretical information but practical skills as well: washing, feeding, changing of dressings, avoiding contacts with infected fluids etc... Often medical interventions are needed and the families have to be taught how to manage in the case of specific symptoms and when to refer to a nurse or doctor. If pharmacological treatment is required, the patients must be provided with medicines and dressings. In cases where the economic siutation of the families is very bad, and the nutritional status of the patients is poor, they are supported with protein-rich food.

These activities are not all the duties of the team responsible for Home Based Care in Chilanga. Next to the teaching and case management, like fighting pain, dealing with skin diseases, respiratory disorders or diarrhoea, the psychological support to the patients and their families plays a very important role, as well. To live with and observe the suffering of close persons is not an easy task. The disease does not touch only the patient but influences the whole family. Therefore every visit is used to give moral and psychological support. This includes counselling, education and raising awareness of AIDS and its prevention as well.

The personal engagement of the family helps much to reach this target. However, there is, as well, a group among the patients that must be hospitalised. This includes the people who have no relatives or those who are too heavy a burden for their families. So a hospice was built in Chilanga this year. It is run voluntarily by sisters from the St. Borromeo congregation and by local staff. As only a small percentage of the patients are hospitalised there, the hospice can be seen as an integral part of the Home Based Care project in Chilanga.

Bringing food or medicines to the families, transporting goods and people and running the hospice still need support from outside. But there is a hope that with greater engagement of the community even these activities can be run without any help from foreign donors in the future. The local volunteers working with Sr. Leonia Kornas have a strong impact on the rest of the community. They create a feeling of responsibility in members of the community and an awareness of the fact that they are able to influence the medical services. Thanks to such activities fewer and fewer people are left alone with their diseases, and the community starting to play an active part in implementing health programs.

The idea of Home Based Care is often debated and it is even accused of simply shifting the responsibility and costs of care for AIDS or other terminal patients from the governmental services to the families, the lowest level of the health-action pyramid. But in the case of insufficient services it seems to be the only reasonable and possible solution of the existing problem. Furthermore, in a time of rising costs of hospitalisation, and in view of the need for a holistic and personal approach, such an approach is needed in high industrialised countries as well...

* Norbert Rehlis is President of the Executive Board of the Humanitarian Aid Foundation Redemptoris Missio (Medicus Mundi Poland) in Poznan, Poland. The Home Based Care project in Chilanga has been supported by different donors including Medicus Mundi Switzerland and Redemptoris Missio.