Life stories of families with a terminally ill child.

Abstract

Family units with a terminally ill child have a tendency to withdraw and this isolation may lead to problems in their mental health. A tendency with psychologists, clergy and helpers from other professions is to act as ideal experts on the lives of saddened people. From painful personal experience, this does not seem to enable acquiescence. Therefore, the aim of research on families with terminally ill children, was to explore and describe their lives and to develop an approach to facilitate their families to obtain acquiescence. In this article however, attention will be given to the life-world of families with terminally ill children. The research consists of two phases. In phase one the experiences of four families with terminally ill children are explored and described by means of phenomenological, unstructured, in-depth interviews. In phase two an acquiescence approach, which was designed for educational psychologists to facilitate families with terminally ill children to achieve acquiscence, is described. This approach is based on results from phase one. This article focuses on phase one. In this phase four families were interviewed individually, in the privacy of their homes. The interviews were audiotaped, and were transcribed for the purpose of data gathering. The data was analysed according to Tesch's method and a literature control was performed to verify the results. Guba's model for the validity of qualitative research was used. Five recurrent themes were identified: 1. Families are able to choose their reactions to the crises of having a terminally ill child. 2. When there is a terminally ill child in the family, the family's values change. 3. Acceptance of the circumstances with a terminally ill child, makes life easier. 4. As families with a terminally ill child learn to live every moment to the full, their quality of life improves. 5. As people learn to accept support, their quality of life with a terminally ill child improves. The research indicated that families with terminally ill children move through a lonely and painful process, which is characterised by growth at the end. This growth implies that the life skills mentioned above, were obtained after years of unimaginable suffering. In order to reduce this period of suffering, an acquiescence approach was designed for educational psychologists to facilitate discovery and acceptance regarding the above life skills with family units and thus allow them to achieve acquiescence.