Guidelines for the development of a psycho-educational program to assist family members of a cancer patient.

Cancer is often considered more frightening than other equally lethal diseases. There is a mythology surrounding cancer, with many superstitious beliefs. Cancer is associated with prolonged suffering, with wasting away, and with a slow lingering death. Cancer includes multiple physical needs, intense psychological distress manifested by pain, anxiety and depression and restrictions in social and sexual functioning for both the cancer patient and the relative. Cancer can increasingly be characterised as a chronic disease with considerable, continuing and fluctuating specific needs and problems for patients as well as their families. There is an obvious need for research on the family’s experience, essential to gain a better understanding of their emotions and needs. Most research has been performed among family members of the frail elderly or cognitively impaired patients. Research focusing exclusively on the caregiving process involving cancer patients and their families is scarce. The purpose of this study was to explore and describe family members’ experiences, and their specific needs in relation to the relative with cancer. The research design was based on qualitative research because of its exploratory, descriptive and contextual nature. The collection of the data was done by means of individual interviews and field notes reflecting the observation done during the interviews. The analysis of the data was done according to Tesch’s approach of data reduction. Literature was used to compare and complement the results. Applying Guba’s model on trustworthiness ensured the trustworthiness of the research. The results of the fieldwork indicated the following themes and categories: • Emotional experiences of the family members of a cancer patient • Uncertainty about how to relate to and care for the cancer patient. • Variety of emotions stemming from their experience with a cancer patient. • Family members express their specific needs. • Need to understand the nature and implications of the patient’s cancer. • Need to understand the impact on the family dynamics. • Need to gain insight into their personal relationships with the cancer patient. Based on these findings, guidelines were presented for the development of a psycho-educational programme to assist family members of cancer patients.Prof. C.P.H. Myburg