Creating health through self-care: an explanatory study of teenagers with rheumatic fever and rheumatic heart disease in Northeast Thailand

Rheumatic fever and rheumatic heart disease are major causes of morbidity and mortality in young people in Northeast Thailand. Problems encountered with this disease come from the nature of the disease itself and the long term treatment needed. Living with such a chronic illness raises concerns for individual teenager, their families, and health care professionals. The aims of this study were to gain an understanding of: the nature of self-care for teenagers with rheumatic fever and rheumatic heart disease, the particular pattern of behaviours beneficial to health and illness control; the role and impact of the family on self-care; and finally to consider what constitutes appropriate health care services. The study was conducted in two distinct phases. In Phase 1, a number of issues related to teenager self-care, were investigated for 72 teenagers with rheumatic fever and rheumatic heart disease. Specific research tools were used which allowed health beliefs, health conceptions, health status, self-care behaviours, and illness control to be measured. The results yielded some relevant data which were then used for developing propositions to guide an holistic multiple case study in Phase 2. Ten teenagers who continued treatment at two tertiary care hospitals in Khon Kaen were selected. Data were collected from multiple sources of evidence: including hospital records, interviews and observations with individual teenagers, and his or her parents and grandparents. Data collection took place at the family home and at the hospital. The findings provided insight into typical patterns of teenager self-care and family care and how these influenced individual health, illness control, and quality of life. Teenager self-care was deliberate and designed by themselves based on their perceptual and cognitive abilities and family involvement. Family care and teenager self-care patterns were also influenced by the extent of social support and resources available for health care in their own living context. The self-care of teenagers was enhanced by family support and professional health care which was perceived as effective. Finally interpersonal relationships with health care professionals were shown to influence their patterns of long term follow up. Three frameworks for understanding teenagers self-care, family care, and health care intervention were developed. The conclusion reached indicate that health care professionals should be encouraged to work collaboratively with teenagers and their families to enhance self-care and illness control. Finally, recommendations for policy development, nursing education, health care management, and further research relevant to the care of young people with rheumatic fever and rheumatic heart disease in the Thai health care context were proposed.