英文摘要 |
This study, based on qualitative data from in-depth focus group interviews, tried to analyze the sources of stress for families with children suffering from rare diseases from two perspectives; that of family systems theory and that of Double ABC-X model. The study found that the main sources of stress for families with rare diseases include: (1) stress in this complicated period during and immediately following the doctor's diagnosis; (2) stress from difficulties in taking care of the patient; (3) worries about the patient's future development; (4) stress from the family's financial difficulties; (5) stress due to being excluded from the society; (6) new stress coming from changes in the family system. Furthermore, this research also finds that the source of stress for “rare disease families” cannot easily explained by a single theory—it may develop in complex and unpredictable ways. Different rare diseases create different sources of stress, and normally the mother is more stressed than other members of the family during the period of caring for children with rare diseases. By contrast, the father’s stress mostly comes from financial pressures and the responsibilities of his job. |