PURPOSE: This study investigated parents’ perception of Familial Adenomatous Polyposis (FAP), which may beuseful in formulating support to be given to FAP-affected families with young children. METHODS: A semistructuredinterview concerning FAP and questionnaire were conducted among parents, and content analysis wasused to elucidate the parents’ perception of FAP. RESULTS: Data from 19 families (25 subjects) were analyzed,which included 12 fathers and 13 mothers. The mean age of the children was 10.4 ± 5.3 years. The contents ofinterview data were divided into 4 areas: the disease itself, medical treatment, family interactons, and dealing withthe disease. Parents accept the disease as a condition that can be managed despite its impact and the bitterexperiences that they have gone through (postoperative difficulties, psychological burdens, financial burdens, guiltor burden in giving birth, discrimination about marriage or employment, and other experiences); and they set goodexamples for their children by maintaining good health and coping with the disease within the family as a singleunit. CONCLUSIONS: Based on the parents’ perception of FAP, it was concluded that it is necessary to providethe following types of support for families with FAP who have children; (1) Provide emotional support for theparents who are trying to cope with the disease together within the family; (2) Provide active support to ease theburden of medical care imposed on parents who are currently demonstrating the disease; (3) Establish a systemthat can offer information and support to patients and their spouses, with special reference to life-changing events;and (4) Institute legislative measures such as government subsidies to offset medical expenses.
抄録全体を表示
