[A stress model for parents of children with duchenne muscular dystrophy].
This study explored the problems encountered by parents in caring for children with Duchenne muscular dystrophy (DMD). Open questionnaires (N=21) designed to identify and gauge stress factors were used to collect study data. Results showed that key elements of the care stress model in parents of DMD children prior to joining a support group included: (1) recognition of the factors underlying the changes in their child's health condition (incomprehension, inference, rationalization, and acceptance of mutation and sexual heredity); (2) special assistance needs such as barrier-free facilities, government/social assistance (role substitution, coordination, and long-term care) and medical information (on treating disease causes, psychological adjustment, rehabilitation, and the welfare system); and (3) strains (physical, psychological, sleep disturbances, and feelings of powerlessness). Once families of DMD children began participating in DMD support groups, it is important to note the information exchanged, particularly with regard to medical, rehabilitation, psychological adjustment, role substitution, and welfare benefit information.
Chen
Jih-Yuan
JY
School of Nursing, Department of Pediatrics, Kaohsiung Medical University, Chung-Ho Memorial Hospital, Kaohsiung, Taiwan, ROC. jiyuch@kmu.edu.tw
Jong
Yuh-Jyh
YJ
D000328:Adult; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D008960:Models, Psychological; D020388:Muscular Dystrophy, Duchenne / Q000235:genetics / Q000523:psychology*; D010290:Parents; D013315:Stress, Psychological / Q000209:etiology*