On the stress of caregivers for children with developmental delay and their needs for procuration of genetic counseling resources

• Main Authors: Kai-Chi Fang, 方凱企
• Other Authors: John J. Tai
• Format: Others
• Language: zh-TW
• Published: 2006
• Online Access: http://ndltd.ncl.edu.tw/handle/04802781013769412673

碩士 === 國立臺灣大學 === 分子醫學研究所 === 94 === This study aims to investigate the emotional and familial stresses of caregivers for children with developmental delay, the relationships between social adaptation and stresses, and the need for procuration of genetic counseling resources. A sample of 63 caregivers for children with developmental delay is collected from the early intervention clinic at a hospital located in northern Taiwan. A structural questionnaire including four parts is used: (1) children''s and caregivers’ basic data; (2) caregivers’ emotional and familial stresses related to caring for the developmentally delayed; (3) the perception and need for genetic counseling resources; (4) their concerns about relevant medical information and the courses to collect information. The results of this study are: (1) 87.3% of the caregivers are females with the average age of 34.7 years old, and 12.7% are males with the average age of 43.4 years old. The majority of the caregivers act as the mothers (77.8%). (2) The main social adaptation stressors include the loss of quality of family life due to the caring and the disapproval by the society in future. (3) The major emotional stresses include fear/ worries/ disbelief, depressed mood, and doubt/ numbness/ complicated emotion. The major familial stresses include couple discord, discrepancy in opinions about raising children with developmental delay, frustration from raising them, and the stress resulting from raising other children. (4) There are significant associations between caregiver-child relationship and the degree of familial stresses, and between caregivers’ educational level and the degree of emotional stresses, knowledge of genetic counseling and procuration of medical information. Besides, younger age group is associated with higher degree of familial stresses, compared to older age group. (5) Caregivers with higher emotional or familial stresses do not have significantly higher intention to participate in genetic counseling than those with less stresses; however, those with better knowledge of genetic counseling or positive attitude in procuration of information have higher intention to do so. Based on the studied results, following suggestions are proposed: (1) To improve the limited understanding and utilization of genetic counseling, health education should be reinforced and relevant policies should also be made. (2) Improvement of caregivers’ physical and mental health and social adaptation in the course of caring can lower the societal cost caused by their emotional stresses and care burdens. (3) Providing easier-understanding health education information and creating a multiple-channel system for procuring these information can promote the accessibility and availability of genetic counseling resources, especially for caregivers with lower educational level or lower motivation for procuration of medical information. (4) Training and educating genetic counselors in a cross-disciplinary health care system would help the genetic counselors to define their roles in a professional teamwork and to exert their professions. (5) Genetic counselors should participate in the whole service process for families caring children with developmental delay, in order to achieve a comprehensive care.