發展遲緩兒童照護者壓力與其對遺傳諮詢資源獲取的需求研究

Abstract

研究目的:藉由探討發展遲緩兒童的照護者所承受的情緒與家庭壓力，瞭解這些壓力與照護發展遲緩兒童相關的社會適應因子之關係，並瞭解照護者對遺傳諮詢資源獲取的需求程度。本研究以立意取樣方式，選取北部某區域教學醫院，早期療育聯合門診就診兒童之照護者為研究對象，有效問卷共計63份。研究工具為自擬結構式問卷，內容包括兒童及其照護者的基本資料，與照護發展遲緩兒童相關的情緒及家庭壓力，關於遺傳諮詢資源的認知程度與對遺傳諮詢資源的需求程度，對醫療資訊的關注程度及使用之資訊蒐集管道。 研究發現：一、照護者中女性佔87.3%、其平均年齡為34.7歲；男性佔12.7%、其平均年齡為 43.4歲。與發展遲緩兒童關係為其母親居多(77.8%)。二、與照護發展遲緩兒童相關的社會適應因子中，較明顯者為照護者擔憂將來遲緩兒的照護負荷會影響其與家庭成員相處品質、以及擔心遲緩兒將來受到社會排斥。三、本研究發現害怕擔心和心情慌亂不願相信，情緒低落難過，感到疑惑麻木或是複雜情緒，為主要影響照護者社會適應因子的情緒壓力；夫妻相處問題、教養意見出入、教養遲緩兒的挫折感、管教遲緩兒以外子女的壓力等四項，為主要的家庭壓力。四、照護者與兒童的關係，僅與家庭壓力負荷程度呈現顯著的相關性。另外，照護者的教育程度，則與情緒壓力負荷程度、遺傳諮詢認知程度、以及醫藥相關資訊的取得行為，具有顯著的相關性。低年齡層，比起較高年齡層的照護者，家庭壓力的感受程度較強烈，達到統計上有意義的差異。五、具有情緒壓力或感受到家庭壓力較高者，並未傾向願意邀請家庭成員來參與遺傳諮詢；然而對遺傳諮詢的認知較正確，或是對醫療資訊的取得較正向者，則傾向願意邀請家庭成員參與遺傳諮詢。 研究結論：本研究針對發展遲緩兒童照護者的壓力及遺傳諮詢資源之需求，提出以下建議，以供未來服務規劃及研究之參考：一、民眾對遺傳諮詢的認知及可運用資源之獲取經驗，仍相當侷限，有賴提升對民眾的衛生教育，以及加強相關政策的制定與宣導。二、改善照護者的身心健康，增強其社會適應與角色功能可以減少其因相關情緒壓力與照護負荷所帶來的間接社會成本付出。三、對教育程度較低與主動獲取醫療相關資訊動機較弱的民眾，宜採取淺顯易懂的衛教方式，透過更多元的資訊傳播管道，使可運用的資源之獲得對國人更為普及，以提高專業的遺傳諮詢資源對於民眾的可近性及可利用性。四、加強遺傳諮詢的人力培育及制度的建立，讓遺傳諮詢人員在跨專業的健康照護團隊中有其適當的角色並且發揮其專業領域。五、遺傳諮詢人員的專業角色可以在早期療育服務中協同其他各專業，作跨領域的整合，讓此部分有需求的民眾獲得足夠資訊，跨專業共同為發展遲緩或障礙兒童及其家庭提供服務。

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.