腦性麻痺患者之照顧者生活品質探討：先導性研究

Quality of Life in Caregivers of Patients with Cerebral Palsy: A Pilot Study

林政緯(Cheng-Wei Lin) ； 吳玉欣(Yu-Hsin Wu) ； 陳怡媜(Yi-Jen Chen) ； 郭乃文(Nai-Wen Guo) ； 張瀚云(Han-Yun Chang) ； 徐菁寧(Ching-Ning Hsu) ； 林姿延(Tz-Yan Lin) ； 陳天文(Tien-Wen Chen)

《安泰醫護雜誌》 19卷4期 (2013/12) Pp. 1-8

摘要

目的：探討腦性麻痺患者在各方面的照護需求程度以及家庭支持度與照顧者生活品質間的關係，進而提升整體照護品質。方法：發放100份問卷予主要照顧者，內容包含簡明版世界衛生組織生活品質問卷、照護需求層級量表及家庭支持度量表，並分析之間的相關性。結果：48份有效問卷中，病患在認知與情緒方面的照護需求層級與照顧者在生理、心理及環境這三種範疇的生活品質，以及在日常生活活動的照護需求與照顧者在生理範疇的生活品質皆呈現顯著負相關；家庭支持量表方面，只有對於健康訊息的支持度這個因素與照顧者在社會關係及環境這兩種範疇的生活品質呈現顯著正相關。結論：腦性麻痺患者的照護需求層級與照顧者的生活品質確實有所相關，尤其是認知與情緒方面影響照顧者生活品質的範疇更為廣泛，建議除傳統復健治療外，宜以家庭為中心加強認知、情緒調控、社會互動及現實感等功能。

關鍵字

生活品質 ； 腦性麻痺 ； 照顧者

並列摘要

Purpose: This study aims to discuss the quality of life in caregivers of patients with cerebral palsy and its relationship to the hierarchy of the care required and family support. Then, the medical staff can provide more integrated care. Method: We sent out 100 copies of the questionnaires to the caregivers. The questionnaires used were hierarchy of the care required (HCR), Taiwanese version of the World Health Organization Quality of Life-Brief (WHOQOL-BREF), and a family support scale. Results: 48 applicable results were analyzed. The patients' cognitive and emotional HCR had significant negative correlation to the caregivers' physical health, psychological health and environment domains of WHOQOL-BREF respectively (r=-0.322, -0.320及-0.353); the activity of daily life (ADL) HCR also had significant negative correlation to the physical health domain of WHOQOL-BREF (r=-0.346). In a total of seven dimensions of the family support scale, only the support for health-related information had positive correlation to the social and environmental domains of WHOQOL-BREF respectively (r=0.333, 0.371). Conclusion: The quality of life in caregivers of patients with cerebral palsy indeed has relationship to patients' HCR, especially to the cognitive and emotional dimensions. The higher cognitive and emotional HCR, and the quality of life in caregivers has more extensive influence. Therefore, we recommend enhancing the patients' cognition, motional control, social interaction and reality as additional supplementation to conventional rehabilitation, which focuses on motor and ADL function. Even family-centered therapy could be considered in order to improve the patient's function and family's quality of life.

並列關鍵字

quality of life ； cerebral palsy ； caregiver