運用家庭優勢導向治療對話於一位萊氏症候群青少女及其家庭之進階護理經驗

Advanced Practice Nursing Experience of a Female Adolescent With Leigh Syndrome and Her Family: A Family Strengths-Oriented Therapeutic Conversations Approach

本文為運用家庭優勢導向治療對話於一位萊氏症候群青少女及其家庭之進階護理經驗。照護期間為2022/9/20至11/19，筆者以直接照護、觀察、會談、遠距照護、家訪及病歷查閱等方式收集資料，確認個案家庭有家庭因應能力的準備度不足之健康問題。筆者發揮進階護理師之角色功能，運用家庭優勢導向治療對話，使案父及案母能對疾病經歷進行反思，進而提升生活質量及對醫療保健服務的滿意度，提供個案及家庭可近性、協調性、全面性等三種照護模式，達到以家庭為中心、社區系統為基礎及醫療系統為核心之目標。建議於醫療決策前，以現有的實證基礎，結合個案及家屬本身的價值觀與偏好，使病人及家庭擁有共同參與醫療照護、達成醫療照護決策共識的機會，支持並協助案家做出經過審慎思考後，符合其家庭現況及需求的醫療決策。

This article applied a family strengths-oriented therapeutic conversations approach to explore the advanced practice nursing experience of a female adolescent with Leigh Syndrome and her family. During the nursing care period from September 20 to November 19, 2022, the author collected data through direct care, observation, interview, telecare, home visits, and medical record reviews and confirmed the nursing problems to be the inadequate coping capability of the family. The author leveraged her advanced nurse practitioner role and used family strength-oriented therapeutic conversations to enable the parents of the patient to reflect on their experiences with this disease and to improve their quality of life and satisfaction with healthcare services. Three modes of care, including accessibility, coordination, and comprehensiveness, were offered to the female adolescent patient and her family to achieve the goal of family-centered, community-based, and medical-system-centered care. It is suggested that before making healthcare decisions, patients and their families should be given the opportunity to participate in the healthcare process and reach consensus on healthcare decisions based on existing evidence and their values and preferences. The medical decisions made by patients and their families after carefully considering their current situation and needs should be supported and assisted.