探討一位母親照護呼吸器依賴病嬰從醫院到居家的過渡期經驗

The Experience of a Mother Caring for a Ventilator- Dependent Infant Transiting from Hospital to Home

本文乃以深度訪談法探討一位母親照護由新生兒加護病房出院返家，且需要依賴呼吸器病嬰的過渡期經驗，會談資料以內容分析法分析訪談內容。母親的過渡期經驗有：(1)母親個人自我負向評價，包括母親的自責、缺乏控制感及擔心社會烙印；(2)缺乏適當的家庭支持，包括緊張的婆媳關係及缺乏先生的支持；(3)缺乏醫療人員適當的支持，包括溝通品質欠佳及缺乏足夠的實際練習。出院準備計畫應在病人一入院時即開始準備，醫療團隊應將父母納入，共同討論學習的內容及時間表，而父母也需要足夠的機會練習居家照護技能及知識，以確保他們有能力及自信於返家後照顧呼吸器依賴之病嬰。此外，醫療人員應確保父母有足夠的家庭和社區支持，以滿足病嬰和父母的照護需求。

This case report used an in-depth interview to explore a mother’s transitional experience of caring for her infant who was discharged from the neonatal intensive care unit to home and needed a respiratory machine at home. Interview data was analyzed by content analysis. The transitional experience of the mother included (1) negative appraisal for the mother herself, including the mother’s self-blame, feeling of lack of control, and worrying about social stigma; (2) lack of family support, including poor relationship with her mother-in-law and lack of support from her husband; and (3) lack of appropriate support from health care professionals, including poor quality communication, not enough practice of skills, and lack of appropriate home consultations. Health professionals should start discharge planning on the first day of patients’ hospitalization. Health professionals should involve parents in discharge planning and discuss education content and schedule with them. Parents should be provided with sufficient opportunities to practice home care skills and knowledge to ensure their ability and confidence in caring for their ventilator dependent infant at home. Finally, health professionals need to ensure support from family and community to meet infant and parents?caring needs.