照護一位癲癇病發展遲緩病童之護理經驗

A Nursing Experience of Caring for a Child with Developmental Delay Secondary to Epilepsy

本文是描述一位三歲幼兒因癲癇併發展遲緩病童之護理經驗，筆者於2010年10月2日至10月7日護理個案期間，藉由觀察、身體評估、深度會談、電話訪談等技巧，運用羅氏適應模式進行資料收集，過程中發現因母親對癲癇有不正確的認知與處理方式、未有正確訊息來源、不了解早期療育內容而有主要照顧者知識缺失的健康問題；又因癲癇發作時不正確的保護措施且個案走路不穩及肢體不協調，故存在潛在性危險性創傷之威脅；另因個案父親長期於國外工作，所有照顧責任在母親身上、所有的照顧重心在個案身上、無有效的家庭成員支持而產生家庭因應能力失調。經由個別性護理措施給予自製圖卡及日記協助母親了解癲癇發作之正確處理方式及正確的用藥觀念外，更透過與早期療育團隊共同討論擬定護理計畫，同時於兒童發展中心持續追蹤，以主動關心、傾聽、陪伴協助個案及其家屬調適疾病的變化及長時間早期療育對家庭的衝擊，期望藉由此護理經驗與護理同仁在臨床照護發展遲緩病童時，除了疾病照護外，亦可兼顧疾病過程對家庭因應能力之影響，提供以家庭為中心的照護概念，維持其家庭功能，進而提昇生活品質。

This paper describes a nursing experience of caring for a three-year-old toddler with developmental delay secondary to epilepsy. During the nursing period from October 2 to 7, 2010, the author applied Roy's adaptation model for data collection by means of attentive observation, interview, and physical assessment. The identified problems included the patient's mother's lack of knowledge about epilepsy and problems caring for the child without health information resources. Incorrect protective measures increased the potential risk of trauma as a result of unsteady gaits and ataxia. The lack of effective family support led to family's inability to cope; because the patient's father worked overseas, most of the responsibility fell on the mother. The personalized nursing interventions included use of self-made picture cards and diaries, to assist the patient's mother in understanding the disease, and medication. The early intervention team was involved and an individual family service plan was developed. To benefit from early intervention, the patient was followed up by Children Development Center. Early intervention was aimed to help the family cope with the disease process and its long-term impacts on family. The author hopes that not only medical care is met, but also the family centered early intervention services can be addressed to improve the families coping and function. The entire life quality of the family, thereby, can be enhanced.