癌症病童手足生活經驗改變的初探

Exploring the Changes of the Lived Experience among Siblings of Children with Cancer

父母親因忙於照顧癌症病童往往忽略家中其他孩子，過去缺乏本土性之相關文獻。故本研究以現象學研究法在初探家中有癌症病童之學齡前期與學齡期手足生活經驗的改變。自2003年12月至2004年9月止，於南部某醫學中心兒童腫瘤科病房，訪談三位5-9歲癌症病童之手足及其主要照顧者，藉由正式及非正式深入訪談、行為過程紀錄、手足繪畫和第一研究者的反省日記進行資料收集。以Miles與Huberman之內容分析比較法分析資料。結果顯示癌症病童手足經歷三個方向的生活改變：（l）個人心理改變，如生活上擔憂增加、對病童罹病之焦慮、負向的自我概念；（2）家庭成員互動改變，如與母親、父親及手足間之關係改變；（3）社會關係改變，如渴望同伴、休閒育樂型態改變等。顯示癌症病童之手足正經歷動態生活之改變和潛在的適應不良。護理人員應協助家中成員辨識手足之行為改變和生活需求。此研究可幫助臨床護理人員更加瞭解癌症病童手足之需要。

Few nursing studies in the past two decades have focused on siblings of children with cancer. Taking care of a hospitalized child with cancer, parents might neglect other children at home. Nursing providers need more information related to siblings and their psychosocial adaptation when one of their children is diagnosed with cancer and undergoing a variety of treatment protocols. The purpose of this study was to explore the changes in the experiences of preschool and school age siblings of children with cancer. A phenomenological study was conducted at a teaching hospital in southern Taiwan. Three children aged between five and nine years old who were siblings of a hospitalized cancer patient were approached in 2003-2004. Their families were also interviewed. Data included in-depth, formal and informal interviews, process recordings, drawings by the children, and a diary of reflections kept by the first author. Interviews lasted between 30 and 90 minutes. The qualitative data analysis method devised by Miles and Huberman (1994) was used. The findings indicated that there were three different changes in experience: Changes in psychological status, i.e., increase in worry about life, anxiety about the disease, and negative self-concepts; Changes in family interaction, i.e., relationship with mother, relationship with father, relationship with other siblings; Changes in social relationship, i.e., hunger for companions, changing recreation. Siblings do experience changes in their lives and may experience mal-adaptation. Nursing providers need to be aware of these changes and identify the health needs among caregivers and siblings of children with cancer. The findings of this study may be helpful to clinical nurses seeking to understand the needs of siblings of children with cancer.