癌症病童其健康手足之生活適應

Abstract

根據中華民國兒童癌症基金會民國98年統計，台灣每年約有550位新發病之癌症病童，癌症病童被診斷為癌症後，父母親經常忙於照顧癌症病童，往往忽略家中其他需要被照顧的孩子，造成健康手足有失落、孤單、忌妒等情緒，也間接影響手足關係。本研究旨在運用深度訪談、投射性遊戲及繪畫方式，由健康手足及其主要照顧者和重要他人的觀點，瞭解經歷癌症病童罹病後其健康手足實際生活感受與適應情形。 本研究採質性研究現象學方法，自98年11月至99年4月以立意取樣及滾雪球方式，取自台灣北部某醫學中心18歲以下，初診斷半年至2年之癌症病童其18歲以下健康手足。參與研究者包含5位健康手足，其年齡範圍為2至14歲，以學齡期為最多；其主要照顧者與重要他人10位，共15位研究對象。訪談時間學齡期與青春期健康手足約30至60分鐘；幼兒期與學齡前期健康手足訪談時間則視兒童當天狀況而定。於會談後，將錄音的訪談內容逐字謄寫並反覆循環地萃取現象之精髓意義，採用內容分析法並同時應用Nvivo 8.0質性分析軟體，進行資料彙整。 依據Colaizzi(1978)所提出的現象學研究步驟進行資料分析，研究結果歸納出四個範疇：面臨手足罹患癌症的衝擊、不可抗拒的家庭生活變動、情感在生活中擺盪、重新建構家庭生活。 一、面臨手足罹患癌症的衝擊，此範疇包含兩個主題：（1）面對家有癌症手足的事實，其次主題為：父母親告知手足罹病及瞬間而降的驚嘆號（2）手足罹病的認知及感受，其次主題為：對罹病原因及現象的臆測、擔心害怕失去手足、對病童外觀改變的特殊感受及不刻意、不主動向外人提及手足生病。 二、不可抗拒的家庭生活變動，此範疇包含三個主題：（1）承受與摯愛母親分離，其次主題為：強行被帶走的母親、輕聲滑落的眼淚及電話一端解思念（2）生活作息失衡及調整，其次主題為：親友代母職照顧生活起居、飲食型態改變、睡眠品質改變及在病房的休閒生活（3）獨立自主與依賴邊緣徘徊，其次主題為：獨自一人的生活、初嚐自由的滋味及學業成績退步。 三、情感在生活中擺盪，此範疇包含兩個主題：（1）不平等的愛，其次主題為：手足生病最偉大及雙親對手足間管教的差異（2）點到為止的衝突，其次主題為：心疼手足受疾病所苦、自我犧牲與退讓與包容及接納手足的情緒及行為反應。 四、重新建構家庭生活，此範疇包含兩個主題：（1）珍惜難得手足情緣，其次主題為：脣齒相依的手足關係及因為他/她是我手足（2）自我成長與蛻變，其次主題為：心疼母親的勞累、協助照顧與陪伴手足、自我負責與自我照顧、體會生命的強韌及期盼他/她健康。 本研究結果發現父母於孩子發展時期扮演重要角色，當家中有癌症病童，其健康手足面臨生活改變的衝擊不亞於癌症病童及父母；而父母、親友、醫護人員甚至學校老師若瞭解健康手足認知感受與生活處境，可積極協助加強家庭成員間良好互動關係，以維持健康手足身心發展。藉此亦提供慢性疾病兒童以家庭為中心護理照護重要參考指引，並協助家庭的適應。

Background and purposes: According to an estimate of Childhood Cancer Foundation of Republic of China in 2009, approximately 550 children are diagnosed as cancer each year. When children are diagnosed, their parents always focus on cancer treatment and care, and sometimes neglect other healthy children, which may result in depressed emotion, loneliness and jealousy among healthy siblings. These negative emotions may affect the relationship between siblings. The purpose of the study was to explore the point of views by means of in-depth interview, projective play and drawing to understand the life adjustment of the healthy siblings of children with cancer. Methods: Qualitative study using phenomenology approaches was conducted at a medical center of northern Taiwan. Purposive and snowball sampling methods were applied to recruit subjects from November, 2009 to April, 2010. The criteria of recruitment were: children newly diagnosed as cancer from six months to two years and currently received cancer chemotherapy; sibling of sick child aged less than 18 years old. Five healthy siblings who participated at the study were between 2 and 14 year old. Ten significant caregivers were invited to the study. Each schooler was interviewed lasted from 30 and 60 minutes; however, preschoolers and toddlers varied depending on their conditions. Data were recorded during the interviewing process, transcribed into verbatim right after interview, and then extracted the essences of the phenomenon iteratively. In order to illuminate siblings their own experience a qualitative data analysis method proposed by the Nvivo 8.0 qualitative software was used. Results: Four domains were generated by Colaizzi (1978) method as follows: Encountering the impact of siblings with cancer, inevitable changes of the family life, mood fluctuation in daily life and reconstruction of the family life. First, encountering the impact of siblings with cancer includes two themes: 1. Realizing the fact that cancer happens in the siblings; the subthemes includes the astonishing response to the fact and informed by their parents. 2. Perception of the sick siblings; the subthemes include surmising the causes and outcomes of the disease, worrying loss of the siblings, responding to the appearance changes of the ill children, and reluctant to mention the sick siblings. Second, inevitable change of the family life includes three themes: 1. Separating from the beloved mother; the subthemes includes forcedly removed mother, silent tearing and grief relieve by phone. 2. Unbalance and adjustment of living; the subthemes include changing caregivers, dietary habit, quality of sleep, and leisure activities. 3. Shifting between independence and dependence; the subthemes include living alone, lack of restriction and regression of school performance. Third, mood fluctuation in daily life includes two themes: 1. Unequal love; the subthemes include granted privilege of the ill siblings and different disciplines among siblings. 2. Less conflict with the ill siblings; caring suffering of the sick siblings, self-sacrificing and tolerating inappropriate emotion and behavior of the ill siblings. Fourth, reconstruction of the family life includes two themes: 1. Cherishing relationship with siblings; the subthemes include close relation to each other and pleasure of having siblings. 2. Becoming mature; the subthemes include caring efforts of the beloved mother, assisting in caring and accompanying siblings, self-conscientiousness and self-care, experiencing strength of life and expecting health of the siblings. Conclusion: The study findings indicated that parents play a vital role during child development period, and the challenges for siblings of children with cancer might be particularly more stressful than cancer children themselves and their parents. Health professionals must understand healthy sibling feelings and situations. The more supports those siblings got, the better coping abilities they might have and improving the interactions among family members.