成年前期子女經歷父母罹患癌症其家庭角色經驗與個人發展任務之初探

Abstract

當醫院發出ㄧ個危及生命疾病的診斷告知，通常不是意味著立即死亡的宣判，而是代表了病患與其他家庭成員需要長期與疾病共存的開始，所以我們可以說，在醫生確診為癌症的那一刻開始，以家人為主體的生病陪伴經驗也隨之展開。 回顧國內外相關研究，往往把焦點放在病患本身面臨死亡的適應或是主要照顧者的照顧負荷，即使談論父母罹癌對子女的影響，也是聚焦在文獻所謂的高危險群--兒童與青少年，然而，卻少有人注意年輕成人子女的走過這段歷程的生命痕跡，是因為成年前期的子女被視做大人，不需要父母或周遭他人刻意的留意與照顧嗎？抑或是，他們的適應良好、懂事堅強，是理所當然的？我在以前的研究中找不到答案，因此，我選擇了這個研究主題，採用質性訪談的方式，以成年前期子女為發聲主體，透過運用角色理論與成年前期發展理論，針對成年前期子女經歷父母罹患癌症其家庭角色經驗與發展任務，進行初步的探索與分析，以協助相關醫療團隊在提供服務時，能夠更貼近癌症病患成年前期子女的處境與感受。 究竟他們在經歷父母罹患癌症的過程中，有著怎樣的家庭角色經驗？而這樣的角色經驗，在其父母過世或痊癒後，是否有著延續性的效應？他們自己又是怎樣詮釋角色的轉換現象？帶給他們的衝擊與感受又是怎樣的呢？第四章研究發現與分析的第一節，首先以上述提問為基礎，透過深度描繪的方式，用他們的話述說自己的故事，研究發現，當父母因病或是為了照顧配偶，而使得原本的角色功能無法完全發揮甚至缺席時，家庭系統即呈現出不平衡的狀態，為了持續運作，系統會極力維持某種恒定作用(homeoatasis)，常見的策略之一就是家庭角色的的重組與改變，而成年前期子女會因此出現角色反轉、角色取代的現象，以協助家庭系統的持續運作，然而，病患子女可能因此需要被迫放棄夢想，犧牲自己的需求，沒有自己的空間，造成界線上的模糊，甚至導致角色不一致甚至角色過度負荷的現象，限制了自己的自主性與獨立性，然而，研究也發現子女並非一味被動著被情境驅使、影響著，也努力地在其中嘗試找出自己的生存之道、努力地找尋出口。同時，本研究也發現，不是所有受訪的病患子女都會經歷角色反轉與角色取代的經驗，即便如此，他們亦盡責地扮演工具性與情緒性的輔助角色，發揮照顧後備軍的功能，在主要照顧者太累或太忙的時候替補上場，因此也會面臨了程度不一的日常生活型態的改變，在與癌症共存的路途中，發展出以病患為軸心的生活經驗。然而，不論是否經歷明顯的家庭角色轉變，所有病患成年前期子女在陪伴的過程中，都充滿了各種難以處理的情緒，其中有些情緒(例如：難過、無奈、感慨)是所有面對父母罹癌成年前期子女共同的體驗，然而，有些諸如像是瀕臨崩潰、沒有選擇的煎熬、自我逐漸消失…等等較為強烈的情緒反應，只有在經歷角色反轉或角色取代的病患子女身上才會發現，由此可知，兩者的情緒與反應是有其強度與層次性的差別。 接著，研究者在第二節運用成年前期發展理論所提及的重要理論概念或視角為出發點，以檢視父母罹癌對成年前期子女發展任務所產生的影響。我們發現當成年前期子女的發展任務與父母罹癌事件彼此遭逢，其階段性發展任務將受到不小的衝擊，且這樣的影響是多面向的、具有層次性的，能夠廣大到子女對於生命價值觀點的覺醒與改變，也能夠深入到促使子女修正其原本對於生活不切實際的想像、破除長久以來「生活是理所當然」的想法，甚至能夠細膩地影響到他們在一般日常生活中與雙親、朋友的互動方式與氛圍。 承接著前兩節節描繪的是「人」，以及病患子女細膩之主體經驗，在第三節中，研究者嘗試著墨於「情境」，也就是初步整理幾個引發後續家庭角色經驗與發展任務產生改變的情境因子，供相關醫療團隊的實務工作者參考。研究者期望藉此協助實務工作者了解病患子女與癌症共存的主體經驗，且能夠提升其對於情境中容易促發轉變因子的敏感度。父母罹患癌症此一重大危機事件，原本就很容易破壞家庭系統的平衡狀態與改變家庭成員間角色的重新分配，而本研究發現到若病患病情較為嚴重(疾病相關因素)與無其他家庭成員能夠扮演主要照顧者角色(社會因素)的話，就會增加家庭失去平衡的風險性，連帶地使得子女必須要藉由扮演主要照顧者的角色，以協助家庭重建一個安定的環境，能夠有功能地持續運作，渡過危機， 第四節初步討論如何同時運用角色理論與成年前期發展理論，並加以相互參照，以協助我們能對成年前期子女的主體經驗，有更完整、更豐富的了解。 研究發現，從角色理論出發，參照發展理論能夠提醒我們注意到家庭角色經驗可能修正或加速子女發展任務之可能性；而自發展理論出發，加以參照角色理論亦能夠提醒我們需參酌子女於該階段所面臨的發展任務，以協助我們能夠更貼近病患子女在父母罹癌情境中所可能面臨的角色扮演之挑戰與困難，能夠提升實務工作者對於情境中個案「此時此刻」疾病經驗的了解，以進行比較有深度、比較綜合性的評估。 最後，立基於研究結果，本研究針對實務面提出以下三項建議：1)於社會心理評估內容中，增加對於角色承擔與角色轉換的身心壓力調適面向。2)資收收集、評估與處遇計畫，加入發展的概念。3)著眼於家庭系統平衡之於，亦須強化家庭成員之身心健康。而對未來研究建議包括：1)研究擴及至家庭成員的互動。2)縱貫性的研究。3)增加優勢觀點的視角。

When a hospital issues a life-threatening diagnosis, generally it is quite different pronouncing the patient dead on the spot, but rather represents the beginning of a long period of coexistence between the patient, his/her family, and the illness. In other words, at the moment when a patient is diagnosed with cancer, the family’s experience of accompanying him/her through the illness begins. Looking back into some of the relevant studies, one could see that the majority of these studies tended to focus on a patient’s adaptation to facing death or on the burden of primary caregivers. Even though some studies did discuss the impact on offspring after their parent(s) had been diagnosed with cancer, these studies seemed to emphasize only on the “Highly-Risk Group”, which were children and teenagers. However, very few researches delved into the traces that pre-adult left on their life experiences when dealing with their parent’s cancer. Was it because pre-adult children were treated as grownups and that they did not require attention from their parents and others? Or was it taken for granted that pre-adult children were highly adaptive, sensible, and strong? I could not seem to find an answer to these questions in current literature. Therefore, I chose this topic, adopted the means of quality interviews and took pre-adult children as the target group, in order to further explore the experience of pre-adult children’s family roles and developmental tasks during their parent’s cancer experience. By working on this research, I wish to provide medical care groups with information in order for them to better attend to the needs and the feelings of cancer patients’ pre-adult children. What kinds of family roles do these pre-adult children serve during their parent’s cancer experience? Do they continue to play these roles even after their parent passed away or fully recovered from the illness? How would they describe such transition of family role in their own words? What kind of impact did such transition bring to them? In first section of Chapter IV, research discoveries and analyses, I started with these questions and performed interviews by asking the pre-adult children to depict their personal experience in depth and to tell their own story. The results indicated that when a parent’s role is no longer able to function or absent because of illness or taking care of his/her ill spouse, the family system generates a counter reaction to strive for balance (homeoatasis). On of the most common strategies is family restructure or reorganization. Such restructure or reorganization tend to result in role reversal or role replacement of pre-adult children in order to keep the family system functioning. However, these pre-adult children might be forced to give up dreams, sacrifice their needs and privacy, which blur the boundaries of family roles. Moreover, these pre-adult children may even encounter role conflicts and role overloaded, which limit their autonomy and independency. Nevertheless, the results also suggested that these pre-adult children were not necessarily always driven by the situation passively; instead, they struggled to find the best way to cope with the situation and the best way out. In the mean time, the results also showed that not all the interviewed pre-adults experienced reversal and/or replacement of family roles. Even so, this group of pre-adults took the responsibility of assisting the primary caregivers both functionally and emotionally and acted as a reserve unit to substitute for the primary caregivers. Therefore, they also experienced various degree of alteration in living style and developed a patient-centered living experience In addition, no matter they underwent obviously role shift or not, all the interviewed pre-adults seem to share the common experience of facing several kind of negative emotion that are difficult to handle, such as being sad, depressed, and helpless.On the contrary, some of the extreme emotional reactions, such as being on the verge of a collapse, suffering without a choice, and self extinction could only be seen in the cases where pre-adult children experienced a reversal and/or replacement of family roles. Therefore, one can see that there are subtle differences in the degree and level of emotion and reaction between the two groups. In the second section, the important concepts and viewpoints suggested by the pre-adults development theories were adopted to examine the impact on the developmental tasks of pre-adult children as a result of parent’s cancer. We discovered that the encounter of pre-adult children’s developmental tasks with their parent’s cancer creates substantial impacts on the developmental tasks in various stages. Such impacts are multi-dimensional, multi-level and so broad that they could alter and enlighten the children’s viewpoints towards life, urge the children to correct impractical imagination, eradicate the long belief that living is granted, and even influence the details and atmosphere of how these children interact with their parents and friends in their every day life. Following the previous two sections, which focus on “person” and the children’s experience, the third section covers “situation”, which indicates some of the key factors that trigger the corresponding event such as the experience of family roles and alternation of developmental tasks. These factors serve as a reference and potential indicators for the medical care groups, and it is the intention of this research to assist the appropriate medical care units in improving their awareness towards these factors/indicators. A disaster like parent’s cancer by nature has the tendency to wreck the balance of a family system and to force a rearrangement of family roles. This study discovers that if a patient’s situation is more sever (illness-related factor) and if no member of the family could play the role of primary caretaker (social factor), the risk of losing balance increases dramatically. Consequently, these pre-adult children must help restore the family back into a stable and well-functioning state in order to overcome the crisis, by playing the role of primary caretaker. The fourth section includes a preliminary discussion of how to simultaneously apply and cross reference role theories and pre-adult development theories in order to have a complete and overall understanding of the experience of pre-adult children. The results indicated that from the standpoint of role theories, family role experience corrects and accelerates the processes of developmental tasks; from the standpoint of development theories, cross referencing the role theories reminds us to account for the various development tasks the children undertake at the stage in order to better understand the potential challenges and difficulties the children might encounter when playing these roles during their parent’s cancer. By doing so, it helps the practical workers to have better awareness the here and now illness experience of casea, in order to carry out a more in-depth and complete estimation. Finally, supported by the results of this research, I propose the following three practicable suggestions: 1. include role-undertaking and role-shift stress relief in psyco-social assessment , 2. incorporate the concept of development in information collection, assessment, and interventions, and 3. improve individual member’s mental and physical health while focusing on maintaining the balance of a family system. Future work includes: 1. expanding the research to study the interaction between family members, 2. performing longitudinal research, and 3. including the strength viewpoint.