側彎人生正向行－早發性脊椎側彎青少年與疾病共舞之生命經驗

Abstract

本研究以深度訪談的方式，訪談6位早發性脊椎側彎青少年患者，了解他們罹病的主觀感受與經驗詮釋，分析疾病對青少年發展的影響，並探究少年在罹病過程中復原力的展現。\n\n 脊椎側彎的青少年生理上許多不舒適的感受，包括痠痛、睡不好、活動受限，或因器官受壓迫，而有喘、尿床、進食困難的症狀。脊椎側彎少年的治療經驗，是隨著病況依時續向前延伸的歷程，本研究將其歷程分為四個階段：（1）焦急的四處求醫；（2）治療的挫折與無力；（3）不得不的手術；（4）治療後的影響與調適。\n\n 罹病少年與一般青少年有著相同的發展職責，卻面對與一般青少年有不同的壓力與考慮，他們的人生選擇也會圍繞著疾病，而存在著相當程度的限制。研究發現青少年（1）身體心像紊亂；（2）過度保護下失去對自主的掌控；（3）人際關係遭霸凌與排拒；（4）在治療與學業中分身乏術；（5）生涯選擇影響上：青少年因健康因素帶來生涯選擇的限制，家長也會對少年職涯發展期待降低。但青少年則較希望從事助人工作；（6）消極的婚姻擇偶考量：擔心身體的限制成為交往上的阻礙及能否正常生育。\n\n 青少年經歷疾病的歷程後，支持他們度過這些困境的復原力量為何，這股復原的動能又如何對少年的生命或未來產生影響。研究發現影響復原力的保護因子有（1）個人保護因子：獨立、懂得努力並勇於嘗試、主動爭取資源、樂觀面對疾病苦痛、忍耐、疾病中求生存，發展出因應疾病的方式；（2）家庭保護因子：情緒性支持（家人引導正向思考、家人給予無條件心理支持）、工具性支持（協助身體照顧）；（3）社區保護因子：學校環境的支持（提供少年機會擁有正向經驗、師長適度關心，增加少年安全感、同儕關心和接納，獲得團體歸屬感）、醫療環境的支持（醫療人員給予專業的建議與協助、支持與鼓舞、醫療補助減輕家庭經濟負擔、病友間同理與激勵的力量）。復原力量展現的結果面貌可分為四個面向，分別為（1）改變慣性認知，重新建構生命意義；（2）感同身受，滋養寬以待人的同理能力；（3）樂於助人；（4）生命態度的樣貌－懷抱感恩心情，並更珍惜當下，勇於表達愛與感謝。\n

In-depth interviews were conducted in this study, and six adolescents with early onset scoliosis were interviewed to understand their subjective feelings and experience interpretations, analyzing the impact of the illness on their development, and investigating the demonstrations of resiliencies in the course of the illness.\n\n Adolescents with scoliosis experience much physiological discomfort, including pain and soreness, poor sleep quality, limited mobility, or symptoms caused by organ compression such as shortness of breath, bed-wetting, and difficulties in eating. The treatment experiences of adolescents with scoliosis are continuous processes extending alongside their conditions; the process is divided into four stages in this study: (1) a frantic search of medical help; (2) frustration and helplessness during the treatment; (3) unavoidable surgery; (4) impacts and adaption after the treatment.\n\n The adolescents with the illness have the same responsibilities to develop themselves as normal adolescents do, but have to face different pressures and concerns; moreover, with their life choices revolving around the illness, there are considerable levels of limitations. Studies have found the adolescents to be: (1) disturbed in body images; (2) deprived of autonomy due to overprotection; (3) bullied and rejected in relationships; (4) unable to handle medical treatments and academic work at the same time; (5) affected in career choices: the adolescents’ career choices are limited by their health, and their parents also have lower expectations for their career development; (6) pessimistic when it comes to considering marriage or partner choices: they worry that their body limits may become dating obstacles, and that they may not have be able to have children normally.\n\n After the adolescents go through the journey of the illness, what are the resiliencies supporting them through the difficulties, and how do the resiliencies impact their life and future? Studies have found that protecting factors that can influence recovery include: (1) personal protecting factors: independence, an understanding that hard work is required and courage in venturing, positivity in facing the pain from the illness, resilience, the will to survive the illness and figure out ways to cope with it; (2) family protecting factors: emotional support (guidance in positive thinking and unconditional psychological support from the family), instrumental support (body care assistance); (3) community protecting factors: school environmental support (opportunities to create positive experiences, appropriate attention from teachers, a sense of safety, acceptance and affection from peers, which can provide a sense of belonging), medical environmental support (professional advice and assistance from the medical staff, support and cheering from the medical staff, medical financial support to alleviate family burdens, empathy and the power of encouragement between patient friends). The results of recovering strength demonstration can be divided into four aspects: (1) adjustment of habitual mindsets and the reconstruction of life meaning; (2) feeling for others and the cultivation of the ability to be forgiving and have empathy; (3) eagerness in helping others; (4) exhibiting a life attitude embracing feelings of gratitude, and possessing a stronger appreciation of the moment and courage in expressing love and gratefulness.