成人愛滋感染者父母親之照顧經驗

The Experience of Parents Caring for Adult Children with HIV/AIDS

抗愛滋病毒藥物雖然可有效地降低愛滋病患之死亡率及延長其平均餘命，但愛滋病所帶來的污名化、衝突和陰影仍會造成家人嚴重心理壓力及情緒障礙，尤其是擔任主要照顧者的父母在照顧過程中須面對愛滋病污名及慢性病程的壓力。本研究目的為探討18歲以上成人愛滋感染者之父母親的照顧經驗。採立意取樣選取7位成人愛滋感染者的父母為研究對象，以半結構式的訪談指引進行深度訪談，每位訪談1-3次，每次1.5-3小時。所得的文本以主題分析法透過詮釋循環及詮釋螺旋的歷程，歸結其照顧經驗為：「未料兒病惹爭議，只能假裝掩顧忌」、「羞憤痛苦受打擊，生活互動變化啟」、「毋甘受苦頻叮嚀，盡心照顧盼轉機」、「無奈因果早註定，只盼為兒擔業障」四個主題。「愛」與「責任」為成人愛滋感染者父母親之照顧經驗最深層的本質。本研究結果可增加臨床工作者對愛滋病家庭壓力經驗的瞭解，發展出以當事人經驗本質結構為導向的護理照護策略。

Antiretroviral treatment dramatically reduces mortality and prolongs the life expectancy of HIV/AIDS patients in Taiwan. The stigma attached to AIDS, and conflicts within the family result in family stress and emotional distress. Consequently, parents of adult children with HIV/AIDS endure perpetual distress while caring for their adult children. The purpose of this study is to elucidate the experiences of seven parents caring for children over 18 years of age with HIV/AIDS. Hermeneutic phenomenological methodology was applied to reveal the trajectory of parents’ caring experiences and to discover the hidden meanings of the phenomena. Data were collected using semi-structured in-depth interviews lasting from 1.5 to three hours. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using thematic analysis with the concept of the hermeneutic circle. Four essential themes emerged, and were identified and clarified. The parents' caring experiences were: (1) We didn't expect our children's controversial illness, so we pretend to ignore the taboo; (2) We are suffering from shame, and our daily lives and interaction with others have changed; (3) We provide advice frequently to protect our children from pain, and try our best to take care of them in order to bring them better fortune; and (4) We feel helpless in the face of predestined causality, and wish we could bear the burden of sin for our children. Unconditional love and endless responsibility, furthermore, were the essential experiences of these parents. Our findings highlight the importance of patient-center nursing care for HIV/AIDS patients and for healthcare professionals to assist HIV affected families on related family stress throughout the illness trajectory.