愛滋病毒感染者病情告知困境受家庭關係之影響 及其因應行為

Abstract

憂鬱症、癌症及愛滋病並駕齊驅，被公認是新世紀的三大疾病。而愛滋病的照護、醫療倫理和心理衛生則面臨更大的挑戰，不只在醫學上，更是社會文化裡一個刻不容緩的問題。本計劃將呈現台灣北部某醫學中心對愛滋病真相告知與家庭關係的現象文化描述，剖析所可能遭遇的困境、詮釋、和應對之情境脈絡。研究計劃將採用質性研究中之深度訪談法，實施策略是由感染者及已知病情家屬的觀點，於門診或病房諮商室以開放式問題來收集資料。研究中共對愛滋感染者7位和家屬3位進行個別深度訪談，收集其目前對疾病醫療和照護的處境及生命經驗，並鼓勵其抒發對愛滋真相告知的期望、擔憂、應對及可能發生的倫理困境等，發表多重的聲音及觀點。完成資料之逐字稿後，以ATLAS.ti 6.2質性分析軟體協助整理逐字稿內容，研究結果呈現出愛滋病毒感染者的告知經驗共包含了五個範疇：「初知愛滋診斷內心的衝擊」、「不能說的秘密」、「告知疾病診斷的理由」、「因疾病而轉變的家庭關係」、「接受疾病，人生旅程再出發」。從中分析得知感染者告知家屬病情的瓶頸在於「無法預期父母之反應」以及「愛滋社會烙印」為兩大主因，故進一步建議由醫院實務、法令政策、新聞媒體及有力人士的參與等四個層面著手來協助愛滋之去烙印，並促使臨床醫療專業人員對感染者之病情告知有更深入的瞭解，進而提供適當的方法及所需的資源，協助感染者及家屬因應疾病帶來的衝擊，使感染者及其家屬彼此達到的最大支持功能。

HIV infection, depression and cancer are the three major challenges to public health in our era, while HIV infection is even more challenging from the aspects of medical ethics, nursing care, and mental health. This study aimed to demonstrate the possible consequence and problems during disclosure of their disease status in HIV-infected patients. We interviewed 7 HIV-infected individuals and 3 of their family members in one medical center in northern Taiwan from Apria to September 2011. The interview was conducted with open-end questions at the outpatient clinic or at the ward. Words from the interviewees were typed down and analyzed with qualitative analysis software (ATLAS. ti 6.2). Our result comprised five different aspects of disclosing process, including “psychological impact at diagnosis”, “untold secret”, “reasons for disclosure”, “a changing family relationship”, “acceptance and being reborn”. We concluded that the main factors hinder the HIV-infected individuals from disclosure were “unpredictability of parental response” and “social stigma”. We suggested a more aggressive approach, with the help from hospital, legislature, public media, and social influential icons to promote desigmatization of HIV infection.