Who Will Speak for Me? Improving End-of-Life Decision-Making for Adolescents With HIV and Their Families
Who Will Speak for Me? Improving End-of-Life Decision-Making for Adolescents With HIV and Their Families
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DOI：
10.1542/peds.2008-2379
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发表时间：
2009-02-01
期刊：
影响因子：
8
通讯作者：
D'Angelo, Lawrence J.
中科院分区：
文献类型：
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作者：
Lyon, Maureen E.;Garvie, Patricia A.;D'Angelo, Lawrence J.
目标。本研究的目的是检验一个以家庭/青少年为中心的青少年HIV感染者及其家庭预先护理计划模型的有效性，以提高一致性和沟通质量，同时减少决策冲突。患者和方法。我们的研究是一项两组随机对照试验，于2006年至2008年在华盛顿和孟菲斯的两家医院门诊进行。参与者（N = 38对）包括医学上稳定的14至21岁艾滋病毒/艾滋病青少年和年龄为>= 21岁的代孕母亲/家庭。每隔一周进行三次60到90分钟的访谈，由一位经过培训/认证的面试官进行半结构化的家庭访谈。每次会议分别包括：(1)里昂预先护理计划调查；(2)尊重选择访谈；(3)五个愿望。对照组收到(1)发展历史，(2)安全提示，(3)未来计划。家庭一致性通过治疗偏好表测量，青少年决策冲突通过决策冲突量表测量，在第2期后立即进行。每次访谈结束后，采用《参与者-访谈者沟通质量量表》对访谈者的沟通进行测量。青少年人口统计数据如下：平均年龄16岁；40%是男孩；92%是黑人；艾滋病毒传播率为围产期68%，性感染32%；42%无症状；29%有症状；29%的人被诊断患有艾滋病。观察到干预组与对照组在两种情况下测试2 kappa值差异的一致性显著增加。参与干预的青少年报告说，他们对临终决定的了解明显更好。随着时间的推移，干预青少年和所有的代理人更有可能感到他们的态度和愿望被采访者所了解。与对照组相比，干预家庭将讨论的整体质量评定为非常好至优秀。由训练有素的辅导员进行的以家庭为中心的预先护理计划增加了青少年/代理人对临终关怀的偏好一致性，减少了决策冲突，提高了沟通质量。家庭承认这是一种危及生命的情况，并且当他们的青少年在医学上稳定时，他们愿意开始临终对话。儿科2009;123: e199-e206
OBJECTIVES. The purpose of this research was to test the effectiveness of a model of family/adolescent-centered advance care planning for adolescents living with HIV and their families for increasing congruence and quality of communication while decreasing decisional conflict.PATIENTS AND METHODS. Ours was a 2-group, randomized, controlled trial in 2 hospital-based outpatient clinics in Washington and Memphis from 2006 to 2008. Participants (N = 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV/AIDS and surrogates/families aged >= 21 years. Three 60- to 90-minute sessions were conducted 1 week apart via a semistructured family interview with a trained/certified interviewer. Each session encompassed, respectively: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Controls received (1) developmental history, (2) safety tips, and (3) future plans. Family congruence was measured by the Statement of Treatment Preferences and adolescent decisional conflict by the Decisional Conflict Scale, immediately after session 2. Communication was measured by the Quality of Participant-Interviewer Communication Scale after each session.RESULTS. Adolescent demographics were as follows: mean age was 16 years; 40% were boys; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Significantly increased congruence for testing the difference of the 2 kappa values for the 2 conditions was observed for intervention versus control dyads. Intervention adolescents reported feeling significantly better informed about end-of-life decisions. Intervention adolescents and all of the surrogates were more likely to feel that their attitudes and wishes were known by the interviewer over time. Intervention families, significantly more so than controls, rated the overall quality of discussion as very good to excellent.CONCLUSIONS. Family-centered advance care planning by trained facilitators increased congruence in adolescent/surrogate preferences for end-of-life care, decreased decisional conflict, and enhanced communication quality. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable. Pediatrics 2009; 123: e199-e206