Burden and benefit of psychosocial research at the end of life
Burden and benefit of psychosocial research at the end of life
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DOI：
10.1089/jpm.2007.9923
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发表时间：
2008-05-01
影响因子：
2.8
通讯作者：
Breitbart, William
中科院分区：
文献类型：
--
作者：
Pessin, Hayley;Galietta, Michele;Breitbart, William
背景：心理社会研究参与的影响还没有系统地研究在姑息治疗设置。人们经常担心绝症患者可能会出现痛苦。当死亡和垂死成为研究的焦点时，这一点尤其如此。因此，重要的是要了解具体的方式心理社会研究可能会潜在地伤害或有助于participator.Objective：为了评估负担和利益参与心理社会研究解决临终问题之间的病人接受姑息治疗。设计：68名平均预期寿命不到2个月的癌症晚期患者，进行了简短的自我报告问卷调查，以评估是否参与心理社会研究是负担和/或有益的。的具体因素，有助于他们的perceptions.Results：大多数患者报告没有负担与参与（75%），并发现经验为中度至高度有益（68%）。最常被认为是负担的因素包括访谈的长度（21%），问卷的结构（18%）和讨论临终问题的困难（12%）。虽然一些患者在讨论临终问题时报告了一些痛苦（19%），但很少有人赞同高水平的痛苦（6%）。最常被确定为有益的因素是社会互动（75%），为社会做出贡献的意识（57%），并有机会讨论他们的疾病（47%）。结论：参与者在社会心理学结束生命的研究是不太可能经历重大的负担，参与，事实上，可能会受益。
Background: The impact of psychosocial research participation has not been examined systematically in palliative care settings. Concerns are often raised regarding the potential for distress among terminally ill patients. This is particularly true when death and dying are the focus of research. Therefore, it is important to understand the specific ways psychosocial research could potentially harm or be helpful to participants.Objective: To assess the burden and benefits of participation in psychosocial research addressing end-of-life issues among patients receiving inpatient palliative care.Design: Sixty-eight terminally ill patients with cancer who had an average life expectancy of less than 2 months, were administered a brief self-report questionnaire to assess whether participation in psychosocial research was burdensome and/ or beneficial. The specific factors that contributed to their perceptions were also identified.Results: The majority of patients reported no burden associated with participation (75%) and found the experience as moderately to highly beneficial (68%). Factors most frequently identified as burdensome included the length of the interview (21%), structure of the questionnaires (18%), and difficulty discussing end-of life issues (12%). Although some patients reported some distress while discussing end-of-life issues (19%), few endorsed a high level of distress (6%). Factors most frequently identified as beneficial were the social interaction (75%), sense of contributing to society (57%), and the opportunity to discuss their illness (47%).Conclusions: Participants in psychosocial end-of-life research are unlikely to experience significant burden from participation and, in fact, may benefit.