Gysels Marjolein, Shipman Cathy, Higginson Irene J
Palliative Care, Policy and Rehabilitation, King's College London School of Medicine at Guy's, King's College and St. Thomas' Hospitals, London, United Kingdom.
J Pain Symptom Manage. 2008 Apr;35(4):347-55. doi: 10.1016/j.jpainsymman.2007.05.012. Epub 2008 Feb 4.
The aim of this study was to explore patients' and carers' preferences and expectations regarding their contribution to research in palliative care through the use of qualitative interviews. Data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. Both studies recorded the recruitment process, numbers of patients or carers accepting and declining, and the circumstances of interviews. Participants were asked about their motivation to participate in research. The data were analyzed by labeling patients' reflections on their motivations for participating in these studies and identifying themes. Analysis of the recruitment process revealed differential patterns in decline and acceptance of interviews by patients with different conditions and across settings. Among cancer patients, 21/51 declined; the proportion with other conditions that declined was small, and was 0/10 for patients with motor neuron disease. Motivation to participate in the studies was related to (1) altruism, (2) gratitude and concerns about care, (3) the need to have somebody to talk to, and (4) the need for information or access to services. Palliative care patients and carers were capable of deciding whether to participate in interviews and negotiating how they wanted this to happen. This strengthens the argument for patients' autonomy in deciding whether to participate in research. Patients and carers have different motivations for participation, reflecting the heterogeneity of the palliative care population. This suggests a need for ethics committees to reconsider their views and widen their perspectives on the involvement of palliative care patients and carers in research.
本研究的目的是通过定性访谈，探讨患者及其照护者对于参与姑息治疗研究的偏好和期望。数据收集于两项探索姑息治疗患者及其照护者护理体验的研究中。两项研究均记录了招募过程、接受和拒绝参与的患者或照护者数量以及访谈情况。参与者被问及参与研究的动机。通过标注患者对参与这些研究动机的反思并确定主题来分析数据。对招募过程的分析揭示了不同病情患者以及不同环境下接受和拒绝访谈的差异模式。在癌症患者中，21/51拒绝参与；其他病情患者中拒绝参与的比例较小，运动神经元病患者为0/10。参与研究的动机与以下因素有关：（1）利他主义，（2）感恩以及对护理的关注，（3）需要有人倾诉，（4）需要信息或获得服务。姑息治疗患者及其照护者有能力决定是否参与访谈，并就如何参与进行协商。这强化了患者在决定是否参与研究方面的自主权的论点。患者和照护者参与的动机各不相同，这反映了姑息治疗人群的异质性。这表明伦理委员会需要重新审视其观点，并拓宽对姑息治疗患者及其照护者参与研究的看法。
