Aoun Samar, Slatyer Susan, Deas Kathleen, Nekolaichuk Cheryl
School of Nursing, Midwifery and Paramedicine, Curtin University, Perth, Western Australia, Australia.
School of Nursing, Midwifery and Paramedicine, Curtin University, Perth, Western Australia, Australia; Centre for Nursing Research, Sir Charles Gairdner Hospital, Perth, Western Australia, Australia.
J Pain Symptom Manage. 2017 May;53(5):851-861. doi: 10.1016/j.jpainsymman.2016.12.327. Epub 2017 Jan 3.
Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members.
To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care.
Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions.
Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research; the majority rated their involvement as very/extremely beneficial (control 77%; intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed"; "connection with others-outward directed"; and "interpersonal-participant-researcher relationship."
This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings.
尽管国际准则强调以患者为导向的护理以及研究参与中的自主决策，但仍存在一个普遍的误解，即研究可能会给患者及其家属带来额外且不必要的负担。
考察参与研究对绝症患者家庭照顾者的经历及影响，重点关注居家姑息治疗。
通过阶梯式楔形整群试验（澳大利亚，2012 - 2015年）完成家庭照顾者支持干预的322名参与者中有316名（98.1%）参加了干预后的电话访谈，内容涉及他们的研究经历，包括定量和定性问题。
对照组（n = 89）和干预组（n = 227）中97%的人都认识到了积极方面，而几乎所有人都未报告参与这项研究有任何消极方面；大多数人将他们的参与评为非常/极其有益（对照组77%；干预组83%）。定性分析产生了三个主要主题：“个人内心导向”；“与他人的联系 - 外向导向”；以及“人际 - 参与者 - 研究者关系”。
本研究提供了定量和定性证据，对这一误解提出了挑战。与卫生专业人员的担忧相反，家庭照顾者珍视参与的机会，并从参与研究中受益。研究方案需要专门针对家庭照顾者的需求进行调整，并且在干预研究结束时为所有参与者提供汇报情况的机会，无论他们被分配到哪个组。促进卫生专业人员理解研究及其风险益处的策略可能有助于减少把关现象并提高研究结果的有效性。
