BC Injury Research and Prevention Unit, Vancouver, British Columbia, Canada.
Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
BMJ Open. 2019 Jun 1;9(5):e025404. doi: 10.1136/bmjopen-2018-025404.
The objective of this study was to explore parent perspectives of and interest in an interactive knowledge translation platform called Child-Sized KT that proposes to catalyse the collaboration of patients, families, practitioners and researchers in patient-oriented research at British Columbia Children's Hospital (BCCH).
An explanatory sequential mixed methods design was used over 1 year. Over 500 parents across BC completed an online survey, including a subsample of 102 parents who had accessed care at BCCH within the past 2 years. The survey explored parent perspectives about the value of their engagement at all stages of the research process and their interest in and concerns with using an online platform. Following the online survey, two focus groups were held with parents in the Vancouver area to explore themes emerging from the survey.
Parents expressed keen interest in engaging in research at BCCH. Parents perceived benefit from their input at all stages of the research process; however, they were most interested in helping to identify the problem, develop the research question and share the results. Although parents preferred online participation, they had concerns about protecting the privacy of their child's information.
Parents see value in their involvement in all stages of child health research at BCCH. Their input suggests that Child-Sized KT, a hypothetical online platform, would facilitate meaningful stakeholder engagement in child health research, but should offer a customised experience and ensure the highest standard of data privacy and protection.
本研究旨在探讨家长对一种名为“儿童大小的知识转化平台”(Child-Sized KT)的交互式知识转化平台的看法和兴趣,该平台旨在促进不列颠哥伦比亚省儿童医院(BCCH)的患者、家庭、从业者和研究人员在以患者为中心的研究中的合作。
在 1 年的时间里,采用了解释性顺序混合方法设计。BC 有超过 500 名家长完成了在线调查,其中包括过去 2 年内在 BCCH 接受过治疗的 102 名家长的亚样本。该调查探讨了家长在研究过程的各个阶段对他们参与的价值的看法,以及他们对使用在线平台的兴趣和关注。在线调查之后,在温哥华地区举行了两次家长焦点小组会议,以探讨调查中出现的主题。
家长对在 BCCH 参与研究表现出浓厚的兴趣。家长认为在研究过程的各个阶段都能从他们的投入中受益;然而,他们最感兴趣的是帮助确定问题、制定研究问题和分享研究结果。尽管家长更喜欢在线参与,但他们对保护孩子信息的隐私表示担忧。
家长认为他们在 BCCH 参与儿童健康研究的各个阶段都有价值。他们的意见表明,儿童大小的 KT,一个假设的在线平台,将促进利益相关者在儿童健康研究中的有意义参与,但应提供个性化的体验,并确保最高的数据隐私和保护标准。