Healey Madison, Craig Julia, Thomas Sarah, Tizzard Jillian, Puddister Kelsey, McGowan Erin L, Twells Laurie K, Wadden Katie P
School of Human Kinetics and Recreation, Memorial University of Newfoundland, Physical Education Building, 230 Elizabeth Avenue, St. John's, Newfoundland and Labrador, NL, A1C 5S7, Canada.
Patient Partner, Memorial University of Newfoundland, St. John's, Newfoundland and Labrador, Canada.
Res Involv Engagem. 2024 Dec 18;10(1):131. doi: 10.1186/s40900-024-00665-0.
Infertility affects an estimated 8 to 12% of the global population and approximately one in six heterosexual couples in Canada. To access fertility services in Newfoundland and Labrador, Canada, individuals with an infertility diagnosis wait for extended periods, and this waiting period has been associated with psychological distress. However, this experience of waiting has not been well studied, and several gaps in fertility research exist. The inclusion of persons with lived experience of infertility in the creation of studies related to infertility may improve research outcomes and create patient empowerment.
To collaboratively develop a qualitative research project focused on understanding the waiting experiences of patients seeking fertility services in Newfoundland and Labrador, utilizing patient engagement initiatives and involving individuals with infertility experiences.
Three patient partners who represented individuals awaiting fertility services were recruited to be research team members. Patient partners were eligible to participate as research team members if they identified as either female or non-binary (to effectively represent the female and non-binary target population in the co-produced qualitative study) and had lived experience waiting for fertility services in the province. The research team developed a detailed patient engagement plan following the International Association for Public Participation framework (IAP2). Data from research team discussion groups were documented using a meeting minutes template. Two questionnaires from the Public and Patient Engagement Evaluation Tool were employed to assess patient partners' impact and satisfaction with the research process.
Patient partner involvement and input helped the co-creation process by refocusing the qualitative study's research aim to empower patients. To accomplish the new research aim, the patient partners refined the study's methodology through adjustments to the research design, protocol, interview guide, and participant criteria of the upcoming qualitative study. The PPEET analysis demonstrated high satisfaction with engagement and a high perceived value of patient contributions in the co-creation of the research study. In turn, the PPEET results indicated that patient partners had a comprehensive understanding of their roles for engagement and were satisfied with their involvement in the various research activities.
In conclusion, using patient engagement to co-create a qualitative fertility study to understand patients' experiences while waiting for fertility services resulted in significant changes to the proposed methodology and research priorities and helped address knowledge gaps in existing fertility research. Most importantly, the patient engagement approach helped foster an inclusive and empowering environment for patient partners to contribute to fertility research.
据估计，不孕症影响着全球8%至12%的人口，在加拿大，约六分之一的异性恋夫妇受此影响。在加拿大纽芬兰与拉布拉多省，被诊断为不孕症的患者需要等待很长时间才能获得生育服务，而这种等待期与心理困扰有关。然而，这种等待经历尚未得到充分研究，生育研究中存在一些空白。让有不孕症实际经历的人参与不孕症相关研究的创建，可能会改善研究结果并增强患者的权能。
通过患者参与计划并让有不孕症经历的人参与，共同开展一项定性研究项目，重点了解在纽芬兰与拉布拉多省寻求生育服务的患者的等待经历。
招募了三名代表等待生育服务的患者作为研究团队成员。如果患者自认为是女性或非二元性别（以便在共同开展的定性研究中有效代表女性和非二元性别目标人群）且有在该省等待生育服务的实际经历，就有资格作为研究团队成员参与。研究团队遵循国际公众参与协会框架（IAP2）制定了详细的患者参与计划。研究团队讨论小组的数据使用会议记录模板进行记录。使用公众与患者参与评估工具中的两份问卷来评估患者对研究过程的影响和满意度。
患者的参与和投入通过将定性研究的目标重新聚焦于增强患者权能，有助于共同创造过程。为实现新的研究目标，患者对即将开展的定性研究的研究设计、方案、访谈指南和参与者标准进行了调整，从而完善了研究方法。公众与患者参与评估工具分析表明，对参与高度满意，且在共同开展研究中患者贡献的感知价值很高。反过来，公众与患者参与评估工具的结果表明，患者对自己的参与角色有全面的理解，并对参与各项研究活动感到满意。
总之，利用患者参与共同创建一项定性生育研究，以了解患者等待生育服务时的经历，导致所提议的方法和研究重点发生了重大变化，并有助于填补现有生育研究中的知识空白。最重要的是，患者参与方法有助于营造一个包容且能增强权能的环境，让患者为生育研究做出贡献。
