Cardiff School of Sport and Health Sciences, Cardiff Metropolitan University, Cardiff, UK.
School of Health Sciences, Bangor University, Bangor, UK.
J Adv Nurs. 2021 Jun;77(6):2887-2897. doi: 10.1111/jan.14803. Epub 2021 Mar 3.
To report a protocol for a qualitative study to better understand the key factors that influence decision making about pregnancy from women's perspectives and to use these data to develop a theoretical model for shared decision-making tools for the multiple stakeholders.
Mixed-method design using online surveys (with validated components) and purposively sampled follow-up semi structured interviews.
Funded from September 2020 for 12 months. Online surveys of adult women (aged 18-50) identified via all Wales kidney database (n ≥ 500), additional recruitment through multidisciplinary healthcare professionals, relevant third sector organizations and social media. Follow-up in-depth qualitative interviews with n = 30 women. Linear regression models to identify associations between shared decision-making preferences and clinical and psychosocial variables. Qualitative interviews will use a visual timeline task to empower women in taking control over their narratives. Qualitative data will be fully transcribed and analysed thematically, based around a chronological and theoretical (theoretical domains framework) structure that maps out key challenges and opportunities for improved decision support in the care pathway. Visual timelines will be used during stakeholder consultation activities, to enable us to co-create a map of current support, gaps in provision, and opportunities for interventions. Quantitative data will be analysed descriptively to characterize our cohort. We will assemble a multidisciplinary shared decision-making intervention development group and provide ongoing stakeholder consultation activities with patient and public representatives.
Outcomes will support new learning into; the ways women's knowledge of kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and how they weigh up the pros and cons of starting a family.
Evidence will inform the design of new shared decision-making tools to better support women with the complex and often emotional decisions about having children while living with kidney disease.
报告一项定性研究方案，以更好地从女性角度了解影响妊娠决策的关键因素，并利用这些数据为多利益相关者的共享决策工具开发一个理论模型。
采用在线调查（包含经过验证的部分）和有针对性抽样的后续半结构式访谈的混合方法设计。
该研究于 2020 年 9 月获得资助，为期 12 个月。通过全威尔士肾脏数据库（n≥500）对成年女性（年龄在 18-50 岁之间）进行在线调查，通过多学科医疗保健专业人员、相关第三部门组织和社交媒体进行额外的招募。对 n=30 名女性进行后续深入的定性访谈。线性回归模型用于确定共享决策偏好与临床和心理社会变量之间的关联。定性访谈将使用可视化时间线任务来增强女性对其叙述的掌控能力。定性数据将根据一个按时间顺序和理论（理论领域框架）构建的结构进行主题分析，该结构描绘了改善护理路径中决策支持的关键挑战和机遇。可视化时间线将在利益相关者咨询活动中使用，以使我们能够共同创建当前支持、提供差距和干预机会的地图。定量数据将进行描述性分析，以描述我们的队列。我们将组建一个多学科的共享决策干预开发小组，并与患者和公众代表进行持续的利益相关者咨询活动。
研究结果将支持新的学习，包括女性对肾脏疾病的了解如何影响计划生育和妊娠、她们在心理和社会支持方面的需求，以及她们如何权衡生育孩子的利弊。
研究结果将为设计新的共享决策工具提供证据，以更好地支持患有肾脏疾病的女性做出复杂且常常情绪化的生育决策。
