Abstract
AimTo 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.DesignMixed‐method design using online surveys (with validated components) and purposively sampled follow‐up semi structured interviews.MethodsFunded 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.DiscussionOutcomes 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.ImpactEvidence 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.
Highlights
An estimated 195 million women are affected by kidney disease worldwide. (‘2018 WKD Theme -World Kidney Day’, n.d.) Recent research increasingly highlights that many aspects of kidney disease have specific gender disparities (Bikbov et al, 2018; Goldberg & IIan, n.d.; Iseki, 2008; Nature Publishing Group, 2018; Piccoli et al, 2018)
Recent research in developed countries has focussed on learning more about experiences of care and support from the women's perspectives and found among other things, an unhelpful focus on clinical perspectives of risk, and importantly a need for new shared decision-making interventions to support patients and professionals with the complex and often emotional decisions which need to be made about pregnancy while living with kidney disease (Jesudason & Tong, 2019; Tong et al, 2015)
This study will address an important gap in the evidence base by clarifying how women of reproductive age who have chronic kidney disease (CKD) make decisions about pregnancy, and how this relates to their health, well-being and pregnancy outcomes
Summary
An estimated 195 million women are affected by kidney disease worldwide. (‘2018 WKD Theme -World Kidney Day’, n.d.) Recent research increasingly highlights that many aspects of kidney disease have specific gender disparities (Bikbov et al, 2018; Goldberg & IIan, n.d.; Iseki, 2008; Nature Publishing Group, 2018; Piccoli et al, 2018). Decisions about pregnancy and the challenges pregnancy can bring while living with kidney disease is one such difference and unique to women. Clinical nurse specialists from nephrology, transplantation, gynaecology, obstetrics and midwifery work with multidisciplinary teams (MDTs) to provide care, information and support to women with kidney disease who are considering pregnancy. Recent research in developed countries has focussed on learning more about experiences of care and support from the women's perspectives and found among other things, an unhelpful focus on clinical perspectives of risk, and importantly a need for new shared decision-making interventions to support patients and professionals with the complex and often emotional decisions which need to be made about pregnancy while living with kidney disease (Jesudason & Tong, 2019; Tong et al, 2015)
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