Engaging and supporting women with chronic kidney disease with pre‐conception decision‐making (including their experiences during COVID 19): A mixed‐methods study protocol

Abstract

Aim 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. Design Mixed‐method design using online surveys (with validated components) and purposively sampled follow‐up semi structured interviews. Methods 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. Discussion 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. Impact 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.

“It was classed as a nonemergency”: Women's experiences of kidney disease and preconception decision‐making, family planning, and parenting in the United Kingdom during COVID‐19

“…In January 2020, we received funding for a UK-wide study on women with CKD and their reproductive health and began recruitment on September 1, 2020. 19,20…”

“…We aimed to collect 500 surveys in order to complete a regression analysis and have a suitable number of participants to purposively sample for interview. 19 We offered survey respondents a potential follow-up interview. We included COVID-19 specific content in our interview guide (see Box 2).…”

“…The GP posted in their Facebook page to only call in case of an emergency." Whereas others felt, they received excellent care throughout their pregnancy as another women (age[18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35] with polycystic kidney disease wrote: "Very good support from health providers pre-pregnancy, including genetic counseling." Some new(er) mothers developed fears of their children catching or dying from COVID-19 and lacked the initial perspective and means to seek additional counseling or support.…”

Feminizing care pathways: Mixed‐methods study of reproductive options, decision making, pregnancy, post‐natal care and parenting amongst women with kidney disease

“…Full details of all data collection tools including the complete survey questions, topic guides and pathways to recruitment are available in the published protocol (Phillips et al, 2021). In the following sections, we report a summary of the methods used.…”

“…Wales REC 1 committee 20/WA/0157. A more detailed account of ethical considerations is in the published protocol (Phillips et al, 2021).…”