Interventions for and experiences of shared decision-making underpinning reproductive health, family planning options and pregnancy for women with or at high risk of kidney disease: a systematic review and qualitative framework synthesis

Abstract

ObjectiveTo determine intervention effects and synthesise qualitative research that explored women with or at high risk of kidney disease experiences of shared decision-making in relation to their reproductive health, family planning options and pregnancy.DesignA systematic review of interventions and a qualitative evidence synthesis.Data sourcesWe searched Cochrane, CINAHL, MEDLINE, Scopus, ProQuest, Elsevier, PubMed, ScienceDirect and Web of Science.Eligibility criteriaShared decision-making interventions and qualitative studies related to reproductive health involving women with or at high risk of kidney disease published from 1980 until January 2021 in English (clinical settings, global perspective).Data extraction and synthesisTitles were screened against the inclusion criteria and full-text articles were reviewed by the whole team. Framework synthesis was undertaken.ResultsWe screened 1898 studies. No evidence-based interventions were identified. 18 qualitative studies were included, 11 kidney disease-specific studies and 7 where kidney disease was a common comorbidity. Women frequently felt unprepared and uninformed about their reproductive options. Conversations with healthcare professionals were commonly described as frustrating and unhelpful, often due to a perceived loss of autonomy and a mismatch in preferences and life goals. Examples of shared decision-making were rare. Kidney disease exacerbated societal expectations of traditional gender roles (eg, wife, mother, carer) including capability to have children and associated factors, for example, parenting, (sexual) relationships, body image and independent living (including financial barriers to starting a family). Local interventions were limited to types of counselling. A new health system model was developed to support new interventions.ConclusionThere is a clear need to establish new interventions, test those already in development and develop new clinical guidance for the management of women with or at high risk of kidney disease in relation to their reproductive health, including options to preserve fertility earlier. Other health conditions with established personalised reproductive care packages, for example, cancer, could be used to benchmark kidney practice alongside the new model developed here.

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

“…Their unique experiences living with CKD are not well understood and evidence-based interventions to support these women across complex decisional and care pathways including planning for children, pregnancy and motherhood remain critically lacking (Mc Laughlin et al, 2022).…”

“…To address some of these gaps, an updated qualitative evidence synthesis was undertaken that reported little change in the management of women's reproductive health in 20 years, no evidence-based interventions and large gaps concerning the expectations, goals, values and experiences of women with kidney disease who may (or may not) want to start a family. A new health systems model based on other health conditions with established personalized reproductive care packages, for example, cancer was developed (Mc Laughlin et al, 2022).…”

“…A mixed-methods convergent design was used to collect data from women of reproductive age in the UK with CKD, learn more about their personal experiences of pregnancy, decision making and care and support. Data were subsequently integrated to further refine a health systems model based on established personalized reproductive care packages in other health conditions, developed in a preceding qualitative evidence synthesis (Mc Laughlin et al, 2022).…”

“…In the UK, women with CKD are looked after by multi‐disciplinary healthcare professionals including specialist nurses and advanced care practitioners (Shi et al, 2018). Their unique experiences living with CKD are not well understood and evidence‐based interventions to support these women across complex decisional and care pathways including planning for children, pregnancy and motherhood remain critically lacking (Mc Laughlin et al, 2022).…”