Identities of women who have an autoimmune rheumatic disease (ARD) during pregnancy planning, pregnancy and early parenting: A qualitative study

Abstract

Objective: Women of reproductive age who have autoimmune rheumatic diseases (ARDs) have expressed a need to be better supported with making decisions about pregnancy. Women with ARDs want their motherhood identities and associated preferences to be taken into account in decisions about their healthcare. The aim of this study was to explore the interplay between illness and motherhood identities of women with ARDs during preconception decision making. Methods: Timeline-facilitated qualitative interviews with women diagnosed with an ARD (18-49 years old). Participants were purposively sampled based on the following three criteria: thinking about getting pregnant, currently pregnant, or had young children. Interviews were thematically analysed. Results: Twenty-two women were interviewed face-to-face (N=6) or over the telephone (N=16). Interview length ranged from 20 minutes to 70 minutes, with a mean length of 48 minutes. Three main themes were identified: prioritisation, discrepancy, and trade-off. Difficulties in balancing multiple identities in healthcare encounters were reported. Women used ‘self-guides’ as a reference for priority setting in a dynamic process that shifted as their level of disease activity altered and as their motherhood identity became more or less of a focus at a given point in time. Women’s illness and motherhood identities did not present in isolation but were intertwined. Conclusions: Findings highlight the need for holistic person-centred care that supports women with the complex and emotive decisions relating to preconception decision-making. In practice, health professionals need to consider women’s multiple and sometimes conflicting identities, and include both their condition and family associated goals and values within healthcare communication.