Is self-advocacy universally achievable for patients? The experiences of Australian women with cardiac disease in pregnancy and postpartum

Abstract

Purpose Patient self-advocacy is valued and promoted; however, it may not be readily accessible to all. This analysis examines the experiences of women in Australia who had cardiac disease in pregnancy or the first year postpartum through the lenses of self-advocacy and gender, specifically seeking to elaborate on the contexts, impacts, barriers, and women’s responses to the barriers to self-advocacy. Method A qualitative study design was used. Twenty-five women participated in semi-structured in-depth interviews. Data were analysed using thematic analysis. Results Analysis of findings generated the following themes: 1) Silent dream scream, 2) Easier said than done, 3) Crazy-making, and 4) Concentric circles of advocacy. Regardless of women’s personal attributes, knowledge and experience, self-advocating for their health was complex and difficult and had negative cardiac and psychological outcomes. Conclusion While the women encountered significant barriers to self-advocating, they were resilient and ultimately developed strategies to be heard and to advocate on their own behalf and that of other women. Findings can be used to identify ways to support women to self-advocate and to provide adequately resourced and culturally safe environments to enable healthcare professionals to provide person-centred care.