Cardiac disease in pregnancy and the first year postpartum: a story of mental health, identity and connection.

BACKGROUND: Women with cardiac disease in pregnancy and the first year postpartum often face uncertainty about their condition and the trajectory of their recovery. Cardiac disease is a leading cause of serious maternal morbidity and mortality, and the prevalence is increasing. Affected women are at risk of worsening cardiac disease, chronic illness, mental illness and trauma. This compounded risk may lead to significant and long-term negative outcomes. The aim of this study is to correct the lack of visibility and information on the experiences of women with cardiac disease in pregnancy and the first year postpartum. METHODS: A qualitative study using in-depth semi-structured interviews with twenty-five women who had acquired, congenital or genetic cardiac disease during pregnancy or the first year postpartum. Data were analysed and interpreted using a thematic analysis framework. RESULTS: Analysis of the interviews produced three major themes: 1) Ground zero: index events and their emotional and psychological impact, 2) Self-perception, identity and worthiness, and 3) On the road alone; isolation and connection. There was a narrative consistency across the interviews despite the women being diverse in age, cardiac diagnosis and cardiac health status, parity and timing of diagnosis. The thread prevailing over the temporal and clinical differences was one of distress, biographical disruption, identity, isolation, a necessitated re-imagining of their lives, and the process of multi-layered healing. CONCLUSION: Acknowledging and understanding the breadth, complexity and depth of women's experiences is fundamental to improving outcomes. Our findings provide unique insights into women's experiences and challenges across a spectrum of diseases. Most women did not report an isolated trauma or distressing event, rather there was a layering and persistence of psychological distress necessitating enhanced assessment, management and continuity of care beyond the routine 6-week postpartum check. Further research is required to understand long-term outcomes and to refine the findings for specific disease cohorts to be able to respond effectively.

Quality of life and mental health of women who had cardiac disease in pregnancy and postpartum.

PURPOSE: Cardiac disease is a leading cause of maternal morbidity and mortality yet there is limited research on women's experiences and quality of life (QoL) outcomes. The aim of this study is to explore the general and health-related QoL (HRQoL) and mental health outcomes for women who have experienced cardiac disease in pregnancy and the first 12 months postpartum (CDPP). METHODS: This exploratory descriptive study recruited 43 women with acquired, genetic and congenital CDPP. Patient reported outcomes measures (PROMs) used were: WHOQoL-Bref, a Kansas City Cardiac Questionnaire (KCCQ), the Depression, Anxiety and Stress Scales-21 (DASS-21), the Cardiac Anxiety Questionnaire (CAQ) plus newly developed questions. RESULTS: Women reported low health satisfaction (51.7/100), physical health (55.2/100) and low HRQoL (63.1/100). Women had clinically significant scores for depression (24%), anxiety (22%) and stress (19.5%) (DASS-21) and 44.5% scored at least moderate anxiety on the CAQ. Most women (83.7%) were advised to avoid pregnancy which 88.9% found "upsetting" to "devastating"; 10.0% were offered counselling. Most women were concerned about reduced longevity (88.1%), offspring developing a cardiac condition (73.8%), and the limitations on enjoyment of life (57.1%). Women missed medical appointments due to cost (25.03%) and difficulty arranging childcare (45.5%). CONCLUSION: The majority of women reported inadequate information and counselling support, with women with CDPP having sustained impaired QoL and mental health outcomes. The new and modified questions relating to mothering and children reflected the primacy of mothering to women's identity and needs.

The healthcare experiences of women with cardiac disease in pregnancy and postpartum: A qualitative study.

INTRODUCTION: Cardiac disease affects an estimated 1%-4% of all pregnancies and is a leading cause of maternal morbidity and mortality. There is a lack of data on the healthcare experiences of affected women to inform health service delivery and person-centred care. This study sought to explore and understand the healthcare experiences of women with cardiac disease in pregnancy and postpartum. METHODS: This qualitative study used semi-structured interviews with women who had cardiac disease in pregnancy or the first 12 months postpartum. Data were analysed using thematic analysis. RESULTS: Participants were 25 women with pre-existing or newly diagnosed acquired, genetic and congenital cardiac disease. Analysis of the interviews highlighted the discrepancy between care aspirations and experiences. The participants had a wide range of cardiac diseases and timing of diagnoses, but had similar healthcare experiences of being dismissed, not receiving the information they required, lack of continuity of care and clinical guidelines and of feeling out of place within a healthcare system that did not accommodate their combined needs as a mother and a cardiac patient. CONCLUSION: This study identified a lack of person-centred care and responsiveness of the healthcare system in providing fit-for-purpose healthcare for women with complex disease who are pregnant or new mothers. In particular, cardiac and maternity care providers have an opportunity to listen to women who are the experts on their emergent healthcare needs, contributing to development of the knowledge base on the healthcare experiences of having cardiac disease in pregnancy and postpartum. PATIENT OR PUBLIC CONTRIBUTION: Public and patient input into the value and design of the study was gained through NSW Heart Foundation forums, including the Heart Foundation's women's patient group.

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

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.