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

Abstract 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.


| INTRODUCTION
Cardiac disease in pregnancy and postpartum (CDPP), pre-existing or newly diagnosed cardiac disease in pregnancy or in the first 12 months postpartum, is associated with significant serious maternal morbidity and mortality. 1,2 CDPP includes a variety of structural heart and aortic diseases, cardiomyopathies, rhythm disorders, ischaemic heart disease and arterial dissections.
CDPP is under-researched in Australia and internationally.
Prevalence estimates range from 1% to 4%, with evidence of increasing prevalence due to delayed childbearing in middle-and high-income countries, growing rates of cardio-metabolic risk factors 3 and increasing numbers of congenital heart disease survivors having children. 4 Cardiovascular disease has been a leading medical cause of maternal death in Australia for the past five decades, responsible for 14.36% of all maternal deaths between 2009 and 2018. 5 There is significant burden from maternal morbidity, with about one in four women with cardiac disease during pregnancy requiring hospitalization. 6 As maternal mortality reduces, morbidity is increasing, and yet, current maternal morbidity monitoring is affected by inconsistent definitions and criteria, language and monitoring practices. 7 The morbidity experienced by women encompasses physical, psychosocial, emotional and functional domains. It is necessary to establish evidence-based information on cardiac presentations, cardiac-related complications and women's experiences.
There is a lack of comprehensive data on the impact that a diagnosis of CDPP has on quality of life, psychosocial and emotional well-being and the healthcare experiences of women during pregnancy and postpartum. A recent meta-synthesis confirmed the paucity of research on the healthcare experiences of women with CDPP and highlighted the need for greater engagement with women and the development of models of care that are responsive to women's needs, knowledge and desired outcomes. 8 Person-centred care (PCC) is promoted as a model for improved patient outcomes and clinician satisfaction and is based upon the healthcare experiences and needs of patients. 9 PCC protects a person's dignity, is respectful of, and responsive to, the preferences, needs and values of the individual, and is founded on mutual trust and understanding between the care-giver and the recipient. 9,10 This study explores the healthcare experiences of women who had CDPP or the first 12 months postpartum in Australia, contributing to the knowledge base for developing guidelines and continuity of care frameworks, resources and PCC, thereby improving women's healthcare experiences and outcomes.

| Study design
A qualitative study was designed to examine women's experiences of CDPP, privilege women's voices, increase knowledge and improve clinical care and quality of life. Qualitative research focuses on the way people make sense of, and the meanings they ascribe to, their experiences and the world in which they live. 11 A phenomenological perspective is adopted as is fitting for areas with little existing knowledge, and focuses on the commonality of subjective, lived experiences of a phenomenon within a particular group. 12 The concept of the study was discussed with clinical and community groups from the NSW Heart Foundation. Ethics approval was granted by the University of Technology Sydney's Human Research Ethics Committee (ETH19-3372).

| Participants and procedure
Criterion-based purposive sampling was used to engage women who had a diagnosis of CDPP and were willing to participate in an in-depth interview. 13 Eligibility criteria specified mothers who have been diagnosed with cardiac disease before, during pregnancy or up to 1 year postpartum, living in Australia and who give birth to one or multiple babies beyond 20 weeks, gestation or 400 gm or greater birthweight. Women had to have adequate English fluency to participate in the interview.
The population we sought to interview was both ill-defined and hard to reach due to a lack of prevalence data, and involved rare and uncommon conditions, limited registries and disease-based support groups and, to our knowledge, no support groups specifically for CDPP. 14 Online recruitment has been shown to be effective for recruitment for hard-to-reach groups 15 ; therefore, we posted recruitment notices on the Facebook pages and groups of consenting cardiac groups and organizations, as well as via invitations distributed by cardiac support groups to members' emails and or group newsletters. Thirty-three women responded, of whom 25 women fulfilled the inclusion criteria and agreed to proceed with an interview. Recruitment continued until we had adequate depth and breadth of data to sufficiently describe and analyse the participants' experiences and answer our research question. 16 Most women lived in metropolitan areas, and of the four who lived in regional or rural areas, two transferred to metropolitan hospitals for care during their pregnancy or postpartum event.

| Data collection
Semi-structured interviews were used because they are an established qualitative approach when exploring topics about which little is known, focus on the issues that are meaningful for the participant and allow for diverse perceptions to be expressed. 17

| Analysis
Inductive reflexive thematic analysis was used as it is flexible and responsive when unexplored phenomena are described; allowed for nuanced theme development; facilitated the coding and organization of a large and complex data set; and it is able to highlight similarities and differences across the data set. 18 developing and refining codes and themes and selecting illustrative quotations. The approach to analysis was essentialist/realist (reporting on the experience, meanings and reality of participants), with semantic themes (reflecting the explicit content of the data). 20

| Study quality and research team
Each member of the team is a female healthcare professional (HCP) with diverse sexual and reproductive health and public health experiences. Our shared view is that PCC is ethically imperative and requisite for quality healthcare; thus, we approached this study believing that understanding and responding to patient experiences are important in ensuring positive outcomes for women, and we acknowledge that analysis in part reflects the authors' subjective interpretation.
Quality was determined using the guidelines provided by Braun and Clarke. 18 In particular, the researchers engaged in ongoing discussion, reflection and development of the codes and themes, exploring individual and shared perspectives on the patterns within and across the women's stories.

| RESULTS
The The women felt unheard when pursuing an initial cardiac diagnosis and when they were experiencing new or ongoing symptoms for an existing diagnosis. Reports of subjective symptoms (e.g., shortness of breath and chest pain) and objective signs (e.g., electrocardiogram (ECG) changes and elevated troponins) were misattributed to other causes, often without adequate or any investigation. One woman presented with 'a racing heart and cold sweat, aching arm, tight chest pain', and had three positive troponins that the emergency department (ED) doctor concluded were false positives because she was a young female and 'didn't fit a cardiac profile' (P10).
Women's symptoms were most commonly attributed to as having anxiety, regardless of whether this was shown or expressed by the woman. Further, when women were told that they had anxiety, no referral or intervention was suggested to support the women.
'Do you feel anxious? You might be having an anxiety attack' and I was saying to them, 'No… It's not an anxiety The experience of feeling dismissed was iterative. One woman first presented to her general practitioner (GP) in late pregnancy and subsequently had multiple presentations over the following 8 months to both her GP and the ED with chest and jaw pain and 'an odd heart rhythm', where 'they didn't even examine' her before she was diagnosed with a myocardial infarction and multiple pregnancyassociated spontaneous coronary artery dissection and had emergency bypass surgery (P6). was overweight and drank diet cola, and she was advised to lose weight. After 2 years of ongoing symptoms and multiple presentations to her GP, and once she had lost weight, her GP investigated, leading to a diagnosis of hypertrophic cardiomyopathy (P8).
A key consequence of women not being heard was delayed diagnoses and the associated preventable morbidity and emotional distress. The women were aware of the dangers inherent in not being heard and taken seriously and they felt 'angry' and 'disappointed' that they were 'dismissed' and 'fobbed off'.
To be honest, the way I was going, I think I could have The women expressed frustration and concern at the lack of information and resources shared with them; they recognized that this was in part due to a lack of research but also felt that this was not the sole issue. Some felt that there was a perceived convention of withholding and gatekeeping information, 'Some of the doctors are like, "I don't think she needs to see this"' (P7). Other times, information was oversimplified or, alternatively, medical terminology was used and not explained. There was also concern regarding general knowledge, clinical assessment and reasoning skills, including being able to perform common assessments such as ECGs.

| Fragments: Care co-ordination and continuity
Women with CDPP were managed by HCPs from a range of disciplines and specialities. Intra-and interdiscipline co-ordination was seen as inconsistent and was mostly experienced as lacking by the women, and this led to mixed messages, compromised communica- For some women, the experience lessened their confidence as they were excluded due to being symptomatic, even though having ongoing symptoms was their 'norm'.
I did the cardiac rehab, which I was kicked out of, The limited written or digital material available was perceived as irrelevant by most of the women, and '…the only real support services related to the heart are for people with [atherosclerosis]' (P13). The lack of resources was especially felt in the absence of a pregnancy and mothering framing, and availability of age-and disease-specific support groups.
Where does a 25-year-old pregnant woman go who's been diagnosed with a heart condition? There's no real support network for that. (P22) The above analysis captures the most compelling and consistent themes generated from the data; however, it is important to note that this is not the totality of experiences. When women felt heard, it made a profound difference: 'You two have been like the first doctors I've really trusted because you've actually listened' (P1). Some women had supportive, informative and respectful interactions where they did not '… feel like I'm going to be belittled by asking' (P7). Finally, an example of coordinated care was a GP sharing woman's hospital discharge summary with the other GPs in the practice so that everyone was aware of her history and how to manage her care if her treating GP was absent.

| DISCUSSION
This study explored the healthcare experiences of women with CDPP and found that their healthcare expectations and needs were not being fully met. The majority of women in our study described a spectrum of largely negative healthcare experiences across multiple presenting cardiac conditions.

| Feeling dismissed
The patient experience of being 'dismissed' has been documented in areas of health relevant to women with CDPP including reproductive health, cardiac disease and rare or medically unclear diagnoses. [21][22][23] Women in our study felt dismissed when presenting at their GP and the ED as well as during pregnancy and during labour, increasing the risk of missed or incorrect diagnoses, morbidity and potentially death.
All women experienced delays in diagnosis, and or responding to deterioration in pre-existing cardiac disease, similar to previous findings of it taking 3-190 days for women with peripartum cardiomyopathy (PPCM) to be diagnosed. 24 In our study, feeling dismissed affected the women's perceptions of HCPs and, in some cases, reduced trust and decreased the likelihood of compliance with treatment or follow-up. Our study is consistent with earlier work that found that nearly 40% of women with PPCM experienced symptom dismissal by HCPs and 25% were initially given inaccurate diagnoses, including 'new mum anxiety'. 25 Analysis of posts on a PPCM online support group similarly reported that women were 'brushed off, dismissed and ignored', and incorrectly diagnosed, including with anxiety. Women in our study variously felt that they were viewed as 'all baby' or 'all heart'. but never as a whole person or mother. They described that their needs both within and beyond the hospital setting were not recognized or responded to. They felt that they were seen as a diagnosis and not a person, and did not feel included in decision-making.

| LIMITATIONS AND STRENGTHS
This study may be subject to both positive and negative recall bias.
The generalizability of our findings is limited to English-speaking patients, with no representation of Australian First Nations women or minority ethnicities. More studies are needed to understand the specific needs of women with CDPP, including the needs of diverse populations and needs over time.
A strength of this study is that this is the first study to explore women's healthcare experiences across a spectrum of CDPP. This knowledge contributes valuable information to a small body of HUTCHENS ET AL.
| 1879 knowledge on women's experiences and values relating to CDPP. The interviews allowed women to be authentic and share what was of most importance to them. There was an intensity and density of themes, especially regarding being dismissed, lack of clinician and patient knowledge and the need for PCC.

| CONCLUSION
Studies on women's healthcare experiences are essential to build patient agency, healthcare knowledge and inform care. This study identified a lack of PCC for women with CDPP. Of concern is that this equally applies across pre-existing and de novo diagnoses, reflecting a lack of responsiveness of the healthcare system to providing fit-forpurpose healthcare for women with complex chronic disease who are pregnant or new mothers. This study identified a number of areas in which women wanted system improvement, including treating women with respect by listening to them, multidisciplinary care planning and co-ordination, increased clinician knowledge and competence and investment in clinical guidelines, research and patient support. There is an opportunity for cardiac and maternity care providers to listen to women about their healthcare needs and build upon their experiences to enhance care for women with CDPP.