Defining the experiences and needs of Australian women with cardiac disease in pregnancy and the first year postpartum: a mixed methods study

Publication Type:
Thesis
Issue Date:
2022
Full metadata record
𝗕𝗮𝗰𝗸𝗴𝗿𝗼𝘂𝗻𝗱 Cardiac disease in pregnancy and the first year postpartum (CDPP) is a leading cause of maternal mortality. CDPP is associated with significant serious maternal morbidity encompassing physical, psychosocial, emotional and functional wellbeing. 𝗔𝗶𝗺𝘀 To give voice to women who had CDPP, to characterise and enhance the understanding of women’s experiences and the impact on their quality of life, mental health and mothering, and to describe their needs to identify opportunities to improve women’s outcomes. 𝗠𝗲𝘁𝗵𝗼𝗱𝘀 This thesis uses a three-phase exploratory sequential mixed methods research design. Study 1 involved in-depth semi-structured interviews to provide the foundation and establish central themes. Study 2 was an online survey that expanded upon Study 1 findings on the impact of CDPP on women’s quality of life, mental health, and experiences of mothering, and the needs of women with CDPP. Study 3 explores the needs of women with CDPP via focus groups. 𝗥𝗲𝘀𝘂𝗹𝘁𝘀 Women’s healthcare experiences did not meet their expectations or needs and were characterised by a lack of person-centred care, and women feeling dismissed and powerless. Self-advocating was difficult and often unsuccessful, which had negative cardiac and psychological outcomes. There was a lack of co-ordinated care, continuity of care and a lack of responsiveness of the healthcare system to provide fit for purpose health care for women with complex disease who are pregnant or new mothers. Women experienced anxiety, depression and post-traumatic stress subsequent to their CDPP, with DASS-21 results indicating a higher prevalence of mental health conditions when compared with Australian norms. Quality of life measured by the WHOQoL-Bref was lower than Australian norms in domains such as health satisfaction, physical health, psychological health, and social relationships. Mothering experiences with CDPP were characterised by a lack of healthcare professional recognition of the centrality of mothering to women’s lives, the importance of future pregnancies and breastfeeding, disrupted connection with their infant, and being restricted in what they could do. The results of the needs assessment and focus groups provided strong patient support for a structured peer support program, incorporation of counselling referrals into routine care and equity of access to a cardiac link nurse. 𝗖𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻 Women with CDPP have complex experiences that impact their mental health, quality of life and experiences of mothering that continued well beyond pregnancy and the first year postpartum. Health care did not meet their needs or expectations. This research has produced multiple implications and recommendations for stakeholders.
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