Experience With Advance Care Planning Discussions Among Pregnant Women With Congenital Heart Disease

Steiner, Jill M.; West, Kathleen M.; Bayley, Elizabeth W.; Pechán, J; Albright, Catherine M.; Buber, Jonathan; Engelberg, Ruth A.

doi:10.1016/j.jpainsymman.2021.02.002

Cited by 5 publications

(8 citation statements)

References 22 publications

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“…This is similar to past research findings that suggest that women with CHD desire information about childbearing and the associated risks. 17,31 Women who felt the childbearing risk was too high devised a "backup plan," such as surrogacy. Like previous CHD researchers, the findings of this study support the notion that health providers should initiate childbearing discussions early and often.…”

Section: Discussionmentioning

confidence: 99%

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We Have to Really Decide

Osteen,

Tucker,

Meraz

2023

J Cardiovasc Nurs

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Background Medical management and surgical improvement techniques permit persons with congenital heart conditions to live longer. Adults with congenital heart disease (CHD) have more childbearing options than previously available to them. However, there is an increased childbearing risk associated with certain types of CHD. Minimal investigation has been given to the childbearing decision-making experiences and adaptation of women with CHD. Objective The aim of this study was to gain insight into the childbearing decision-making and adaptation experiences of women with CHD. Methods Using a narrative inquiry approach, 17 adult women with CHD of any severity, of childbearing age, who had, within the last 5 years, made a decision regarding childbearing, were interviewed. In this study, we applied the key components of the Roy Adaptation Model to understand childbearing decision-making experiences and their adaptation. Data were analyzed using thematic analysis. Results Data analysis revealed 5 stages of childbearing decision making: (1) prologue: stimulus to consider childbearing; (2) exploring childbearing options; (3) considering childbearing options; (4) choosing to bear or not to bear a child; and (5) epilogue: adapting to the childbearing decision. Adaptation occurred in the areas of self-concept (ie, emotional adaptation), role function (ie, relational adaptation), and interdependence (ie, interactional adaptation). Conclusion Childbearing decision making is a complex personal decision that is carefully and deliberately made. Women with CHD long for children and seek childbearing information from various resources and may experience grief regarding the inability to bear children. A greater understanding of childbearing decision making can be useful in addressing women's childbearing emotions and assist with adaptation to childbearing needs.

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Section: Discussionmentioning

confidence: 99%

“…Health providers have an opportunity to provide unbiased expert clinical information to empower women with CHD with the knowledge to make well-informed decisions. 13,31,35 Frequent, open, honest conversations between health providers and women with CHD are important to facilitate thoughtful childbearing decisions.…”

Section: Implications For Practice and Researchmentioning

confidence: 99%

We Have to Really Decide

Osteen,

Tucker,

Meraz

2023

J Cardiovasc Nurs

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“…ACP should be considered as part of preconception counselling for patients with complex medical conditions, as part of the multidisciplinary care recommended by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. 4 The importance of ACP in the context of pregnancy was highlighted by a 2021 qualitative study, 5 which identified an important role for ACP during pregnancy but noted several challenges for implementation. 5 Although the legal framework in Australia is not necessarily a barrier to facilitating ACP during pregnancy, such a practice is far from routine.…”

Section: The Importance Of Acp During Pregnancymentioning

confidence: 99%

“…4 The importance of ACP in the context of pregnancy was highlighted by a 2021 qualitative study, 5 which identified an important role for ACP during pregnancy but noted several challenges for implementation. 5 Although the legal framework in Australia is not necessarily a barrier to facilitating ACP during pregnancy, such a practice is far from routine. Our hypothetical clinical vignettes (Box 1), and the discussion that follows, highlight difficulties that arise when pregnant patients lose decision-making capacity and explore how ACP may have mitigated some of these challenges.…”

Section: The Importance Of Acp During Pregnancymentioning

confidence: 99%

“…The importance of ACP in the context of pregnancy was highlighted by a 2021 qualitative study, 5 which identified an important role for ACP during pregnancy but noted several challenges for implementation 5 . Although the legal framework in Australia is not necessarily a barrier to facilitating ACP during pregnancy, such a practice is far from routine.…”

Section: The Importance Of Acp During Pregnancymentioning

confidence: 99%

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