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Parental Experience of Infant Loss in the Context of Congenital Heart Disease

Clarke-Myers, Katherine M
http://orcid.org/0000-0001-6544-6263
http://rave.ohiolink.edu/etdc/view?acc_num=ucin152240014938173

Abstract Details

2018, PhD, University of Cincinnati, Education, Criminal Justice, and Human Services: Educational Studies.
Congenital Heart Disease (CHD) is recognized as one of the most common causes of infant mortality in the first year of life, however, there is a lack of literature that specifically addresses experience of parents who are bereaved within this context. This gap inhibits the ability of those serving the CHD population to design systems that adequately support parents in instances of infant death. This qualitative study aimed to explore the phenomenon of parental experience of infant loss in the context of CHD through semi-structured interviews. Eight bereaved mothers participated in the study. Data were analyzed using Interpretive Phenomenological Analysis (IPA) and Relational-Cultural Theory (RCT) provided the conceptual lens through which findings were interpreted. IPA involved a rigorous process of coding text, developing case-specific thematic tables, and cross-case analysis. Three major themes were identified: Loss of an Assumptive World, Knowledge and Knowing, and Relational Context. Participants experienced emotional difficulty and a need to adjust their foundational expectations for life at two primary points – at the time of CHD diagnosis and at the time of infant loss. Information seeking, information sharing, information acquisition, and sense-making were all important aspects of participant experience. Understanding facts about their child’s healthcare was of critical importance to families, as was comprehending the content and implications of those facts. All parents indicated a desire to be informed and engaged by their child’s healthcare providers, but the exact level of transparency and involvement that they expected varied. Issues of knowledge and knowing were relevant throughout the journey, including the prenatal period, as they learned to navigate the hospital system, during circumstances of complications and unwanted outcomes, and in the post-loss time period. For many parent participants the need for information gathering extended well into the post-loss period. Interpersonal aspects were important to how the participants experienced the birth, life, and death of their child with CHD. Parents highlighted examples of both relational connection and relational disconnection, and showed that relational context in the healthcare setting was deeply intertwined with how they made sense of complex and difficult circumstances related to their child’s death. Relational connection with healthcare providers fostered empowerment, trust, healing, and support of the mother/child bond, while relational disconnection was a source of suffering. Relational connection with family and through social support networks was important, and the presence of older living children played a role in how some parents made decisions about the care for their child with CHD. Furthermore, connection and relationship with other bereaved parents was extremely important to the grief processing for many of the participants in the post-loss period. This study recounts in-depth detail and interpretation of the lived experiences of a sample of parents who experienced the death of their infant in the context of CHD. The information generated through this research contributes to the development of a nuanced and layered picture of experiences among bereaved parents in the CHD population, and can be used to improve systems of care that support parents in such circumstances.
Lisa Vaughn, Ph.D. (Committee Chair)
Vicki Plano Clark, Ph.D. (Committee Member)
Miriam Raider-Roth, Ed.D. (Committee Member)
146 p.
Social Research
Interpretive Phenomenological Analysis; Relational-Cultural Theory; Congenital Heart Disease; Parental Bereavement; Pediatric

Recommended Citations

Citations

  • Clarke-Myers, K. M. (2018). Parental Experience of Infant Loss in the Context of Congenital Heart Disease [Doctoral dissertation, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin152240014938173

    APA Style (7th edition)

  • Clarke-Myers, Katherine. Parental Experience of Infant Loss in the Context of Congenital Heart Disease. 2018. University of Cincinnati, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin152240014938173.

    MLA Style (8th edition)

  • Clarke-Myers, Katherine. "Parental Experience of Infant Loss in the Context of Congenital Heart Disease." Doctoral dissertation, University of Cincinnati, 2018. http://rave.ohiolink.edu/etdc/view?acc_num=ucin152240014938173

    Chicago Manual of Style (17th edition)

ucin152240014938173
325
© 2018, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.