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1. Lived Experience of the Dyad and Their Relationships Following a Fetal Death: A Hermeneutic Phenomenological Study.

Author

McDonough, Mary Rose and Leone-Sheehan, Danielle

Subjects
*MEMORY, *GRIEF, *SOCIAL support, *RESEARCH methodology, *SOCIAL media, *MEDICAL personnel, *INTERVIEWING, *PERINATAL death, *SPOUSES, *PATIENTS' families, *EXPERIENCE, *PHENOMENOLOGY, *QUALITATIVE research, *INTERPERSONAL relations, *SOUND recordings
Abstract

Little is known about the lived experience of the dyad following a fetal death and the impact on relationships. The purpose of this paper is to explore the dyadic relationship between partners, with health care providers, and with the baby's memory after birth. This qualitative study utilized hermeneutic phenomenology. The sample included 10 heterosexual dyads from the United States and Canada. All experienced a fetal death between 6 months and 7 years prior to their interviews. The data revealed three themes: (a) The Dyad Relationship: Moving Through the Experience Together; (b) Keeping the Memory Alive: Memorializing the Baby; and (c) Relationships With Health Care Providers: A Spectrum of Caring. The findings from this study provide the beginning knowledge needed to improve the care of dyads who have experienced a fetal death and for future studies to improve care delivery for dyads as their relationships change after fetal death. [ABSTRACT FROM AUTHOR]

Published
2024
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2. Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome.

Author

Mussatto, Kathleen A., Van Rompay, Maria I., Trachtenberg, Felicia L., Pemberton, Victoria, Young-Borkowski, Lisa, Uzark, Karen, Hollenbeck-Pringle, Danielle, Dunbar-Masterson, Carolyn, Infinger, Patricia, Walter, Patricia, and Sawin, Kathleen

Subjects
PARENT attitudes, WELL-being, MOTHERS, ADAPTABILITY (Personality), STATE-Trait Anxiety Inventory, STATISTICS, PREDICTIVE tests, SOCIAL support, HYPOPLASTIC left heart syndrome, PARENTS of children with disabilities, SELF-evaluation, RESEARCH methodology, MULTIPLE regression analysis, FATHERS, BURDEN of care, RISK assessment, PSYCHOLOGICAL tests, T-test (Statistics), PSYCHOSOCIAL factors, QUALITY of life, QUESTIONNAIRES, DESCRIPTIVE statistics, REPEATED measures design, CHI-squared test, RESEARCH funding, FAMILY relations, PSYCHOLOGICAL adaptation, STATISTICAL sampling, DATA analysis software, STATISTICAL correlation, DATA analysis, PSYCHOLOGICAL stress, ALGORITHMS
Abstract

Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Individually tailored psychosocial support is needed. [ABSTRACT FROM AUTHOR]

Published
2021
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