Stories of transition: Parents recall the diagnosis of congenital heart defect.

Abstract

This study reports the recollected stories of eight parents regarding their experiences of having an infant diagnosed with a congenital heart defect. The qualitative research design incorporated interactive interviews and thematic data analysis, using grounded theory techniques. The results describe various aspects of the parents' transitional experience: something wrong, illusive normality, rude awakening, managing uncertainty, new meanings, and taking stock. Implications are drawn for family practitioners as facilitators of this complex transition.

Parents’ perceptions during the transition to home for their child with a congenital heart defect: How can we support families of children with hypoplastic left heart syndrome?

“…Meleis et al (2000) describe the types of transitions, properties of a transition, transition conditions, and the nursing therapeutics including patient-specific needs in the transition from hospital to home. In this review, the transition to home care for parents with a child born with a CHD was considered an illness experience and a developmental/lifespan transition including the transition back into the community, which was discovered to be a paradoxical transition with the loss of expectation of a "normal, healthy baby" and the diagnosis of a CHD (Messias, Gilliss, Sparacino, Tong, & Foote, 1995).…”

Parenting an Infant with a Congenital Anomaly: How are Perceived Burden and Perceived Personal Benefits Related to Parenting Stress?

“…In addition to the usual caretaking tasks, parents must address the disrupted expectations of having a healthy baby (Aite et al, 2003) and the challenges of care, e.g. : increased medical demands, such as surgeries, hospitalizations, and medical monitoring; uncertainty about the future; and parent-child interaction difficulties; (Laing et al, 2010;Mazer et al, 2008;Messias, Gilliss, Sparacino, Tong, & Foote, 1995;Montirosso et al, 2012). Therefore, the first months after the birth of an infant with a CA are particularly challenging and require individual and familial reorganizations to cope with the caregiving demands (Messias et al, 1995).…”

Parental Reactions to Perinatal Congenitalanomaly Diagnosis of the Baby: Implications for the Intervention of Health Professionals

“…Por um lado, a perda do bebé esperado -perfeito e saudável -e, por outro, o nascimento de um bebé com características e exigências distintas, que pode ser percepcionado como ameaçador (e.g. Messias, Gillis, Sparacino, Tong, & Foote, 1995). Diversas investigações têm sido realizadas, com o objectivo de caracterizar a reacção parental ao diagnóstico de anomalia congénita no bebé, quando este é conhecido no período pós-natal.…”