Background Stillbirth, among the most distressing experiences an adult may face, is also a time when parents must decide whether an autopsy or other post-mortem examinations will be performed on their infant. Autopsies can reveal information that might help explain stillbirth, yet little is known about how people make this difficult decision.
Objectives. The study explores parents lived experience of having an infant with early onset group B streptococcus (GBS).Design. The study adopts a qualitative approach and a phenomenological framework with written autobiographical accounts as the method of data collection.Methods. Twenty-seven parents wrote first-hand accounts of their experience of having an infant with early onset GBS. Participants documented their experiences in their own way, reporting their thoughts and feelings, experiences, and events that were meaningful to them.Results. Four themes were developed from data analysis: 'bonding'; 'grief'; 'communication and information provision'; and 'future family'.Conclusions. The study findings demonstrate the complexity of emotions within parent's experiences and highlight grief and loss as a core component of these experiences. Medical intervention, while acknowledged as being vital and in many cases lifesaving, was viewed as a disruption to early bonding experiences resulting in sadness and guilt. Variation in information provision, communication about this infection, and feeling that their infant's illness and/or death were preventable added to the sense of loss. Breakdowns in interpersonal communications with partners and family were commonly described and experiences of early onset GBS had implications for decision-making around future pregnancies.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.