Absorbing it all: A meta-ethnography of parents' unfolding experiences of newborn screening. (October 2021)

• Record Type: Journal Article
• Authors: White, Ashley L.; Boardman, Felicity; McNiven, Abigail; Locock, Louise; Hinton, Lisa
• Is Part Of: Social science & medicine. Volume 287(2021)
• Publication Date: 2021-10
• Subjects: Meta-ethnography -- Qualitative research -- Newborn screening; Social medicine -- Periodicals; Medical anthropology -- Periodicals; Public health -- Periodicals; Psychology -- Periodicals; Medicine -- Periodicals; Medicine -- Periodicals; Médecine sociale -- Périodiques; Anthropologie médicale -- Périodiques; Santé publique -- Périodiques; Psychologie -- Périodiques; Médecine -- Périodiques; Electronic journals; 362.105
• DOI: 10.1016/j.socscimed.2021.114367
• Languages: English
• ISSNs: 0277-9536

Abstract

Abstract: In a context of increasing international dialogue around the appropriate means and ends of newborn screening programmes, it is critical to explore the perspectives of those directly impacted by such screening. This meta-ethnography uses a systematic review process to identify qualitative studies that focus on parents' experiences of newborn screening published in English-language academic journals from 2000 to 2019 (n = 36). The included studies represent a range of moments, outcomes, and conditions that illuminate discrete elements of the newborn screening journey. We draw on these varied studies to construct a diagram of possible newborn screening pathways and through so-doing identify a critical window of time between the signalling of a positive newborn screen and the end of the screening process. During this critical window of time, families navigate complex emotional reactions, information, and decisions. From an in-depth analysis of this data, we develop the concept of "absorptive capacity" as a lens through which to understand parents' responses to new and emerging information. Alongside this, we identify how the "concertinaing of time" – the various ways that parents experience the expansion and compression of time throughout and beyond the screening pathway – affects their absorptive capacities. This study underscores the need to move away from viewing newborn screening as a discrete series of clinical events and instead understand it as a process that can have far-reaching implications across time, space, and family groups. Using this understanding of screening as a starting point, we make recommendations to facilitate communication and support for screened families, including the antenatal provision of information to parents and accommodations for the fluctuations in parents' absorptive capacities across the screening trajectory. Highlights: Parents may not realise the potential ramifications of newborn screening (NBS). There is a critical window of time between positive NBS results and further testing. "Absorptive capacity" can describe how parents comprehend screening information. NBS can have long-lasting implications across time, space and family groups.