Absorbing it all

A meta-ethnography of parents' unfolding experiences of newborn screening

Dados Bibliográficos

ID4589646
AutoresAshley L White (0000-0003-4519-2280), Felicity Boardman (0000-0002-3268-6276), Abi Mcniven (0000-0001-5041-2095), Abigail Mcniven, Louise Locock (0000-0002-8109-1930), Lisa Hinton (0000-0002-6082-3151)
Ano2021
Volume287
Páginas114367
Data de publicação2021-10-01
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoSocial Science & Medicine (JOURNAL)
Identificadores do periódicoISSN: 0277-9536 • E-ISSN: 1873-5347
EditoraElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2021.114367
PMID34534781
OpenAlexW3197727930
IdiomaEN
Citações recebidas4
Referências citadas54

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

Ethnography · Meta-analysis · Sociology · Anthropology · Children's Rights and Participation · Cleft Lip and Palate Research · Ethics and Legal Issues in Pediatric Healthcare · Medicine · Internal Medicine