Evidence map›Paper›PMID 34534781›Full record

SynthesisSocial science & medicine (1982)2021

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

Ashley L White, Felicity Boardman, Abigail McNiven, Louise Locock, Lisa Hinton

Open access · hybridAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Social science & medicine (1982), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
19citing papers in PubMed, 1 pooled it
3.1field-weighted citation impact, top 8% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

19 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 4 institutions in 1 country.

Ashley L WhiteNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK. Electronic address: ashley.white@phc.ox.ac.uk.
Felicity BoardmanWarwick Medical School, University of Warwick, Coventry, UK.
Abigail McNivenNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Louise LocockHealth Services Research Unit, University of Aberdeen, Aberdeen, UK.
Lisa HintonThe Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UK.
University of Oxford · GBUniversity of Aberdeen · GBUniversity of Cambridge · GBUniversity of Warwick · GB

Funding

Chief Scientist Office HSRU2Department of Health NIHR127489Wellcome Trust 203384/Z/16/Z
6 · The paper itself

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.

Indexed as

Neonatal ScreeningParentsAnthropology, CulturalCommunicationFemaleHumansInfant, NewbornPregnancyQualitative ResearchMeta-ethnographyNewborn screeningQualitative research

Identifiers

PMID34534781
PMCPMC8505793
OpenAlexW3197727930

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.