Evidence map›Paper›PMID 38397277›Full record

ArticleChildren (Basel, Switzerland)2024

Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope.

Michael E Msall

Open access · goldAbstract read
In one paragraph

Article in Children (Basel, Switzerland), 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
1.1field-weighted citation impact, top 23% 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

1 citing paper in PubMed, 1 citations in OpenAlex.

  1. Review
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

1 author at 1 institution in 1 country.

Michael E MsallSection of Developmental Pediatrics, JP Kennedy Research Center on Intellectual and Neurodevelopmental Disabilities, Comer Children's Hospital, University of Chicago Medicine, 950 East 61st Street Suite 207, Chicago, IL 60637, USA.ORCID 0000-0003-2037-5769
Comer Children's Hospital · US

Funding

Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) UA6MC32492HRSA 9DMC49250
6 · The paper itself

Abstract

In 1969, my sister Christianne was born late preterm with a genetic disorder and given a very pessimistic prognosis. I will describe, from a family perspective, some lifecourse lessons about neurodiversity using the World Health Organization International Classification Model of Functioning (WHO-ICF). This model emphasizes that, in communicating about the complexity of outcomes of disability, attention must be paid to facilitators and barriers for optimizing health, functioning in daily life, and participation in the community. I will describe several developmental lifecourse lessons learned in negotiating fragmented systems of health, education, and community care. I will suggest ways to improve physician-parent communication, focusing on enablement to decrease a family's sense of isolation and despair. I have benefitted from my parents' archives, discussions with all my seven sisters (including Christianne), and discussions with my brother and sister-in law. They all have provided invaluable feedback from a family perspective during Christianne's lived lifecourse journey with neurodiversity.

Indexed as

adult outcomescounseling about developmental disabilityenablementfamily supportfunctioninghigh-risk infant follow-uplife course health developmentneurodiversityparticipationpreterm birth

Identifiers

PMID38397277
PMCPMC10887092
OpenAlexW4391263634

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.