Evidence map›Paper›PMID 41525769›Full record

ArticleJournal of applied research in intellectual disabilities : JARID2026

What Motivates Parents of Young Children With Down Syndrome to Participate in Research: A Focus Group Analysis.

Benedetta Ceci, Madison M Walsh, Sara Colaianni, Miranda E Pinks, Sara Onnivello, Kaylyn Van Deusen, Francesca Pulina, Chiara Marcolin, Bethany A Gray, Elisa Rossi and 5 more

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In one paragraph

Article in Journal of applied research in intellectual disabilities : JARID, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
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

3 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
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

15 authors.

Benedetta CeciDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Madison M WalshDepartment of Human Development & Family Studies, Colorado State University, Fort Collins, Colorado, USA.
Sara ColaianniDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.ORCID https://orcid.org/0009-0008-3624-1304
Miranda E PinksDepartment of Human Development & Family Studies, Colorado State University, Fort Collins, Colorado, USA.
Sara OnnivelloDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.ORCID https://orcid.org/0000-0002-6565-7500
Kaylyn Van DeusenDepartment of Human Development & Family Studies, Colorado State University, Fort Collins, Colorado, USA.ORCID https://orcid.org/0009-0008-2166-6166
Francesca PulinaDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Chiara MarcolinDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Bethany A GrayDepartment Clinical Psychology, Colorado State University, Fort Collins, Colorado, USA.ORCID https://orcid.org/0000-0002-1606-6157
Elisa RossiDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Erika LupatiDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Margherita PietrobonDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Alessandra TomèDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.
Deborah J FidlerDepartment of Human Development & Family Studies, Colorado State University, Fort Collins, Colorado, USA.ORCID https://orcid.org/0000-0001-6208-456X
Silvia LanfranchiDepartment of Developmental Psychology and Socialization, University of Padova, Padua, Italy.ORCID https://orcid.org/0000-0003-2470-6019

Funding

Autism in Young Children with Down SyndromeR01HD110542 · NICHD · COLORADO STATE UNIVERSITY · PI Nicole Baumer, Somer L. Bishop · 2023 to 2026
$5.7M
Risk for Severe/Profound Intellectual Disability in Down SyndromeR01HD113720 · NICHD · COLORADO STATE UNIVERSITY · PI Nicole Baumer, Joaquin M. Espinosa · 2024 to 2026
$2.1M
Executive Function Intervention for Young Children with Down SyndromeR61HD115161 · NICHD · COLORADO STATE UNIVERSITY · PI FIDLER, DEBORAH J · 2024 to 2025
$1.4M
Fondation Jérôme Lejeune 2061NICHD NIH HHS R01 HD110542NICHD NIH HHS R01 HD113720NICHD NIH HHS R61 HD115161NIH HHS R61 HD115161
6 · The paper itself

Abstract

backgroundThis cross-national study aimed to investigate and identify the motivations that drive parents of children with Down syndrome (DS) towards or away from participating in research.

methodsParticipants were 33 parents of children with DS who took part in nine focus groups in the United States and in Italy. Answers to questions regarding motivation for research participation were transcribed and then analyzed using ATLAS.ti.

resultsSix themes emerged regarding parent motivation: (a) Increasing parent knowledge; (b) Interest in a specific research topic; (c) Opportunities to receive support; (d) Logistical accessibility; (e) To support the DS community; and (f) To create a more inclusive society. 'Interest in a specific research topic' and 'Logistical accessibility' emerged as the main motivating factors cross-culturally. Only subtle differences emerged between the two countries.

conclusionResults of this work can inform the alignment of future DS research with community and stakeholder priorities and values.

Indexed as

Community-Based Participatory ResearchDown SyndromeHealth Knowledge, Attitudes, PracticeMotivationParentsAdultChild, PreschoolFemaleFocus GroupsHumansItalyMaleUnited Statescommunity based participatory research (CBPR)down syndrome (DS)focus groupsintellectual disability (ID)parents

Identifiers

PMID41525769
PMCPMC12795633

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.