Evidence map›Paper›PMID 40638332›Full record

ArticleFamilies, systems & health : the journal of collaborative family healthcare2025

Osteogenesis imperfecta and the family: A qualitative analysis of the experiences of family and caregivers.

Gianna M Colombo, Andrew D Wiese, Amelia E Mercado, Whitney S Shepherd, Michelle Fynan, Kara Ayers, W Conor Rork, Kristin M Kostick-Quenet, Dianne Nguyen, Sophie C Schneider and 9 more

Abstract read
In one paragraph

Article in Families, systems & health : the journal of collaborative family healthcare, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0cells of the map it votes in
0citing papers in PubMed
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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

19 authors.

Gianna M ColomboDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Andrew D WieseDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Amelia E MercadoDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Whitney S ShepherdDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Michelle FynanPrivate Practice.
Kara AyersDivision of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center.
W Conor RorkVagelos College of Physicians and Surgeons, Columbia University.
Kristin M Kostick-QuenetCenter for Medical Ethics and Health Policy, Baylor College of Medicine.
Dianne NguyenDepartment of Molecular and Human Genetics, Baylor College of Medicine.
Sophie C SchneiderDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Julia M MoralesDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Saniah I KazimiDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Hannah E ChoDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.
Members Of The Bbdc
Chaya N MuraliDepartment of Molecular and Human Genetics, Baylor College of Medicine.
Marie-Eve RobinsonDepartment of Pediatrics, University of Ottawa.ORCID 0000-0002-2539-227X
Brendan LeeDepartment of Molecular and Human Genetics, Baylor College of Medicine.
V Reid SuttonDepartment of Molecular and Human Genetics, Baylor College of Medicine.
Eric A StorchDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine.ORCID 0000-0002-7631-3703

Funding

Project 3: 3D ImagingU54AR068069 · NIAMS · BAYLOR COLLEGE OF MEDICINE · PI Brendan Lee · 2014 to 2026
$19.3M
Preclinical and Clincial OutcomesP50HD103555 · NICHD · BAYLOR COLLEGE OF MEDICINE · PI Sandesh Chakravarthy Sreenath Nagamani, David Loren Nelson · 2020 to 2026
$9.9M
National Institutes of Health; Eunice Kennedy Shriver National Institute of Child Health and Human DevelopmentNIAMS NIH HHSNIAMS NIH HHS U54 AR068069NICHD NIH HHS P50 HD103555NIMH NIH HHS
6 · The paper itself

Abstract

introductionOsteogenesis imperfecta (OI) describes a group of rare, heritable bone disorders causing bone fragility, tendency to fracture with minimal trauma, and chronic pain due to abnormal collagen synthesis. Limited research exists on the psychosocial impact of OI during childhood on caregivers and families. PURPOSE: This study aimed to understand caregiver experiences, existing social support provided for families affected by OI, and the impact of OI on family life.

methodThirteen caregivers of individuals with OI participated in semistructured interviews. Researchers coded, abstracted, and analyzed qualitative data to develop themes on the psychosocial impact of OI on the family unit.

resultsAnalysis yielded four themes: (a) encountering difficult experiences during diagnosis of OI, (b) caregiver well-being and coping, (c) broad family impact, and (d) the existence and further need for social support. DISCUSSION: Findings have implications for child and caregiver well-being and health care professionals during diagnosis and emphasize the need for social support for families affected by OI. Future research should engage a more diverse (in terms of ethnoracial demographics and family structures) sample and utilize quantitative analyses to complement the present understanding of the relationship between OI and family well-being. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Indexed as

CaregiversFamilyOsteogenesis ImperfectaAdaptation, PsychologicalAdolescentAdultChildFemaleHumansInterviews as TopicMaleMiddle AgedQualitative ResearchSocial Support

Identifiers

PMID40638332
PMCPMC12252216

What Socratic holds

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Registered trials

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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 Socratic graph.