Evidence map›Paper›PMID 39973392›Full record

ArticleJournal of Huntington's disease2025

Through their eyes: A retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington's disease.

Maud Mj Daemen, Annelien A Duits, Lucienne B van der Meer, Ruben L Andriessen, Ruth B Veenhuizen, Renske Wassenberg, Tanja Peeters, Lia de Jager, Mayke Oosterloo

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Article in Journal of Huntington's disease, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
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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

9 authors.

Maud Mj DaemenDepartment of Psychiatry and Neuropsychology, Mental Health and Neuroscience Research Institute, Maastricht University, Maastricht, The Netherlands.ORCID 0000-0001-5038-8910
Annelien A DuitsDepartment of Psychiatry and Neuropsychology, Mental Health and Neuroscience Research Institute, Maastricht University, Maastricht, The Netherlands.ORCID 0000-0003-0279-1806
Lucienne B van der MeerDepartment of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands.
Ruben L AndriessenDepartment of Neurology, Mental Health and Neuroscience Research Institute, Maastricht University Medical Center, Maastricht, The Netherlands.ORCID 0000-0002-6337-0952
Ruth B VeenhuizenHuntington Expert Center Atlant, Apeldoorn, The Netherlands.
Renske WassenbergDepartment of Medical Psychology, Maastricht University Medical Center, Maastricht, The Netherlands.
Tanja PeetersHuntington Expert Center Land van Horne, Weert, The Netherlands.
Lia de JagerHuntington Expert Center Topaz Overduin, Katwijk, The Netherlands.
Mayke OosterlooDepartment of Neurology, Mental Health and Neuroscience Research Institute, Maastricht University Medical Center, Maastricht, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

BackgroundGrowing up with a parent with Huntington's disease (HD) profoundly impacts children. However, this impact and children's needs are often misunderstood, even by professional services. Even when resources are available, children often feel that their needs are unmet, raising concerns about the adequacy of available guidance and support.ObjectiveThis study aims to offer an in-depth understanding of the multifaceted impact of growing up with a parent with HD, examining the needs for professional guidance on emotional and social aspects, and identifying specific areas where support can be improved to better aid them.MethodsThis retrospective study utilized an exploratory sequential mixed methods design, combining qualitative focus groups (

Indexed as

Child of Impaired ParentsHuntington DiseaseParentsSocial SupportAdolescentAdultChildFemaleFocus GroupsHumansMaleQualitative ResearchRetrospective Studieschildrenfamily systemHuntington's diseasemixed-methodsneedssupport

Identifiers

PMID39973392
PMCPMC12231935

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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 OpenQuestion graph.