Evidence map›Paper›PMID 40332945›Full record

ArticleJournal of pediatric psychology2025

Longitudinal psychological well-being in caregivers of young children with cleft lip and/or palate.

Nicola M Stock, Debora Blaso, Paul White, Laura Shepherd, Bruna Costa, Karine Edme, Richa Aspland, Matthew Hotton

Abstract read
In one paragraph

Article in Journal of pediatric psychology, 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. The Relationship Between Parent and Child Anxiety: Testing the Intergenerational Model of Anxiety in Children Born with a Cleft.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026
    Article
  2. Review
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

8 authors.

Nicola M StockCentre for Appearance Research, University of the West of England, Bristol, United Kingdom.ORCID 0000-0002-1285-691X
Debora BlasoCentre for Appearance Research, University of the West of England, Bristol, United Kingdom.
Paul WhiteCentre for Appearance Research, University of the West of England, Bristol, United Kingdom.
Laura ShepherdTrent Cleft Network, City Hospital Campus, Nottingham University Hospitals, Nottingham, United Kingdom.
Bruna CostaCentre for Appearance Research, University of the West of England, Bristol, United Kingdom.
Karine EdmeCleft NET East, Addenbrooke's Hospital, Cambridge, United Kingdom.
Richa AsplandCleft NET East, Addenbrooke's Hospital, Cambridge, United Kingdom.
Matthew HottonOxford Institute of Clinical Psychology Training and Research, Oxford, United Kingdom.

Funding

NHSScar Free Foundation 13/SW/0064The Scar Free Foundation 13/SW/0064
6 · The paper itself

Abstract

objectiveCaregivers of children with chronic conditions can experience psychological distress and an impact on quality of life (QoL). Cleft lip and/or palate (CL/P) is one of the most common congenital conditions worldwide. Utilizing data extracted from The Cleft Collective cohort studies in the United Kingdom, this study investigated longitudinal psychological well-being in caregivers of young children with CL/P, to inform screening practices and early intervention.

methodsBaseline (post-diagnosis) and 5-year questionnaire data were extracted for 525 caregivers (342 biological mothers, 183 fathers/partners). Outcome measures included the PedsQL-Family Impact Module, the Perceived Stress Scale, and the Hospital Anxiety and Depression Scale.

resultsQoL significantly improved from T1 (post-birth) to T2 (5 years) as reported by mothers and fathers/partners. At T2, scores on all measures were aligned with, or more favorable than, norms. A minority continued to report clinically significant levels of distress at 5 years. Predictors of poorer outcomes on all measures included a less positive life orientation, more negative appraisals of CL/P, less favorable baseline scores, lower healthcare satisfaction, and prior mental health conditions. Outcomes were also less favorable for caregivers of children with combined cleft lip and palate compared to other cleft types. Reductions in negative appraisals of CL/P were significantly associated with improved QoL over time.

conclusionsQoL and psychological well-being in caregivers is generally positive at 5 years. A minority experienced poorer outcomes and routine assessment by a multidisciplinary team is therefore recommended. Targeting early negative appraisals may help to facilitate long-term caregiver adjustment.

Indexed as

CaregiversCleft LipCleft PalateQuality of LifeStress, PsychologicalAdultChild, PreschoolFemaleHumansInfantLongitudinal StudiesMaleMiddle AgedMothersPsychological Well-BeingUnited Kingdomcaregivercleft lip and palateearly interventionmultidisciplinary carepsychological well-beingscreeningThe Cleft Collective

Identifiers

PMID40332945
PMCPMC12451232

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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 OpenQuestion graph.