Stock Nicola M, Blaso Debora, White Paul, Shepherd Laura, Costa Bruna, Edme Karine, Aspland Richa, Hotton Matthew
Centre for Appearance Research, University of the West of England, Bristol, United Kingdom.
Trent Cleft Network, City Hospital Campus, Nottingham University Hospitals, Nottingham, United Kingdom.
J Pediatr Psychol. 2025 May 7. doi: 10.1093/jpepsy/jsaf029.
Caregivers 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.
Baseline (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.
QoL 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.
QoL 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.
患有慢性病儿童的照料者可能会经历心理困扰并影响生活质量（QoL）。唇腭裂（CL/P）是全球最常见的先天性疾病之一。本研究利用从英国唇腭裂群体队列研究中提取的数据，调查了患有CL/P的幼儿照料者的纵向心理健康状况，以为筛查实践和早期干预提供依据。
提取了525名照料者（342名亲生母亲、183名父亲/伴侣）的基线（诊断后）和5年问卷数据。结果指标包括儿童生活质量量表-家庭影响模块、感知压力量表和医院焦虑抑郁量表。
母亲和父亲/伴侣报告称，从T1（出生后）到T2（5年），生活质量显著改善。在T2时，所有指标的得分与常模一致或优于常模。少数人在5年时仍报告有临床显著水平的困扰。所有指标中预后较差的预测因素包括生活取向较不积极、对CL/P的负面评价较多、基线得分较不理想、医疗保健满意度较低以及既往心理健康状况。与其他腭裂类型相比，唇腭裂合并腭裂患儿的照料者预后也较差。随着时间的推移，对CL/P负面评价的减少与生活质量的改善显著相关。
照料者的生活质量和心理健康在5年时总体呈积极状态。少数人的预后较差，因此建议由多学科团队进行常规评估。针对早期负面评价可能有助于促进照料者的长期适应。
