Stock Nicola M, Blaso Debora, Hotton Matthew
Associate Professor of Psychology, Centre for Appearance Research, University of the West of England, Coldharbour Lane, Bristol, BS16 1QY, UK.
Research Associate, Centre for Appearance Research, University of the West of England, Bristol, UK.
Cleft Palate Craniofac J. 2024 Sep 9:10556656241280071. doi: 10.1177/10556656241280071.
Raising a child with healthcare needs places additional demands on caregivers. In 2012, Nelson and colleagues authored a review of 57 papers pertaining to parents' experiences of caring for a child with cleft lip and/or palate (CL/P). Thanks in large part to this review, available literature on this topic has grown considerably. The aim of the present review was to update and critically appraise recent literature, with the wider goal of assessing progress in the field and setting recommendations for future work. All original, peer-reviewed articles pertaining to the psychological adjustment of parents of children with CL/P living in high-income countries (published May 2009 to May 2024) were examined. A total of 126 articles were included. Findings were narratively synthesised according to three salient themes: Emotional Impact; Social Experiences; and Care Delivery. Recent research has built on Nelson et al.'s recommendations, addressing some prior gaps in knowledge. Nonetheless, some areas remained largely unexplored and critical methodological limitations were still evident. Recommendations for clinical practice include: improved informational resources for parents and non-specialist health professionals, regular audit of services in collaboration with parents and families, routine psychological screening for known risk factors and integrated psychological support from diagnosis onward. Recommendations for future research include the design of multicentre, prospective, longitudinal studies with sufficient sample sizes and appropriate control/reference groups, inclusion of families from diverse ethnic and socioeconomic backgrounds, further examination of factors contributing to psychological growth, the development and evaluation of psychological interventions, and cross-condition learning.
抚养一个有医疗需求的孩子会给照顾者带来额外的负担。2012年，纳尔逊及其同事撰写了一篇综述，回顾了57篇关于父母照顾唇腭裂（CL/P）患儿经历的论文。很大程度上得益于这篇综述，关于该主题的现有文献有了显著增长。本综述的目的是更新并批判性地评估近期文献，更广泛的目标是评估该领域的进展并为未来工作提出建议。我们查阅了所有与高收入国家中唇腭裂患儿父母的心理调适相关的原创、同行评审文章（发表于2009年5月至2024年5月）。共纳入126篇文章。研究结果根据三个突出主题进行了叙述性综合：情感影响；社会经历；以及护理提供。近期的研究基于纳尔逊等人的建议展开，填补了一些先前的知识空白。尽管如此，一些领域仍基本未被探索，关键的方法学局限性依然明显。对临床实践的建议包括：为父母和非专科医疗专业人员提供更好的信息资源，与父母和家庭合作定期对服务进行审核，对已知风险因素进行常规心理筛查以及从诊断开始提供综合心理支持。对未来研究的建议包括设计多中心、前瞻性、纵向研究，要有足够的样本量和合适的对照/参考组，纳入来自不同种族和社会经济背景的家庭，进一步研究促进心理成长的因素，开发和评估心理干预措施，以及跨疾病学习。
