Stock Nicola Marie, Marik Patricia, Magee Leanne, Aspinall Cassandra L, Garcia Laura, Crerand Canice, Johns Alexis
Centre for Appearance Research, University of the West of England, Bristol, United Kingdom.
Children's Hospital of Wisconsin, Milwaukee, WI, USA.
Cleft Palate Craniofac J. 2020 Mar;57(3):333-343. doi: 10.1177/1055665619868052. Epub 2019 Aug 25.
Psychosocial issues associated with craniofacial diagnoses and the ongoing burden of care can impact the quality of life of patients and families, as well as treatment adherence and outcomes. Utilizing available literature and clinical expertise across 6 centers, the present article summarizes key psychosocial issues for the benefit of nonmental health medical providers and offers suggestions as to how all members of craniofacial teams can promote positive psychosocial outcomes.
Family adjustment across developmental phases is outlined, with strategies to support adaptive parental coping. Teasing is a common concern in craniofacial populations and medical providers can promote coping and social skills, as well as link families to mental health services when needed. Academic issues are described, alongside suggestions for medical providers to assist families with school advocacy and ensure access to appropriate services within the school setting. Medical providers are key in preparing patients and families for surgery, including consideration of medical, social, and logistical supports and barriers. As craniofacial care spans infancy to adulthood, medical providers are instrumental in assisting patients and families to navigate treatment transition periods. In addition to ongoing clinical team assessments, medical providers may utilize screening measures to identify and track patient and family adjustment in multiple areas of team care.
Multidisciplinary providers play an important role in supporting positive adjustment in patients affected by craniofacial conditions and their families.
与颅面诊断相关的心理社会问题以及持续的护理负担会影响患者及其家庭的生活质量，以及治疗依从性和治疗效果。本文利用6个中心的现有文献和临床专业知识，总结关键的心理社会问题，以造福于非心理健康医疗服务提供者，并就颅面团队的所有成员如何促进积极的心理社会结果提供建议。
概述了不同发育阶段的家庭适应情况，并提出了支持父母适应性应对的策略。被取笑是颅面患者群体普遍关心的问题，医疗服务提供者可以促进应对能力和社交技能的培养，并在需要时为家庭联系心理健康服务。文中描述了学业问题，并为医疗服务提供者提供了相关建议，以帮助家庭进行学校维权，并确保在学校环境中获得适当的服务。医疗服务提供者在让患者及其家庭为手术做准备方面起着关键作用，包括考虑医疗、社会和后勤方面的支持与障碍。由于颅面护理涵盖从婴儿期到成年期，医疗服务提供者在协助患者及其家庭度过治疗过渡期方面发挥着重要作用。除了持续的临床团队评估外，医疗服务提供者还可利用筛查措施来识别和跟踪患者及其家庭在团队护理多个领域的适应情况。
多学科医疗服务提供者在支持受颅面疾病影响的患者及其家庭的积极适应方面发挥着重要作用。
