Department of Pediatrics. University of Washington School of Medicine, Seattle, WA, USA.
Seattle Children's Research Institute, Center for Clinical & Translational Research, Seattle, WA, USA.
Cleft Palate Craniofac J. 2024 Jul;61(7):1125-1133. doi: 10.1177/10556656231157449. Epub 2023 Feb 20.
Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation.
In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview.
Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition.
PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1-2 weeks apart.
Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively.
Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control.
PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation.
颅面畸形护理中几乎没有基于证据的心理社会干预措施。本研究（a）评估了针对颅面畸形儿童照顾者的压力管理中的韧性促进-父母（PRISM-P）干预措施的可行性和可接受性，以及（b）描述了照顾者韧性的障碍和促进因素，为方案的调整提供信息。
这是一项单臂队列研究，参与者完成了基线人口统计学问卷、PRISM-P 方案和退出访谈。
符合条件的个体是英语为母语的、年龄在 12 岁以下的颅面畸形儿童的法定监护人。
PRISM-P 包括 4 个模块（压力管理、目标设定、认知重构、意义建构），以 1-2 周间隔的 2 次一对一电话或视频会议进行。
可行性定义为入组参与者中完成率>70%；可接受性定义为>70%愿意推荐 PRISM-P。总结了干预反馈和照顾者感知到的韧性障碍和促进因素的定性结果。
共接触了 20 位照顾者，其中 12 位（60%）入组。他们大多数是孩子<1 岁的母亲（67%），孩子诊断为唇裂和/或腭裂（83%）或颅面微小畸形（17%）。其中，8 位（67%）完成了 PRISM-P，7 位（58%）完成了访谈；4 位（33%）在 PRISM-P 之前失访，1 位（8%）在访谈之前失访。反馈非常积极，100%的人愿意推荐 PRISM-P。韧性的障碍包括对孩子健康的不确定性；促进因素包括社会支持、父母身份、知识和控制。
PRISM-P 得到了有颅面畸形儿童的照顾者的认可，但根据方案完成率，其可行性较差。韧性的障碍和促进因素支持 PRISM-P 适合该人群，并为方案调整提供了信息。
