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一项改善 1 型神经纤维瘤病青少年同伴关系的远程医疗干预措施的可行性和可接受性:一项单臂试点研究。

Feasibility and acceptability of a telehealth intervention for improving peer relationships for adolescents with neurofibromatosis type 1: a single-arm pilot study.

机构信息

Department of Psychology, University of Wisconsin, Milwaukee, WI, United States.

出版信息

J Pediatr Psychol. 2024 Sep 1;49(9):647-655. doi: 10.1093/jpepsy/jsae050.

Abstract

OBJECTIVE

Elevated rates of social difficulties are evident for children and adolescents with neurofibromatosis type 1 (NF1) but the effects of social skills interventions have not been investigated for this population. The Program for the Education and Enrichment of Relational Skills (PEERS®), a widely established social skills intervention in autism spectrum disorders with expansion to other conditions, was recently modified to be offered virtually. This study examined the feasibility and acceptability of this telehealth intervention.

METHODS

27 adolescents with NF1 with social skills difficulties and at least 1 caregiver enrolled in the study. 19 of those participants (Mage = 14.21 years, SD = 1.63; 7 females; 79% White) completed PEERS® via telehealth in a single-arm pilot study. Dropout rates, attendance records, helpfulness of the curriculum topics and caregiver-reported acceptability, including ratings on the Treatment Acceptability Questionnaire, were examined.

RESULTS

Low study drop out (30% of enrolled participants; 14% of participants who began the intervention) and high attendance rates were observed. Caregivers found sessions related to common, everyday interactions most helpful. Adolescents indicated sessions related to having get-togethers and social nuances (e.g., humor) as most helpful. Caregiver ratings indicated acceptability of the intervention.

CONCLUSIONS

This investigation supported the feasibility and acceptability of telehealth PEERS®, a social skills intervention program, among adolescents with NF1 and their caregivers based on attendance patterns as well as appraisal of the curriculum and telehealth modality.

摘要

目的

神经纤维瘤病 1 型(NF1)患儿和青少年的社交困难发生率明显升高,但尚未针对该人群开展社交技能干预效果的研究。PEERS® 是一种广泛应用于自闭症谱系障碍的社交技能干预方法,现已扩展到其他疾病,最近已被修改为远程医疗干预。本研究旨在检验该远程医疗干预的可行性和可接受性。

方法

27 名 NF1 青少年社交技能困难,至少有 1 名照顾者参加了研究。其中 19 名参与者(平均年龄=14.21 岁,标准差=1.63;7 名女性;79%为白人)在一项单臂试点研究中通过远程医疗接受了 PEERS®干预。考察了辍学率、出勤率、课程主题的有用性以及照顾者报告的可接受性,包括治疗接受度问卷的评分。

结果

观察到较低的研究辍学率(30%的入组参与者;14%开始干预的参与者)和较高的出勤率。照顾者认为与常见日常互动相关的课程最有帮助。青少年表示与聚会和社交细节(如幽默)相关的课程最有帮助。照顾者的评分表明干预措施是可接受的。

结论

基于出勤率以及对课程和远程医疗模式的评估,本研究支持远程医疗 PEERS®(一种社交技能干预方案)在 NF1 青少年及其照顾者中的可行性和可接受性。

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