RTI International, Research Triangle Park, North Carolina, United States of America.
Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.
PLoS One. 2023 May 4;18(5):e0270169. doi: 10.1371/journal.pone.0270169. eCollection 2023.
This paper provides the detailed protocol for a pilot study testing the feasibility, acceptability, and initial efficacy of a targeted two-phase, remotely delivered early intervention program for infants with neurogenetic conditions (NGC) and their caregivers. The Parent and Infant Inter(X)action Intervention (PIXI) is designed to support parents and infants with a NGC diagnosed in the first year of life. PIXI is implemented in two phases, with the first phase focusing on psychoeducation, parent support, and how to establish routines for supporting infant development. Phase II helps parents learn targeted skills to support their infant's development as symptoms may begin to emerge. The proposed non-randomized feasibility pilot study will establish the feasibility of a year-long virtually implemented intervention program to support new parents of an infant diagnosed with an NGC.
本文提供了一项试点研究的详细方案，该研究旨在测试针对神经遗传疾病（NGC）婴儿及其照顾者的有针对性的两阶段远程早期干预计划的可行性、可接受性和初步疗效。父母与婴儿互动干预（PIXI）旨在为在生命的第一年被诊断出 NGC 的父母和婴儿提供支持。PIXI 分两个阶段实施，第一阶段侧重于心理教育、父母支持以及如何建立支持婴儿发展的常规。第二阶段帮助父母学习有针对性的技能，以支持他们婴儿的发展，因为症状可能开始出现。拟议的非随机可行性试点研究将确定一项为期一年的虚拟实施干预计划的可行性，以支持新诊断出 NGC 的婴儿的父母。
