J Pediatr Rehabil Med. 2020;13(4):535-542. doi: 10.3233/PRM-200720.
Research supports a resilience-disruption model of family functioning in families with a child with spina bifida. Guidelines are warranted to both minimize disruption to the family system and maximize family resilience and adaptation to multiple spina bifida-related and normative stressors. This article discusses the spina bifida family functioning guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida, and reviews evidence-based directions with the intention of helping individuals with spina bifida achieve optimal mental health throughout their lifespan. Guidelines address clinical questions pertaining to the impact of having a child with spina bifida on family functioning, resilience and vulnerability factors, parenting behaviors that may facilitate adaptive child outcomes, and appropriate interventions or approaches to promote family functioning. Gaps in the research and future directions are discussed.
研究支持了一种关于脊柱裂患儿家庭功能的弹性破坏模型。有必要制定相关指南,以尽量减少家庭系统的破坏,并最大限度地提高家庭的弹性和适应多种与脊柱裂相关的和正常的压力源的能力。本文讨论了 2018 年脊柱裂协会第四版《脊柱裂患者护理指南》中的脊柱裂家庭功能指南,并回顾了循证方向,旨在帮助脊柱裂患者在其整个生命周期中实现最佳心理健康。指南涉及到与以下方面相关的临床问题:有一个患有脊柱裂的孩子对家庭功能、弹性和脆弱性因素的影响,可能促进适应性儿童结果的育儿行为,以及促进家庭功能的适当干预或方法。讨论了研究中的差距和未来的方向。