Children and adolescents with cerebral palsy in the perspective of familial caregivers

ABSTRACT Objective: to analyze family caregivers’ perceptions on care delivered to children and adolescents presented with cerebral palsy. Methods: a quantitative, qualitative study developed with 50 family caregivers of children and adolescents diagnosed with cerebral palsy. Data collection was carried out by means of an interview with semi-open questions whose answers were analyzed based on the Content Analysis. Results: family members’ accounts on care delivered to children and adolescents with cerebral palsy are mostly connected with positive feelings, such as love, happiness, privilege and overcoming. However, for a significant share of these family members, their own quality of life depends on the cared subject’s health condition, blurring the distinction between their own needs and those of the cared subjects. Conclusions: health professionals need to recognize the importance of caregivers’ health promotion as a major condition to keep caring. In this dimension, they may contribute by helping caregivers identify their own health needs.

摘要
目的：分析家庭照护者对确诊脑瘫的儿童及青少年所接受照护服务的认知情况。
方法：本研究为定量与定性结合的混合研究，共纳入50名脑瘫儿童及青少年的家庭照护者。数据收集采用半开放式访谈法，访谈结果基于内容分析法（Content Analysis）进行分析。
结果：照护者对脑瘫儿童及青少年照护经历的叙述多与积极情感相关，如爱意、幸福感、价值感与成长突破。但该群体中相当一部分照护者的自身生活质量依赖于被照护者的健康状况，使得自身需求与被照护者的需求边界变得模糊。
结论：医疗专业人员需认识到促进照护者健康是维持其持续照护能力的核心前提。在此维度上，医护人员可通过协助照护者识别自身健康需求来提供支持。