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
研究目的：分析家庭照料者对脑瘫（Cerebral Palsy）儿童及青少年所接受照料的认知状况。
研究方法：本研究为量化-质性混合研究，共纳入50名确诊脑瘫的儿童及青少年的家庭照料者。数据收集采用半开放式访谈法，以半开放问题设计访谈提纲，访谈资料基于内容分析法（Content Analysis）进行编码与分析。
研究结果：照料者关于脑瘫儿童及青少年照料工作的叙述，大多与爱意、幸福感、特权感与克服困境的成就感等积极情感相关。然而，相当比例的照料者表示，自身的生活质量完全依附于被照料者的健康状况，这使得其自身需求与被照料者的需求边界变得模糊不清。
研究结论：医务工作者需充分认识到照料者健康促进对于维持其持续照料能力的重要意义，可通过协助照料者识别自身健康需求来落实这一目标。