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：分析家庭照护者对罹患脑瘫的儿童及青少年所接受照护服务的认知情况。
研究方法：本研究为定量与定性混合研究，共纳入50名确诊脑瘫的儿童及青少年的家庭照护者。数据收集采用半开放式访谈法，所得访谈资料基于内容分析法（Content Analysis）进行编码分析。
研究结果：家庭照护者对脑瘫儿童及青少年照护经历的叙述，大多与爱、幸福、使命感与克服困境等积极情感相关。然而，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，这模糊了自身需求与被照护者需求之间的界限。
研究结论：医疗健康从业人员需认识到，照护者的健康促进是维持其照护能力的核心前提。在此维度上，从业者可通过协助照护者识别自身健康需求来发挥积极作用。