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

Author:

Santos Rosane Maria dos1,Massi Giselle2,Willig Mariluci Hautsch1,Carnevale Luciana Branco3,Berberian Ana Paula2,Freire Márcia Helena de Souza1,Tonocchi Rita2,Carvalho Telma Pelaes de4

Affiliation:

1. Universidade Federal do Paraná, Brazil

2. Universidade Tuiuti do Paraná, Brazil

3. Universidade Estadual do Centro-Oeste, Brazil

4. Instituto Federal do Paraná, Brazil

Abstract

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.

Publisher

FapUNIFESP (SciELO)

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