Revista CEFAC ()

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

  • Rosane Maria dos Santos,
  • Giselle Massi,
  • Mariluci Hautsch Willig,
  • Luciana Branco Carnevale,
  • Ana Paula Berberian,
  • Márcia Helena de Souza Freire,
  • Rita Tonocchi,
  • Telma Pelaes de Carvalho

DOI
https://doi.org/10.1590/1982-021620171969817
Journal volume & issue
Vol. 19, no. 6
pp. 821 – 830

Abstract

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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.

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