Abstract

FERNANDEZ-ALCANTARA, M. et al. Experiences and changes in parents of children with infant cerebral palsy: a qualitative study. Anales Sis San Navarra [online]. 2013, vol.36, n.1, pp.9-20. ISSN 1137-6627.  https://dx.doi.org/10.4321/S1137-66272013000100002.

Background. The diagnosis of infant cerebral palsy (ICP) is a traumatic event that can provoke multiple effects and changes in the family. The aim of the study is to discover the difficulties that parents face in the process of parenting, especially in the initial period following diagnosis. Methods. A qualitative study was carried out through semi-structured interviews. Sixteen mothers and fathers whose children were diagnosed with cerebral palsy participated in the study. Data analysis was performed with Atlas.ti 6.2 software following a strategy of open coding. Results. The reception of the diagnosis is perceived as an unexpected event that makes parents change expectations and hopes related to their children. The mode of relation with the child with ICP is different from that with other children as parents are more focused on the possibility of improvement and the future evolution of their child. Changes in different aspects of the lives of these parents are shown, such as demands on time, their economic and labour situation, as well as the relationship of the couple. Conclusions. In providing care for children with cerebral palsy it is necessary to take the problems of the parents into account, especially in the initial period after diagnosis. The process of parenting a child with cerebral palsy entails many changes in the family so a global perspective is needed to organize interventions.

Keywords : Cerebral palsy; Parent; Qualitative research; Family caregiving.

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