Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo [Experiences and changes in parents of children with infant cerebral palsy: a qualitative study.]

Facultad de Psicología, Universidad de Granada, Granada, 18071, Spain. .
Anales del sistema sanitario de Navarra (Impact Factor: 0.44). 06/2014; 36(1):9-20.
Source: PubMed


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.

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Available from: Manuel Fernández-Alcántara, Jan 10, 2014
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    ABSTRACT: Background Raising a child diagnosed with Infantile Cerebral Palsy is a challenge for families and causes many changes in their lifestyle. When the diagnosis is unexpected, feelings related to loss and hard-to-manage emotions such as uncertainty and bewilderment can arise. Objective To identify how feelings of loss are structured in fathers and mothers of children diagnosed with Infantile Cerebral Palsy. Methods A qualitative design with based on a grounded theory approach was used. Twenty-four participants were selected to participate in the research from San Cecilio Clinical Hospital in the city of Granada (Spain). The sampling procedure was purposive based on inclusion and exclusion criteria and ended when data saturation was acquired. The participants were interviewed according to a script developed ad hoc. Data were collected during 2012. The interviews were analyzed with Atlas.ti 6.2 software, using the sequence suggested by Straus and Corbin including open, axial and selective codification. Results The analysis led to the identification of the main category, “Experiences of loss”. The codes contributing to explain these experiences were “Shock”, “Hope”, “Traumatic Experience”, “Feelings related to loss”, “Ideal Child” and “Acceptance of the Child”. Conclusions These parents experience feelings of loss of the ideal child, which are more complex in the first stage of the diagnosis and when the severity of the cerebral palsy is greater. Emotional intervention on the part of health care providers is needed to aid parents in facing the various obstacles encountered throughout their child’s up-bringing.
    Full-text · Article · Jun 2014 · Disability and Health Journal