Feelings of loss in parents of children with infantile cerebral palsy

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.

Keywords: Cerebral palsy; Disability; Grief; Parents; Qualitative.