Symptoms of Importance to Primary Caregivers of Children with Cerebral Palsy

Degree Awarded: Ph.D. Nursing. The Catholic University of AmericaAbstractFew studies have explored the nature and significance of symptoms experienced by children with cerebral palsy (CP) over time (O'Mahony, 2010). Given the inherent limitation of a child with CPs self-report, the purpose of this study was to define the dynamic factors that assign importance to given symptoms from the point of view of the child's primary caregivers. A grounded theory methodology that applied observation and semi structured interviews with forty-three primary caregiver participants was conducted. The research generated The Theory of Reconstruction to describe the dynamic product of three sources of influence, meaning, language and thought that determine the assignment of importance to a given symptom. The slowly evolving and elusive declaration of the condition of cerebral palsy mean that primary caregivers are faced with repetitive cycles of clinical changes that challenge the immediate balance in all aspects of the child's life. The research described the process of "tribulation" that occurs as caregivers confront a crisis or significant change in their child's status. As symptom properties and conditions evolve caregivers go through a process of learning, a complex re-assignment of meaning and importance to their child's symptoms that this research describes as "reconstruction." The impact on child's overall health, wellbeing and quality of life determines the assignment of importance to a child's symptoms. This research challenged certain basic assumptions about motor function, arguing that symptoms associated with changes in motor function are not the primary determinants of quality of life for a child with cerebral palsy