Model
Digital Document
Publisher
Florida Atlantic University
Description
When children have a moderate to severe traumatic brain injury (TBI), they are
treated in a continuum of care that includes triage and emergency care, hospitalization,
rehabilitation and outpatient therapy. Physical and cognitive recovery from brain injury
may take several years. Children’s recovery varies, depending on numerous factors
including pre-injury conditions and injury severity. While children and families are eager
to return home to familiar activities, there are often significant physical, cognitive,
behavioral and emotional changes that challenge families. Successful community
reintegration depends on the ability of the family to understand and support the child,
dealing with and responding effectively to those challenges. The purpose of this study is to understand how parents manage the care and community reintegration of their child who has experienced a TBI over time. This study utilized a mixed methods approach exploring the dimensions of the health challenge faced by parents caring for a child after a TBI, critical turning points as they face health challenges, and approaches for movement toward resolving health challenges. Story theory and story inquiry method were used to gather stories from 10 parents of children who experienced moderate to severe traumatic brain injury between the ages of 12 and 18, and between 2 and 5 years ago. Parents’ perceptions of their child’s quality of life and their ability to manage their child’s health challenge were explored using the Pediatric Quality of Life Inventory and Family Management Measure. Health challenges identified were: living with overwhelming personal upheaval, navigating the unknown, and struggling with how to support independence/dependence. Turning points were chronological or epiphanies. Approaches for movement toward resolving were continuously re-creating a new normal, being fully engaged in meeting the needs of one’s child, and embracing caring relationships to construct the new normal. Qualitative and quantitative data were analyzed to synthesize the findings. Results include a sense of ease in managing the health condition of the child associated with continuously creating a new normal. Healthcare providers can support and strengthen family management of children after TBI by understanding the health challenge, critical turning points and how parents move toward resolving.
treated in a continuum of care that includes triage and emergency care, hospitalization,
rehabilitation and outpatient therapy. Physical and cognitive recovery from brain injury
may take several years. Children’s recovery varies, depending on numerous factors
including pre-injury conditions and injury severity. While children and families are eager
to return home to familiar activities, there are often significant physical, cognitive,
behavioral and emotional changes that challenge families. Successful community
reintegration depends on the ability of the family to understand and support the child,
dealing with and responding effectively to those challenges. The purpose of this study is to understand how parents manage the care and community reintegration of their child who has experienced a TBI over time. This study utilized a mixed methods approach exploring the dimensions of the health challenge faced by parents caring for a child after a TBI, critical turning points as they face health challenges, and approaches for movement toward resolving health challenges. Story theory and story inquiry method were used to gather stories from 10 parents of children who experienced moderate to severe traumatic brain injury between the ages of 12 and 18, and between 2 and 5 years ago. Parents’ perceptions of their child’s quality of life and their ability to manage their child’s health challenge were explored using the Pediatric Quality of Life Inventory and Family Management Measure. Health challenges identified were: living with overwhelming personal upheaval, navigating the unknown, and struggling with how to support independence/dependence. Turning points were chronological or epiphanies. Approaches for movement toward resolving were continuously re-creating a new normal, being fully engaged in meeting the needs of one’s child, and embracing caring relationships to construct the new normal. Qualitative and quantitative data were analyzed to synthesize the findings. Results include a sense of ease in managing the health condition of the child associated with continuously creating a new normal. Healthcare providers can support and strengthen family management of children after TBI by understanding the health challenge, critical turning points and how parents move toward resolving.
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