Jana E Jones1, Alanna Kessler-Jones2, Mary K Thompson3, Kate Young2, Amelia J Anderson4, David M Strand5. 1. University of Wisconsin School of Medicine & Public Health, Department of Neurology, 1685 Highland Ave., Madison, WI 53705, USA. Electronic address: jejones@neurology.wisc.edu. 2. University of Wisconsin School of Medicine & Public Health, Department of Neurology, 1685 Highland Ave., Madison, WI 53705, USA. 3. University of Wisconsin Department of Continuing Studies, 21 N. Park Street, Madison, WI 53715, USA. 4. University of Kentucky, College of Medicine, Department of Neurology & Neurosurgery, 740 S. Limestone Street, Kentucky Clinic L-454, Lexington, KY 40536-0284, USA. 5. University of Wisconsin, Department of Rehabilitation Psychology and Special Education, 431 Education Building, 1000 Bascom Mall, Madison, WI 53706-1326, USA.
Abstract
PURPOSE: In order to develop a theoretical framework for person-centered care models for children with epilepsy and their parents, we conducted a qualitative study to explore and understand parents' needs, values, and preferences to ultimately reduce barriers that may be impeding parents from accessing and obtaining help for their children's co-occurring problems. METHODS: A qualitative grounded theory study design was utilized to understand parents' perspectives. The participants were 22 parents of children with epilepsy whose age ranged from 31 to 53 years. Interviews were conducted using open-ended semistructured questions to facilitate conversation. Transcripts were analyzed using grounded theory guidelines. RESULTS: In order to understand the different perspectives parents had about their child, we devised a theory composed of three zones (Zones 1, 2, and 3) that can be used to conceptualize parents' viewpoints. Zone location was based on a parent's perspectives on their child's comorbidities in the context of epilepsy. These zones were developed to help identify distinctions between parents' perspectives and to provide a framework within which to understand parents' readiness to access and implement interventions to address the child's struggles. These zones of understanding describe a parent's perspectives on their children's struggles at a particular point in time. This is the perspective from which parents address their child's needs. This theoretical perspective provides a structure in which to discuss a parent's perspectives on conceptualizing or comprehending the child's struggles in the context of epilepsy. The zones are based on how the parents describe (a) their concerns about the child's struggles and (b) their understanding of the struggles and (c) the parent's view of the child's future. CONCLUSIONS: Clinicians working with individuals and families with epilepsy are aware that epilepsy is a complex and unpredictable disorder. The zones help clinicians conceptualize and build a framework within which to understand how parents view their child's struggles, which influences the parents' ability to understand and act on clinician feedback and recommendations. Zones allow for increased understanding of the parent at a particular time and provide a structure within which a clinician can provide guidance and feedback to meet parents' needs, values, and preferences. This theory allows clinicians to meet the parents where they are and address their needs in a way that benefits the parents, family, and child.
PURPOSE: In order to develop a theoretical framework for person-centered care models for children with epilepsy and their parents, we conducted a qualitative study to explore and understand parents' needs, values, and preferences to ultimately reduce barriers that may be impeding parents from accessing and obtaining help for their children's co-occurring problems. METHODS: A qualitative grounded theory study design was utilized to understand parents' perspectives. The participants were 22 parents of children with epilepsy whose age ranged from 31 to 53 years. Interviews were conducted using open-ended semistructured questions to facilitate conversation. Transcripts were analyzed using grounded theory guidelines. RESULTS: In order to understand the different perspectives parents had about their child, we devised a theory composed of three zones (Zones 1, 2, and 3) that can be used to conceptualize parents' viewpoints. Zone location was based on a parent's perspectives on their child's comorbidities in the context of epilepsy. These zones were developed to help identify distinctions between parents' perspectives and to provide a framework within which to understand parents' readiness to access and implement interventions to address the child's struggles. These zones of understanding describe a parent's perspectives on their children's struggles at a particular point in time. This is the perspective from which parents address their child's needs. This theoretical perspective provides a structure in which to discuss a parent's perspectives on conceptualizing or comprehending the child's struggles in the context of epilepsy. The zones are based on how the parents describe (a) their concerns about the child's struggles and (b) their understanding of the struggles and (c) the parent's view of the child's future. CONCLUSIONS: Clinicians working with individuals and families with epilepsy are aware that epilepsy is a complex and unpredictable disorder. The zones help clinicians conceptualize and build a framework within which to understand how parents view their child's struggles, which influences the parents' ability to understand and act on clinician feedback and recommendations. Zones allow for increased understanding of the parent at a particular time and provide a structure within which a clinician can provide guidance and feedback to meet parents' needs, values, and preferences. This theory allows clinicians to meet the parents where they are and address their needs in a way that benefits the parents, family, and child.
Authors: D Ott; R Caplan; D Guthrie; P Siddarth; S Komo; W D Shields; R Sankar; H Kornblum; S Chayasirisobhon Journal: J Am Acad Child Adolesc Psychiatry Date: 2001-08 Impact factor: 8.829
Authors: Jana E Jones; Ryann Watson; Raj Sheth; Rochelle Caplan; Monica Koehn; Michael Seidenberg; Bruce Hermann Journal: Dev Med Child Neurol Date: 2007-07 Impact factor: 5.449
Authors: Laura J Wood; Elisabeth M S Sherman; Lorie D Hamiwka; Marlene A Blackman; Elaine C Wirrell Journal: Pediatr Neurol Date: 2008-12 Impact factor: 3.372