Zoning in on parents' needs: understanding parents' perspectives in order to provide person-centered care.

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.

Neuropsychology in Multidisciplinary Stroke Care: Clinical Feasibility of the NINDS-CSN Vascular Cognitive Impairment Harmonization Standards.

As a significant number of stroke victims exhibit cognitive impairment, neuropsychological assessments can enhance poststroke management by identifying pertinent cognitive sequelae and providing salient care recommendations. However, due to operational differences between traditional neuropsychology and stroke services, neuropsychological assessments often remain underutilized in stroke care. We developed a novel care model that incorporated neuropsychological testing into a comprehensive stroke program using the modified vascular cognitive impairment (VCI) half-hour assessment protocol proposed by the National Institute of Neurological Disorders and Stroke-Canadian Stroke Network (NINDS-CSN). The test batteries were administered during the patients' acute admissions and then again upon follow-up in the multidisciplinary stroke clinic. Patient and provider satisfaction was then evaluated. Surveys revealed high provider satisfaction with improved clinic efficacy, improved data turnaround time, and with value neuropsychology services added to the comprehensive stroke program. Results from the 18-item industry standard Press-Ganey surveys showed all scores above 4.4/5.0 for patient satisfaction. This clinic garnered high provider and patient satisfaction after the first year. The (modified) NINDS-CSN VCI assessment protocol demonstrated clinical feasibility, suggestive of an efficient method of providing focused neuropsychological services in a clinical setting that otherwise prohibits traditional, comprehensive cognitive assessments.