Mary Ellen Young

Florida State University, Tallahassee, FL, United States

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Publications (6)8.24 Total impact

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    ABSTRACT: Abstract Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver's concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role. Implications for Rehabilitation Stroke is a sudden event that often leaves stroke survivors and their families in crisis. The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation. Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver. Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.
    Disability and Rehabilitation 01/2014; · 1.54 Impact Factor
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    ABSTRACT: Preparation for caregiving is improved through engaged interactions between stroke family caregivers and healthcare providers throughout the care trajectory. We explored caregivers' perceptions about interactions with providers in rehabilitation, and how these experiences affected caregiver preparation. Seventeen caregivers, included in this grounded theory study, were interviewed during a rehabilitation stay and postdischarge. Data were analyzed using dimensional and comparative analysis. Caregivers described interactions with providers on a continuum from collaborative to disconnected, and a range of strategies to enhance interactions. Caregivers want to be actively engaged with providers during inpatient rehabilitation and collaborative interactions enhance preparedness and care satisfaction. Family members should be assessed for caregiving capacity and interactions between providers and caregivers should be individualized to specific needs. Providers must also be aware that many caregivers are not active information seekers. They must engage caregivers who may not even know what questions to ask.
    Rehabilitation nursing: the official journal of the Association of Rehabilitation Nurses 07/2013; 38(2):88-98. · 0.78 Impact Factor
  • Maryann Abendroth, Barbara J Lutz, Mary Ellen Young
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    ABSTRACT: Parkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers. The purpose of the study was to understand (1) family caregivers' experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility. Twenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease. Grounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis. The caregiving model developed from the data illustrated that heightened caregiver strain-a risk factor for institutionalization-results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease. Implications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.
    International journal of nursing studies 04/2012; 49(4):445-54. · 1.91 Impact Factor
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    ABSTRACT: Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home. Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis. Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients' needs on discharge. Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let al.one the crisis of discharge and all of the new responsibilities with which they must deal.
    Topics in Stroke Rehabilitation 09/2011; 18(6):786-97. · 0.79 Impact Factor
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    Barbara J Lutz, Mary Ellen Young
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    ABSTRACT: Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.
    Rehabilitation nursing: the official journal of the Association of Rehabilitation Nurses 07/2010; 35(4):152-60. · 0.78 Impact Factor
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    ABSTRACT: To provide preliminary evidence of the construct validity of the Communicative Effectiveness Survey (CES) for individuals with dysarthria and idiopathic Parkinson's disease (PD). In a prospective, quasi-experimental design, 25 participants each were assigned to 3 groups (N = 75): PD and dysarthria, non-PD and no dysarthria, and PD significant others (SOs). Mean CES ratings were used to test for significant differences between the PD and non-PD group, and PD and SO rating of PD's communicative effectiveness. Multiple linear regression tested for significant predictors of CES ratings for PD group only using sentence intelligibility and spontaneous speech intelligibility scores as predictor variables. The PD group rated their CES significantly lower than did the non-PD group. The PD group rated their CES significantly higher than their SOs rated them. Neither speech intelligibility score was a significant predictor of CES ratings. In follow-up analysis, the Hoehn and Yahr PD staging accounted for 47% of the variability in CES ratings for the PD group participants. This study provides preliminary evidence of the CES's construct validity. Clinicians and researchers who assess and treat individuals with PD may consider adding an additional assessment to the traditional clinical measures (i.e., speech intelligibility) by obtaining a measure of communicative effectiveness.
    American Journal of Speech-Language Pathology 12/2008; 17(4):335-47. · 2.45 Impact Factor