Myotonic Dystrophy and Huntington's Disease Care: 'We Like to Think We're Making a Difference'
| Autor: | Shannon L. Venance, Kori A LaDonna, Christine Piechowicz, Christopher Watling, Susan L. Ray |
|---|---|
| Rok vydání: | 2016 |
| Předmět: |
Male
medicine.medical_specialty Coding (therapy) Disease Care provision Interviews as Topic 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Huntington's disease Patient-Centered Care Health care Medicine Humans Myotonic Dystrophy 030212 general & internal medicine Cognitive decline business.industry Social Support Cognition General Medicine medicine.disease Huntington Disease Neurology Caregivers Family medicine Physical therapy Female Neurology (clinical) business 030217 neurology & neurosurgery Follow-Up Studies |
| Zdroj: | The Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques. 43(5) |
| ISSN: | 0317-1671 |
| Popis: | Background: Patient-centered care for individuals with myotonic dystrophy (DM1) and Huntington’s disease (HD)—chronic, progressive, and life-limiting neurological conditions—may be challenged by patients’ cognitive and behavioral impairments. However, no research has explored health care providers’ (HCPs’) perspectives about patient-centered care provision for these patients along their disease trajectory. Methods: Constructivist grounded theory informed the iterative data collection and analysis process. Eleven DM1 or HD HCPs participated in semistructured interviews, and three stages of coding were used to analyze their interview transcripts. Codes were collapsed into themes and categories.Results: Three categories including an evolving care approach, fluid roles, and making a difference were identified. Participants described that their clinical care approach evolved depending on the patient’s disease stage and caregivers’ degree of involvement. HCPs described that their main goal was to provide hope to patients and caregivers through medical management, crisis prevention, support, and advocacy. Despite the lack of curative treatments, HCPs perceived that patients benefited from ongoing clinical care provided by proactive clinicians. Conclusions: Providing care for individuals with DM1 and HD is a balancing act. HCPs must strike a balance between (1) the frustrations and rewards of patient-centered care provision, (2) addressing symptoms and preventing and managing crises while focusing on patients’ and caregivers’ quality of life concerns, and (3) advocating for patients while addressing caregivers’ needs. This raises important questions: Is patient-centered care possible for patients with cognitive decline? Does chronic neurological care need to evolve to better address patients’ and caregivers’ complex needs? |
| Databáze: | OpenAIRE |
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