Motivation in Rare Disease Self-Care: A Phenomenological Study of Pediatric Patients With Spinal Muscular Atrophy and Their Caregivers
This study highlights the vital roles of caregivers in adapting to the dynamic self-care motivations of children and adolescents and of healthcare professionals in facilitating communication and care strategies. Personalized approaches are essential for enhancing autonomy and well-being in pediatric patients.
Authors
- Chia-Ying Chung (ORCID: https://orcid.org/0000-0002-2146-6040)
- Yuh‐Shiow Li
- Bao‐Huan Yang (ORCID: https://orcid.org/0000-0002-5546-1467)
Institutions
- Chang Gung University of Science and Technology (TW)
- Chang Gung University (TW)
- Chang Gung Memorial Hospital (TW)
Publication Details
- Journal
- Journal of Nursing Research
- Published
- 2024-12-10
- DOI
- https://doi.org/10.1097/jnr.0000000000000652
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00