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Author ORCID Identifier
https://orcid.org/0000-0001-7719-6628
AccessType
Open Access Dissertation
Document Type
dissertation
Degree Name
Doctor of Philosophy (PhD)
Degree Program
Nursing
Year Degree Awarded
2019
Month Degree Awarded
May
First Advisor
Karen Kalmakis
Second Advisor
Genevieve Chandler
Third Advisor
Paula Pietromonaco
Subject Categories
Nursing
Abstract
Multiple Sclerosis, a chronic, debilitating neurological disease is typically diagnosed during the child bearing and child rearing ages of 20-50. Therefore, many people diagnosed with Multiple Sclerosis have children and adolescents living at home. With approximately 400,000 people in the United States currently diagnosed with multiple sclerosis and 10,000 new cases each year, a group of caregivers have emerged that are often unrecognized and potentially at risk: a group of young caregivers. The aim of this study was to explore the lived experience of individuals who provided care for a family member with Multiple Sclerosis during their adolescence. This qualitative, retrospective, hermeneutic study used interviews with adults who were once adolescent caregivers for a family member with Multiple Sclerosis. A five-step process for data analysis and interpretation was followed, and two common themes were identified: invisibility and support. Participants identified invisibility in their role, by family, healthcare, and the community. A discussion as to why some adolescents take on the caregiving role, while other siblings don't is included. Participants discussed their support by sharing their pre-caregiving experiences, role change, daily routines and tasks, future outcomes after caregiving, and their needs and desires as adolescent caregivers. The results of this study provide nurses, other health professionals, and the MS community with a better understanding of adolescent caregiver experiences in MS.
DOI
https://doi.org/10.7275/14245535
Recommended Citation
Crizer, Renee, "MAKING THE INVISIBLE VISIBLE: ADOLESCENT CAREGIVER EXPERIENCES IN MULTIPLE SCLEROSIS" (2019). Doctoral Dissertations. 1661.
https://doi.org/10.7275/14245535
https://scholarworks.umass.edu/dissertations_2/1661
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial 4.0 License