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Author ORCID Identifier


Open Access Dissertation

Document Type


Degree Name

Doctor of Philosophy (PhD)

Degree Program


Year Degree Awarded


Month Degree Awarded


First Advisor

Karen Kalmakis

Second Advisor

Genevieve Chandler

Third Advisor

Paula Pietromonaco

Subject Categories



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.


Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial 4.0 License

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Nursing Commons