Publication Date
Fall 2025
Degree Type
Doctoral Project
Degree Name
Occupational Therapy Doctorate (OTD)
Department
Occupational Therapy
First Advisor
Graham Teaford
Keywords
Ehlers-Danlos syndrome (EDS), Occupation-centered resources, Self-management, Educational resource development
Abstract
Background: Ehlers-Danlos syndrome (EDS) is a complex connective tissue disorder that significantly affects daily occupations, participation, and quality of life, yet early support for individuals pursuing or newly receiving a diagnosis remains limited. Occupational therapy (OT) is uniquely positioned to address these challenges through interventions that promote self-management and functional engagement.
Purpose: This project aimed to develop an experience- and evidence-informed educational resource for individuals undergoing or newly receiving an EDS diagnosis, while increasing awareness of OT’s role in managing this chronic, multisystemic condition.
Methods: A mixed-methods approach integrated qualitative insights from interviews, online support groups, and practitioner feedback. A draft resource and accompanying flyer were evaluated via a Qualtrics, with quantitative data summarized descriptively, and qualitative responses thematically analyzed.
Results: Nine participants completed the survey. Respondents rated the resource as clear, relevant, and aligned with lived experience. Key sections, including Tools and Adaptive Equipment, Knowledge and Self-Advocacy, and Building Your Medical Portfolio, were identified as most helpful, and clinicians found the resource useful and feasible to implement, noting value in practical strategies and OT-focused guidance.
Conclusions: Findings support the value of client-informed, occupation-centered resources in enhancing early self-management and advocacy for individuals with EDS. The resource promotes engagement and strengthens interdisciplinary care, underscoring OT’s essential contribution to chronic condition management.
Recommended Citation
Kam, Morgan, "Grounded in Experience: A Collaborative Approach to Resource Development for Adults with Ehlers-Danlos Syndrome" (2025). Doctoral Projects. 196.
DOI: https://doi.org/10.31979/etd.ajtd-v5cj
https://scholarworks.sjsu.edu/etd_doctoral/196
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