Grounded in Experience: A Collaborative Approach to Resource Development for Adults with Ehlers-Danlos Syndrome

Author

Morgan Kam, San Jose State University

Publication Date

Fall 2025

Degree Type

Doctoral Project

Degree Name

Doctor of Occupational Therapy

Department

Occupational Therapy

First Advisor

Graham Teaford

Second Advisor

Caitlin Greene

Third Advisor

Courtney Boitano

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