Occupational Adaptation in Individuals with Ehler-Danlos Hypermobility Type: A Qualitative Study of Personal Perspectives

Abstract: ABSTRACT Purpose:  This study aims to describe how major symptoms of pain and fatigue affect occupational performance and adaptation of individuals with Ehlers-Danlos Hypermobility Type (hEDS). Method: Eleven individuals with hEDS (2017 diagnostic criteria) were interviewed using a semi-structured questionnaire. The data was analysed following Giorgi’s modified five steps descriptive phenomenological method.  Results:  The following six occupational adaptations emerged during data analysis: Experiences of body unconsciousness, conserving energy in activities, goal setting, restricted physical and social environment, new family role, and healthcare system interventions. Conclusions:  Experiences of severe fatigue and episodes of severe pain affected the occupational adaptation of daily performance, routines, occupational choices and social and physical environment. IMPLICATIONS FOR REHABILITATION Occupational therapists working with individuals with hEDS need to take into consideration the impacts of chronic pain and fatigue on occupational performance and identity.