The Efficacy of Virtual Group Coaching on the Self-Determination of People with Ehlers-Danlos Syndrome

INTRODUCTIONThe Ehlers-Danlos Syndromes (EDS) are a family of 13 genetic connective tissue disorders that affect negatively physical and psychosocial health which in turns have been found to decrease their quality of life and self-determination (Baeza-Velasco et al., 2019; Bennet et al., 2021; Estrella & Fraizer, 2024; Tinkle et al., 2017; Palomo-Toucedo et al., 2020). Limited supports and services, including occupational therapy, are available for those with EDS (Estrella & Frazier, 2024; McDonald et al., 2023; Reychler et al., 2021). Those with EDS have requested better services to support their self-determination (Estrella & Frazier, 2024). Coaching has shown positive impacts on self-determination in adults with chronic conditions within and outside of occupational therapy (Kessler & Graham, 2015; Nott et al., 2021; McCusker et al., 2016). Group coaching is a novel intervention demonstrating positive outcomes on self-determination but has not yet been investigated within occupational therapy or with those with EDS (Fainstad et al., 2022; Losch et al., 2016; Mbokota and Reid, 2022). OBJECTIVESThe aims of this pilot study were two-fold: (1) determining the feasibility of utilizing virtual group coaching with adults with EDS; and (2) exploring the impact of virtual group coaching on self-determination in adults with EDS. METHODSA purposeful sample of 8 adults with hypermobile EDS living in the United States was recruited through videos posted on social media sites frequented by those with EDS. Two groups of 4 adults each received 10 sessions of synchronous virtual group coaching with a trained coach. Feasibility was assessed after group completion by participants answering the Acceptability of Intervention Measure (AIM), the Intervention Appropriateness Measure (IAM), and the Feasibility of Intervention Measure (FIM). The impact of group coaching on self-determination was assessed pre and post group coaching using the Sense of Belonging Instrument (SOBI), the General Self-Efficacy Scale (GSE), the Relationship Closeness Scale (RC), and the Canadian Occupational Performance Measure (COPM); all self-report measures. Interferential statistical analysis and descriptive analysis were performed. Note: This pilot study was conducted in parallel to the study conducted by Alana Scalzo’s The Efficacy of Virtual Group Coaching on the Self-Determination of Adults with Spinal Cord Injury and used the same methodology except for recruitment. RESULTSFeasibility scores were above the pre-determined cut-off of 3 across all three measurement tools (AIM m=4.72 (SD=0.45), IAM m=4.81 (SD=0.40), FIM m=4.97 (SD 0.17)]. In terms of impact on self-determination, the results were mixed. SOBI-P scores and RC scores in relation to peers showed a statistically significant improvement (p< 0.05) following group coaching. Clinically significant positive changes on the RC in relation to peers were demonstrated as well for 37.5% of the participants’ COPM scores for both Performance and Satisfaction. CONCLUSION In terms of feasibility, participants found group coaching to be acceptable, implementable, and feasible. Preliminary results demonstrated statistically significant impacts of virtual group coaching on sense of belonging and relationship closeness in a sample of 8 participants with EDS. Adults with EDS can experience flare-ups, as is suggested by decrease in scores experienced by some participants in this study. With a small sample size, these flare-ups complicated that outcome analysis. Further studies in group coaching for the EDS population should be considered with larger sample size and the ability to measure flare-ups separately from outcome measures. Synopsis: A small study of group coaching with 8 adults with Ehlers-Danlos Syndrome was conducted. Group coaching was deemed feasible, appropriate, and acceptable to implement by the participants. Positive changes were seen in the sense of belonging and relationship closeness of the coaching peers. Study participants responded positively to group coaching especially in terms of sense of belonging and relationship closeness. Close to 40% of participants reported a positive change in their daily lives following group coaching. Further studies should be done to further explore the impact of group coaching on adults with Ehlers-Danlos Syndrome. Acknowledgments: Dr. Namrata Grampurohit from Thomas Jefferson University

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