{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T16:56:19Z","timestamp":1767200179535,"version":"3.48.0"},"reference-count":51,"publisher":"MDPI AG","issue":"1","license":[{"start":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T00:00:00Z","timestamp":1767139200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Director\u2019s Research Award, School of Kinesiology, Louisiana State University, Baton Rouge, LA, USA"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>Background: Hypermobile Ehlers\u2013Danlos Syndrome (hEDS) results in multiple, complex health-related risks and associated fear of movement (kinesiophobia). Therefore, the purpose of this research study was to examine how a holistic, embodied, and performative movement program (EDS-HEART) can affect body schema, physical and mental health, and lifestyle, which contribute to the joy of movement and physical activity participation among adult women with hEDS. Methods: This was a hermeneutic, phenomenological, quasi-experimental, and community-based research study among six women with hEDS, who participated in the EDS-HEART movement program at a local physical therapy clinic. The seven-week program incorporated stretching and strength training activities as well as performative-thematic movement sequences. Results: Based on the qualitative analysis, three themes emerged regarding reasons for the joy of the EDS-HEART program: (a) improved body schema: body awareness, confidence, posture, and proprioception; (b) highly motivating program: holistic, embodied, performative, pleasant, and safe; and (c) psychosocial reasons: supportive setting, sense of pleasure and euphoria, and freed from social comparisons and the fear of movement. Conclusions: Based on the study results, public health experts should develop and implement easily accessible and holistic movement programs among people with hEDS and similar conditions to improve physical health, psychosocial health, and the joy of movement.<\/jats:p>","DOI":"10.3390\/ijerph23010055","type":"journal-article","created":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T16:34:23Z","timestamp":1767198863000},"page":"55","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Reasons for Participating in the EDS-HEART Program: Holistic and Performative Within a Supportive Community"],"prefix":"10.3390","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5892-4156","authenticated-orcid":false,"given":"Maria","family":"Kosma","sequence":"first","affiliation":[{"name":"School of Kinesiology, Louisiana State University, Baton Rouge, LA 70803, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nick","family":"Erickson","sequence":"additional","affiliation":[{"name":"School of Theater, Louisiana State University, Baton Rouge, LA 70803, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ashley L.","family":"Hinerman","sequence":"additional","affiliation":[{"name":"Woman\u2019s Center for Wellness, Baton Rouge, LA 70820, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"suffix":"III","given":"Ira A.","family":"Anderson","sequence":"additional","affiliation":[{"name":"School of Theater, Louisiana State University, Baton Rouge, LA 70803, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2025,12,31]]},"reference":[{"key":"ref_1","unstructured":"Landes, D.A. (2014). Phenomenology of Perception, Routledge."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"83","DOI":"10.30958\/ajspo.10-2-2","article-title":"Phenomenological body schema as motor habit in skill acquisition\u2014Intentionality is in action","volume":"10","author":"Kosma","year":"2023","journal-title":"Athens J. Sports"},{"key":"ref_3","first-page":"1","article-title":"Body as being in the world to explain the phantom limb syndrome. What does this mean for movement programming?","volume":"7","author":"Kosma","year":"2024","journal-title":"Anat. Physiol. Biochem. Int. J."},{"key":"ref_4","doi-asserted-by":"crossref","unstructured":"Kosma, M. (2025). Editorial: A holistic and embodied approach to movement programming for health and well-being. Front. Public. Health, 13.","DOI":"10.3389\/fpubh.2025.1688972"},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"1","DOI":"10.21926\/obm.icm.2503032","article-title":"The multiple, embodied positive effects of a community-based aerial sling class: Improved body schema, fitness, mental health, and diet","volume":"10","author":"Kosma","year":"2025","journal-title":"OBM Integr. Complement. Med."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"16","DOI":"10.31459\/turkjkin.1617035","article-title":"Reasons for the long-lasting participation in a community-based aerial sling class: Creative, performative, playful, challenging, and rewarding without feeling like a workout","volume":"11","author":"Kosma","year":"2025","journal-title":"Turk. J. Kinesiol."},{"key":"ref_7","first-page":"173","article-title":"Skill development vs. performativity among beginners in aerial practice: An embodied and meaningful learning experience","volume":"41","author":"Kosma","year":"2021","journal-title":"Community Health Equity Res. Policy"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1007\/s10746-024-09740-7","article-title":"\u201cThe union of the soul and the body\u201d: Merleau-Ponty on being in the world","volume":"48","author":"Wehiger","year":"2025","journal-title":"Hum. Stud."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"327","DOI":"10.1080\/00336297.2024.2333570","article-title":"Positive effects of physical theater on body schema among college students","volume":"76","author":"Kosma","year":"2024","journal-title":"Quest"},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"Kosma, M., Erickson, N., and Gremillion, A. (2024). The embodied nature of physical theater: Artistic expression, emotions, interactions. Res. Dance Educ., 1\u201326.","DOI":"10.1080\/14647893.2024.2331128"},{"key":"ref_11","unstructured":"Stenner, P., Cromby, J., Motzkau, J., Yen, J., and Haosheng, Y. (2011). The Notion of Embodied Knowledge. Theoretical Psychology: Global Transformations and Challenges, Captus Press."},{"key":"ref_12","doi-asserted-by":"crossref","unstructured":"Durt, C., Fuchs, C.T., and Tewes, C. (2017). Intercorporeality and intersubjectivity: A phenomenological exploration of embodiment. Embodiment, Enaction, and Culture: Investigating the Constitution of the Shared World, MIT Press Scholarship Online.","DOI":"10.7551\/mitpress\/9780262035552.001.0001"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"224","DOI":"10.1080\/15290824.2019.1622706","article-title":"The embodiment of aerial practice: Body, mind, emotion","volume":"20","author":"Kosma","year":"2020","journal-title":"J. Dance Educ."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"14","DOI":"10.7575\/aiac.ijkss.v.8n.1p.14","article-title":"The love of aerial practice: Art, embodiment, phronesis","volume":"8","author":"Kosma","year":"2020","journal-title":"Int. J. Kinesiol. Sports Sci."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1080\/14647893.2020.1784868","article-title":"The effectiveness of performative aerial practice on mental health and the love of movement","volume":"22","author":"Kosma","year":"2021","journal-title":"Res. Dance Educ."},{"key":"ref_16","unstructured":"Stanford Encyclopedia of Philosophy (2025, September 13). Maurice Merleau-Ponty. Available online: https:\/\/plato.stanford.edu\/entries\/merleau-ponty\/#NatuPercStruBeha."},{"key":"ref_17","unstructured":"Harris (2025, September 14). Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Available online: https:\/\/www.eds.clinic\/articles\/the-link-betwen-eds-and-pots."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"48","DOI":"10.1002\/ajmg.c.31538","article-title":"Hypermobile Ehlers-Danlos (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history","volume":"175","author":"Tinkle","year":"2017","journal-title":"Am. J. Med. Genet. C Semin. Med. Gener."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"e031365","DOI":"10.1136\/bmjopen-2019-031365","article-title":"Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: A national electronic cohort study and case\u2013control comparison","volume":"9","author":"Demmler","year":"2019","journal-title":"BMJ Open"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"429","DOI":"10.36076\/ppj.2020\/23\/429","article-title":"Ehlers-Danlos syndrome: An analysis of the current treatment options","volume":"23","author":"Song","year":"2020","journal-title":"Pain Physician"},{"key":"ref_21","first-page":"134","article-title":"Management of hypermobility in aesthetic performing artists: A review","volume":"Volume 34","author":"Callahan","year":"2022","journal-title":"Orthopaedic Physical Therapy Practice"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"148","DOI":"10.1002\/ajmg.c.31539","article-title":"A framework for the classification of joint hypermobility and related conditions","volume":"175","author":"Castori","year":"2017","journal-title":"Am. J. Med. Genet. Part C Semin. Med. Genet."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"1189","DOI":"10.1093\/ptj\/pzz078","article-title":"Recognizing and effectively managing hypermobility-related conditions","volume":"99","author":"Russek","year":"2019","journal-title":"Phys. Ther."},{"key":"ref_24","unstructured":"(2025, September 14). The Ehlers-Danlos Society. What is EDS?. Available online: https:\/\/www.ehlers-danlos.com\/what-is-eds\/."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"1412","DOI":"10.1093\/rheumatology\/kew032","article-title":"Orthostatic intolerance and fatigue in the hypermobility type of Ehlers-Danlos Syndrome","volume":"55","author":"Rombaut","year":"2016","journal-title":"Rheumatology"},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"175","DOI":"10.1002\/ajmg.c.31542","article-title":"Chronic fatigue in Ehlers\u2013Danlos syndrome\u2014Hypermobile type","volume":"175","author":"Hakim","year":"2017","journal-title":"Am. J. Med. Genet. Part C Semin. Med. Genet."},{"key":"ref_27","first-page":"315","article-title":"Functional adaptation of tendon and skeletal muscle to resistance training in three patients with genetically verified classic Ehlers Danlos Syndrome","volume":"4","author":"Svensson","year":"2014","journal-title":"Muscles Ligaments Tendons J."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"60105","DOI":"10.12775\/QS.2025.41.60105","article-title":"Rehabilitation and physical activity in Ehlers-Danlos Syndrome: A review of interventions and outcomes","volume":"41","author":"Stasiak","year":"2025","journal-title":"Qual. Sport"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"1391","DOI":"10.1080\/09638288.2016.1196396","article-title":"The association between muscle strength and activity limitations in patients with the hypermobility type of Ehlers\u2013Danlos syndrome: The impact of proprioception","volume":"39","author":"Scheper","year":"2016","journal-title":"Disabil. Rehabil."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"2893","DOI":"10.2147\/JPR.S377790","article-title":"Multidisciplinary approach to treating chronic pain in patients with Ehlers\u2013Danlos syndrome: Critically appraised topic","volume":"15","author":"Whalen","year":"2022","journal-title":"J. Pain Res."},{"key":"ref_31","doi-asserted-by":"crossref","unstructured":"Leplaa, H.J., T\u00f6njes, J.A., Bouterse, M., Soppe, K.F.B., and Klugkist, I. (2025). Applying qualitative methods to experimental designs: A tutorial for the behavioral sciences. PLoS ONE, 20.","DOI":"10.1371\/journal.pone.0324936"},{"key":"ref_32","unstructured":"Perry, J. (2025, September 14). Exercise and Movement for Adults with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. EDS. Available online: https:\/\/www.ehlers-danlos.org\/information\/exercise-and-movement-for-adults-with-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders\/."},{"key":"ref_33","first-page":"100189","article-title":"Exercise and rehabilitation in people with Ehlers-Danlos Syndrome: A systematic review","volume":"4","author":"Mittal","year":"2022","journal-title":"Arch. Rehabil. Res. Clin. Transl."},{"key":"ref_34","first-page":"364","article-title":"The role of physical therapy in Ehlers-Danlos Syndrome management","volume":"13","author":"Huang","year":"2023","journal-title":"Rheumatology"},{"key":"ref_35","doi-asserted-by":"crossref","unstructured":"Flyvbjerg, B. (2001). Making Social Science Matter: Why Social Inquiry Fails and How It Can Succeed Again, Cambridge University Press.","DOI":"10.1017\/CBO9780511810503"},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1080\/1464935042000250195","article-title":"Phronetic planning research: Theoretical and methodological reflections","volume":"5","author":"Flyvbjerg","year":"2004","journal-title":"Plan. Theory Pract."},{"key":"ref_37","first-page":"89","article-title":"Qualitative research method in social and behavioural science research","volume":"5","author":"Anas","year":"2022","journal-title":"Int. J. Manag. Soc. Sci. Peace Confl. Stud."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"181","DOI":"10.3126\/bodhi.v5i1.8053","article-title":"Hermeneutic phenomenological research method simplified","volume":"5","author":"Kafle","year":"2011","journal-title":"Bodhi An. Interdiscip. J."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"52","DOI":"10.4172\/2472-1654.100093","article-title":"A critical overview of interpretative phenomenological analysis: A contemporary qualitative research approach","volume":"2","author":"Tuffour","year":"2017","journal-title":"J. Health Commun."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"1609406920955118","DOI":"10.1177\/1609406920955118","article-title":"Iterative thematic inquiry: A new method for analyzing qualitative data","volume":"19","author":"Morgan","year":"2020","journal-title":"Int. J. Qual. Methods"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1080\/0142159X.2022.2057287","article-title":"A practical guide to reflexivity in qualitative research: AMEE guide No. 149","volume":"45","author":"Stalmeijer","year":"2023","journal-title":"Med. Teach."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"652","DOI":"10.1177\/1744987120927206","article-title":"Purposive sampling: Complex or simple? Research case examples","volume":"25","author":"Campbell","year":"2020","journal-title":"J. Res. Nurs."},{"key":"ref_43","doi-asserted-by":"crossref","unstructured":"Vasileiou, K., Barnett, J., Thorpe, S., and Young, T. (2018). Characterising and justifying sample size sufficiency in interview-based studies: Systematic analysis of qualitative health research over a 15-year period. BMC Med. Res. Methodol., 18.","DOI":"10.1186\/s12874-018-0594-7"},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"219","DOI":"10.4103\/jpgm.JPGM_230_21","article-title":"The importance of small samples in medical research","volume":"67","author":"Indrayan","year":"2021","journal-title":"J. Postgrad. Med."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1016\/j.jbmt.2014.04.003","article-title":"Effectiveness of body awareness interventions in fibromyalgia and chronic fatigue syndrome: A systematic review and meta-analysis","volume":"19","author":"Courtois","year":"2015","journal-title":"J. Bodyw. Mov. Ther."},{"key":"ref_46","doi-asserted-by":"crossref","unstructured":"Winter, L., Huang, Q., Sertic, J.V.L., and Konczak, J. (2022). The effectiveness of proprioceptive training for improving motor performance and motor dysfunction: A systematic review. Front. Rehabilit Sci., 3.","DOI":"10.3389\/fresc.2022.830166"},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"9","DOI":"10.30958\/ajspo.11-1-1","article-title":"Gadamer\u2019s hermeneutic universality of play: The greatest form of human play is art and its signification to movement education","volume":"11","author":"Kosma","year":"2024","journal-title":"Athens J. Sports"},{"key":"ref_48","unstructured":"Weinsheimer, J., and Marshall, D.G. (2012). Truth and Method, Continuum International Publishing Group. [2nd ed.]."},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"557","DOI":"10.1037\/emo0000718","article-title":"Social interaction context shapes emotion recognition through body language, not facial expressions","volume":"21","author":"Abramson","year":"2021","journal-title":"Emotion"},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"242","DOI":"10.1038\/nrn1872","article-title":"Towards the neurobiology of emotional body language","volume":"7","year":"2006","journal-title":"Nat. Rev. Neurosci."},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"939","DOI":"10.1080\/02699931.2015.1035229","article-title":"Contributions of facial expressions and body language to the rapid perception of dynamic emotions","volume":"30","author":"Martinez","year":"2016","journal-title":"Cogn. Emot."}],"container-title":["International Journal of Environmental Research and Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1660-4601\/23\/1\/55\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T16:35:08Z","timestamp":1767198908000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1660-4601\/23\/1\/55"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12,31]]},"references-count":51,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,1]]}},"alternative-id":["ijerph23010055"],"URL":"https:\/\/doi.org\/10.3390\/ijerph23010055","relation":{},"ISSN":["1660-4601"],"issn-type":[{"value":"1660-4601","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12,31]]}}}