Generalized joint hypermobility (GJH) is highly prevalent among patients diagnosed with chronic pain. When GJH is accompanied by pain in ≥4 joints over a period ≥3 months in the absence of other conditions that cause chronic pain, the hypermobility syndrome (HMS) may be diagnosed. In addition, GJH is also a clinical sign that is frequently present in hereditary diseases of the connective tissue, such as the Marfan syndrome, osteogenesis imperfecta, and the Ehlers-Danlos syndrome. However, within the Ehlers-Danlos spectrum, a similar subcategory of patients having similar clinical features as HMS but lacking a specific genetic profile was identified: Ehlers-Danlos syndrome hypermobility type (EDS-HT). Researchers and clinicians have struggled for decades with the highly diverse clinical presentation within the HMS and EDS-HT phenotypes (Challenge 1) and the lack of understanding of the pathological mechanisms that underlie the development of pain and its persistence (Challenge 2). In addition, within the HMS/EDS-HT phenotype, there is a high prevalence of psychosocial factors, which again presents a difficult issue that needs to be addressed (Challenge 3). Despite recent scientific advances, many obstacles for clinical care and research still remain. To gain further insight into the phenotype of HMS/EDS-HT and its mechanisms, clearer descriptions of these populations should be made available. Future research and clinical care should revise and create consensus on the diagnostic criteria for HMS/EDS-HT (Solution 1), account for clinical heterogeneity by the classification of subtypes within the HMS/EDS-HT spectrum (Solution 2), and create a clinical core set (Solution 3).
Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required.
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Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required.
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