Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study
BackgroundPatients with hypermobile Ehlers–Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remai...
| Main Authors: | , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-12-01
|
| Series: | Frontiers in Medicine |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fmed.2022.1056438/full |
| _version_ | 1811199216448438272 |
|---|---|
| author | Tom A. Doyle Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson |
| author_facet | Tom A. Doyle Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson |
| author_sort | Tom A. Doyle |
| collection | DOAJ |
| description | BackgroundPatients with hypermobile Ehlers–Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remain unclear. The purpose of this qualitative study was to understand patients’ personal experiences with CAM and its role in their symptom management.Materials and methodsThirty individuals living with hEDS completed a brief online survey related to their CAM use. Thereafter, in-depth interviews were conducted with 24 of the survey respondents, qualitatively investigating their experiences with CAM. Data were analyzed using thematic analysis.ResultsParticipants described massage therapy (N = 21), medical cannabis (N = 12), and mindfulness (N = 13) as some of the most useful CAM modalities for managing symptoms related to hEDS, but they expressed a general interest in pursuing any treatment that could potentially reduce their chronic pain. They suggested an overall trust in CAM modalities and practitioners and ascribed greater empathy to CAM practitioners than to conventional medical providers. However, they also described a critical skepticism of CAM (and conventional) therapies and recounted instances of injury from such treatments.ConclusionParticipants made extensive use of CAM therapies. They described both critical benefits as well as harms from the use of these non-conventional modalities. These results underscore the importance of clinicians maintaining communicative and compassionate relationships with their patients, and of an openness to the discussion and use of CAM treatments. |
| first_indexed | 2024-04-12T01:44:18Z |
| format | Article |
| id | doaj.art-b8168719803e4c809fabac5ba7356287 |
| institution | Directory Open Access Journal |
| issn | 2296-858X |
| language | English |
| last_indexed | 2024-04-12T01:44:18Z |
| publishDate | 2022-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Medicine |
| spelling | doaj.art-b8168719803e4c809fabac5ba73562872022-12-22T03:53:07ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2022-12-01910.3389/fmed.2022.10564381056438Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative studyTom A. Doyle0Colin M. E. Halverson1Colin M. E. Halverson2Colin M. E. Halverson3Colin M. E. Halverson4Colin M. E. Halverson5Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, United StatesCenter for Bioethics, Indiana University School of Medicine, Indianapolis, IN, United StatesDepartment of Medicine, Indiana University School of Medicine, Indianapolis, IN, United StatesDepartment of Anthropology, Indiana University, Indianapolis, IN, United StatesRegenstrief Institute, Indianapolis, IN, United StatesCharles Warren Fairbanks Center for Medical Ethics, Indianapolis, IN, United StatesBackgroundPatients with hypermobile Ehlers–Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remain unclear. The purpose of this qualitative study was to understand patients’ personal experiences with CAM and its role in their symptom management.Materials and methodsThirty individuals living with hEDS completed a brief online survey related to their CAM use. Thereafter, in-depth interviews were conducted with 24 of the survey respondents, qualitatively investigating their experiences with CAM. Data were analyzed using thematic analysis.ResultsParticipants described massage therapy (N = 21), medical cannabis (N = 12), and mindfulness (N = 13) as some of the most useful CAM modalities for managing symptoms related to hEDS, but they expressed a general interest in pursuing any treatment that could potentially reduce their chronic pain. They suggested an overall trust in CAM modalities and practitioners and ascribed greater empathy to CAM practitioners than to conventional medical providers. However, they also described a critical skepticism of CAM (and conventional) therapies and recounted instances of injury from such treatments.ConclusionParticipants made extensive use of CAM therapies. They described both critical benefits as well as harms from the use of these non-conventional modalities. These results underscore the importance of clinicians maintaining communicative and compassionate relationships with their patients, and of an openness to the discussion and use of CAM treatments.https://www.frontiersin.org/articles/10.3389/fmed.2022.1056438/fullEhlers–Danlos Syndromecomplementary therapiesalternative medicineholistic healthhomeopathyintegrative medicine |
| spellingShingle | Tom A. Doyle Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Colin M. E. Halverson Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study Frontiers in Medicine Ehlers–Danlos Syndrome complementary therapies alternative medicine holistic health homeopathy integrative medicine |
| title | Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study |
| title_full | Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study |
| title_fullStr | Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study |
| title_full_unstemmed | Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study |
| title_short | Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study |
| title_sort | use of complementary and alternative medicine by patients with hypermobile ehlers danlos syndrome a qualitative study |
| topic | Ehlers–Danlos Syndrome complementary therapies alternative medicine holistic health homeopathy integrative medicine |
| url | https://www.frontiersin.org/articles/10.3389/fmed.2022.1056438/full |
| work_keys_str_mv | AT tomadoyle useofcomplementaryandalternativemedicinebypatientswithhypermobileehlersdanlossyndromeaqualitativestudy AT colinmehalverson useofcomplementaryandalternativemedicinebypatientswithhypermobileehlersdanlossyndromeaqualitativestudy AT colinmehalverson useofcomplementaryandalternativemedicinebypatientswithhypermobileehlersdanlossyndromeaqualitativestudy AT colinmehalverson useofcomplementaryandalternativemedicinebypatientswithhypermobileehlersdanlossyndromeaqualitativestudy AT colinmehalverson useofcomplementaryandalternativemedicinebypatientswithhypermobileehlersdanlossyndromeaqualitativestudy AT colinmehalverson useofcomplementaryandalternativemedicinebypatientswithhypermobileehlersdanlossyndromeaqualitativestudy |