Purpose: To evaluate the benefits of participating in an online support group for caregivers of children with a colorectal condition or adult patients with a similar condition.
Methods: An electronic survey was administered to members of an international online support group (18 items for caregivers; 15 for patients). Items included demographics, medical diagnosis, potential benefits, and overall experiences in the group. Quantitative results were summarized as descriptive trends, while qualitative responses were summarized thematically.
Results: Respondents (102 caregivers, 6 patients) were primarily female, 35-44 years old, Caucasian, and resided in the United States. Most respondents learned about the support group from medical providers or online search. Cited benefits included learning information, gaining support, forming connections through shared experience, and utilizing a unique resource. Being a member of the group was helpful to respondents, improved their mental health and access to health information, and they would recommend the group to others.
Conclusion: Participation in online support groups offers educational and emotional benefits to patients/caregivers which complements the medical support from their colorectal teams. Thus, colorectal providers need to be aware of the availability and potential benefits of these groups, and encourage their patients/caregivers to be actively involved.
Keywords: Anorectal malformations (ARM); Fecal incontinence; Hirschsprung disease; Parents’/Caregivers’/Patients’ perspectives; Psychosocial functioning; Support group.
© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.