Background: Acquiring information about and living with an amputation (or limb differential) is a lifelong endeavor. Although medical institutions address the immediate medical needs of amputees, information regarding how to live life as an amputee is provided from numerous sources, one of which is amputee support groups.
Objective: This study aimed at understanding why amputees join support groups, leave support groups, and possibly return to support groups as well as how technology, specifically virtual reality, might play a role in supporting patients' needs. The results are intended to provide data for support groups, to increase their impact on amputee participants.
Methods: A 38-item online survey was developed based on the findings of a previous randomized trial. The survey was administered between April and September 2018 and divided into four sections: Demographics, Limb Loss History, Amputee Support Group Participation, and Technology Usage. Items used multiple-choice, drop-down menu, check-box formats with explanation boxes for open-ended responses. Descriptive analyses were performed for both qualitative (open-ended questions) and quantitative data.
Results: Of the 59 amputees enrolled, 54 completed the survey. All the respondents were aged 20-39 years, and nearly half of the older respondents thought audio and video teleconferencing or avatar-based technology would increase participation in support groups. The results suggest that an early goal for amputees who join support groups is to focus on regaining mobility and functionality in order to return to their normal life. Once achieved, the goal transitions to one of social connection with other amputees, although there is a caveat: Simply being an amputee may not provide sufficient connections for developing long-term social relationships. The strongest reason for joining a support group was to learn about living with an amputation, followed by networking and learning new skills.
Conclusions: The results suggest four key takeaways regarding amputee participation in support groups: (1) the needs of participants in amputee support groups change over time; (2) meeting content needs to be relevant to agendas primarily driven by participants; (3) support group participation is also driven by the desire to increase functionality by developing skills, become familiar with prosthetic technology, have more than amputation in common with other participants, and participate at the designated meeting time and location; and (4) the use of technology should support patients' needs.
Keywords: amputation; amputee; support; support group; survey; technology; virtual; virtual reality.
©Edward P Nathan, Sandra L Winkler. Originally published in JMIR Rehabilitation and Assistive Technology (http://rehab.jmir.org), 29.08.2019.