JMIR Publications

ABSTRACT

Background:

Acquiring information about, and living with an amputation (or limb differential) is a lifelong endeavor. While medical institutions address the immediate medical needs of amputees, information regarding how to live life as an amputee comes from numerous sources, one of which are amputee support groups.

Objective:

Understanding the reasons why amputees join support groups, leave support groups, possibly return to support groups, and how technology, specifically, virtual reality might play a role are important questions this study explored. The results are intended to provide data for support groups to help them be more impactful for their amputee participants.

Methods:

A 38 item online survey, approved by the NOVA Southeastern University IRB was administered between April and September 2018. The survey was divided into four sections including: Demographics, Limb Loss History, Amputee Support Group Participation, and Technology Usage. The formats of the items in the survey were multiple-choice, drop-down menu, check boxes (designated for single and multiple answers). Explanation boxes were also provided for some questions in order to give participants a chance to choose the “other” option, and provide open-ended responses. Fifty-nine amputees were enrolled in the study. Of these, 54 completed the survey.

Results:

The results suggest that early goals 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 that simply being and amputee may not provide sufficient connections for developing long term social relationships. Additionally, while most respondents were comfortable with technology, there were a range of opinions regarding the value technology may provide to the support group experience. While communications technology can overcome challenges of geographic distance and isolation, the ability to actually learn skills from a virtual environment was unclear and deserves additional study.

Conclusions:

The results suggest there are 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 with agendas primarily driven by participants 3. Support group participation is also driven by the desire to: a. Increase functionality by developing skills b. Become familiar with prosthetic technology c. Have more than amputation in common with other participants d. Participate at the designated meeting time and location 4. The use of virtual and other technology should support patients’ needs