Creating a consumer-friendly resource to assist persons with Amyotrophic Lateral Sclerosis (ALS) in navigating the power wheelchair selection process

ABSTRACT

Persons living with Amyotrophic Lateral Sclerosis (ALS), a fatal neurodegenerative disease, are often asked to make important decisions regarding power wheelchair (PWC) selection soon after receiving a diagnosis. There is currently a paucity of consumer-friendly information to aid clients living with ALS in better understanding the long-term functional implications of decisions made during the PWC selection process. The purpose of this action research project was to identify the specific considerations and choices required during the PWC selection process to use as the basis for creating a concise, educational video tool that emphasizes functional independence and self-advocacy for clients living with ALS. Semi-structured interviews of a panel of expert stakeholders were conducted to isolate important considerations for PWC selection in clients living with ALS. Qualitative data were collected through coded interviews and used to prioritize themes that were incorporated into an educational video. Once the draft video was created, the expert panel was provided time to review and critique the video prior to the creation of a professional quality video. Major themes identified and analyzed included environmental considerations, PWC component options, self-advocacy, and transportation. The video resource aims to be a resource for beginning a conversation about PWC options to make the PWC evaluation and selection process less daunting for clients and their caregivers.

KEYWORDS:

• Seating
• Positioning and Support Surfaces
• Wheelchair Transportation
• Neuromuscular Impairment
• Activities of Daily Living
• Education

Acknowledgments

The authors would like to acknowledge Barbara Doucet PhD, LOTR and Jeremy Schroth for their expertise and dedication to this project. The authors would also like to acknowledge Team Gleason, the local wheelchair vendors and manufacturer representatives, our expert panel, and most importantly the community of individuals living with ALS who provided continued support, shared their experiences and knowledge, and guided our group through this project.