Wheelchair user's voice: a pilot study in Indonesia

Abstract

There is a significant unmet need for appropriate wheelchairs worldwide. As a whole, studies suggest that appropriate wheelchairs have a positive impact on the quality of life and health of wheelchair users, which is consistent with the goals and outcomes in more resourced settings, and that when services are provided along with the wheelchair, the positive impact is increased. The gaps in previous research, along with the global focus on evidence-based decision making, were strong motivators for carrying out a study that contrasted the outcomes associated with different types of wheelchair service provision strategies. This study used a sample of participants randomly selected from a waitlist (N = 142) or people who used wheelchairs as their primary means of mobility. Two different groups were included, the 8-Steps group and the Standard of Care (SOC)group. The 8-Steps group (N= 118) received wheelchairs from service providers trained using the World Health Organization (WHO) 8-Step process and the SOC group (N=24) received hospital-style wheelchairs and standard care. Interviews were conducted at baseline and a follow up 3-6 months after distribution, to collect data using the following tools: International Society of Wheelchair Professionals (ISWP) Minimum Uniform Data Set (MUD), Wheelchair Skills Test Questionnaire (WST-Q), and Life Satisfaction Questionnaire (LiSAT-11), and Breakdown and Adverse Consequences Questionnaire (BAC-Q).Across-group statistical comparisons were not attempted. The majority of participants from the 8-Steps group used their wheelchair every day for more than 8 hours a day. In contrast, the SOC group used their wheelchairs less than 6 hours a day. Both groups traveled less than 500 meters per day. Participants WST-Q scores were low, <65%, at both baseline and endline, with a significant decrease at endline. No significant differences were found when comparing device satisfaction across wheelchairs types. The majority (n=87; 72.7%) of 8-Steps group participants reported performing wheelchair maintenance. Less than half (n=9; 37.5%) of the SOC group reported performing maintenance activities. For both groups, the most reported maintenance activity was wiping or washing the wheelchair, and most wheelchair repairs were performed by the study participant or a family member. The results of this study demonstrate the importance of the WHO 8-steps training package for wheelchair provision. Further studies, training services, and wheelchair skills are needed in low and middle-income countries for both wheelchair users and service providers.