Wheelchair user’s voice: a pilot study in Indonesia

Abstract

27There is a significant unmet need for appropriate wheelchairs worldwide. As a whole, studies 28 suggest that appropriate wheelchairs have a positive impact on the quality of life and health of 29 wheelchair users, which is consistent with the goals and outcomes in more resourced settings, 30 4 71 10]. Efforts to disseminate these tools are substantial -they are widely promoted by different 72 organizations (e.g. WFOT, WCPT, ISWP, ISPO), they are translated into several languages, and 73 they are being adopted as the basis for global training [11,12], and competency evaluations [13]. 74In spite of these dissemination efforts, there has been relatively little change in the 75 wheelchair sector, and governments, private companies, and not-for-profits continue to distribute 76 wheelchairs that would not be considered 'appropriate' [6] through the service delivery approach 77 that does not include all 8 steps recommended by WHO [7]. There are two key reasons that 78 organizations do not universally adopt these consensus approaches. First, policies that dictate the 79 type of wheelchair service provision are weak or non-existent in many countries where the need 80 is greatest, and therefore organizations are not obligated to adhere to specific service or product 81 quality standards. Second, there is a paucity of evidence that providing wheelchairs through the 82 approach outlined by WHO, which is costlier and requires a long-term commitment, addresses 83 the needs for wheelchairs users more efficiently or effectively. 84These two reasons are closely linked and related to a lack of objective evidence about the 85 marginal benefits of providing appropriate wheelchairs through a costlier 8-step approach 86 (described by WHO) versus simply giving a standard hospital-style wheelchair to someone who 87 requests it, which continues to be the standard of care in most countries. Subjective evidence 88 indicating that hospital-style wheelchairs fail quickly in the community were published as early 89 as 1990 [4,14], but investigated only a small number of wheelchairs and were geographically 90 focused on India. Interest about the impact of wheelchair service increased as the sector began to 91 coordinate in 2006 when the WHO became involved [15], and researchers began to collect and 92 publish outcome data. For instance, a cross-sectional study on 188 wheelchair users who 93 received basic wheelchairs without formal service revealed that 93.1% of the wheelchairs will 5 94 still in use after an average of 18 months and that receiving the wheelchair was associated with a 95 significant increase in independence and significantly decreased pressure ulcer incidence [16]. 96 These strong positive results bolstered the argument that the costlier approach promoted by the 97 WHO may not be necessary. Meanwhile, because the study was cross-sectional and investigated 98 a group who received a single type of wheelchair, it does not provide conclusive evidence of the 99 relative value of providing wheelchairs through WHO's 8-step...