The impact of the World Health Organization 8-steps in wheelchair service provision in wheelchair users in a less resourced setting: a cohort study in Indonesia

For many persons with disabilities access to assistive technology (AT), such as wheelchairs, has been identified as a facilitator to full enjoyment of human rights [1‐3]. Multiple studies in high income countries have concluded that access to wheelchairs is a vital component of rehabilitation and a determining factor in successful participation in society and employment [4‐8]. Approximately 10 % of the world has a disability and 10 % of this section of the population requires a wheelchair because their ability to walk is limited [9]. Unfortunately, only 5 to 15 % of these individualshave access to an appropriate one [10]. Therefore, lack of access to appropriate AT has been a “missing bridge” to human rights and development especially in less resources settings [11‐13]. Most users around the world rely on non-governmental organizations, charitable organizations, and other international organizations to access wheelchairs [14, 15]. International efforts to meet the needs started in the late 1970’s and early 1980’s. Ralf Hotchckiss, a wheelchair user in the United States (US), was a pioneer through Whirlwind Wheelchair by empowering wheelchair users in less resourced settings to build customizable wheelchairs that addressed local needs and incorporated locally available materials [16]. Motivation UK was foundedin the United Kingdom by David Constantine, a wheelchair user himself, as another method by which to meet the need for wheelchairs in less resourced settings [17]. Motivation UK placed emphasis on the clinical training and the service that needed to accompany the delivery of a wheelchair. In the early 2000’s large charitable organizations started mass-distributing wheelchairs [18]. Although this method of provision can reach many people in a relatively short period of time, the donations often do not meet criteria which ensure that each wheelchair will be more helpful to the user than harmful [19, 20]. Many of the donations consist of hospital-style wheelchairs designed for temporary use in institutional settings which do not meet international durability standards [21‐24]. These wheelchairs often lack adjustability, are frequently provided without cushions, and typically do not meet the functional needs of users [22‐25]. In addition, evidence suggests that these wheelchairs are frequently provided without associated services [22‐25]. This means users’ needs are not assessed and not taken into consideration for the wheelchair selection [22, 23, 25]. When the wheelchair is delivered it is not fitted to the user and users are not trained in critical skills such as wheelchair mobility, maintenance, pressure ulcer prevention and proper transfer techniques [22, 23, 25]. Most of the anecdotal evidence has shown that the mass-distribution of wheelchairs without services has negative outcomes such as fatigue, discomfort, postural deformities and pressure ulcers which in the end lead to wheelchair abandonment [20, 21, 23, 26‐29]. Conflicting anecdotal evidence suggests that a single-size hospital-style wheelchair provided to users who did not have one showed a decrease in number of pressure ulcers and improvement in participation at a 12 month follow up [30, 31]. In addition, high rates of wheelchair abandonment have been associated with poor device performance by not meeting nor withstanding the environment’s needs and selection of the device without consideration of user opinion [23, 28, 29]. Another criticism of this approach is that there is often no local capacity to repair the wheelchairs, including services, training and replacement parts. The user is left without a wheelchair once it is in state of disrepair [14, 23, 32‐36]. In 2006, a consensus conference on wheelchairs for developing countries was held in India which brought a wide range of stakeholders involved in wheelchair provision in these settings [37]. The outcomes of this Conference placed the foundations for the World Health Organization (WHO) Guidelines for the Provision of Manual Wheelchairs in Less Resourced Settings (Guidelines) [10]. These Guidelines were used to motivate two Wheelchair Service Training Packages (WHO WSTP) that emphasize the eight critical steps for appropriate wheelchair services:referral and appointment, assessment, prescription, funding and ordering, product preparation, fitting and adjusting, user training, follow-up, maintenance and repairs. All steps push the effort to increase wheelchair service capacity in less resourced settings [38, 39] (Throughout the manuscript, we refer to this as WHO 8-Steps). The Guidelines and WHO WSTPs argue that in order to fully meet the needs of people with mobility impairments wheelchairs must be adjustable to fit the user, suitable for the user’s environment, available in the context where the user lives and accompanied by training in wheelchair use and maintenance [37, 40]. Furthermore, the Guidelines argue that a ‘perfect fitting’ wheelchair cannot solve the problem alone. It needs to be provided through comprehensive services which fully involve the users and their family [1, 10, 20, 25, 38, 39]. In addition, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was adopted in December 2006. Under the UNCRPD, independent mobility is a human right and people with disabilities are entitled to demand access to an appropriate wheelchair [11]. Although the Guidelines and the UNCRPD have been available for several years, the need for wheelchairs is still unmet; wheelchair services have yet to be fully implemented [24, 25, 30‐32].

A total of 344 participants were enrolled in the study. Of these, 29 passed away before the completion of the study and 6 were missing Type of participant information and were not included in the analysis. 167 participants were in the Waitlist group and 142 in the Wheelchair group. The average time between baseline and follow up was 193 ± 27 days. Descriptive statistics of age, gender, and having a wheelchair at baseline stratified by type of participant and group are presented in Table 2 and for disability type in Table 3. No significant differences between Waitlist and Wheelchair group were found for any type of participant at baseline for age (p > 0.309), gender (p > 0.229), number of participants with a wheelchair at baseline (p > 0.077), and disability type (p > 0.127). Of those who did not have a wheelchair at baseline and provided information on means of mobility (n = 210), 15 % reported ambulating with crutches/walkers/canes, 48 % crawled, and 37 % were carried by others. For the Wheelchair group, the types and frequencies of wheelchairs provided are listed on Table 4. There was a significant difference in average hours of wheelchair use by type of wheelchair provided for Adults (p = 0.049). However, the post-hoc comparisons did not result in any significant differences between wheelchairs.

In terms of participation measures using the CHART, Children with proxies in the Waitlist group reported a significant decrease in Mobility domain as compared to Children with proxies in the Wheelchair group, p = 0.023 (Table 5). Female Adults who received a wheelchair reported a larger increase in physical health than those females who were on the waiting list as measured by the WHOQOL-BREF (Table 6). Both male and female Adults who received a wheelchair also reported significantly better Environment health than those Adults on the waiting list as measured by the WHOQOL-BREF (Table 6).

Satisfaction with the means of mobility based on the FMA was also significantly improved in Children with proxies (p < 0.001) and Adults with proxies (p = 0.021) who received a wheelchair as compared to the waiting list (Table 7). There was a trend in increased satisfaction with the means of mobility for Adults who received a wheelchair as compared to those on the waitlist (p = 0.073).

Descriptive statistics for WST-Q scores for the participants who received a wheelchair are listed in Table 8. 28 % of Adults who received a wheelchair reported been able to go over a step and 45 % reported being able to go down a step. Only 11 % (6/53) reported that they were able to perform and hold a “wheelie” as well as turn while holding one. All Children (n = 4) reported not being able to perform a wheelie. There were 2 missing answers for Children and for Adults. For participants in the Wheelchair group who had a wheelchair at baseline, no significant differences between baseline and follow up were found in WST-Q capacity and performance scores for Children + proxy (n = 5) and Adults (n = 7). Due to small sample size it did not compute for Adults + proxy (n = 2) and Children (n = 0). For participants in the wheelchair group, the total WAC scores are described in Table 9. WAC scores were significantly higher in roughriders than in kids wheelchairs for Children with proxies (p = 0.019). Few participants self-reported needing repairs. Casters needing repairs was reported by 2 Adults using roughriders and 3 Children with proxies using kids wheelchair. The seat needed a repair in 2 Adult roughriders. The peripherals (arms supports, push handles, etc.) needed repair in one harmony used by an Adult and one kids wheelchair used by a Child with a proxy. Two frames needed repair, one in an Adult harmony and one in a kids wheelchair. One foot support needed a repair in a harmony wheelchair. Two Adults, one using a roughrider and one using a harmony wheelchair, reported being stranded because of the wheelchair needing repair.

Our results suggest that wheelchair provision according to the WHO 8-Steps had an overall positive impact on the life of the participants who received one as compared to those on the waiting list. To our knowledge, this is the first cohort study that examines how participation, quality of life, functional mobility, wheelchair skills, and wheelchair maintenance are affected by appropriate wheelchair provision in a less resourced setting. Surprising results included the few reported repairs needed in the past 6-months. As compared to an exploratory study in Mexico [32], this may indicate the positive impact of the better quality wheelchairs provided. Both the kids and the adult roughrider wheelchairs are reported to be compliant with the International Organization for Standardization (ISO) 7176 standards [63]. The wheelchairs in the Mexico study did not meet those standards [32]. This suggests that the threshold of meeting ISO 7176 standard as argued in the WHO Consensus meeting [37] would help improve reliability of wheelchairs. Studies in the US have reported that more than 40 % of wheelchair users with spinal cord injury have needed a repair in the past 6 months [64‐66]. This discrepancy between the US data and the Indonesia data might be because the wheelchairs in Indonesia were only 6 months old at follow up. Further follow up could help elucidate the types of repairs inherent to the wheelchairs provided by UCPRUK.

In terms of demographics, 49 % (n = 153) of our sample were children, which is a step towards an increased understanding of the impact of wheelchair provision on this population. Other studies that have included children have had 20 % of the total sample at most and have had small sample sizes (maximum of 60) [24, 30, 31, 41, 45]. 80 % of the study participants did not have a wheelchair at baseline which is similar to baseline data from studies in India, Peru, Vietnam, and Chile with more than 90 % of their participants [30, 31]. Average hours of wheelchair use was higher in this study compared to those reported in studies that have provided a single-size wheelchair to all of the users [23, 30, 31]. However, wheelchairs provided in this study were not used on average more than a third of the day. This could be explained by the fact that school and employment status was not affected by access to a wheelchair. Barriers to participation such as accessibility, public transportation, and attitudinal barriers need to be investigated further.

The only significant difference in CHART domain scores was in the Mobility domain in Children with proxies. Children with proxies in the Waitlist group reported a decrease in Mobility and the Children with proxies in the Wheelchair group did not. This might be explained by the fact that as children grow older it is more difficult for their caregivers to carry them. Therefore, they may spend more time in bed or at home. This also suggests that even with a wheelchair provided through the WHO 8-Steps, improvement in mobility is not guaranteed; more investigations into factors that continue to limit mobility are necessary.

The environmental health domain in the WHOQOL-BREF was improved for both men and women who received a wheelchair. This domain covers issues related to financial resources, safety, health and social services, living physical environment, opportunities to acquire new skills and knowledge, recreation, general environment and transportation [56].

Children with proxies and Adults with proxies who received a wheelchair reported improved satisfaction with their mobility means as compared to those on the waiting list. A surprising result was that there was no significant difference in Adults in satisfaction with current mobility device as measured by the FMA between those in the Waitlist group and those in the Wheelchair group. However, it might be explained by the low scores in wheelchair skills. Training in wheelchair skills has been found to increase the likelihood for reporting improvements in satisfaction [25]. The WST-Q scores are comparable to the objective wheelchair skills test scores [58, 59]. The WST-Q scores of the Adults in this study at follow up are similar to the pre-training scores of adults in previous randomized control trials [67, 68]. None of the Child users and only 11 % of Adult users reported being able to perform a wheelie. This skill is essential to perform the most advanced skills [69] which are instrumental to navigate through architectural barriers often found in less resourced settings [1, 11, 20, 22, 33, 41, 70]. In addition, Caregiver scores for Adults with proxiesand Children with proxies were similar to pre-training scores in the wheelchair skills training study for caregivers [71]. This suggests that caregivers could also benefit from more wheelchair skills training. Even though the WHO WSTP provided by UCPRUK includes training the user in mobility skills, only seven basic mobility skills are taught and it does not include the wheelie [38]. These results may suggest the need for further mobility skills training of wheelchair personnel that could then translate to training of wheelchair users. Several wheelchair skills training programs exist including the Wheelchair Skills Program from Dalhousie University in Canada [68, 71, 72] and the boot camp offered by the Vida Independiente organization in Mexico city [73].

Our study yielded mixed results that call for more rigorous study of the impact of wheelchair provision in a less-resourced setting.

This study found that provision of wheelchairs fitted according to the WHO 8-Step approach in Indonesia resulted in greater satisfaction with mobility for Children with proxies and Adults with proxies. Additionally, Adults that received wheelchairs reported a better quality of life than those on the waiting list. These results indicate that wheelchair provision in low-income countries has a range of positive effects on adults, but could be improved to better satisfy the rehabilitation needs of children. Wheelchair skills were found to be a confounding factor which could influence mobility measurements, and thus additional effort should be focused on providing wheelchair skills training.