Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Acknowledgments

Accelovate-a Partnership in Accelerated Global Health Innovation Accelovate is a global program dedicated to increasing the availability and use of lifesaving innovations for low-resource settings. Led by Jhpiego, the Accelovate program began in 2011 as a five-year, United States Agency for International Development (USAID)-funded program under the Technologies for Health (T4H) grant.

Also available from Accelovate:

Postpartum Rehabilitative Pre-eclampsia Male Hemorrhage Medicine & Eclampsia Circumcision

Design Challenges promote the development of innovative solutions where appropriate technology is lacking

Solution Landscapes assess what solutions exist

Value Propositions assess the benefits and drawbacks of an array of solutions for our context

Business Cases assess manufacturability and commercial potential

Market Readiness Assessments evaluate a selected technology/solution for market-level readiness factors

Briefs describe technology access and utilization challenges in a topical area and outline Accelovate’s approach

Excel Tools present raw data that implementers may develop for programming and advocacy purposes

Literature Reviews review secondary data, usually to understand a bottleneck

This report is made possible by the generous support of the American people through USAID, under the terms of the Technologies for Health award AID-OAA-A-11-00050. The contents are the responsibility of the authors and do not necessarily reflect the views of USAID or the United States Government.

Jhpiego is an international, nonprofit health organization affiliated with Johns Hopkins University. For more than 40 years, Jhpiego has empowered frontline health workers by designing and implementing effective, low-cost, hands-on solutions to strengthen the delivery of health care services for women and their families. By putting evidence-based health innovations into everyday practice, Jhpiego works to break down barriers to high-quality health care for the world’s most vulnerable populations.

Suggested Citation: Aceelovate. 2015. Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study. Accelovate Final Report. Baltimore, MD: Jhpiego.

Accessed at: www.jhpiego.org/accelovate. Published by: Jhpiego Brown’s Wharf 1615 Thames Street Baltimore, Maryland 21231-3492, USA www.jhpiego.org

© Jhpiego Corporation, 2015. All rights reserved.

Cover photo courtesy of Cheryl Ann Xavier Table of Contents

Abbreviations v Acknowledgments vi Glossary x Executive Summary xii Introduction 1 Methods 6 Findings 22 Kenya 22 Philippines 34 Cross-Context Quantitative Findings 42 Qualitative Findings–Kenya and Philippines 47 Discussion 57 Limitations and Strengths 72 Recommendations 74 References 86

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page iii Appendices Appendix A. Philippines Baragay Supporters 88 Appendix B. Survey Instrument Development 93 Appendix C. Wheelchair Survey Tool 100 Appendix D. Data Collector Training Agenda, Kenya 120 Appendix E. Data Collector Training Agenda, Philippines 124 Appendix F. In-Depth Interview Guide 129 Appendix G. Description of Variables Used in Wheelchair Analysis 132 Appendix H: Kenya Research Consultation Agenda and Participants 135 Appendix I. Philippines Research Consultation Agenda and Participants 138 Appendix J. Data Tables: Kenya 144 Appendix K. Data Tables: The Philippines 158

page iv—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Abbreviations

ADL Activities of daily living CI Confidence interval DPO Disabled people’s organization FBO Faith-based organization IHPDS Institute of Health Policy and Development Studies IRB Institutional review board ISPO International Society for Prosthetics and Orthotics JHSPH Johns Hopkins University School of Public Health LGU Local government unit M-PESA Mobile electronic money transfer NGO Nongovernmental organization ODK Open Data Kit OR Odds ratio PWDs Persons with disabilities USAID United States Agency for International Development WHO World Health Organization

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page v Acknowledgments

Accelovate wishes to acknowledge the contributions of Jhpiego’s United States-based study team, including Dr. Eva Bazant, Principal Investigator; Elizabeth Hurwitz, Accelovate Program Officer and Wheelchair Portfolio Lead; Emma Williams, Monitoring, Evaluation, and Research Advisor; Jamie Noon, Senior Technical Advisor; Shannon Egan, Accelovate Program Officer; Deepti Tanuku, Director of the Accelovate Program; and Sam Dowding, Accelovate Deputy Director and Program Administrator.

Thanks also to Hibest Assefa, Senior IRB Specialist; Diwakar Mohan, Analytic Advisor; and Gayane Yenokyan, Biostatistician.

We appreciate the partnership of Dr. Lee Kirby of Dalhousie University and Dr. Jon Pearlman, Director of the International Society of Wheelchair Professionals, as well as that of our colleagues at MSH’s Leadership, Management and Governance project, Maggie Lamiell and Sylvia Vriesendorp.

Accelovate is grateful for the support of USAID colleagues in the Bureau for Global Health, including Neal Brandes, Sara Sulzbach, Stefanie Evans, and UnJa Hayes; and in the Center of Excellence on Democracy, Human Rights and Governance, including Rob Horvath, Sue Eitel, Sandy Jenkins, and Cathy Savino.

The research team would also like to express our gratitude to the more than 800 wheelchair users who were respondents in this study, as well as the caregivers who supported their participation. Thank you for sharing your experiences and insights.

In Kenya, Accelovate would like to express appreciation to:

nn The Jhpiego/Kenya MER team, including: Anthony Gichangi, Local Lead Investigator; Tom Marwa, government and sector liaison; Charles Waka, Information Technology Specialist; Naomi Maina, MER Assistant; and Jonesmus Wambua, Data Analyst

nn Other key Jhpiego/Kenya staff: Brenda Onguti, Accelovate Field Technical Advisor and Study Coordinator; Levis Onsase, Field Team Supervisor

nn Jhpiego Country Director Dr. Mildred Mudany and former Jhpiego Country Director Isaac Malonza page vi—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study nn Field Team Supervisors: Jane Ayub and Immaculate Obaga

nn Data collectors: Rosemary W. Kamau, Rachel Hongo, Patrick K. Kande, Doreen Manene, Richard B. Okola, Nelly Saiti Erick Waga and Christine Titi

nn The wheelchair sector experts who guided this work, including: Charles Kanyi, James Keitany, Norah Keitany, Peter Mbuguah, Gideon Muga, Abdullah Munish (Tanzania), David Munyendo, and Hubert Seifert

nn The USAID Kenya Mission, including Lilian Mutea and Sheila Macharia.

nn The organizations providing access to lists of potential study respondents, including: Action Network for the Disabled; AIC Child Care Kajiado; AIC Cure Kijabe; Association of Persons with Disability: Busia, Eldoret, Kisii, Kisumu, Machakos, Mombasa, Nakuru, Nairobi, and Nairobi Mobile Clinic; Athi River for the Physically Handicapped Self Help Group; Bethany Kids; Disability Resource and Information Center; Henry Wanyoike Foundation; Kenya Paraplegic Organization; Disabled Persons Organizations in the counties of Kiambu, Nakuru, Mombasa, and Kajiado; LDSCharities Kenya; Litein Hospital; Machakos Central Group for the Disabled, Mombasa Secondary School for the Disabled; Motivation International; National Fund for the Disabled; Nyabondo Rehabilitation Center; and Port Reitz School Mombasa

nn The county governments that allowed us to conduct the study in their jurisdictions and permitted the use of their health facilities as data collection sites

In the Philippines, Accelovate wishes to acknowledge the contributions of:

nn The Philippines-based Jhpiego Research team and other Jhpiego staff, including: Dr. Bernabe Marinduque, Local Lead Investigator; Lorena Rolando, Research Assistant; Cheryl Ann Xavier, Senior Technical Advisor; Local Government Unit Advisors Ann Lustresano and Ismael Penado; Jhpiego Country Director Dr. Dolores Castillo; and Jhpiego Program Manager Averdin Bucad

nn Institute for Health Policy and Development Studies,

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page vii University of Philippines Manila and key staff: Dr. Hilton Lam, Dr. Grace Marie Ku; Dr. Ferdiliza Dandah Garcia; Mr. Tyrone Reden Sy; Dr. Adovich Rivera; and Dr. Braylien Siy

nn Field Team Supervisors: Amelyn Asence; Jesebell de Jesus; Kent Jason Cheng; Mylene Mae Lamayra; and Paul Lester Chua

nn Data Collectors: Anabelle Abella; Roy Luister Acos; Sarah May Atentar; Arianne May Balaoing; Renalyn Bustamante; John Benedict Constantino; Jamila Carreon; Judith Dado; Jean de los Reyes; Adelaine Espiritu; Gilana Gonzales; Jennifer Ildefonzo; Paola Mercaida; Jhoanna Quesada; and Cleford Trocino

nn The USAID Philippines Mission, including Nancy Ebuenga

nn Representatives of the various Philippine Government Agencies that approved and endorsed the research and data collection from wheelchair users within their area of jurisdiction, including Carmen Reyes-Zubiaga, Director of the National Council of Disability Affairs, and Frances Priscilla Cuevas of the Department of Health

nn Mayors of the Local Government Units (LGUs) selected for the study, including Hon. Vergel Aguilar of Las Piñas City; Hon. Jejomar Erwin Binay, Jr. of Makati City; Hon. Benjamin Abalos of Mandaluyong City; Hon. Herbert Bautista of Quezon City; and Hon. Maria Laarni Cayetano of Taguig City

nn Representatives of Persons with Disability Affairs Offices (PDAO) and Federations of Disabled Persons Organizations, who provided access to lists of wheelchair users within their areas of jurisdiction: Anafe Maravillas, Las Piñas City; Dr. Maureen Ava Mata, Makati City; Wennah Marquez, Mandaluyong City; Hon. Arnold de Guzman, Quezon City; and Larry Supaz, Taguig City

nn Representatives of nongovernmental organizations, faith- based organizations, and local wheelchair manufacturers involved in providing wheelchairs in the country who assisted in the identification of potential research study respondents, including: Ms. Adeline Dumapong of Freedom Technology Wheelchairs Foundation Inc.; Elder Dennis Smith and Elder and Sister Staton of the Latter Day Saints Charities; page viii—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Dr. Josephine Bundoc of the Physicians for Peace; and Ms. Joy Cevallos-Garcia and Ms. Thess Lloren of Tahanan ng Walang Hagdanan nn Disabled persons organizations, private practitioners, wheelchair users, and others who lent their expertise on the disability and wheelchair sector in the country to better understand the unique context of the Philippine setting for a more informed approach in the research implementation, including: Mr. Harold Lilagan; Professor Teresita Mendoza, Former Dean, College of Allied Medical Professions, University of the Philippines Manila; Mr. Jay Monterola, Philippine Coordinating Center for Inclusive Development; Mr. Emmet Penson; Ms. Daylinda Taleon, AKAP Pinoy; and Mr. Jerome Zayas nn Barangay officials and barangay volunteers, who assisted data collectors in locating wheelchair users in the community, including: Junet M. Barilla, City Social Welfare Development Officer, Las Piñas; Reynaldo C. Balagulan, Acting City Administrator, Las Piñas; Hon. Ma. Arlene M. Ortega, ABC President, Makati City; Marcial V Flores, Assistant City Administrator, Quezon City; and Jorge P. Felipe, Officer-in-Charge, ABC, Quezon City nn City and barangay officials, barangay staff and volunteers who facilitated the access to wheelchair users in their respective barangays (communities) and in locating them, are acknowledged in Appendix A.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page ix Glossary

Appropriate wheelchair: A wheeled chair that meets the user’s needs and environmental conditions; provides proper fit and postural support; is safe and durable; is available in the country; and can be obtained and maintained and services sustained in the country at the most economical and affordable price.

Assessment: A service step in which the provider evaluates the wheelchair user’s needs, measures him or her, and discusses wheelchair choice. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

Distribution-only group: Before being enrolled in the study, respondents answered a screening question about wheelchair service history, which was designed to ensure the balanced participation of wheelchair users who received services with their current wheelchair and those who did not. Those who did not were considered to be in the distribution-only group.

Eight steps of wheelchair service delivery: The World Health Organization’s (WHO’s) Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings outlines eight key steps typically involved in wheelchair service delivery: (1) referral and appointment, (2) assessment, (3) prescription (selection), (4) funding and ordering, (5) product preparation, (6) fitting, (7) user training, and (8) follow-up, maintenance, and repairs.

Fitting: A service step in which the provider tailors the wheelchair to its user. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

Follow-up: A component of a service step in which the provider returns to the wheelchair user for check-in and support. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

Maintenance: A component of a service step in which the wheelchair user learns to take care of the wheelchair. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

page x—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Repair: A component of a service step in which the wheelchair user learns what to do about repairs he or she cannot manage. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

Service group: Before being enrolled in the study, respondents answered a screening question about wheelchair service history, which was designed to ensure the balanced participation of wheelchair users who received services with their current wheelchair and those who did not. Those who received services were considered to be in the service group.

Successful wheelchair use: Indicators of successful wheelchair use included time spent in the wheelchair each day, independent navigation indoors and outdoors, unassisted performance of activities of daily living, multiple wheelchair acquisition, and experience of pressure sores and falls. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

Training: A service step in which skills around wheelchair use are developed. Survey items can be found in Appendix C. For a description of variables used in the analysis, see Appendix G.

Wheelchair provision: An overall term for wheelchair design, production, supply, and service delivery.

Wheelchair service delivery: The part of wheelchair provision concerned with providing users with appropriate wheelchairs.

Wheelchair service level: The level of service delivery required to meet a user’s postural and other needs. Users benefiting from basic-level wheelchairs are able to sit well, do not have any postural deformities, and require no additional postural support.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page xi Executive Summary

Introduction For a person who needs a wheelchair for mobility, an appropriate, well-designed, and well-fitting wheelchair is critical for inclusion and participation in society. Yet an estimated 20 million people globally who need a wheelchair for mobility do not have one (WHO, ISPO, and USAID 2008). Those who do gain access to wheelchairs often end up with ill-fitting and inappropriate devices; as a result, many wheelchairs are unused (Mukherjee and Samanta 2005).

According to the World Health Organization (WHO), the rehabilitation of people needing wheelchairs for mobility depends on the provision of appropriate wheelchairs. This includes services to assist users in selecting, adjusting, and learning to use a wheelchair that meets their needs and environmental conditions.

In 2015, the Accelovate program, with funding from the United States Agency for International Development, conducted a groundbreaking study to explore the association between wheelchair services and user outcomes in Kenya and the Philippines. Because access to properly fitted wheelchairs is low and wheelchair abandonment is high, advocates for comprehensive wheelchair provision need data to promote an optimal delivery model.

Building on a year of desk research to develop wheelchair delivery estimates and compile wheelchair service impact and outcome measurement tools (Accelovate 2013), Accelovate posed the following research questions: 1. Among wheelchair users who received assessment and fitting for their current (most recently acquired) wheelchair, what percentage use it at a high level (i.e., 8 hours or more per day)?

2. Among wheelchair users who ever received wheelchair user training, what percentage (a) use their current wheelchair 8 or more hours per day, and (b) use it to independently navigate indoors and outdoors?

3. Is the number of wheelchairs that users have owned (“wheelchair turnover”) associated with receipt of the following services in conjunction with any wheelchair: (a) wheelchair assessment and fitting, (b) wheelchair user training, (c) wheelchair follow- up services, and (d) wheelchair maintenance/repair services? page xii—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 4. What are wheelchair users’ experiences with wheelchairs and wheelchair services? What makes people move from one chair to another? What are the barriers to using and receiving services? What services and other factors are associated with appropriate wheelchair use and retention? What are the effects of wheelchair acquisition on the lives of wheelchair users? (These questions were posed during the qualitative interviews.)

Methods Accelovate’s cross-sectional, mixed-methods study collected 852 surveys and conducted 48 in-depth interviews (24 in each country) with adult users of manual, basic wheelchairs. To ensure balanced participation of wheelchair users who received services with their current wheelchair and those who did not, respondents were asked to answer this screening question before being enrolled in the study: “When you received your current or most recent chair, did a wheelchair provider help you choose the right wheelchair? The provider might have measured your body, checked the fit of the wheelchair, or made adjustments to the wheelchair.” Quantitative Sample Composition Based on Screener: Did a provider assist you in selecting your current wheelchair? Distribution-Only Unknown Service Service Group Total Group History n % n % n % n Kenya 170 40% 249 59% 1 0% 420 Philippines 201 47% 231 53% 0 0% 432

In Kenya, residents of urban and peri-urban areas were sampled from lists provided by organizations that deliver wheelchairs and organizations serving disabled persons, and through snowball sampling in which study participants referred members of their personal networks.

In the Philippines, residents of Greater Manila were sampled from lists of wheelchair users provided by five local government units that provide wheelchairs directly to citizens. Names were also provided by a wheelchair charity, a nongovernmental organization where wheelchair users live and work, and through snowball sampling.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page xiii The survey queried receipt of wheelchair assessment, fitting, training, maintenance, repair, and follow-up. Technical experts advised that these service steps make up the core of the WHO service package and would be the likeliest to show an association with study outcomes.

We measured associations between service receipt and: (1) time spent in the wheelchair each day, (2) independent navigation indoors and outdoors, (3) unassisted performance of activities of daily living, (4) multiple wheelchair acquisition, (5) pressure sores, and (6) falls.

Findings The Kenya and Philippines study populations differed in many ways. The Kenya population was younger than the Philippines population (71% versus 37% under the age of 50) and less likely to be unemployed (28% versus 61%). Leading causes of disability in the Kenyan sample were spinal cord injuries (29%), polio (24%), and congenital disabilities (13%). In the Philippines, leading causes of disability were stroke/nerve issues/clots (26%), polio (19%), and old age/arthritis/bone problems (15%).

In Kenya, 27% of respondents had rough-terrain wheelchairs, compared with 4% in the Philippines. Forty-four percent of respondents in the Philippines and 41% of respondents in Kenya had received provider’s assistance in choosing their current wheelchairs, yet no single service step was received by more than 34% of respondents.

In Kenya and the Philippines, numerous services were significantly associated with successful wheelchair use in multivariable models; the report details these associations as well as a number of unexpected findings, chiefly related to falls. Among the findings related to services, most striking were the associations between successful use of the current wheelchair and two services: (1) ever receiving wheelchair user training, and (2) being fitted in the current wheelchair while propelling. In Kenya, training was associated with 2.9 times increased odds of reporting a high level of independent management of activities of daily living. In the Philippines, training was associated with four times greater odds of reporting high daily wheelchair use. Those who were fitted while page xiv—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study propelling their wheelchair were 2.8 times more likely to report a high level of independent management of activities of daily living in both Kenya and the Philippines. Being fitted while propelling was also associated, in the Philippines, with 2.4 times increased odds of reporting unassisted wheelchair use outdoors. Qualitative findings, detailed in the report, gave context and texture to the quantitative results and address Research Question 4.

Research Question 1: In multivariable models, neither assessment nor fitting was associated with increased odds of spending more than eight hours a day in the wheelchair, although assessment was associated with a different indicator of successful wheelchair use in Kenya; elements of the assessment and fitting steps were associated with other outcomes in both expected and surprising directions.

Research Question 2: Training was associated with increased odds of high wheelchair utilization in the Philippines. An association between training and independent navigation did not emerge in the multivariable models, but in Kenya, training was associated with another indicator of independent wheelchair use: unassisted performance of activities of daily living. In the Philippines, training revealed a number of unexpected findings.

Research Question 3: In the Philippines, multivariable models unexpectedly found increased odds of multiple wheelchair acquisition when assessment/fitting occurred at home and when the follow-up step was provided.

Recommendations The findings suggest that service provision may be critical to achieving positive outcomes and protecting wheelchair investments. Our data establish a platform to develop and test service model innovations. The importance of (1) training, and (2) fitting, while the wheelchair user propels, emerged in both countries. Study findings were presented to country stakeholders in August 2015. In these meetings, stakeholders developed recommendations for advocates, governments, providers and planners of wheelchair services, funders, researchers, and others. Their recommendations are included here as a call to action.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page xv page xvi—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Introduction

Wheelchair Needs in Low-Resource Settings The World Report on Disability estimates that there are more than a billion people in the world who live with some form of disability (WHO and World Bank 2011). It is estimated that about 1% Many wheelchair of the world’s population need wheelchairs (WHO, ISPO, and users in less- USAID 2008). A wheelchair provides wheeled mobility and seating support for a person with difficulty walking or moving resourced settings around. It is one of the most commonly used assistive devices for still receive their enhancing personal mobility. wheelchairs with Personal mobility, as defined by the United Nations Convention on an inadequate type the Rights of Persons with Disabilities, is the ability to move in the manner and at the time of one’s own choice. For many people, and level of service an appropriate, well-designed, and well-fitting wheelchair can be delivery. Wheelchair the first step toward inclusion and participation in society. An appropriate wheelchair meets the user’s needs and environmental users often end up conditions, provides proper fit and postural support, and is safe with wheelchairs and durable. It is available and affordable and maintainable and sustainable in the country of use. that are ill-fitting, inappropriate, and In 2003 it was estimated that 20 million people who needed a wheelchair for mobility did not have one (WHO, ISPO, and of poor quality. USAID 2008). To address this need, myriad organizations now provide wheelchairs for people with mobility disabilities globally. These disabled persons organizations (DPOs) include international nonprofit organizations, development organizations, government agencies, faith-based and civic organizations, private for-profit operators, and disabled people’s organizations, to name a few.

Wheelchair Services: The WHO Provision Model Many wheelchair users in less-resourced settings still receive their wheelchairs with an inadequate type and level of service delivery. Wheelchair users often end up with wheelchairs that are ill-fitting, inappropriate, and of poor quality. This leads to serious problems for the user and for the country in the long run. There is increasing awareness of the need for a model of providing wheelchairs in which wheelchairs are provided with an accompanying service by trained personnel.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 1 The successful rehabilitation of people who need a wheelchair for mobility depends on appropriate wheelchair provision. Wheelchair provision can only enhance wheelchair users’ quality of life if users have access to (1) wheelchairs that are appropriately designed, (2) wheelchairs that have been produced to appropriate standards, (3) a reliable supply of wheelchairs and spare parts, and (4) wheelchair services that assist the user in selecting and being fitted with a wheelchair, provide training in its use and maintenance, and ensure follow-up and repair services or guidance.

Appropriate wheelchair services offer an effective way to meet the individual needs of wheelchair users, including assessing individual user needs, assisting in the selection of an appropriate wheelchair, training users and caregivers, and providing ongoing support and referral to other services where appropriate. The WHO’s Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings outlines eight key steps typically involved in wheelchair service delivery: (1) referral and appointment, (2) assessment, (3) prescription (selection), (4) funding and ordering, (5) product preparation, (6) fitting, (7) user training, and (8) follow-up, maintenance, and repairs.

Wheelchair services provide the essential link between wheelchair users and the manufacturers and suppliers of wheelchairs as well as other local services and programs. The main roles of a wheelchair service provider are to assist users in choosing the most appropriate wheelchair, to ensure that the wheelchair is adjusted or modified to suit their individual needs, to train users on effective use and maintenance, and to follow-up their case. Service training for personnel involved in providing wheelchairs is essential. As service personnel become equipped with skills and knowledge in wheelchair service delivery, they can assist in enhancing the quality of life of wheelchair users by providing users with a wheelchair that meets their individual needs.

About Accelovate Accelovate is a five-year United States Agency for International Development (USAID)-funded program focused on improving access to and appropriate use of critical technologies and commodities in low-resource settings. The program, which began in October 2011, is led by Jhpiego under Cooperative Agreement page 2—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study AID-OAA-A-11-00050 and the Technologies for Health Program. In keeping with its mission to expand the use of critical technologies, Accelovate accepted USAID’s challenge to explore bottlenecks in the mobility sector. With access to properly fitted wheelchairs low and wheelchair abandonment high, advocates for comprehensive wheelchair provision need data to promote an optimal distribution model. Accelovate undertook this research study to investigate the association between receipt of wheelchair services (as part of a distribution package) and wheelchair utilization in low-resource settings.

Literature Review: The Evidence for Wheelchair Services Accelovate conducted a full literature review in a formative phase of research (Accelovate 2013, available online and updated below). In one study, 57% We found that there has been little study of the association of distributed between receiving wheelchair services and successful wheelchair use in low-resource settings. No study comprehensively assessed wheelchairs went wheelchair service delivery. Previous study outcomes included complications of wheelchair use, mobility capacity, and wheelchair unused. user knowledge, but impact metrics were mostly lacking for low- resource settings.

Although studies of wheelchair distribution programs (without service provision) are limited, some have included findings suggesting high levels of wheelchair abandonment. A study conducted in 2005 in West Bengal, India, indicated that 57.4% of 162 hand rim–propelled manual wheelchairs distributed to individuals with dysfunction in their lower limbs went unused due to pain, fatigue, discomfort, and lack of habitat adaptability (Mukherjee and Samanta 2005). The study concluded that hand rim–propelled manual wheelchairs were undesirable for use outdoors due to their low speed and high physiological demand, and undesirable of use indoors because they are difficult to maneuver under the environmental conditions and architectural restraints. However, this study did not examine whether the provision of supportive services alongside the distribution of hand- rimmed wheelchairs could have decreased abandonment rates.

In 2012, in a U.S.-based study, Greer et al. found that a lack of appropriate wheelchair services might result in provision of the wrong wheelchair to users, increasing the risk of adverse outcomes

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 3 such as repetitive strain injuries, pressure sores, falls, and accidents; equipment abandonment; and underutilization. Mann et al. (1996) observed that older wheelchair users in the U.S. who selected their own wheelchair without professional assistance experienced more problems with wheelchair fit, resulting in the user’s discomfort and inability to self-propel, and greater needs for maintenance and repair. In addition, the quality of life and vocational and economic standing of wheelchair users are affected when wheelchair services are lacking, according to Eggers et al. (2009; also in a U.S.-based study).

Studies conducted in low-resource settings have emphasized the need for wheelchairs suitable for rugged terrain. Scovil et al.’s 2007 study of community wheelchair users in Nepal revealed that two-thirds of donated standard wheelchairs required replacement after only two years, and users could not access their community independently. Some wheelchairs were “abandoned,” meaning that wheelchair beneficiaries were not using their chairs at all. Similarly, Rispin and Wee (2014) studied a group of students in a Kenyan boarding school for children with disabilities and found that low- cost, hospital-style transport wheelchairs, which are prevalent in low-resource settings, performed poorly compared to wheelchairs that were suited to the individual and the terrain.

In Bangladesh, Borg et al. (2012) found that user involvement in securing wheelchairs improved outcomes. Asking users their preferences increased the likelihood that users would report fewer activity limitations when using their wheelchair to perform desired activities. Measuring a wheelchair user for a wheelchair increased the likelihood of reporting more satisfaction. Furthermore, wheelchair users who were trained to use their chair were likely to report more satisfaction, fewer activity limitations, fewer participation restrictions, and improved quality of life.

A study by Maria et al. (2014) in Indonesia found that adult participants who were provided with a wheelchair based on all eight WHO steps of service had improvement on the environmental health domain of the WHOQOL-BREF quality of life instrument compared to those in a waitlist.

page 4—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Rationale and Research Questions The rationale for this study was two-fold. First, previous research has assessed the effects of some elements of wheelchair service provision, but has not distinguished among the effects of the main service steps outlined in the WHO guidelines (WHO, ISPO, The overall aim and USAID 2008). Second, general health care needs, the built of this study was environment, the social and cultural environment, and resources available to wheelchair users differ between higher- and lower- to determine the resource settings, and rigorous studies from low-resource settings association between are lacking. wheelchair services WHO recommends that wheelchair support services are offered along with wheelchair distribution. and successful wheelchair use The overall aim of this study was to determine the association between wheelchair services and successful wheelchair use in low- in low-resource resource settings. The study was conducted among adult, basic settings. wheelchair users, and the following research questions were posed: 1. Among wheelchair users who received assessment and fitting for their current (most recently acquired) wheelchair, what percentage use it at a high level (i.e., 8 hours or more per day)? 2. Among wheelchair users who ever received wheelchair user training, what percentage (a) use their current wheelchair 8 or more hours per day and (b) use it to independently navigate indoors and outdoors? 3. Is the number of wheelchairs that users have owned (“wheelchair turnover”) associated with receipt of the following services in conjunction with any wheelchair: (a) wheelchair assessment and fitting, (b) wheelchair user training, (c) wheelchair follow- up services, and (d) wheelchair maintenance/repair services? 4. What are wheelchair users’ experiences with wheelchairs and wheelchair services (question posed for the qualitative interviews)? What makes people move from one chair to another? What are the barriers to using and receiving services? What services and other factors are associated with appropriate wheelchair use and retention? What are the effects of wheelchair acquisition on the lives of wheelchair users?

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 5 Methods

Country Selection Accelovate estimated global country-level wheelchair distribution volumes based on an Internet search of disability statistics and wheelchair distribution databases and wheelchair nongovernmental organization (NGO) and DPO websites and annual reports (Tanuku and Onguti 2013). Countries where estimated levels of wheelchair distribution were high were prioritized for selection. World Bank Income Group data allowed the exclusion of middle- and high-income countries. The 41 countries in which Jhpiego has an established, in-country presence were further prioritized for pragmatic reasons.

Tanzania and the Philippines were originally selected, but Tanzania was replaced with Kenya because it became clear during a field visit in Tanzania that there was insufficient wheelchair service provision to power a study of associations with service receipt. After consulting Accelovate’s Tanzania-based wheelchair technical Definitions Used in Screening Service group: When the user received their current or advisor and obtaining advice from his colleagues within the region, most recent chair, a wheelchair provider helped them Kenya was proposed as a suitable alternate study site. choose the right wheelchair. The provider might have measured their body, checked the fit of the wheelchair, Subnational study locations in Kenya and the Philippines were or made adjustments to the wheelchair. selected to ensure the inclusion of low-income wheelchair users Distribution-only group: When the user received their and based on practical factors such as number of wheelchair users current or most recent chair, a wheelchair provider residing in the area and the receptivity of stakeholders whose did not help them choose the right wheelchair. No assistance would be needed in obtaining lists of wheelchair users provider measured their body, checked the fit of the wheelchair, or made adjustments to the wheelchair. for recruitment.

Study Design This was a mixed-methods, cross-sectional study of wheelchair Inclusion criteria: • Age 18 years old or older users involving a quantitative survey and in-depth interviews. • “Basic” wheelchair user: able to sit without any Wheelchair users retrospectively reported on their receipt of postural deviations or abnormalities wheelchairs and wheelchair services and on other aspects of their • Received current wheelchair less than 5 years health and lives. Before being enrolled in the study, respondents but more than 3 months before month of data collection answered a screening question about wheelchair service history, which was designed to ensure the balanced participation of Exclusion criteria: wheelchair users who received services with their current wheelchair • Temporary wheelchair use (e.g., for a broken (service group) and those who did not (distribution-only group). limb that was expected to heal) • Use of a tricycle instead of a two-wheeled chair • Unable to communicate with data collectors Group allocations were made in response to the screener question: in English, Swahili (Kenya) or Filipino “When you received your current or most recent chair, did a (Philippines) or to understand the survey questions page 6—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study wheelchair provider help you choose the right wheelchair? The provider might have measured your body, checked the fit of the wheelchair, or made adjustments to the wheelchair.”

In addition to more than 800 quantitative surveys, the study team set conducted 24 analyzable in-depth interviews in each country, for a total of 48 (one additional interview in each country could not be analyzed due to audio data corruption or poor sound quality). Qualitative respondents were purposively selected based on their participation in the survey. The participants represented equally users with different characteristics believed to be relevant to wheelchair service history and outcomes: sex (men and women), those who had received services with most recent wheelchair and those who had not, those younger and those older than age 45, and roughly each geographical area.

Quantitative Approach Quantitative Sample Size Estimation The survey sample size was based on a two-group, post-intervention comparison test of the main outcome: the proportion of all basic wheelchair users using their current wheelchair daily at a high level. The level was unknown and expected to be 50% in the service group and 35% in the distribution-only group, a difference of 15 percentage points. We expected each country to have six clusters, the primary sampling units. We assumed the intra-class correlation to be 0.002, and we set 80% probability to detect a true difference in proportions of the outcomes between the two groups at a 0.05 level of significance. The sample size adjusted for cluster design in the service and distribution-only groups was 209 each, or 418 participants for each country. A sample size of 500 per country had been approved by the institutional review board (IRB) based on an earlier estimate of 10 clusters with 50 participants per cluster. All other assumptions were the same.

Quantitative Instrument Development To answer the primary research questions (see Introduction), Accelovate listed modules and subsections of instruments for possible inclusion in the study. Researchers collected more than a dozen existing data collection instruments related to wheelchair use and reviewed them (Accelovate 2013). Most were not adaptable to this study’s population and research questions. Some questions

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 7 used in the survey were adapted from existing tools.

Appendix B shows the instruments reviewed in the development of the tool. The tool went through several iterations, guided by several wheelchair technical advisors. Wheelchair experts and wheelchair users provided useful input during the Tanzania and Philippines field visits conducted in 2014.

The final survey tool assessed the receipt of six steps of wheelchair service: assessment, fitting, training, maintenance, repair, and follow-up—these lie at the core of the WHO-recommended service package, and technical experts advised that they were the likeliest to show an association with study outcomes.

The hypotheses were that the provision of assessment and fitting services in conjunction with the most recent (current) wheelchair would increase successful wheelchair use (as measured by the study outcomes), and that the receipt of training, maintenance, repair, or follow-up services at any point in the respondent’s lifetime would increase successful wheelchair use. Figure 1 shows the conceptual model linking wheelchair services to user outcomes.

Figure 1. Conceptual Model Linking Wheelchair Services to User Outcomes

Context Inputs Outcomes Impact

Health condition leading to Wheelchair is Daily use of wheelchair use given/boughte wheelchair Multiple wheelchair acquisition or Activity limitations Inclusion— Personnel trained Indoor mobility/ abandonment social, in wheelchair use educational, and Participation restriction services economic Outdoor mobility/ Pressure sores Environmental barriers: use • Access to services Sercices received • Social factors • Assessment Health, well- • Economic fitting being, and Injuries/ • Training Independent survival accidents/falls in Personal barriers • Maintenance performance of wheelchair • Family and social • Repairs activities of daily network living • User characteristics

page 8—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study The four main types of questions in the final survey related to:

nn Experience/receipt of wheelchair service items with the current chair, or ever;

nn Wheelchair use outcomes (hours of daily use, independent use indoors and outdoors, independent performance of activities of daily living, multiple wheelchair acquisition) and health outcomes (experience of pressure sores);

nn Sociodemographic and other personal characteristics, including the nature of the disability; and

nn Characteristics of the wheelchair and how it was acquired.

Appendix C contains the comprehensive Wheelchair Survey Tool.

Country Field Teams In Kenya, the Jhpiego Kenya Monitoring, Evaluation, and Research team conducted data collection. In the Philippines, a local research organization—the Institute for Health Policy and Development Studies at the University of Philippines, Manila (IHPDS)—was selected through a competitive process.

Data Collector Training Both the Jhpiego Kenya team and IHPDS hired experienced surveyors, in-depth interviewers, and field team supervisors to collect the data. In both countries, care was taken to include at least one wheelchair user on the team of surveyors (also called field data collectors). All trained surveyors had previous experience conducting field surveys with vulnerable populations.

In-country data collection training, led by the principal investigator and a member of the Baltimore-based Jhpiego Monitoring, Evaluation, and Research team, took place over four days in Kenya and five days in Manila (see Appendixes D and E for the training agendas).

Surveyor training covered the following:

nn Wheelchair users’ needs and situation in Kenya and the Philippines

nn Wheelchair services recommended by WHO

nn Study objectives and methods

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 9 nn Survey tool modules In both countries, nn Study team roles care was taken to nn Ethics in human subjects research (trainees received the JHSPH Human Subjects Research Ethics Field Training include at least one Guide) wheelchair user nn Recruiting, screening, scheduling, consenting, and enrolling on the team of respondents

nn Daily expectations of surveyors and supervisors and surveyors. documentation requirements

nn Recording data in tablet computers with the survey pre- programmed in the Open Data Kit (ODK) application

nn Data management

nn When to offer respondents a listing of service providers addressing the needs of persons with disabilities

The training included role play, and on the final day surveyors had the opportunity to interview wheelchair users as practice respondents at the training site under the observation of field supervisors.

Field Team Structure and Oversight In Kenya, four field supervisors and eight surveyors were trained. Supervisors developed interview calendars; coordinated logistics; managed the electronic reimbursement of study participants for transport and meals; maintained operational order at interview sites; periodically observed data collection to ensure consistency and quality; screened study participants for eligibility; assigned study ID numbers, and directed study participants to the surveyors. In addition to these duties, supervisors conducted the qualitative interviews and occasionally also quantitative interviews. The study team was divided into two teams, each composed of two supervisors and two or three surveyors, to increase efficiency and geographic reach.

In the Philippines, the team included seven field supervisors and 15 field data collectors. Supervisors monitored the phone interviews; assigned study identification numbers; assisted the data collectors in creating interview calendars; coordinated logistics; managed the disbursement of cash payments to study page 10—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study participants for transport, meals, and interview completion as approved in the study protocol; conducted initial courtesy calls and meetings to gain access to study sites; periodically observed data collection to ensure consistency and quality; imported and collected the ODK forms from each data collector’s tablet; and monitored the disbursements made to data collectors. Supervisors conducted all qualitative interviews.

A Jhpiego-hired research assistant periodically observed data collection to ensure quality and consistency. The supervisors and data collectors were grouped into seven teams to ensure efficient geographical coverage. Six of the teams were composed of one supervisor and two data collectors, while one team had one supervisor and three data collectors.

Overall: Each surveyor submitted a daily tally sheet to field supervisors, documenting study identification numbers (but not names), number of participants interviewed, interview location, whether the participant screened into the service or distribution- only arm, and general observations of the interview day. Field supervisors then updated a daily and overall tracker. In the Philippines, this was done online. These tools—shared weekly with the Baltimore team—were useful in monitoring the composition of the sample in terms of service vs. distribution group. The yield of various recruitment lists was closely watched to predict slow- downs in recruitment as lists were exhausted. This enabled the pursuit of new strategies with minimal disruption of timelines.

Local teams met weekly. Baltimore held separate weekly meetings with the Kenya and Philippines management teams. At the midpoint of data collection, the full team of surveyors was gathered to share experiences and identify any issues on the ground with the Baltimore team. On several occasions, the Baltimore team coordinated the exchange of information between the Kenya and Philippines teams to share experiences, lessons learned, and best practices.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 11 Recruitment and Interviews In Kenya, residents of urban and peri-urban areas were recruited. Potential participants were drawn from organizational lists provided by (1) wheelchair-providing organizations such as faith- based organizations, NGOs, community-based organizations, and government hospitals; (2) organizations such as DPOs and schools whose members use wheelchairs; and (3) snowball sampling, in which a study participant refers members of his or her personal network.

Kenya data collection The names and contacts of potential participants were put into a master recruitment list. Surveyors and field supervisors contacted and prescreened participants by phone. Eligible participants were sorted according to their town of residence, and appointments were scheduled at a location of the respondent’s choosing to ensure that lack of access would not limit participation. Many interviews were conducted in participants’ homes.

On the day of the interview, subjects were re-screened for eligibility, offered informed consent, and upon enrollment, assigned a unique study identification number to anonymize the data set.

Toward the end of data collection, the team reached the target number of wheelchair users who did not receive services (members of the distribution-only group). From that point forward, only those names on the list provided by organizations known to provide services in conjunction with wheelchair delivery were contacted.

In the Philippines, potential participants were drawn from lists provided by local government units (LGUs) (in this case, cities), which maintain lists of wheelchair users and provide wheelchairs directly to their citizens. Lists were also provided by a major wheelchair-distribution charity and by a unique NGO where wheelchair users live and work. As in Kenya, snowball sampling was also employed.

A list of names from the various sources was compiled and sorted according to the smallest political/geographic unit (“barangay”). The barangays with the highest number of potential respondents Philippines data collection page 12—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study were prioritized. Prescreening via phone was conducted for respondents with contact numbers. Those found to be ineligible via prescreening were removed from the list and were not scheduled for a visit. Those found to be eligible were scheduled for a home visit. Those without contact details or with wrong contact details and those who were unavailable at the time of the call were scheduled for house-to-house recruitment and interviews.

House-to-house recruitment and scheduled home visits were coordinated with barangay officials. To follow local custom, barangay staff were requested to accompany the field data collectors during the survey but asked to not observe the interview itself. Full eligibility screening was completed and informed consent obtained before proceeding.

Toward the end of data collection, the team reached the target number of wheelchair users who did not receive services (members of the distribution-only group). From that point forward, only those names on the list provided by organizations known to provide services in conjunction with wheelchair delivery were contacted.

Recruitment Challenges In both Kenya and the Philippines, challenges emerged in recruiting wheelchair users who had received services along with their current chair. The study team devised new strategies to reach these users and obtained the necessary IRB amendments:

nn In the Philippines only, users who had received their wheelchair 10 years earlier were included to increase the participation of users of rugged wheelchairs, which might last longer and be delivered in conjunction with services. This strategy was put in place near the end of data collection.

nn The geography was expanded to include key service- providing organizations.

nn Previously ineligible recruits who were found to be eligible due to the modified criteria listed in the preceding bullets were again contacted and scheduled for interview.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 13 Data Collection Forms The ODK platform The Wheelchair User Survey was translated into Swahili and Filipino by translation consultants hired by Accelovate in both eliminates the need countries. These translations were validated by the IHPDS team for data entry, in the Philippines, while in Kenya another professional hired by Accelovate back-translated from Swahili to English, allowing reducing the risk of review for errors. error.

In both Kenya and the Philippines, data were collected electronically on Android hand-held devices using the open source software package called ODK. This software has a number of advantages: Its electronic format eliminates the need for data entry from paper to database, reducing the risk of error. It compiles data from multiple-language versions of the survey into a single database. One question appears on the screen at a time, and skip patterns may be programmed in, enhancing ease of use and reducing errors. Finally, ODK works offline, saving data to the tablet in real time and allowing subsequent uploads, rather than relying on internet connectivity in the field.

Data Management In the Philippines, surveyors submitted data after every three data collection days or upon completion of six interviews. Data were uploaded from the tablets using ODK Briefcase and were compiled in Excel, where responses were reviewed and edited, if needed.

In Kenya, surveyors submitted their Android tablets to field supervisors on a daily basis. Supervisors perused surveys for quality control purposes and together with surveyors, corrected errors where appropriate before uploading and synchronizing the files to the ODK server.

Once data collection was complete, data were exported into comma-separated values (CSV) format and compiled using Microsoft Excel 2013. At this point, systematic data cleaning was conducted in Kenya using Excel. In the Philippines, data were exported to IBM Statistical Product and Service Solutions (SPSS) version 20 for Windows for cleaning.

Responses to questions requiring temporal recall were inputted page 14—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study differently in the two countries if the respondent remembered only the year. In the Philippines, day and month were randomly generated using the statistical software package Stata. In Kenya, July 1 was used consistently.

Qualitative Approach Instrument Development Accelovate’s wheelchair technical advisors drafted the In-Depth Interview Guide to contextualize experiences of receiving wheelchair services and experiences of wheelchair use, and the relationship between them. The tool was also intended to probe how service may have led to outcomes other than successful wheelchair use, such as educational and social inclusion.

The draft was revised for clarity, to omit overly general questions, and to ensure open-ended questions that would allow users to describe in detail their experiences.

The final tool (see Appendix F) was translated to Swahili and Filipino by consultants hired by Accelovate in both countries. These translations were validated by the IHPDS team in the Philippines, while in Kenya another professional hired by Accelovate back- translated from Swahili to English. The back-translated document was reviewed for errors.

Interviewer Training Interviewers (who were also field team supervisors, all experienced in qualitative data collection) were trained to conduct in-depth interviews. In addition, they reviewed the field guide, practiced how to probe for details without leading the participant, and engaged in role-play. Interviewers practiced using study-provided audio recording devices and playing back recordings during transcription.

Accelovate’s Baltimore team reviewed an initial batch of transcripts and provided feedback to the interviewers.

Qualitative Data Collection and Management Interviews were administered following the In-Depth Interview Guide and were recorded on audio recording devices. In Kenya, interviewers transcribed in-depth interviews and translated them

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 15 into English. In the Philippines, transcription and translation were conducted using an outsourced service. Study coordinators in each country reviewed the translations to clarify any terms before the translations were submitted to the Baltimore office.

Purposive Sampling Strategy Potential qualitative participants were purposively selected from among the wheelchair users who completed the quantitative survey. In both the Philippines and Kenya, targets were set to ensure a balanced representation of age (younger vs. older than 45), sex, service vs. distribution-only, and county/LGU of residence (see Table 4). Supervisors, together with the data collectors, identified potential respondents who fit the assigned profiles. Enthusiastic survey respondents who were willing to share their experiences were particularly sought. Identified respondents were again contacted by telephone or in person and asked to participate in the interview.

Incentives For individuals in wheelchairs, the inconvenience of traveling may be pronounced, especially so in low-resource settings. Based on guidance from key informants, the decision was made to compensate participants for the time taken and inconvenience incurred during study participation. Informants also recommended providing refreshments. Advice on how to operationalize these recommendations differed by country.

Local Jhpiego staff reported that, in Kenya, direct incentives for survey participation are not routinely given, while in the Philippines, local study staff reported that direct incentives for Survey respondents survey participation are routine. Therefore, in the Philippines, cash payment was given as follows: who were willing nn Those completing screening, but ineligible: none to share their nn Those completing full survey: payment valuing local experiences were equivalent of roughly $5 (200 PHP) invited to participate nn Those completing additional in-depth interview: additional $5 (200 PHP) in in-depth interviews. Food Reimbursement Participants could elect to be screened in their home or at another mutually agreed public location central to the neighborhood in page 16—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study which the participant resided. A food stipend or refreshment was made available to participants regardless of whether they screened eligible, consented to participate, or completed the survey.

In the Philippines, barangay (local government) halls and community basketball courts/gymnasiums were often made available for interviews. Participants in the Philippines were offered a food stipend equivalent to $5 (250 PHP), commensurate with the local cost of a catered refreshment.

In Kenya, neighborhood schools, health facilities, and churches were often made available for interviews. Those who participated at a central location were provided with a catered refreshment. Those participating from home were offered a food stipend equivalent to $3 (KES 300), comparable to the per-head catering cost.

Travel Reimbursement Those who participated from home were offered no travel reimbursement. As long as data collection occurred away from home, travel reimbursement was available to participants regardless of whether they screened eligible, consented to participate, or completed the survey.

Key informants reported that, in the Philippines, public transportation is not widely available to or used by people in wheelchairs. In Kenya, wheelchair users are frequently denied access to private minibuses that serve as public transportation. Drivers do not want to take the time to board people in wheelchairs or to give them the extra space they may need, since more passengers generate more money. With this in mind, those who elected to travel for the study could do so in one of two ways: 1. Travel independently: Participants who elected to travel independently (via public transport or other means) to an interview location were reimbursed for the cost of a round- trip bus ride—roughly $2 (100 pesos) in the Philippines and $5 (500 shillings) in Kenya. In addition, this fare was reimbursed for up to one accompanying caregiver. If a respondent traveled (on different days) to take both the survey and the in-depth interview, he or she received two travel reimbursements.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 17 2. Car hire: If the participant could not travel independently a M-PESA was car was to be provided at study expense to take the participant to and from the public location of the survey interview or in- used to reimburse depth interview. However, no participant in either country participants in elected to use a car provided at the study’s expense; instead, they opted to travel independently or be interviewed at home. Kenya.

Payment Logistics In Kenya, Jhpiego has instituted a policy of electronic compensation, known as Jhpiego Digital Registration, for study participants. This system was developed with the aim of increasing accountability and minimizing the risk of carrying money for the purpose of reimbursing participants while in the field. This system uses mobile electronic money transfer (M-PESA) as an alternative to the cash advance system. To receive reimbursement, the system collects each participant’s name, phone number, national identification number, and thumbprint.

During reimbursement, the registered participant is asked to place their thumb on the biometric reader; this information is sent to the Jhpiego Nairobi finance servers and is reviewed against the budgeted amount before the money is released through M-PESA into the participant’s M-PESA account. The finance department will retain these digital records indefinitely for future audit. This information will not be used for any purpose other than audits. In addition, identifying information is kept securely and will not be accessible to the research team or any other person after the research activity. Security measures are maintained to protect the data stored on the Jhpiego servers. This reimbursement system was approved by the study’s IRBs.

Approximately three participants declined to use this system. As a result, one participant interviewed at a study site was not reimbursed for transport, and two who were interviewed at home were not provided with a food stipend.

In the Philippines, payments were made in cash.

Timeline In Kenya, data collection began on December 1, 2015, and ended on June 3, 2015. In the Philippines, data collection started on page 18—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study February 10, 2015, and was completed on May 16, 2015.

Analysis of the Survey Data The survey tool included items about the receipt of many elements of wheelchair services. In the analysis, composite service variables were created where service steps were broken into their component parts (see Appendix G). Assessment, fitting, and training composite variables were created from an answer of “yes” to questions about receipt of any of several service elements. Maintenance, repair, follow-up, and other services were based on single survey items.

Household wealth was based on questions posed in large household surveys. Household characteristics reported by more than 5% of the sample (water source, toilet type, main type of fuel source, main floor type, main wall type, number of rooms, and household assets such as electricity, radio, TV, mobile phone, refrigerator) were entered into a principal components analysis. The resulting variable was split into five equal groups or quintiles of wealth, representing a relative distribution of respondents on wealth from poorest to richest.

For descriptive results, we present frequencies and tabulations of variables. In bivariate analysis, we examined each wheelchair service item or composite variable and its association with each outcome. We examined the p-value from unadjusted models of logistic (for two-level outcome) or multinomial logistic regression (for three-level outcome) that accounted for clustering. The continuous outcome of number of wheelchairs was right-skewed in distribution and compared initially using an equality of medians test; later it was split 2+ vs. 0 to 1. We also examined associations between wheelchair users’ characteristics and each outcome. Wheelchair items significant at p<.10 were entered into multivariable models. We controlled for a standard group of user characteristics, disability, and wheelchair-related items, including county (Kenya), local government unit (Philippines), or residence location; age categories; education categories; marital status; type of work; wealth quintiles; condition that led user to need a wheelchair; type of organization/entity distributing the current wheelchair; whether the current wheelchair was acquired at no cost; and the wheelchair type. In the models of outcomes of daily wheelchair use and high performance of activities of daily

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 19 living, we controlled for multiple wheelchairs acquired in the last Stakeholders played five years (2+ vs. 1), as our qualitative data suggested that users had different wheelchairs for different purposes. In multivariable a critical role in models of falls, we examined a model that did not adjust for daily reviewing and wheelchair use and a model that did. In the multivariable models of pressure sores (any vs. none) and falls (non-serious vs. none validating findings. and serious vs. none), we present models adjusted for high daily wheelchair use and multiple chair acquisition as well as for services received and user characteristics. We report adjusted odds ratios, 95% confidence intervals, and p-values in the tables and describe significant wheelchair services associated with each outcome. All analyses were conducted in Stata 13.0 (College Station, TX).

Stakeholders in Kenya and the Philippines also played a critical role in reviewing and validating findings. In August 2015, two- day research consultation meetings were convened in both countries (Appendixes H and I) with more than 100 representatives of government agencies, NGOs, DPOs, academe, wheelchair manufacturers, and wheelchair professionals. Accelovate shared study findings and partnered with trusted local sector leaders to facilitate break-out discussion groups. Stakeholders interpreted findings (see Discussion) and developed recommendations (see Recommendations). To maximize stakeholder expertise, research consultation meetings replaced the formal writing workshops proposed in Accelovate’s work plan.

Analysis of Qualitative Interview Data Interviews were transcribed and translated into English. Five members of the research team coded the English transcripts using Atlas-ti software. A predetermined code list was created based on the four overarching research questions and a review of a subset of transcripts. To ensure that codes were being applied in the same way by different coders, standard code definitions were developed, multiple people coded a subset of transcripts, and coders met periodically to discuss the coding process. Emergent codes were added as the coding process continued.

Nine research questions related to the qualitative data were developed: 1. How do wheelchair users obtain wheelchairs?

page 20—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 2. How do wheelchair users describe the fitting and assessment they received? 3. What kinds of other services do wheelchair users describe receiving? 4. How do wheelchair users describe the training they received?

5. What factors cause wheelchair users to discard a wheelchair and obtain another? 6. What factors cause wheelchair users to retain a given wheelchair for a long time? 7. What kinds of peer support do participants value? 8. How do people describe the factors that enable using the wheelchair a lot and in different life spaces? 9. What kinds of health outcomes related to wheelchair use were described?

In the analysis phase, a memo was generated for each of these nine research questions by one analyst and discussed with the other analysts. Data were queried within the software to examine the research questions using the computer-assisted NCT analysis approach described by Friese (2014).

Ethical Considerations and Approvals This study received ethical approval from the IRBs of the Johns Hopkins University Bloomberg School of Public Health in Baltimore, Maryland, United States; the Kenya Medical Research Institute in Nairobi, Kenya; and the University of Philippines, Manila. All study participants provided informed consent. The full, final approved research plan is available from Accelovate upon request.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 21 Findings

Kenya Screening and Eligibility In Kenya, the team received 1,484 names of potential participants from 29 organizations. Eight of these organizations were branches

of the Association of Persons with Disability in Kenya (APDK). Uasin Further, three organizations brought 21 eligible participants Gishu Kisumu directly to the study site. In addition, 259 participants were Kericho Nakuru Kisii Kiambu recruited through snowball sampling (referral by another Nairobi

participant in their network). This added up to 1,764 listed names Kajiado (85% from organizations and 15% snowballed).

Of the 1,764 names, 152 were repeated. We were unable to Mombasa contact 42% of the remaining 1,612 potential participants, whose Kenya study area telephone numbers were missing, incomplete, wrong, or out of service, or who did not answer their phones. For 10% of the potential participants whom we did not reach, family members reported that the wheelchair user had died.

A total of 941 potential participants were prescreened on the phone. Among them, 54% (n=512) fit our eligibility criteria. Among the 429 ineligible participants, reasons for ineligibility were as follows:

nn 28% were not basic wheelchair users.

nn 19% were less than 18 years old.

nn 17% could not complete the survey in Swahili or English, sometimes due to disability.

nn 15% lived outside the urban and peri-urban counties that had been selected for the study.

nn 12% had received their current wheelchair more than 5 years or less than 3 months before the study.

nn 4% did not own a wheelchair at the time of the prescreening.

Another 3% screened eligible but were excluded because the team had reached the targeted number of interviews for the distribution-only arm; at that point, the team was recruiting only for the service group.

Of the 512 participants who prescreened eligible, we were able to survey only 440 (27% of the original list). Fourteen percent of page 22—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study the prescreened eligible users were unable to be surveyed for the following reasons:

nn Participants could not be reached on the day before or the day of the planned interview.

nn Participants declined to be interviewed or did not show up after confirming the appointment.

nn The area was inaccessible due to heavy rainfall or distance to travel.

nn Participants had temporarily relocated outside the selected counties.

nn Participants were unwell at the time of the planned interview.

Of the 440 interviews conducted, 20 were not analyzable for the following reasons:

nn There was one interviewee whose snowball source could not be traced, so an analytic cluster could not be assigned. (In Kenya, snowballed participants were assigned to a cluster based on the organizational affiliation of their recruiters.)

nn There were two interviews in which an interpreter was used (interviews were meant to be conducted in English or Swahili only, without the mediation of an interpreter).

nn Three interviews were later determined to have been conducted with persons who were below the age of 18 years, based on the birth date on the survey.

nn Fourteen participants were recruited by community health extension workers, a method that lay outside the protocol.

Interviews with 420 participants were analyzed. Among the participants, 249 (59%) were classified as distribution-only respondents. The remaining 170 (40%) were classified as service respondents. One respondent indicated that they did not know whether they received services. Sixty percent (n=250) were recruited from organizational lists, and 40% (n=170) were recruited through snowball sampling.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 23 Sample Characteristics For detailed Kenya data tables, see Appendix J.

The Kenyan study sample was composed mainly of residents of Nairobi (29%) and Kiambu (29%) (Figure 2). Mombasa (14%), Machakos (9%), and Nakuru (8%) were also represented. Other counties of residence included Kajiado, Kisumu, Kisii, Uasin Gichu, and Kericho.

Figure 2. County of Residence: Kenya Study Sample Other 11% Nairobi Nakuru 29% 8%

Machakos 9%

Mombasa Kiambu 14% 29%

Sixty percent of Kenyan participants were male and 40% were female. Forty-two percent of the participants in the sample were married or cohabitating; 49% were never married/cohabitating; and 9% were divorced, separated, or widowed. The sample was relatively young, with a majority of participants under age 50: 32% were 35–49 years old; 39% were 18–34 years old; and 28% were age 50 or older.

In addition, this was a well-educated group. Owing in part to heavy snowball referral through a network of university students, 23% of respondents reported having attended college or university. Thirty-eight percent reported having attended secondary, postsecondary, or vocational school. Thirty-one percent reported attending only primary school, and 8% reported having had no schooling. A quarter (28%) of the sample was unemployed.

For the series of questions describing the characteristics of the current wheelchair, surveyors were instructed to enter responses based on their observations, after being trained to distinguish

page 24—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study these features. More than half of the respondents (58%) had current chairs that were basic indoor chairs; 27% had rough terrain chairs; and 15% had chairs that were of unknown type. Unknown type was recorded when wheelchair users presented for the study using wheelchairs that were not their most recently acquired devices. In other instances, wheelchair users were brought to the study site without their wheelchairs, or surveyors were unable to make definitive designations. Questions about cushions were also answered based on surveyor observation, and surveyors reported not knowing whether the chair had a cushion 14% of the time. Surveyors reported that 55% of chairs included a cushion; 31% did not. On those with a cushion, 63% were observed to have comfort cushions, 34% pressure relief cushions, and 3% other cushions.

Other survey items were read aloud to respondents, with respondents’ answers recorded.

Our sample included high numbers of respondents with spinal cord injuries (29%) and polio/post-polio (24%) (Figure 3). Thirteen percent had congenital disabilities. The remaining 34% had disabilities caused by the following circumstances:

nn Amputation (7%)

nn Old age/arthritis/bone problems (6%)

nn Stroke/nerve/clot (3%)

nn Accident (4%)

nn Infection (3%)

nn Surgery/medical error/injection (2%)

nn Muscle problems/weakness (2%)

nn Diabetes (1%)

nn Other causes (6%)

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 25 Figure 3. Reasons for Needing a Wheelchair: Kenya Respondents

Other (varied, including 34% old age and accident)

Cogential 13%

Polio/Post-Polio 24%

Spinal Cord Injury 29% (Para/quad)

0% 20% 40% 60% 80% 100%

Eighty percent of Kenyan respondents reported receiving their most recent wheelchair at no cost. These wheelchairs came from a variety of sources. The largest proportion, reflecting the fact that recruitment relied on organizational lists, came from charities (38%). Government provided 17% of wheelchairs, and hospitals provided 9%. Fifteen percent of wheelchairs came from other sources, including pharmacies and medical supply stores.

Wheelchair Services Received Levels of service provision were measured by self-report, as described in Table 1. Some service steps referred only to the current wheelchair, while others referred to current or past wheelchairs. In the Kenya sample, 31% of respondents received assessment services in conjunction with their current wheelchair (Figure 4).

Table 1. Service Measurement in the Survey Criteria for Type of Service positive Questions asked response Assessment Yes to at Needs identification: least 2/3 • Did the wheelchair provider measure or ask about aspects (needs your home environment (such as doorways and identification, indoor spaces)? and/or measurement, • Did the wheelchair provider ask you about how and choice) where you would use your wheelchair? Measurement: • Did the wheelchair provider measure your body? Choice: • Did the wheelchair provider let you express your needs related to the wheelchair? and/or • Did the wheelchair provider listen to your needs and use the information you expressed? Skin check Yes to question • Did the wheelchair provider ask you or physically check you for skin problems, sensation, or pressure sores? page 26—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Criteria for Type of Service positive Questions asked response Fitting Yes to at least • Were you shown different types of wheelchairs or 1/5 questions features to choose from? • Did you have a choice from among a range of wheelchairs? • Did you and your wheelchair provider agree on choice of wheelchair from the range of wheelchairs? • Did you receive the wheelchair that you chose in agreement with the wheelchair provider? • Did the wheelchair provider adjust or modify the wheelchair according to your needs? Fit while Yes to question • Did the wheelchair provider assess the fit of the propelling wheelchair while you propelled the chair? Unsafe Yes to question • Did the wheelchair provider check for unsafe pressure pressure at your seat cushion surface (this would have required the assessor putting his/her hand under your buttocks)? Training Yes to at least • Did you ever receive any training related to the use of 1/4 questions a wheelchair? • During any training you have received, were the following addressed or not addressed: (1) how to get around in a wheelchair, (2) how to get in and out of a wheelchair, (3) how to prevent pressure sores (e.g., by performing pressure relief (leaning or lifting often)? Peer group Yes to question • Have you ever received peer group training? This is a training special training program from other wheelchair users on several topics, usually not at the time that you received the wheelchair for the first time. Maintenance Yes to question • Have you ever been instructed in taking care of your instruction wheelchair (e.g., keeping it clean, oiling moving parts, tightening spokes, and pumping tires)? Repair Yes to question • Have you ever been told where to seek help with instruction wheelchair repairs that you cannot manage yourself? Follow-up Yes to question • Has a wheelchair provider ever contacted you to ask how you are doing with a wheelchair since you received it?

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 27 Figure 4. Services Received: Kenya Respondents1

Assessment 31% Fitting 34% Training (ever) 27% Maintenance (ever) 26% Repair (ever) 15% Follow-up (ever) 15% 29%

0% 20% 40% 60% 80% 100%

Twenty-four percent of respondents said they were checked for skin problems or pressure sores. Thirty-four percent of respondents received fitting services with their current wheelchair. In addition, 42% said that a service provider had assessed the fit specifically while they were propelling the chair. Fourteen percent reported being checked for unsafe pressure in the seating area. Training was reported by 27%, while peer group training was reported by 14%. Instruction in maintenance was received by 26%, and 15% reported receiving instructions for where to seek repairs. Fifteen percent of respondents received follow-up services.

Outcomes Achieved Frequency of Wheelchair Use: The survey asked respondents to describe how often they use or occupy their wheelchair. To guide their recall, surveyors asked:

nn In the morning, from the time you wake until midday, how many hours are you in the wheelchair each day (on average)?, followed by:

nn From midday to when you go to bed, how many hours are you in the wheelchair each day (on average)?, and:

nn So, overall in a day, you spend about _____ (# hours) in the wheelchair. Is that right?

This last number was used for analysis. Sixty percent of the Kenya sample reported using their wheelchair for eight or more hours

1 Equal numbers of respondents who had received wheelchair services in conjunction with receipt of the current/ most recently acquired wheelchair and those who did not were sought. Based on screening and eligibility questions, fewer than half of respondents had a provider’s assistance choosing their current wheelchair. In Kenya, respondents of analyzable surveys included 41% (170 out of 420) who had received a provider’s assistance choosing the most current wheelchair. page 28—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study daily. Roughly equal proportions of the sample reported using their chair for part of the day (1–7 hours) (23%) and not using their chair daily (17%). One respondent refused to answer.

Independent Navigation: The survey’s modified “life space” module examined independent (unassisted) mobility indoors and outdoors.

Indoors Wheelchair users were asked:

nn During the past four weeks, have you been to other rooms of your home besides the room where you sleep? (Yes/No/ Not Applicable—there are no other rooms)

nn Did you use your wheelchair to get there? (Yes/No)

nn Did you need help from another person to get there? (Yes/ No)

Those who had another room in their house besides the room where they sleep, had been there in the past four weeks, had used their wheelchair to get there, and did not need help from another person to get there were considered able to successfully navigate independently indoors.

In Kenya, 349 respondents had another room in their house besides the room where they sleep. Of these, 53% had navigated there independently in their wheelchair.

Outdoors Wheelchair users were asked:

nn During the past four weeks, have you been to an area outside your home? (Yes/No/Not Applicable--explain)

nn Did you use your wheelchair to get there? (Yes/No)

nn Did you need help from another person to get there? (Yes/ No)

Those who had been to an area outside their home, had been there in the past four weeks, had used their wheelchair to get there, and did not need help from another person to get there were considered able to successfully navigate independently outdoors.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 29 In Kenya, 409 respondents indicated that they had an outdoor area to reach. Of these, 25% had navigated there independently in their wheelchair.

Activities of Daily Living: The survey assessed whether certain ADLs were performed unassisted (independently) or assisted. In Kenya, 95% of respondents reported eating independently, 82% reported dressing independently, 75% reported independent toileting, and 76% reported bathing independently. An ADL score was calculated and respondents were divided into those who performed up to two ADLs independently (n=84) and those who performed three or four ADLs independently (n=336).

Pressure Sores: To assess experience with pressure sores in the current wheelchair, surveyors showed respondents a diagram of the seating area of the wheelchair, and asked: Since you received your current wheelchair (the one you most recently acquired), how many pressure sores have you ever had in the area circled? In Kenya, 379 respondents answered this item, and 18% reported at least one pressure sore in the seating area since receiving their current wheelchair.

Multiple Wheelchair Acquisition: Respondents were asked about their wheelchair acquisition history. In Kenya, with 417 responding, more than half (56%) of those surveyed reported acquiring two or more wheelchairs over the last five years.

Associations between Services and Outcomes in Kenya Research Question 1: Among wheelchair users who received assessment and fitting for their current (most recently acquired) wheelchair, what percentage use it at a high level (≥8 hours per day)?

In answering this research question, we present all wheelchair services associated with daily use. The complete bivariate results are in Appendix J, Kenya Bivariate Results, Table 1. Users who had received instructions on how to care for their wheelchair were more likely to use their chair daily at a low level (1–7 hours per day) (28%, vs. 22% who had not received instructions) and at a high level (≥8 hours per day) (62%, vs. 59% who had not received instructions) (p<.022). Three items—training, fitting, and follow- up by the provider to ask the user how s/he was doing with a page 30—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study wheelchair—did not quite reach statistical significance (p=.056 to p=.088).

Multivariable results are in Appendix J, Kenya Multivariable Models, Table 1. As expected, the odds of high daily use of a wheelchair (≥8 hours per day) vs. not using the wheelchair daily were higher among those who had ever been instructed in how to take care of the wheelchair (odds ratio [OR] 3.3, 95% confidence interval [CI]: 1.0–10.4; p<.044). Unexpectedly, the odds of high daily wheelchair use were lower among those whose provider was ever in contact to ask how the user was doing with the wheelchair (OR 0.4, 95% CI: 0.2–0.9); p<.022), holding all other factors constant.2*

Research Question 2: Among wheelchair users who ever received wheelchair user training, what percentage (a) use their current wheelchair eight or more hours per day and (b) use it to independently navigate indoors and outdoors?

Please see above for daily wheelchair use. Unassisted indoor wheelchair use was associated with seven wheelchair service items in bivariate analysis; complete results are listed in Appendix J, Kenya Bivariate Results, Table 2. Users who received two or more service items were more likely than those who did not to report unassisted indoor use (70% vs. 46%, p<.001). This level of indoor use was similar for users who received fitting (68% vs. 45%, p=.004); training (64% vs. 48%, p=.001); fitting the wheelchair while the user propelled the chair (65% vs. 48%, p=.004); and being asked or physically checked for skin problems, sensation, or pressure sores (63% vs. 49%, p=.008). Users who reported that a provider had ever helped him or her choose the right wheelchair reported indoor unassisted use at 60%, vs. 47% who did not receive help (p=.021). Users who ever received peer group training reported indoor unassisted use at 65%, vs. 51% who did not (p=.042). Unassisted outdoor wheelchair use was associated with three wheelchair services: fitting (p=.001), training (p=.036), and fitting the wheelchair while the user propelled the chair (p=.003).

* An odds ratio that is between 0.0 and 1.0 is interpreted as lower odds of the outcome.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 31 In the multivariable analysis (Appendix J, Kenya Multivariable Models, Table 2), unassisted indoor wheelchair use had a strong association with assessment, while other wheelchair services at the bivariate level were no longer significant in the multivariable model. Compared to users who did not receive assessment on two or more aspects, those who did receive assessment had higher odds of reporting unassisted indoor use (OR 3.7, 95% CI: 1.5–3.9; p<.001), holding other factors constant. Regarding unassisted outdoor wheelchair use, the four service items significant at the bivariate level were no longer significant in the multivariable model. However, one wheelchair service item became significant: users who had ever been told where to seek help with wheelchair repairs had higher odds of unassisted outdoor wheelchair use (OR 2.8, 95% CI: 1.5–4.8; p<.001).

ADL performance (3 to 4 ADLs vs. 0 to 2) was associated with three wheelchair service items in the bivariate analysis (Appendix J, Kenya Bivariate Results, Table 3). High independent ADL performance was reported by 87% of users who were trained, compared to 77% by those who were not trained (p=.016). Among those whose provider fitted the wheelchair while the user propelled the chair, 87% reported high independent ADLs, compared to 75% among those who were not fitted while propelling the chair (p=.003). Similar results were reported by users whose provider asked about or physically checked him or her for skin problems, sensation, or pressure sores.

Based on multivariable models, the odds of high independent ADL performance were greater among users who received training in wheelchair use (OR 3.0, 95% CI: 1.2–7.0; p<.014) and among users whose provider fitted their wheelchair while the user propelled the chair (OR 2.8, 95% CI: 1.6–4.9; p<001). Details are presented in Appendix J, Kenya Multivariable Models, Table 4.

Research Question 3: Is the number of wheelchairs that users have owned (wheelchair turnover) associated with the receipt of the following services in conjunction with any wheelchair: (a) wheelchair assessment and fitting, (b) wheelchair user training, (c) wheelchair follow-up services, and (d) wheelchair maintenance/repair services?

page 32—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Users who received information on where to seek help with wheelchair repairs had greater odds of having acquired multiple (two or more) chairs in the last five years (71% vs 54%, p<.030). The item provider ever helped you choose the right wheelchair did not quite reach statistical significance (p=.03) (Appendix J, Kenya Bivariate Results, Table 3). No wheelchair service item was significant in the multivariable model of multiple wheelchairs acquired in last five years (details in Appendix J, Table 5, Kenya Multivariable Models.)

Additional Outcomes: Pressure Sores and Falls Users who had received fitting services were less likely to have had pressure sores than those who did not receive fitting services (14% vs. 21%, p=.018); details are presented in Appendix J, Kenya Bivariate Results, Table 4. This association remained significant after controlling for potential confounders (OR 0.5, 95% CI: 0.35–0.87; p=.004); the full model is presented in Appendix J, Kenya Multivariable Models, Table 6 .

A three-level variable measuring falls was associated with three wheelchair services. Those who received an assessment of 30 minutes or more appeared to have higher levels of non-serious falls than those who received assessments of 0 to 29 minutes (p=.048); see Appendix J, Kenya Bivariate Results, Table 4. This finding was similar to the variables provider ever helped the user choose the right wheelchair (p=.002) and user was ever instructed in taking care of the wheelchair (p=.002). However, there was no significant association with any wheelchair service in the multivariable model. This also held true after adjusting for daily wheelchair use (Appendix J, Kenya Multivariable Models, Table 7.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 33 Philippines Screening and Eligibility In the Philippines, the team assembled a recruitment list of 1,490 names with the assistance of LGU and barangay officials in Quezon City, Mandaluyong, Taguig, Las Piñas, and Makati; a faith-based organization with substantial wheelchair delivery programs; an NGO where wheelchair users live and work; and snowball sampling. Of these nearly 1,500 names, 39% belonged to people who were deceased or could not be located. Three percent were unavailable, and less than 1% declined to participate. A further 28% of the 1,490 were ineligible. Reasons for ineligibility included no longer using a wheelchair (7%); receiving the current wheelchair more than five years ago (before the change in eligibility criteria to include those who had received their wheelchair more than 10 years ago, which occurred in the last few weeks of data collection) (14%); receiving the current wheelchair fewer than three months ago (5%); being younger than 18 years old (5%); and having a wheelchair that would not be considered basic (e.g., a tricycle, monobloc, or advanced wheelchair) (5%). Other reasons for ineligibility included living outside greater Manila, being unable to answer survey questions in English or Filipino (in some cases due to disability), and—as the study progressed—prescreening into the distribution-only group after the target for that group was met and only service recipients were sought.

The remaining 432 wheelchair users participated in the study Quezon (29% of the original list). Of these, 231 (57%) were classified as City distribution-only respondents in the screening. The remaining 201 Rizal (43%) were classified as service respondents. Mandaluyong

Sample Characteristics Makati For detailed Philippines data tables, see Appendix K. Taguig

The Philippines study population came from six LGUs within greater Manila: Quezon City (35%), Taguig (33%), Rizal (13%), Las Pinas Las Piñas (10%), Mandaluyong (5%), and Makati (4%) (Figure 5).

Philippines study area

page 34—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Figure 5. Areas of Residence in Greater Manila: Philippines Study Sample Rizal Las Pinas 13% 10% Makati 4% Mandaluyong 5%

Taguig Quezon City 33% 35%

Among the participants in the Philippines, 217 (50%) were male and 215 (50%) were female. A majority (63%) of the participants were age 50 or older, 25% were ages 35–49, and 13% were ages 18–35.

Thirty-seven percent of the subjects reported attending secondary, postsecondary, or vocational school; 28% reported attending college or university; 32% reported attending primary school; and 3% reported no schooling or did not know their schooling level. In spite of high educational attainment, reported unemployment was high at 61%.

As noted above, for the series of questions describing the characteristics of the current wheelchair, surveyors were instructed to enter responses based on their observations, after receiving training to distinguish these features. Surveyors reported that 96% of current wheelchairs were basic indoor chairs; just 4% were rough terrain chairs. Questions about cushions were also answered based on surveyor observation, and surveyors reported not knowing whether the current chair had a cushion 1% of the time. Surveyors reported that 28% of chairs included a cushion and 71% did not. Of the wheelchairs with a cushion, 82% had cushions that were observed to be comfort cushions, 13% had pressure relief cushions, and 6% had other types of cushions.

Other survey items were read aloud to respondents, with respondents’ answers recorded.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 35 Our sample included high numbers of respondents with stroke/ nerve issues/clots (26%), polio (19%), and old age/arthritis/bone problems (15%) (Figure 6).

Figure 6. Reasons for Needing a Wheelchair: Philippines Respondents

Other 34%

Old Age, Arthritis, and 13% Bone Problems

Polio/Post-Polio 24%

Stroke/Nerve/Clot 29%

0% 20% 40% 60% 80% 100%

The remaining 40% of causes of disability included:

nn Spinal cord injury (10%)

nn Amputation (8%)

nn Congenital disability (7%)

nn Accident (7%)

nn Other/unknown causes (5%)

nn Infection (1%)

nn Surgery/medical error/injection (1%)

nn Muscle problems/weakness (1%)

Seventy-eight percent of Philippines respondents reported receiving their most recent wheelchair free of charge. These wheelchairs came from a variety of sources. The largest proportion, due in part to the fact that recruitment relied on LGU and organizational lists, came from LGUs (48%) and charitable organizations or organizations for persons with disabilities (PWDs) (21%). Pharmacies and medical supply stores were the source of 9% of wheelchairs; churches provided 2%. Friends and relatives provided 14% of wheelchairs. Five percent came from some other source.

Wheelchair Services Received Calculation of service receipt is detailed in Table 1. In the Philippines, 31% of respondents received assessment services at some point (Figure 7). Checks for skin problems or pressure sores page 36—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study were reported by 15%. Fitting services were provided to 26% of respondents, and 39% were fitted while propelling the chair. An assessor checked 10% of respondents for unsafe pressure at the seat cushion surface. Training in general was reported by 17% of respondents, and peer group training specifically was reported by 13%. Twenty-six percent of respondents had received some instruction in maintenance, and 18% said they had been told where to seek repairs. In total, 20% said that they had received some kind of follow-up services.

Figure 7. Services Received: Philippines3

Assessment 31% Fitting 26% Training (ever) 17% Maintenance (ever) 26% Repair (ever) 18% Follow-up (ever) 20%

0% 20% 40% 60% 80% 100% Outcomes Achieved Frequency of Wheelchair Use: Equal proportions of the Philippines sample reported using their wheelchair for eight or more hours daily (42%) and not using their wheelchair daily (42%). A smaller set of respondents reported using their wheelchair a few hours each day (16%).

Independent (Unassisted) Navigation Indoors In the Philippines, 316 respondents said they had another room in their house besides the room where they sleep. Of these, 37% navigated there independently in their wheelchair.

Outdoors In the Philippines, 430 respondents indicated that they had an outdoor area to reach. Of these, 33% navigated there independently in their wheelchair.

3 Equal numbers of respondents who had received wheelchair services in conjunction with receipt of the current/ most recently acquired wheelchair and those who did not were sought. Based on screening and eligibility questions, fewer than half of respondents had a provider’s assistance choosing their current wheelchair. In Philippines, respondents of analyzable surveys included 44% (201 out of 432) who had received a provider’s assistance choosing the most current wheelchair.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 37 Activities of Daily Living: In the Philippines, 85% of respondents reported eating independently. Toileting independently was reported by 67% of respondents. Independent dressing and bathing were reported by 66% and 63% of the sample. High unassisted ADL performance (two or more ADLs) was reported by 26% of respondents and low ADL performance by the majority (73%).

Pressure Sores: In the Philippines questionnaire, a problem with the skip patterns in the survey made it impossible to reliably analyze pressure sore responses.

Multiple Wheelchair Acquisition: Respondents were asked about their wheelchair acquisition history. One respondent did not recall the number of wheelchairs received in the last five years, and another seven reported that they had not received a wheelchair in the last five years. (Philippines eligibility was extended to those who had received wheelchairs within the last 10 years.) Of the 424 who had received at least one wheelchair over the last five years, 34% reported acquiring two or more wheelchairs during the five- year time frame.

Associations between Services and Outcomes in the Philippines Research Question 1: Among wheelchair users who received assessment and fitting for their current (most recently acquired) wheelchair, what percentage use it at a high level (≥8 hours per day)?

Ten wheelchair service variables were significantly associated with the three-level daily wheelchair use outcome (see Appendix K, Philippines Bivariate Results, Table 1). Sixty-one percent of users who had assessment on two or more aspects used their chair at a high daily level, compared to 34% of those who did not (p<.001). Comparisons of low to no daily use also varied by high vs. low assessment (p=.037). Similar findings were encountered for wheelchair fitting, training, provider observed for fit while wheelchair user propelled the chair, provider checking for skin problems, assessment lasting 30 or more minutes vs. 0 to 29 minutes, provider helping choose the right chair, user receiving instructions on how to take care of the chair, user ever being told where to receive repairs, and user ever participating in peer group training.

page 38—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study In the multivariable analysis, the odds of high vs. no daily use were higher among those whose provider ever helped them choose the right wheelchair (OR 2.8, 95% CI: 1.1–6.9; p<.030), holding other factors constant. Unexpectedly, the odds of high vs. no daily use were lower among those whom a provider checked for skin problems (OR 0.5, 95% CI 0.23–0.97; p<.04). Controlling for these wheelchair services, ever being instructed on how to take care of the wheelchair was associated with lower odds of high vs. no daily wheelchair use (OR 0.5, 95% CI: 0.2–0.9; p<.025). One service was associated with lower odds of low vs. no daily use (1 to 7 hours): ever been instructed in taking care of your wheelchair (OR 0.4, 95% CI: 0.2–0.7; p<.005). The odds of eight or more hours of use per day vs. not using the wheelchair daily were higher among those who had been trained (OR 4.0, 95% CI: 2.3–7.1; p<.001). Details are presented in Appendix K, Philippines Multivariable Models, Table 1.

Research Question 2: Among wheelchair users who ever received wheelchair user training, what percentage (a) use their current wheelchair eight or more hours per day and (b) use it to independently navigate indoors and outdoors?

Unassisted indoor wheelchair use was associated with three wheelchair service items in bivariate analysis: provider checked for unsafe pressure at the seat; assessment took 30 or more minutes; and user ever told where to seek help for wheelchair repairs (Appendix K, Philippines Bivariate Results, Table 2). This outcome was associated with four wheelchair service items at the p<.10 level: provider fitted while user propelled wheelchair; provider ever helped choose right chair; user ever received instructions on how to take care of wheelchair; and user ever received peer group training. However, unassisted indoor wheelchair use was not associated with any wheelchair service items, holding other factors constant (Appendix K, Philippines Multivariable Models, Table 2).

Unassisted outdoor wheelchair use was associated with 10 wheelchair service items in bivariate analysis: assessment on two or more aspects; fitting; training; provider fitted wheelchair while user propelled chair; provider checked for skin problems; assessment took 30 or more minutes vs. 0–29 minutes; provider ever helped choose the right chair; instructions were received on

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 39 how to take care of chair; provider ever told user where to seek help for wheelchair repairs; and user received peer group training; for details, see Appendix K, Philippines Bivariate Results, Table 2. It was associated at the p<.10 level with provider’s assessment and fitting occurred at the home. The item provider fitted the wheelchair while the user propelled the chair was associated with greater odds of unassisted outdoor wheelchair use (OR 2.4, 95% CI: 1.5–4.1; p<.001), while provider’s assessment and/or fitting at home was associated with lower odds (OR 0.6, 95% CI: 0.4–0.9; p<.021) (Appendix K, Philippines Multivariable Models, Table 2).

The independent performance of three to four ADLs (compared to one to two ADLs) was associated with eight wheelchair service items: assessment; fitting; training; provider fitted while user propelled chair; assessment lasting 30 or more minutes; user received instructions on how to take care of chair; user was told where to seek help for repairs; and peer group training (Appendix K, Philippines Bivariate Results, Table 2).

In the multivariable analysis, the item provider fitted the wheelchair while the user propelled the chair was associated with greater odds of high independent performance of ADLs (OR 2.8, 95% CI: 1.8– 4.5; p<.001) (Appendix K, Philippines Multivariable Models, Table 3). However, with a marginal statistical significance, the composite variable on fitting services in conjunction with the current chair was negatively associated with unassisted performance of activities of daily living (OR 0.45, 95% CI: 0.2–0.99; p<.046). This was an unexpected finding.

Research Question 3: Is the number of wheelchairs that users have owned (wheelchair turnover) associated with the receipt of the following services in conjunction with any wheelchair: (a) wheelchair assessment and fitting, (b) wheelchair user training, (c) wheelchair follow-up services, and (d) wheelchair maintenance/repair services?

The item multiple wheelchairs acquired in the last five years was associated with eight service variables: assessment on two or more aspects; fitting; provider fitted the wheelchair while user propelled chair; provider checked for skin problems; provider checked for unsafe pressure at the seat; provider assessment occurred at the home; provider ever helped choose the right chair; and user ever received page 40—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study instructions on how to take care of wheelchair (significant at p<.10). The percentage of users who had two or more chairs in the last five years compared to having one chair was higher in the group that received each service. For example, 46% of users who were assessed had two or more chairs, compared to 29% of who were not assessed. For details, see Appendix K, Philippines Bivariate Results, Table 3.

Unexpectedly, two service items were associated with greater odds of multiple chair acquisition: wheelchair provider’s assessment and/or fitting in the home (OR 2.1, 95% CI: 1.1–4.3; p<.033) and follow-up from the provider to ask how the user was doing with a wheelchair (OR 1.8, 95% CI: 1.2–2.9; p<.007) (Appendix K, Philippines Multivariable Models, Table 3).

Additional Outcomes A three-level variable measuring falls was associated with all wheelchair services except two (provider checked for unsafe pressure at the seat and provider’s assessment occurred at the home). Those who received the service reported higher levels of serious falls compared to those who did not receive the service. For example, 28% of users who received training reported serious falls, compared to 9% of users who did not receive training. Details are presented in Appendix K, Philippines Bivariate Results, Table 3.

In the multivariable analysis, four wheelchair service items were associated with greater odds of serious falls: assessment on two or more aspects; training; assessment lasting 30 minutes or more; and user ever being told where to seek help with wheelchair repairs (Appendix K, Philippines Multivariable Models, Table 4). In an alternate model that controlled for daily wheelchair use, these same wheelchair service items (except assessment) remained significant, and peer group training became significant. Users who were trained, those whose assessment took 30 or more minutes, and those who had peer group training had more than two times greater odds of serious falls vs. no falls compared to counterparts who did not receive these services (training: OR 2.5, 95% CI: 1.4–4.5, p=.002; assessment lasting 30 minutes or more: OR 2.4, 95% CI: 1.3–4.5, p=.005; peer group training: OR 2.1, 95% CI: 1.1–4.0, p=.019). Those who had ever been told where to seek help with wheelchair repairs had more than six times greater odds (OR 6.1, 95% CI: 2.0–18.0; p<.001).

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 41 Cross-Context Quantitative Findings The Kenya and Philippines study populations differed in many ways. The Kenya population was younger than the Philippines population (71% vs. 37% under age 50) and less likely to be unemployed (28% vs. 61%). The leading cause of disability in the Kenya sample was spinal cord injury (29%). In the Philippines, the leading cause of disability was stroke/nerve issues/clots (26%).

More than half of Kenyan respondents (58%) had current wheelchairs that were basic indoor chairs; 27% had rough terrain chairs; and 15% had chairs that were of unknown type (not available for the data collector’s observation). In the Philippines, 96% of chairs were basic; only 4% were rough terrain models. Eighty percent of Kenyan and 78% of Filipino respondents reported receiving their most recent wheelchair at no cost.

In both countries, receipt of each wheelchair service was low (Figure 8).

Figure 8. Wheelchair Service Receipt, Kenya and the Philippines4

Assessment 30% 31% Fitting 34% 26% Training (ever) 27% 17% Kenya 26% Maintenance (ever) 26% Philippines Repair (ever) 15% 18% Follow-up (ever) 15% 20% 0% 20% 40% 60% 80% 100%

Table two describes the expected and unexpected findings in each country. Despite the differences in population and context, some findings were similar, such as the association between having a provider observe wheelchair fit while the user propelled the chair and high independent performance of activities of daily living. Lifetime receipt of training was also associated with wheelchair success outcomes in each country.

4 In each country, equal numbers of respondents who had received wheelchair services in conjunction with receipt of the current/most recently acquired wheelchair and those who did not were sought. Based on screening and eligibility questions, fewer than half of respondents had a provider’s assistance choosing their current wheelchair. In Kenya, respondents of analyzable surveys included 41% (170 out of 420) who had received a provider’s assistance choosing the most current wheelchair; in Philippines, this figure was 44% (201 out of 432). page 42—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Table 2. Summary of Wheelchair Services Received, Kenya and the Philippines Services with Current Chair Receiving assessment services was associated with indoor unassisted wheelchair use in Kenya. In the Philippines, when assessment took 30 minutes or more (vs. 29 minutes or fewer), respondents were more likely to have experienced serious falls. This was an unexpected finding. In the Philippines, being asked about or physically checked for skin problems was unexpectedly associated with lower odds of high vs. no daily chair use. Receiving fitting services was associated with lower odds of having pressure sores in Kenya. Unexpectedly, fitting was associated with lower independent performance of activities of daily living in the Philippines. In the Philippines, receiving assessment or fitting at home was associated with lower odds of outdoor unassisted use and higher odds of multiple chair acquisition, both unexpected findings. In both the Philippines and Kenya, being fitted while propelling the wheelchair was associated with greater independent performance of activities of daily living. In the Philippines, this service was also associated with higher odds of outdoor unassisted wheelchair use. Services Ever Received In the Philippines, having ever had a provider’s assistance with selecting the right chair was associated with greater odds of high vs. no daily wheelchair use.

In the Philippines, receiving wheelchair training was associated with high vs. no daily wheelchair use. In Kenya, training was associated with greater independent performance of activities of daily living. In the Philippines, training was also unexpectedly associated with greater odds of serious falls vs. no falls in a model controlling for daily wheelchair use levels. In the Philippines, receiving peer group training was associated with higher odds of falls (serious falls vs. no falls) in a model controlling for daily wheelchair use levels. This was an unexpected finding. In Kenya, having ever received instruction on how to take care of a wheelchair was associated with greater odds of high vs. no daily wheelchair use. In the Philippines, unexpectedly, the opposite was found: having ever received instruction on how to take care of a wheelchair was associated with lower daily wheelchair use (comparing high vs. no daily use and low vs. no daily use). Being told where to seek help with repairs was associated with unassisted outdoor wheelchair use in Kenya. Unexpectedly, in the Philippines, being told where to seek help with repairs was associated with greater odds of falls (serious falls vs. no falls as well as non-serious falls vs. no falls) in a model controlling for daily wheelchair use levels. In Kenya, having ever been contacted by a provider asking how you are doing with a wheelchair since receiving it (follow-up) was unexpectedly associated with lower odds of high vs. no daily wheelchair use. In the Philippines, follow-up was unexpectedly associated with higher odds of having multiple wheelchairs in the past five years.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 43 Table 3 is a synthesis of two-country survey findings by service. Data are from multivariable models of the outcome on the wheelchair service, controlling for other wheelchair services that were significant at the bivariate level at p<.10. Findings are also adjusted for user characteristics (see footnotes in multivariable tables in Appendices J and K), and the models accounts for clustering as described in the Methods section.

Table 3. Synthesis of Wheelchair User Outcomes Associated with Services Received in Kenya and Philippines5

K K Ph Ph K Ph K Ph

Service Variable IND IND USE USE OUT OUT Low vs not daily Low vs not daily USE High vs not daily USE High vs not daily Services Related to Current Chair OR 3.7, Assessment on 2+ aspects (ASSESS) -- -- ns -- ns -- ns p<.001 Assessment took 30+ min vs 0–29 min -- -- ns -- -- ns -- ns (q306) Provider asked/checked user for skin OR 0.5, -- -- ns ns ns -- ns problems (303b) p=.041 Fitting of Wheelchair (any) (FIT) ns ns ns -- ns ns -- ns OR 0.6, Assessment/fitting occurred at home (q304) ------p=.021 Provider checked for unsafe pressure at seat ------(q303_h) OR 2.4, Fit assessed while user propelled chair (303e) -- -- ns ns ns ns ns p=.001 Services Ever Received Provider EVER helped user choose right chair OR 2.8, -- -- ns ns ns -- ns (q309) p=.030 OR 4.0, Training in Wheelchair (any) (TRAIN) ns ns ns ns ns ns ns p<.001 Peer group training ever received (q521) -- -- ns -- ns ns -- ns Ever instructed in taking care of wheelchair OR 3.29, OR 0.4, OR 0.5, ns -- ns -- ns (q316) p=.044 p=.005 p=.025 OR 2.8, User ever told where to seek repairs (q319) -- -- ns -- -- ns ns p<.001 OR 0.4, Provider contacted user to follow up (q322) ns ------p=.022

page 44—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study K Ph K Ph K K K Ph Ph

/,//.,m/.,m Service Variable non FAL SOR ADL ADL MUL MUL FAL serious vs non FAL FAL non-seriousFAL vs FAL serious vs none FAL non-serious vs none

Services Related to Current Chair Assessment on 2+ aspects (ASSESS) -- ns -- ns -- ns ns ns ns

Assessment took 30+ min vs 0–29 OR 2.42 -- ns ------ns ns ns min (q306) p=.005 Provider asked/checked user for skin ns -- -- ns ------ns ns problems (303b) OR 0.5, OR 0.5, -- -- ns -- -- ns ns Fitting of Wheelchair (any) (FIT) p=.046 p=.004

Assessment/fitting occurred at home OR 2.1, ------(q304) p=.033 Provider checked for unsafe pressure at ------ns ------seat (q303_h)

Fit assessed while user propelled chair OR 2.8, OR 2.8, -- ns ------ns ns (303e) p<.001 p<.001 Services Ever Received Provider EVER helped user choose right -- ns ns ns -- ns ns ns -- chair (q309)

OR 3.0, OR 2.5, ns ------ns Training in Wheelchair (any) (TRAIN) p=.014 p=.002

Peer group training ever received OR 2.4, -- ns ------ns (q521) p=.019 Ever instructed in taking care of ns ns -- ns -- ns ns ns -- wheelchair (q316) User ever told where to seek repairs OR 3.5, OR 6.1, -- ns ns -- ns -- -- (q319) p=.050 p=.001

Provider contacted user to follow up OR 1.9, ------ns ns (q322) p=.007

5 Data are from multivariable models of the outcome on the wheelchair service, controlling for other wheelchair services that were included in the model due to being significant at the bivariate level at p<.10, as well as user characteristics, with accounting for clustering. N=392 in Kenya models and N=403 to 416 in Philippines models, due to some missing data --: service variable not significant at the bivariate level (p<.10) and not entered to multivariable models ns: not significant in the multivariable model K: Kenya Ph: Philippines

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 45 5 Continued The cells with numbers show adjusted p-values from multivariable models. Green: Significant odds are consistent with a hypothesis of the favorable effect of wheelchair services. Green implies a service is associated with greater wheelchair daily use, indoor or outdoor use, high ADLs and lower odds of multiple chairs acquisition, sores, and falls. Gold: Significant odds are opposite to a hypothesis of the favorable effect of wheelchair services. Orange implies service is associated with lower wheelchair daily use, indoor or outdoor use, ADLs and higher odds of multiple chairs acquisition, sores, and falls.

Outcomes USE: 3-level daily wheelchair use outcome (high ≥8 hours; low 1–7 hours; not daily or less than daily) IND: Indoor, unassisted use of wheelchair OUT: Outdoor, unassisted use of wheelchair ADL: High (3–4) vs. low (0–2) independent performance of ADLs MUL: Multiple wheelchair acquisition within last five years (2+ vs. 1 wheelchair) SOR: Any pressure sores experienced with current wheelchair FAL: Ever fallen with current wheelchair (3-level: none, non-serious, serious). Multivariable model data shown control for daily wheelchair use in addition to other predictors mentioned above.

Services ASSESS: A created variable reflecting receipt of services on at least two of the following three domains: Were user needs assessed? • Yes to q303_i: Did the wheelchair provider measure or ask about your home environment (such as doorways and indoor spaces)?), and/or • Yes to q303_j: Did the wheelchair provider ask you about how and where you would use your wheelchair? Was the user measured? • Yes to q303_a: Did the wheelchair provider measure your body? Was the user offered choices? • Yes to q303_c: Did the wheelchair provider let you express your needs related to the wheelchair?, and/or • Yes to q303_d: Did the wheelchair provider listen to your needs and use the information you expressed? An interim outcome was created by adding the three variables so each user was given a score of 0 to 3. Then, a score of 2 or 3 was coded ‘yes’ in the new dichotomous outcome “Assessment on 2+ aspects” and a score of 0 to 1 item was coded ‘no’.

FIT: A composite variable reflecting receipt of at least one of the following items with regard to the current or most recently acquired chair: • Were you shown different types of wheelchairs or features to choose from? (q305) • Did you have a choice from among a range of wheelchairs? (q308_a) • Did you and your wheelchair provider agree on choice of wheelchair from the range of wheelchairs? (q308_b) • Did you receive the wheelchair that you chose in agreement with the wheelchair provider? (q308_c) • Did the wheelchair provider adjust or modify the wheelchair according to your needs? (q303_g)

TRAIN: A composite variable reflecting receipt of at least one of the following items: • Did you ever receive any training related to the use of a wheelchair? (q312) • During any training you have received, were the following addressed or not addressed? • How to get around in a wheelchair (q315_a) • How to get in and out of a wheelchair (q315_b) • Preventing pressure sores, such as by performing pressure relief (leaning or lifting often) (q315_c)

page 46—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Qualitative Findings—Kenya and Philippines Forty-eight in-depth interviews were completed, as described in Table 4. Each gender and age combination for distribution-only and service recipients made up 10% to 17% of the sample. Five geographies in each country contributed qualitative respondent(s).

Table 4. Demographics of Qualitative Interview Respondents in Kenya and Philippines Distribution Service Male Female Male Female County Age Age Age Age Age Age Age Age <45 ≥45 <45 ≥45 <45 ≥45 <45 ≥45

Kenya Nairobi 1 1 1 1 2 Kiambu 1 2 1 2 1 2 Machakos 1 3 1 1 Mombasa 1 1 Nakuru 1 Philippines Quezon City 2 1 1 1 2 Las Piñas 1 1 1 1 1 Taguig 2 1 2 Mandaluyong 1 1 Rizal 2 2 1 Total 6 7 5 5 6 6 8 5 (N=48) Percent of 13% 15% 10% 10% 13% 13% 17% 10% Total

Most interview participants were longtime wheelchair users; a large proportion had started using their chairs as young children. Although previous disability research suggests that only a minority of those who require a wheelchair are able to obtain one, our survey respondents described being able to obtain a series of wheelchairs, primarily through donation, and few described having to go without a wheelchair for a period of time. This is likely because our sampling strategy identified individuals who were recipients of wheelchairs donated through social services organizations; once they have learned how to obtain one wheelchair, they generally had access to the same network for obtaining replacement wheelchairs.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 47 Local government officials provided free wheelchairs only in the Philippines. In both Kenya and the Philippines, the wheelchair donors sometimes were organizations and sometimes concerned individuals. Some wheelchair users obtained their wheelchair through the health care system, such as during a hospital stay. Others described buying their own wheelchairs. In the Philippines, particularly, it was clear that a robust market exists for reselling “I have not stayed used wheelchairs. with a wheelchair A Kenyan man who received services with his current wheelchair for a long time… I expressed reliance on the network of wheelchair providers: just stay for some You see, I don’t ask for anyone to bring me a wheelchair. . . . I have not time and after stayed with a wheelchair for a long time. . . . I just stay for some time and after about two years somebody comes or an organization comes. about two years For like an example some people come here in school and say that we somebody comes have brought you some wheelchairs and we need you to use them. So I move to the next one. or an organization comes.” Although their backgrounds and medical conditions were diverse, most described a similar pattern in which their first wheelchair was unsatisfactory for various reasons. Then, through trial and error and perseverance, they learned what features suited them and sought those out in new chairs. Sometimes, well-timed services could facilitate the process of obtaining an appropriate wheelchair. Experienced users wanted choice in wheelchair selection more than they wanted a service provider to tell them which wheelchair would suit them. However, they recommended that new wheelchair users be given advice and direction in the selection of the chair and training in maneuvering the chair and in chair maintenance, as will be described later in detail.

Chair Retention and Satisfaction From the qualitative data, it would seem that length of chair retention is not necessarily related to satisfaction with the chair and therefore not necessarily correlated with services. Participants often described keeping chairs that were uncomfortable, in poor repair, or poorly suited to their environment because they were the only chairs available to them. As new wheelchairs users, some described a situation in which they did not know anything about the wheelchair options available and thus tolerated a wheelchair page 48—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study that, in retrospect, was suboptimal. Those who received their wheelchairs through donation expressed gratitude and did not expect to receive a choice of chairs, given that they were receiving a free gift. However, once wheelchair users found a chair that suited their needs, they would try to keep it functioning well for as long as possible. Having a suitable wheelchair was one factor that contributed to greater life satisfaction and social engagement. This is how one Filipino male who received services with his current wheelchair described it:

It’s really my favorite because I’m really at ease. I’m really comfortable with that wheelchair. That’s why before, when I wasn’t comfortable with my third wheelchair, I don’t join in those events. Because I wasn’t comfortable. Now, because I have this, I already join. At least I’m able to go to places where I haven’t been to.

If presented with the opportunity to obtain a new chair for free, they might take the opportunity even if their current wheelchair was still functional. Many described holding onto multiple chairs, “I really fit in [this because they served different functions or provided a back-up in case one wheelchair needed repairs. Here is an illustrative quote wheelchair], but from a male respondent in Kenya who received no services with going to bathroom his current wheelchair: with it is so hard, Here is this one, why I prefer this one is because a bit of space and all because there is that. I use it mostly during bathing because the others which—there is one in the car. I really fit in it, but going to bathroom with it is so no room to move hard, because there is no room to move about your legs and all that. about your legs and If you do a shower, plus, of course the water destroys. So this one is old, I can sacrifice. There is another three-wheeled one, the one I was all that. If you do struggling with. It is very swift. So those are already four. It’s only that a shower, plus, of that one really fits, and the one am telling you about, that is in the car. And again, if you look at it, it has started tearing off because again course the water the material is very poor plastic, leather. They give way very easily. You destroys.” find the durability is poor because you are heavy and need to support your back. So I have had about seven, or put it eight, for the 11 years.

Users in both Kenya and the Philippines described the following physical wheelchair aspects as appealing:

nn Fitting, light, and easy to move around in

nn Foldable, so that it can be taken on public transport

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 49 nn Functions that permit easy transfer in and out of the chair, such as removable hand rests

nn Cushions that improve comfort

nn Replacement parts that are easily obtainable

nn Aesthetically appealing

In Kenya, participants seemed to favor non-inflatable/tubeless tires because they are easier to maintain. In the Philippines, opinions were mixed. Some participants said that flat tires occurred frequently with inflatable tires, but that it was easy to have them repaired locally and worth the trouble because they functioned better. Others had opinions similar to those in Kenya, favouring tubeless tires. “When I got this Maintenance and Repair Challenges related to maintaining and repairing wheelchairs wheelchair and were commonly described by respondents in both settings, and the instructional particularly in Kenya. Some respondents had difficulty finding a person capable of repairing their wheelchairs, and some had book, I learned the difficulty affording repairs. As described previously, tires were a proper maintenance, source of frustration. Many respondents said that they initially had not been taught how to maintain their wheelchairs and thus had but it was too late accidentally shortened the chair’s useful life. A Filipino woman [for the previous who received services with her current wheelchair said: wheelchair].” I think they should teach us the proper maintenance for these wheelchairs. Before, I didn’t even have an idea that you can use cooking oil for cleaning the wheelchair and that you should only wipe to clean it and not wash it. That’s the reason why my second wheelchair got rusty. . . I washed and even soaped it. Then, when I got this wheelchair and the instructional book, I learned the proper maintenance, but it was too late [for the previous wheelchair].

Some wheelchair users felt that particular chairs were poorly made and that this made it difficult to keep them functional, while some also said that the road conditions around their homes were very hard on wheelchairs.

Daily Activities and Social Engagement Particularly in the Philippines, peer support from other wheelchair page 50—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study users emerged as important. In areas where formal services were lacking, wheelchair users were able to learn from each other. Some advantages of peer support included the following:

nn Companionship; feeling more comfortable traveling long distances in a wheelchair

nn Emotional support

nn Skills acquisition related to wheelchair use

nn Employment or income generation

One Filipino male respondent who received services with his current chair gave the following explanation:

It helps a lot when I socialize with others. It helps when a person with disability is interacting with another person who has a similar condition. Why? You build a support system by getting to know others who share the same condition, and eventually they become your inspiration. Also, I was able to find a support group that I can ask whenever I have a problem. For instance, they’re the ones who taught me a technique in urinating. It’s actually difficult to go to the washroom when you’re in a wheelchair. So I remember that time, one of the residents here told me that “there’s a style in terms of urinating. Get an empty Gatorade bottle. Wash and place them inside your bag. You can use it when you’re out and you need to urinate. Sometimes, the restroom is not accessible because the wheelchair would not fit the narrow door. You can urinate using that empty bottle.

He described how before learning this, he suffered urinary tract “Those who used to infections as a result of waiting too long to pass urine. Later, he sit around begging went on to say: are no longer doing For example, before, I don’t know how to flip the wheels, how to that and they are balance. I was afraid before that if I move the wheels, I might turn upside down. So, that was one of the things that [friends who were also saving and putting wheelchair users] taught me then how to cross. For example, there’s a that money to their narrow canal or there’s a gutter, how to properly cross those areas. In Kenya, peer support and participation in DPOs were businesses.” mentioned less frequently, and respondents tended to mention formal groups rather than informal interactions. This difference may be because a number of respondents in the Philippines were living or had lived in a DPO that provided housing, jobs, and job

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 51 training. Participants in Kenya described groups related to income generation (such as through handicrafts), playing sports, material and financial support, and emotional support. One Kenyan male participant who received services with his current chair described the benefits of an organization that he had helped found:

Those who used to sit around begging are no longer doing that and they are saving and putting that money to their businesses. I started to help them to remove that stigma so that they would not feel like they have any disability and also train them on how to communicate at home with their brothers and sisters and they should not feel like they are hated. I tell them to sit together with their families and dine together and I even invite their parents to some of our meetings so that we sit and discuss and ask them about their children’s progress so we have this support group and then we also tell [them] that they should not fail to save for their children at least 50 [shillings] a week.

One female Kenyan participant who received no services with her current chair and who is an official in a DPO described her experiences this way:

I have socialized, met people. I have gone for seminars, workshops and even gone for celebrations organized for persons with disabilities because I have access. When I did not have it, I did not know a lot of things. I did not attend such days or barazas [community meetings] or seminars. I could not even communicate with those that I went to school with, you know that there were no mobile phones like today. We were dormant, in the house. It was you, your people, and those who came to visit. Now you can go out, meet people, and chat with them, even exchange ideas with the ones you went to school with and be happy. . . . We came together to form this group with the aim of helping one another, and share ideas. We started table banking. We contribute some cash. If you have a problem you can get a loan [and] then pay back. You may be given two week[s] to a month to repay back. When you repay someone else borrows that and so on. We try to improve ourselves slowly by slowly. If we are able to get a donor and if they chip in—let’s say they give 20 thousand [shillings]—we save 10 thousand and share the balance amongst the group members.

In both settings, the physical environment presented a challenge, and many wheelchair users said that they needed a caregiver to page 52—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study help them navigate outside the home. Experiences using public transport were mixed and seemed to depend on the ease of folding and lifting the wheelchair. Some participants had modified motorbikes that were a tremendous boost to their independent mobility. Some said that the environment was challenging but that having the right wheelchair could make it is easier to navigate. “[With an old One Kenyan woman who received no services with her current chair described the challenges this way: wheelchair], I needed to have a I used to live in a place that the roads were not good, especially during the rainy seasons. I would get stuck in the mud, and it was a huge helper all the time. challenge. And then at times it would rust. Then at times you are alone But with the current pushing that wheelchair in the mud was a huge challenge. . . . There was that wheelchair I gave out and the reason was because I was unable wheelchair, I can to operate it on my own. I could not push myself, and if I was riding operate it on my down hilly areas I might push it. And then it goes too fast, and I might ram into something and get hurt or fall down. So I had no control own.” over it. I needed to have a helper all the time. But with the current wheelchair, I can operate it on my own. I don’t need a helper.

In the Philippines, some respondents also described challenges with roads, unexpected flat tires, and inaccessible buildings; however, they also said that Manila generally was easier to navigate than rural areas. In both countries, respondents said that using a wheelchair in the urban and peri-urban areas where they lived was much easier than using a wheelchair in rural areas. Some described challenges visiting rural areas or even refrained from visiting family in rural areas because traveling to and then navigating around rural areas was too frustrating.

A few interview participants described perceived stigma and said they felt very depressed about their conditions. Both of these factors limited their wheelchair use outside of the home. For example, one woman from Kenya said:

I really like using the wheelchair and the emotional part that comes with it when you are on the wheelchair and everyone is staring at you, and I hated going outside because you would find people staring at you and some offering you money like you are a beggar without knowing whether you need it or not or even talking to [you].

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 53 Later, while in a hospital, she received some training, which was led by both health providers and other wheelchair users, and she said that this helped her improve her outlook.

Similarly, one young woman from the Philippines who had cerebral palsy said:

When I’m going outdoors other people look at me differently because I am using a wheelchair. It’s all right for me now because I got used to it already.

She rarely left her home and only did so when accompanied by a family member, but she attributed this to the narrow streets that were wheelchair inaccessible.

Thus, the built environment and availability of other types of transport, including modified motorbikes, seemed to be an important contributor to wheelchair users’ independent navigation.

Health Outcomes Related to Wheelchair Use Although wheelchairs enabled respondents to have more rich and fulfilling lives, a notable proportion described health hazards related to wheelchair use. The two health problems most commonly discussed were pressure sores and falls or injuries related to wheelchairs tipping over. Problems with pressure sores and falls led several respondents to change wheelchairs or to use their wheelchairs less often than they would like to. One Filipino male who received some services with his current chair said:

My first wheelchair, the reason I got rid of it was it always causes me accidents. It turns over. Every time I do this. When I do this in a sudden, it turns over. . . . It tips you backward along with it. . . . Yes. Even this one, I only use this sometimes. I only use this wheelchair when I’m cooking, but not when I have to go outside because it’s dangerous.

As a result of these past bad experiences, respondents recommended that new wheelchair users be given more training to prevent sores, falls, and injuries. One Kenyan woman who received no wheelchair services with her current chair said:

page 54—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study When a person is being given the chair, they need to be trained. We “When a person have the first timers, those who do not know anything. It is like taking a child to school and giving him a book and you do not give him a is being given the pen. What will he write? At times, you may find some [wheelchair chair, they need to users] stuck on the road simply because they are not aware of what to do, but if they were trained they would have known what to do. . . . be trained… It is For me some even ask me how I use mine; I tell them it is because of like taking a child to good maintenance. Treat it as you treat your body, because it acts as your legs. And if you do not take care of it, that is like cutting your legs. school and giving Similarly, a Kenyan man who received no services with his current him a book and you wheelchair said: do not give him a You know, I was never trained on how to use a wheelchair. I trained pen. What will he myself, but you find that when you go to [wheelchair services write?” organization], this is where I got some handbooks. I read them myself and see: if you are going downwards, this is the way to sit. If you are going up somewhere, this is the way to position yourself. That is something I didn’t know because nobody told me, getting that wheelchair and going home. It is a donation. Some organizations organize for meetings in big hotels, but they don’t bring somebody to train you about that wheelchair. It is quite a mess. They think you just need a wheelchair. I do not even think they call you for a briefing, just to tell them how the wheelchair is serving you, are you satisfied, what is it that they could do [for] others they are donating to. They don’t get that feedback from the people using a wheelchair. They do a good thing, yes, by donating. But what information have you given about that product? That one they don’t do, and it will serve a very good purpose because somebody is taking something they don’t know how to use.

Several respondents also described wheelchairs that caused sores. Sometimes they described discarding a wheelchair for this reason, or modifying a wheelchair, such as by adding a cushion. As would be expected, problems with pressure sores led to substantial suffering and interruption of life activities, such as attending school.

Summary of Qualitative Findings In summary, most interview participants were experienced wheelchairs users who were used to varying levels and types of services during the lives. They demonstrated tremendous resilience, resourcefulness, and coping skills related to wheelchair use. Most felt that wheelchair services were beneficial, and the conversations

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 55 demonstrated all the other contextual factors that influenced their level of functioning.

During the in-depth interviews, wheelchair users were asked what services they would have liked to receive or would be beneficial for other wheelchair users. Their suggestions for services for wheelchair users and their families or caregivers are listed in Table 5. The same categories were described in both Kenya and the Philippines.

Table 5. Recommendations for Wheelchair Users, Caregivers, and Families Recommendations: Services for Wheelchair Users Employ disabled people in service provision Tailor services to the type of disability and life experience of the wheelchair user Measure the person and fit the wheelchair to the person Provide choice and let the wheelchair user ride in the wheelchair before selecting it Take the home environment into account when selecting the chair Share coping mechanisms to handle stigma against wheelchair users Provide a written instruction manual Provide emotional support and demonstrate concern for the wheelchair user; demonstrate good listening skills Follow up after the wheelchair has been provided; provide a way for wheelchair users to contact the provider with questions Train/Teach the user how to: • Transfer in and out of the wheelchair • Use the wheelchair for extended lengths of time without discomfort and without developing pressure sores • Do muscle stretches in the wheelchair • Maneuver the wheelchair in various types of terrain; prevent falls • Manage toileting needs while in a wheelchair • Manage other needs related to hygiene • Clean, do routine maintenance, repair the wheelchair; help wheelchair users understand the importance of routine maintenance (such as oiling) • Customize or adapt the wheelchair for personal needs Recommendations: Services for Caregivers and Family Members of Wheelchair Users Teach family members and caregivers how to: Transfer in and out of the wheelchair Maneuver the wheelchair in various types of terrain Recommendations: Services for Caregivers and Family Members of Wheelchair Users Clean, do routine maintenance, repair the wheelchair; help wheelchair users understand the importance of routine maintenance (such as oiling) Provide emotional support page 56—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Discussion

General Observations Our findings suggest that service provision that accompanies wheelchair distribution may be critical to achieving positive outcomes and protecting donor wheelchair investments. Our data establish a platform to develop and test service model innovations.

In Kenya and the Philippines, numerous services were significantly Most striking were associated with successful wheelchair use in multivariable models. the associations Most striking were the associations between successful use of the current wheelchair and two services: (1) ever receiving between successful wheelchair user training, and (2) being fitted while propelling in use of the current the current wheelchair. In Kenya, training was associated with 2.9 times increased odds of reporting a high level of independent wheelchair and two management of activities of daily living. In the Philippines, services: (1) ever training was associated with four times greater odds of reporting high daily wheelchair use. Those who were fitted while propelling receiving wheelchair their wheelchair were 2.8 times more likely to report a high level user training, and of independent management of activities of daily living in both Kenya and the Philippines. Being fitted while propelling was also (2) being fitted while associated, in the Philippines, with 2.4 times increased odds of propelling in the reporting unassisted wheelchair use outdoors. This service was received by 42% of Kenyan and 39% of Filipino respondents, current wheelchair. making it one of the most commonly received services we evaluated. Perhaps service providers, understanding the importance of this aspect of fitting, already prioritize it above other services recommended by the WHO.

The low level of services received in both countries was striking. As noted, the study population was carefully balanced to include those who had received at least some service and those who had received none. Given the team’s efforts to recruit into the service group, it is probably fair to assume that, across the general population of wheelchair users in both countries, service receipt is markedly lower even than is reflected here.

The fact that we recruited based on wheelchair receipt may have led to a sample of wheelchair users who are more socially connected than the average person who needs a wheelchair. Previous disability research suggests that only a minority of those who require a wheelchair are able to obtain one, whereas our respondents described, in both the quantitative and qualitative findings, being

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 57 able to obtain a series of wheelchairs. However, some respondents described tolerating a wheelchair that was suboptimal until they learned of other options for obtaining chairs.

While the low levels of independent navigation in a wheelchair indoors (53% in Kenya, 37% in the Philippines) and outdoors (25% in Kenya, 33% in the Philippines) are disturbing, it is important to note that those who do not navigate independently in a wheelchair might be navigating independently without their wheelchair. Thirty-five percent of respondents in Kenya and 43% of respondents in the Philippines reported using other mobility aids. Measuring indoor unassisted wheelchair use is difficult in low-resource settings where respondents might not have another area to reach within the home.

The many contextual factors that the respondents described as influencing their level of functioning might be critical contributors to study outcomes. Some qualitative respondents said that interacting with peers who were also wheelchair users helped them fill in their knowledge gaps and acquire new skills. However, others were relatively isolated and unable to access training or join peer groups. These findings suggest that interventions such as wheelchair skills training and pressure sore prevention could lead to improved personal functioning in both countries. Also, perhaps wheelchair organizations that foster social support could reduce wheelchair users’ isolation and improve their daily functioning.

Although the role of DPOs in serving people with disabilities lies outside the WHO definition of wheelchair services, it is clear from the qualitative findings that these organizations play an important role in providing essential services and may contribute to positive social and economic outcomes in the studied settings. WHO guidelines currently do not specify that services be given to caregivers or family members of wheelchair users; based on the qualitative findings, there are a number of services for which wheelchair users could benefit from specific family support.

page 58—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Kenya As noted, the high level of education observed in the Kenya sample is due in part to heavy snowball referral through a network of university students. In addition, our population had a high proportion of people with spinal injury, which commonly results from road traffic crashes (WHO 2013). In Kenya, road traffic injury mainly affects people who are between the ages of 15 and 45 (Bachani et al. 2012). Therefore, some participants might already have attained a higher level of education prior to the spinal injury.

Assessment Results In the Kenya sample, those who received assessment services were more likely to report unassisted indoor wheelchair use.

Observations of researchers:

nn If a provider properly assesses the functional and environmental needs of the wheelchair user, successful wheelchair use is likely facilitated.

Fitting Results In the Kenya sample, those who were fitted for their wheelchair were less likely than their counterparts to report having had a pressure sore since receiving their current wheelchair. Those who were fitted while propelling the chair were more likely to report a high level of independent management of activities of daily living.

Observations of researchers:

nn Proper fitting services are designed to ensure the safety of the wheelchair for those at risk for pressure sores.

nn Providers fit clients as they propel in order to determine how the wheelchair user will perform certain functions in the chair. When the wheelchair is tailored to the functional needs of the user, performance of ADLs may be facilitated.

Training Results In the Kenya sample, those who had ever received user training were more likely than their counterparts to report a high level of independent management of activities of daily living.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 59 Observations of researchers:

nn Ever having received training in the key functional skills assessed by the survey seems indeed to correlate with the successful, independent performance of daily activities that may rely on these basic skills.

nn Cumulative learning by basic wheelchair users may come from exposure to multiple providers, personal experience, and peer-to-peer learning.

Maintenance/Repair Results In the Kenya sample, those who were ever instructed in the care and maintenance of their chairs were more likely than their counterparts to report high daily use.

Observations of researchers:

nn Those with the skills to care for their chairs may have been more confident in the capacity of their wheelchair to withstand daily use, or their wheelchairs may have aged more gently, allowing the wheelchairs a longer lifespan.

In the Kenya sample, those who were ever told where to seek help with wheelchair repairs were more likely than their counterparts to report independent outdoor use.

Observations of researchers:

nn In in-depth interviews, Kenyan wheelchair users frequently described frustration over the damage done to their wheelchairs while they navigated over rough terrain, often on inadequate tires. It would seem to follow that those who knew how to find repairs were more likely to risk using their chairs at all.

Follow-Up Results In the Kenya sample, those who were ever contacted and asked how they were doing with a wheelchair were less likely than their counterparts to report high daily use. This was an unexpected finding.

page 60—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Observations of researchers:

nn As noted by stakeholders in the Philippines, follow-up ever was assessed, but in fact follow-up may be needed with regard to the current chair in order to increase successful wheelchair use. Perhaps the study question was too broad, and some who were contacted did not receive full follow- up services. For example, perhaps some were followed up by phone or text message, which may be inadequate. It is further possible that those with a higher level of need were both more likely to be followed up and less likely to use their wheelchairs. In general, questions about ever receiving services may be particularly susceptible to recall bias.

Stakeholder Observations In Kenya, a research consultation meeting was convened at the Lake Elementaita Lodge on August 26–27, 2015 (see Appendix H). Government, NGOs, FBOs, wheelchair manufacturers, DPOs, wheelchair users, wheelchair professionals, academe, and quality assurance organizations were among the stakeholders consulted on study findings. Small stakeholder groups worked with a facilitator and note taker drawn from the study team or from a core group of Kenya research consultation meeting sector leaders to develop observations rooted in the local context (below) and to generate recommendations (see Recommendations). Their impressions, as summarized by note takers, are described below.

What findings stand out? Observations of local stakeholders In the Kenya sample, a high number of wheelchair users lacked independent use of their wheelchair outside their home.

nn We are far from having an inclusive society; with lax provision of assessment and fitting services, people are not getting wheelchairs suited to their needs.

nn What is the quality of the user training being provided? Some wheelchair users do not know how to use their wheelchair outside.

nn The research concentrated on the individual, yet the external environment is another important barrier to successful wheelchair use. Another is the quality of the wheelchair itself.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 61 nn Could stigma and the social environment—how the community perceives PWDs—be a hindering factor to use of the wheelchair outside the home? Could age influence who is independently using the wheelchair outside their home? (Accelovate note: Our analysis controlled for age categories. Older respondents may request more support or training to navigate outdoors, and a more receptive social environment may facilitate this, as stakeholders noted.)

nn If someone needs assistance in using their wheelchair outside their home, this assistance comes at a cost that wheelchair users may not be able to afford. (Accelovate note: Even in our study, we found that public transportation is difficult for wheelchair users to attain, and may be costly. Wheelchair use outside on rough terrain may lead to broken parts and the need to purchase spare parts, and users might not have funds for such purchases.)

In the Kenya sample, the number of people who are receiving any given wheelchair service bundle is low—below 34% in each step of service in spite of Accelovate’s efforts to enroll 50% service recipients.

nn This is a huge gap demanding the attention of wheelchair providing organizations and stakeholders.

nn The statistics on assessment and fitting are quite low.

nn Only 27% of wheelchair users were trained. This reflects a very big gap.

nn Eighty-five percent of wheelchair users were not informed where to go for repair of their wheelchair. This is too high.

nn Follow-up is poor: 100% received a wheelchair, but only 15% were followed up.

nn Provision of a wheelchair in the country is not systematic; neither is it professional. Some organizations do not have technical capacity.

In the Kenya sample, 80% of the wheelchair users received their wheelchair through charities. (Accelovate note: The high level of donated wheelchairs likely reflects Accelovate’s Kenya sampling strategy, which relied on organizational lists. In the general population of wheelchair users in Kenya, donated wheelchairs may be less common page 62—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study than in this sample).

nn This is a high number of people who cannot support themselves. This also begs the question: What is the role of government in wheelchair delivery?

nn If there is little purchasing power, what barriers contribute to this?

nn Wheelchairs are not zero-rated/exempted from tax; hence, they are expensive.

nn Do wheelchair users have low socioeconomic status?

nn Is this an indication of other factors—for example, people easily lose their jobs when their mobility is compromised? It is an unfortunate circumstance that, though individuals are insured when they get into an accident that causes mobility impairment, insurance companies do not pay for a wheelchair.

nn In some cases, families who can easily support a wheelchair user are not willing to sacrifice and pay for a wheelchair. “There is great disparity in priorities.”

nn Some workers inform only a select few (e.g., friends or relatives) where to receive a wheelchair; political and other mass distribution of wheelchairs does not bridge this gap to reach those for whom wheelchairs are inaccessible.

In the Kenya sample, 56% of participants have received more than one wheelchair over the last five years.

nn This finding rang true for many stakeholders, who report having interacted with many wheelchair users who have abandoned their chairs.

nn What is the durability standard of wheelchairs used by participants?

nn Are multiple acquisitions the result of not acquiring the right wheelchair at the outset?

nn Could the terrain be a contributing factor to multiple acquisitions of wheelchairs? A wheelchair user may think that it is their wheelchair that is a problem, yet it could be the terrain that is a problem.

nn Are wheelchairs acquired to help in the performance of different tasks?

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 63 nn Are wheelchairs acquired for aesthetic value?

What findings surprised you? Observations of local stakeholders In the Kenya sample, those who had ever received follow-up contact were less likely to report high daily use of their current chair.

nn This is an unexpected finding that is hard to explain.

In the Kenya sample, a low proportion (18%) of participants reported pressure sores in their current chair.

nn What is the proportion of pressure sores among wheelchair users with different health conditions? Among people with pressure-relief cushions compared to people without pressure-relief cushions? What is the impact of other cushions?

nn What is the survival rate among people who have pressure sores? (Accelovate note: Many individuals could not be surveyed in each country because they had died or could not be found. There may be high morbidity and mortality for wheelchair users.)

In the Kenya sample, 23% of wheelchair users reported a college- level education.

nn This is surprisingly high. (Accelovate note: A sizable portion of our sample came from a snowballed cluster of university students. Our sample surveyed only those who could understand the survey and speak Swahili [national language but not necessarily spoken by some ethnic groups in Kenya] or Filipino).

In the Kenya sample, 75% of wheelchair users reported managing toileting independently.

nn This is especially surprising because Kenya does not have user-friendly facilities for public use, work, or in residential/ home areas. (Accelovate note: It is possible that some questions on the survey were sensitive and might not have garnered truthful responses, or that the questions needed to be more specific to be more accurately reported.)

page 64—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study In the Kenya sample, 29% of those interviewed had spinal injuries.

nn This was unexpectedly high.

What will you remember when you leave today? Observations of local stakeholders:

nn This is the most scientific approach seen in the sector and this will help justify change.

nn We need to move from distributing wheelchairs to providing wheelchair services.

nn Spinal injuries are high and unfortunately on the increase.

nn This is a wake-up call on many service issues: issues of follow-up have been ignored for far too long, and training of the users has been taken for granted. Follow-up is key in providing quality service. (Accelovate notes that stakeholders stressed the need for follow-up services in spite of the study’s equivocal findings related to this particular service.

How might the findings impact your work? Observations of local stakeholders:

nn The study will spur the following actions among stakeholders:

nn Support adoption of WHO guidelines and training packages when providing wheelchairs.

nn Support the integration of local wheelchair provision standards into the legal framework.

nn Prompt organizations to assess and evaluate their services.

nn Justify increasing the number of professionals trained in wheelchair service provision.

nn Compel wheelchair providing organizations to increase follow-up. (Accelovate notes that stakeholders stressed the need for follow-up services in spite of the study’s equivocal findings related to this particular service).

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 65 Philippines In the Philippines, the causes of disability and the low proportion of rough-terrain wheelchair users may be effects of the age of the study population. A Filipino male service recipient noted in his qualitative interview: “[The provider] said that the rough rider type does not suit my age because it is for young patients.” Age should be a consideration in interpreting study findings. Philippines team welcomes stakeholders In the Philippines, a research consultation meeting was convened at the Manila Pavilion Hotel on August 10–11, 2015 (see Appendix I). Government, NGOs, FBOs, wheelchair manufacturers, DPOs, wheelchair users, wheelchair professionals, academe, and professional groups were among the stakeholders consulted on study findings. Small stakeholder groups worked with a facilitator and note taker drawn from the study team to develop observations rooted in the local context and to generate recommendations (see Recommendations). Their impressions, as summarized by note takers, are described below, except where observations of researchers are indicated.

Assessment Results In the Philippines sample, those who had ever had a provider’s help in selecting wheelchair were more likely to report high daily use of their current chair.

Observations of local stakeholders:

nn If a provider helps select the chair, it is likely well-fitted and tailor-made, which may lead to greater use.

nn Perhaps receiving wheelchair services gives wheelchair users a sense of ownership compared to recipients of generic chairs. A sense of ownership may make someone more likely to use their chair.

In the Philippines, when assessment took 30 minutes or more (vs. 29 minutes or fewer), respondents were more likely to have experienced serious falls. This was an unexpected finding.

Observations of researchers:

nn Perhaps service providers took more time with clients who were at greater risk of experiencing falls. page 66—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study In the Philippines sample, those who were asked about or physically checked for skin problems, sensation, or pressure sores were less likely to report high daily use. This was an unexpected finding.

Observations of local stakeholders:

nn Users might have been frightened when they were told about pressure sores and consequently avoided heavy wheelchair use.

Observations of researchers:

nn Researchers note that a provider may have checked for skin problems after the user was found to use the chair only rarely (reverse temporality). Another concern is that wheelchair users’ physical condition could influence whether providers check them for pressure sores as well as the level of wheelchair use.

Fitting Results In the Philippines sample, those who were provided fitting services in conjunction with their current chair (based on the composite variable) were less likely to perform activities of daily living unassisted. This was an unexpected finding.

Observations of researchers:

nn It could be that wheelchair users with greater physical impairments access fitting services, while those with less impairment are more likely to buy wheelchairs.

In the Philippines sample, those who were fitted while propelling their wheelchair were more likely to report independent outdoor use.

Observations of local stakeholders:

nn Being fitted while propelling the wheelchair would ensure the selection of a chair with an appropriate center of gravity. This would be a safer chair in which to navigate outdoors.

nn Perhaps propelling the chair in the presence of the provider gives clients a chance to practice moving the chair under expert observation. This, in turn, might give confidence to users, which increases independent outdoor use.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 67 In the Philippines sample, those who were assessed or fitted at home were more likely to have obtained multiple wheelchairs during the last five years. This was an unexpected finding.

Observations of researchers:

nn Multiple wheelchair provision may reflect the correction of a poorly matched wheelchair. Perhaps seeing the home environment firsthand sparks action when a wheelchair is inappropriate. The topic of multiple wheelchair acquisition, wheelchair abandonment or turnover, and the influences on these possibly related outcomes needs to be further studied.

In the Philippines sample, those who were assessed or fitted at home were less likely to report outdoor independent use. This was an unexpected finding.

Observations of local stakeholders:

nn Perhaps a client requesting at-home fitting services lacks the ability or motivation to leave the house.

nn Perhaps a stigma around certain disabilities, notably stroke, explains both requesting home services and avoiding outdoor navigation.

nn Perhaps environmental factors (stairs, rough terrain, or an inaccessible road) prompt clients to request service at home and limit their ability to independently navigate outdoors.

nn Perhaps people requesting services at home are given wheelchairs that are only appropriate for indoor use.

nn Perhaps the providers of at-home services neglect to train clients in outdoor use.

Observations of researchers:

nn Researchers note that at-home fitting may be requested by the user or family due to a user’s low mobility (reverse temporality).

Interestingly, the study found no services or service elements to be significantly associated with independent indoor use in the Philippines sample.

page 68—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Observations of local stakeholders:

nn Some houses are not fit for wheelchair use, which might have muddied the results.

Observations of researchers:

nn Researchers noted that indoor use is difficult to measure if respondents have only one room.

In the Philippines sample, those who were fitted while propelling their wheelchair were more likely than their counterparts to report a high level of independent management of activities of daily life.

Observations of local stakeholders:

nn Watching a client propel in the chair gives the provider an idea of how they will perform other activities.

Training Results In the Philippines sample, those who had ever received user training were more likely than their counterparts to report high daily use.

Observations of local stakeholders:

nn Training works!

Observations of researchers:

nn Cumulative learning by basic wheelchair users may come from exposure to multiple providers, personal experience, and peer-to-peer learning. This effect may have been particularly strong for the 13% of our Philippines sample who live and work among peers at a wheelchair charity.

In the Philippines sample, those who had ever received user training or peer group training or had ever been told where to seek repairs were more likely than their counterparts to report falls. This was an unexpected finding.

Observations of researchers:

nn The increased risk of falls associated with receipt of training and peer group training services in the Philippines is striking—and surprising—but it should be noted that the

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 69 sequence of events was not assessed here. It is possible that those experiencing falls are more likely to seek training services as part of their recovery. The exact dates of falls and services were not assessed, and temporality is difficult to assess on a cross-sectional, retrospective survey. This explanation is supported by the qualitative data. A complementary explanation is that people who seek peer group training are generally more active wheelchair users, and this places them at a higher risk of falls. This explanation is also supported by the qualitative data, which found that peer interactions were reported by people who were generally more active and routinely used their wheelchairs independently outdoors. This should be explored in a longitudinal study of wheelchair users who receive training and services to help prevent falls.

Maintenance and Repair Results In the Philippines sample, those who were instructed in the care and maintenance of their chairs were less likely than their counterparts to report daily use. This was an unexpected finding.

Observations of local stakeholders:

nn Perhaps the instruction sounds formidable or highlights the expense and limited availability of parts. This could make wheelchair users fearful of breaking their chair, which could inhibit use.

In the Philippines, there was an association between being told where to seek wheelchair repairs and increased reporting of falls. This was an unexpected finding.

Observations of researchers:

nn Again, it should be noted that the sequence of events was not assessed here. It is possible that those experiencing falls are more likely to remember being told where to seek repairs, as they may need to use repair services in the aftermath of a fall.

Follow-Up Results In the Philippines sample, follow-up service provision was not associated with improved or worsened outcomes, except an increased likelihood of obtaining multiple wheelchairs over a five- year period. This was an unexpected finding. page 70—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Observations of local stakeholders:

nn Follow-up ever was assessed, when in fact follow-up may be needed with regard to the current chair in order to increase successful wheelchair use.

nn Perhaps the study question was too broad, and some who were contacted did not receive full follow-up services. For example, perhaps some were followed up by phone or text message, which may be inadequate.

Observations of researchers:

nn Follow-up services may reflect the correction of a poorly matched wheelchair. If a wheelchair is inappropriate and its abandonment becomes necessary, perhaps there is a correction to be made in the assessment and fitting process rather than at the follow-up stage. It is also possible, however, that the optimal selection of wheelchairs was not initially available.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 71 Limitations and Strengths

The study design was cross-sectional, collecting data at a point in time from each survey participant. As such, it is not possible to prove causality or that a factor led to improved outcomes. It is possible that the reverse is true—that is, that a poor outcome may have precipitated the wheelchair user to seek a service. Self- reported information may be affected by courtesy bias, recall bias, or other biases. However, the surveyors’ extensive training—and the fact that the survey did not record participants’ names or other identifiers and was carried out in private with confidentiality assurances—likely strengthened data quality. Recall bias may have been present in that users were asked about services offered with their current wheelchair acquired within last five years and services ever received.

This study was based on a systematically collected sample of wheelchair users in selected urban and peri-urban areas and does not represent the national population of adult basic wheelchair users in Kenya or the Philippines. Because the sample was deliberately balanced between the service and distribution-only groups, observed levels of service provision cannot be generalized to the larger population of wheelchair users. The challenges Accelovate faced in recruiting sufficient numbers of service recipients suggest that the level of receipt of wheelchair services in a population- based sample would be lower.

At the start of the study, many existing wheelchair-related survey instruments were reviewed, but none entirely served the purposes of this study. Although Accelovate was able to borrow and adapt pieces of existing instruments, the final survey tool developed was used for the first time and remains to be validated.

This was one of the first studies of its kind to measure the association between wheelchair services and user outcomes. The study was conducted in two countries on two different continents, and the results shed light on users’ experiences in different contexts. Tablet- based data collection allowed for timely checks on data quality. The survey collected personal characteristics of users and their wheelchairs, allowing for adjustment in the multivariable analyses. Confidence in the findings is increased knowing that, when associations between history of wheelchair services and outcomes were examined, these characteristics (e.g., wealth and education) page 72—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study were held constant. However, it is possible that unmeasured characteristics affect the relationship of receiving wheelchair services and outcomes. Efforts were made to achieve as high coverage as possible within the sampling frame of lists provided by wheelchair organizations; in the Philippines, data collectors even went door- to-door to contact potential participants who could not be reached by phone. Snowball sampling was used to include participants who might have purchased their wheelchairs from the private market or were otherwise not present on organizational lists.

The qualitative component allowed for wheelchair users to describe their experiences in their own words and to contribute their views on what services would be valuable for themselves and other wheelchair users. The qualitative study complemented and, to some extent, helped explain quantitative findings. It also demonstrated contextual factors that could affect the findings but were difficult to measure in a survey, such as having a peer support network.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 73 Recommendations

The study findings were presented to stakeholders in the Philippines and Kenya in August 2015. At the end of these dissemination meetings, stakeholders wrote lists of recommendations for advocates, government officials, providers and planners of wheelchair services, and funders. The lists are reprinted here, along with recommendations from the Accelovate research team. Finally, next steps are listed for each country, to ensure that these findings are used to enhance services for wheelchair users.

Recommendations for Advocates Kenya Stakeholders Given that wheelchair users are receiving low levels of all steps of service:

nn Advocate for the wheelchair to be regarded as a medical device at all levels: policy, users, wheelchair providing organizations, donors. Therefore, its provision will be regulated and left to professionals. Stakeholder nn Empower wheelchair users to know their rights and to demand their right to an appropriate wheelchair. This is to recommendation: be done by DPOs. Empower

Given that one of the limiting factors to providing services is the wheelchair users to lack of resources: know their rights nn Create awareness in counties that there are national funds and to demand targeting PWDs, and advocate for proper use of these funds for the provision of assistive devices. their right to nn Create awareness among county representatives of an appropriate employees/trade union officials and DPOs of what to lobby for in their counties for wheelchair users. wheelchair.

Other:

nn Advocate for wheelchairs to be zero-rated (a rate of nil tax) and/or provide tax relief to make them more affordable. This will increase the range of wheelchairs that are accessible to wheelchair users.

nn Due to the delay in revising the National Disability Act, encourage counties to create their own county disability act.

nn Advocate for resource mobilization for advocacy, research, and training. page 74—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study nn Eliminate bureaucracy that hinders development by sensitizing government officials.

Philippines Stakeholders Given the gap between service need and service demand, spread the word that receipt of services is associated with successful wheelchair use at the LGU level. As part of this, develop and disseminate an evidence-based brief. In addition, target the general public, wheelchair users, and their families with media campaigns to increase wheelchair service demand.

Recommendations for Government Kenya Stakeholders Given that there is no standard package for how wheelchairs are provided:

nn Establish a minimum set of services to be received when providing wheelchairs in Kenya.

nn Develop a standardized policy on providing wheelchairs.

nn Use the task force created by the ACCESS program to engage with government and technical working groups to move policies toward development and implementation. nn Include the wheelchair as a medical device in the health Stakeholder bill so that professionals dispense it and so that it has the advantage of zero rating (a rate of nil tax). recommendation:

Given low levels of independent outdoor wheelchair use in the Establish a study population: minimum set nn Enforce current laws that compel all buildings and public of services to transport systems to be accessible to people with disabilities. be received nn Ensure that all imported wheelchairs meet the specifications for less-resourced areas. Use a pull system for importing when providing wheelchairs (wheelchairs are only brought into the country when recipients are identified through assessment). Kenya wheelchairs in Bureau of Standards has developed standards for wheelchairs Kenya. for low-resource settings, but people who import in bulk for donation do not follow these specifications for long-term wheelchair users.

nn Encourage importation of parts and create a mechanism to assemble locally according to specifications. However, even

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 75 as we need quality product, we should not forget to focus on the quality of wheelchair service provision.

nn At the port of entry, there is a need to have trained professionals determine whether wheelchairs meet specifications for low- resource settings.

nn Identify best practices from other countries or counties that have addressed disability mainstreaming, promoted inclusion, and addressed the barriers that exclude persons with disabilities from equal enjoyment of human rights.

Philippines Stakeholders Given that service receipt is associated with successful wheelchair use:

nn Require that all wheelchairs be provided with services.

nn Support additional research to define a minimum level of service that should be provided with any wheelchair.

nn Assemble an oversight body to ensure donor and provider compliance with standards for providing wheelchairs.

Given that the aim of service provision is to select an appropriate chair:

nn Offer an array of wheelchairs to select from.

nn Regulate manufacturers to ensure that wheelchairs meet safety standards.

nn Coordinate and share resources among government agencies involved in providing wheelchairs.

nn Establish recycling centers for wheelchairs/parts.

Given low levels of independent outdoor wheelchair use in the study population:

nn Coordinate complementary agencies to ensure an environ- ment friendly to wheelchair users. Stakeholder Recommendation: Given that wheelchair users are receiving low levels of all services and no standard package: Standardize service

nn Standardize service provision. provision.

page 76—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Given the gap between high need for wheelchair services and low level of available service personnel:

nn Pursue task shifting and a community-based approach to service provision:

nn Train community volunteers, primary care providers, and people with disabilities to become service providers.

nn Develop nationwide referral networks for wheelchair services.

Recommendations for Planners and Providers of Wheelchair Services Kenya Stakeholders Given that service receipt is associated with many positive wheelchair user outcomes:

nn Integrate and enforce wheelchair service provision at the local/county health facilities.

nn Create a network for wheelchair service provision.

nn Distributors should work with service providers and should be required to receive a prescription before providing a wheelchair to a user.

Given that a high proportion of participants had multiple wheelchairs:

nn Develop a harmonized/linked database of wheelchair users, services, and wheelchairs received. Use an integrated wheelchair management system like Jhpiego’s system for the treatment for hypertensive clients. Data should include the wheelchair user, wheelchair providers, and other related organizations.

Given the gap between high need for wheelchair services and low level of available service personnel:

nn Develop a concept note for how to provide wheelchairs and for training of professionals (pre-service and in-service training).

nn Review and integrate wheelchair provider training into the curriculum of training institutions to align with international guidelines.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 77 nn Map out service providers and distributors of wheelchairs.

nn Use peer group training. Develop programs to identify wheelchair users who can train other users within their locality. nn Develop a local user training manual for people who need Stakeholder wheelchairs. recommendation: Given that maintenance is associated with high daily use and Given the independent outdoor use: recommendation nn Issue wheelchairs with a user’s manual and a basic toolkit. Educate wheelchair users about how to service/maintain for task shifting, their wheelchairs. build a community nn Train local artisans who can help with maintenance and repair of wheelchairs. of colleagues to support one another Given that follow-up has been overlooked:

nn Evaluate two possible approaches:

nn Enable wheelchair provider-initiated contact by embracing e-Health and telemedicine.

nn Enable wheelchair user-initiated contact via a hotline.

Given that a low proportion of participants had a choice from a range of wheelchairs:

nn Encourage service providers to have a range of quality wheelchairs.

Philippines Stakeholders Given the recommendation for task shifting, build a community of colleagues to support one another.

Given quantitative and qualitative findings:

nn Take care to discuss pressure sores with sensitivity to avoid frightening clients to the extent that they may avoid using their wheelchairs.

nn Take care to discuss maintenance and repair with sensitivity to avoid overwhelming clients to the extent that they may avoid using their wheelchairs.

nn Consider gender when providing services, particularly when page 78—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study checking for pressure sores.

nn Fit every client while he or she propels the wheelchair.

nn Discuss stigma and goals with clients requesting at-home services.

nn Provide full rather than perfunctory follow-up services to every client.

Accelovate Given the gap between high need for wheelchair services and low level of available service personnel:

nn Training basic wheelchair users to serve as basic wheelchair providers for others may have a positive impact in a number of areas and could free health professionals to focus on those with more complex needs. Opportunities should be sought to provide basic wheelchairs partly through peer group workshops and events, not only (or mainly) through professional clinics and medical services.

Given that, in Kenya, client records were incomplete, out of date, or unavailable, Accelovate’s Kenya research team recommends that organizations serving wheelchair users consider the following actions to promote the provision of follow-up services:

nn Collect sufficient client data to provide follow-up services.

nn Partner with community health workers, who can help maintain linkages between wheelchair users and service providers.

nn Partner with Social Development Officers from the Ministry of Labour, Social Security and Services. These officers are in every constituency and district in Kenya.

nn Partner with local administrators (e.g., chiefs and village elders), who may also be able to offer access to those who are not served.

nn Use geographic information system mapping to locate service providers and wheelchair users.

nn Create a hotline to provide people with disabilities a means to access information and support.

nn Use electronic records to maintain client information in a single, accessible file.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 79 Recommendations for Funders of Wheelchair Services Kenya Stakeholders Given that resources are commonly channeled toward the product rather than to quality service provision:

nn Ensure that funders have access to the data from the study so that they see the importance of wheelchair service provision.

nn Require funders to enter into technical agreements with government—especially the National Council for Persons with Disability (NCPWD), the Ministry of Health (MOH), and the Kenya Revenue Authority (KRA)—to ensure clear channels for providing wheelchairs that facilitate the provision full services.

nn Fund/provide wheelchairs only to organizations that provide the standard set of services.

nn Give funders access to the harmonized database to see how their resources are being used.

Given that a low proportion of participants had a choice from a range of wheelchairs:

nn Funders should encourage creativity among service providers, thus creating a culture of competition that will result in improved local products and increase the range of products provided.

Given the high proportion of study wheelchair participants having spinal injuries or polio:

nn Funders should set aside resources that help prevent causes of mobility disability.

Philippines Stakeholders Given the association between receiving services and successful wheelchair use:

nn Consider the cost associated with wheelchair services when budgeting for providing wheelchairs.

nn Explore public-private partnerships to strengthen the delivery of wheelchairs with services.

page 80—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Recommendations for Wheelchair Distributors/Donors Philippines Stakeholders Given that the aim of service provision is to select an appropriate chair:

nn Take responsibility for linking to services.

nn Ensure that wheelchairs comply with International Standards Organization standards.

Recommendations to Researchers Kenya Stakeholders Future research should investigate:

nn What is the quality of life of wheelchair users?

nn Why did the study population have a high number of persons with spinal injury?

nn Why were there low levels of pressure sores? Is this as a result of under-reporting, or that only a small number of wheelchair users who have pressure sores survive?

nn What is the cost/affordability of wheelchairs?

Future research should also:

nn Incorporate questions targeting wheelchair users in the Demographic and Health Survey and other national survey programs.

nn Conduct a national survey of wheelchair users to help secure future funding.

nn Examine the impact of service receipt on children who use wheelchairs.

Philippines Stakeholders

nn Designate a central repository to compile data from various sources.

nn Look beyond greater Manila. National studies are needed, as in investigation of rural populations, children, those who do not communicate verbally, and intermediate wheelchair users.

nn Involve wheelchair users in all phases of research, including study design.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 81 nn Study the cost-effectiveness of service provision.

nn Test successful wheelchair use outcomes against various models of service provision to identify an optimal, efficient approach.

nn Design studies that follow wheelchair users over time to map outcomes to services.

nn Explore additional outcomes against service receipt: community involvement, quality of life, educational attainment, and income.

nn Additional research questions:

nn Are certain kinds of wheelchairs associated with better/worse outcomes?

nn Are certain segments of the population likelier to receive certain services or service elements?

nn What is the effect of a wheelchair user’s service receipt on caregiver outcomes?

nn What are the economic implications of levels of daily wheelchair use and independence in terms of educational opportunity, employment/livelihood opportunities, cost of companions, etc.?

nn How do people commonly receive services?

nn What other factors are associated with successful wheelchair use?

Accelovate Given our difficulty locating respondents from lists provided by organizations, Accelovate’s Kenya research team recommends that future researchers:

nn Rely on multiple approaches to reach sample size,

nn Plan for a prolonged study period, and

nn Consider broad geographical coverage, in case lists in one area do not produce participants.

Given the limitations of the study (see Limitations and Strengths):

nn Future descriptive studies should follow wheelchair recipients over time to determine the effect of services and other factors on incident morbidity and mortality. Such page 82—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study a study should test the value of maintaining longer-term follow-up with wheelchair users.

nn Wheelchair use outcomes and activities of daily living could be measured by additional means, such as user diaries about daily behaviors and the use of different wheelchairs for various activities. Medical records or visits by a study nurse could help validate reports of adverse health outcomes.

nn If this survey is repeated in future studies, the instrument should be assessed for validity and reliability and local relevance. It will also be important to conduct intervention studies to compare improved services with existing services and measure impact on health outcomes.

nn Additional opportunities for future research include an examination of the interaction between the social and built environment and the efficacy of wheelchair services.

nn Further study is also warranted with subgroups (i.e., wheelchair users with certain conditions) to determine their specific needs and outcomes.

Next Steps Kenya Kenya stakeholders identified the following opportunities and actions to implement these recommendations:

Opportunities

nn Using the ACCESS task force: ACCESS is a USAID-funded project, and its task force was formed after its first national stakeholders meeting in 2015. The mandate of the task force is to help the ACCESS consortium achieve one of three core objectives: fostering an enabling environment for effective wheelchair service; managing of stakeholder engagement and mobilization; and advocating at the local and national levels.

nn Building on the ACCESS consortium database: The database helps to link wheelchair service providers to new clients and assists with follow-up by alerting service providers when to contact wheelchair users.

nn Using the existing network of community health volunteers to aid in general service provision.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 83 nn Retaining the engagement of the influential government agency representatives from the different ministries at the meeting.

nn Promoting a standard of competence in development by the Kenya Bureau of Standards to ensure wheelchair professionals are appropriately skilled.

nn Reaching out to legislators already positioned to address disability issues.

nn Analyzing existing NCPWD data to inform policy.

nn Capitalizing on NCPWD’s willingness to learn and make changes by encouraging them to provide leadership and technical assistance to the field instead of being the implementers.

nn Disseminating the best practices of organizations represented at the meeting.

nn Encouraging counties to request national funds to be set aside for PWDs.

Actions

nn The Ministries of Labor and Social Services agreed to serve as convener for future stakeholder meetings. ACCESS agreed to serve as facilitator.

nn The first meeting will be held with stakeholders and NCPWD and will chart the way forward for the wheelchair sector.

nn The Ministries of Labor and Social Services, in collaboration with the ACCESS task force, will spearhead the formation of a wheelchair technical working group, which will ensure effective implementation of the recommendations.

nn The MOH agreed to develop a prescription form for wheelchairs.

nn ACCESS will explore ways to customize its existing database to capture other data related to wheelchair services and scale this up for countrywide use so as to achieve a common, harmonized database.

nn Kenya Medical Training College agreed to develop a concept note for pre-service training for professionals in providing wheelchairs. page 84—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study nn The Ministries of Labor and Social Services will send a national disability policy document to all meeting participants to review. Stakeholders are invited to validate the National Disability Policy on September 24, 2015.

nn Accelovate will disseminate its final study report to all meeting participants and consider the feasibility of hosting a breakfast to launch the report and engage key government stakeholders.

nn Accelovate will request one-on-one meetings with top NCPWD managers and additional stakeholders at the Ministries of Labor and Social Services to share findings from the study.

Philippines The Philippines meeting was held in coordination with the USAID- funded Leadership, Management, and Governance Project’s wheelchair stakeholder alignment meeting. The alignment meeting gave birth to the Philippine Society of Wheelchair Professionals. With members of the study team elected to the steering committee, the new professional society is expected to bring forward the recommendations made by Accelovate’s stakeholders in response to the study findings.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 85 References

Accelovate. 2013. Phase One Desk Review: Research Study of Wheelchair and Wheelchair Services Provision in Low-Resource Settings. Baltimore, MD: Jhpiego.

Tanuku D, Onguti B. 2013. Accelovate Wheelchair Distribution Assessments. Baltimore, MD: Jhpiego.

Andrich R, Mathiassen NE, Hoogerwerf EJ, Gelderblom GJ. (2013). Service delivery systems for assistive technology in Europe: An AAATE/EASTIN position paper. Technology and Disability 25(3): 127–143. DOI: 10.3233/TAD-130381

Bachani AM, Koradia P, Herbert HK, Mogere S, Akungah D, Nyamari J, Osoro E, Maina W, Stevens KA. (2012). Road traffic injuries in Kenya: The health burden and risk factors in two districts, Traffic Injury Prevention 13, supp 1: 24–30. DOI: 10.1080/15389588.2011.633136

Borg J, Larsson S, Östergren PO, Rahman A, Bari N, Khan N. (2012). User involvement in service delivery predicts outcomes of assistive technology use: A cross-sectional study in Bangladesh. BMC Health Services Research 20: 330. DOI:10.1186/1472-6963- 12-330

Eggers S, Myaskovsky L, Burkitt KH, Tolerico M, Switzer GE, Fine MJ, Boninger, ML. (2009). A preliminary model of wheelchair service delivery. Archives of Physical Medicine and Rehabilitation 90(June): 1030–1038. DOI:10.1016/j.apmr.2008.12.007

Friese S. (2014). Qualitative Data Analysis with Atlas-ti. Los Angeles: SAGE Publications.

Greer N, Brasure M, TJ Wilt. (2012). Wheeled mobility (wheelchair) service delivery: Scope of the evidence. Annals of Internal Medicine 156(2): 141–146.

Jhpiego. (2013). Phase one desk review: Research study of wheelchair and wheelchair services provision in low-resource settings. Unpublished.

page 86—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Mann WC, Hurren D, Charvat B, Tomita M. (1996). Problems with wheelchairs experienced by frail elders [Abstract]. Technology and Disability 5(1) 101–111.

Mukherjee G, Samanta A. (2005). Wheelchair charity: A useless benevolence in community-based rehabilitation. Disability and Rehabilitation 27(10), 591–596. DOI:10.1080/09638280400018387

Rispin K, Wee J. (2014). Comparison between performances of three types of manual wheelchairs often distributed in low-resource settings. Disability Rehabilitation Assistive Technology 10(4): 316– 322. DOI: 10.3109/17483107.2014.1002541

Rogers WH. 1993. Regression standard errors in clustered samples. Stata Technical Bulletin 13: 19–23. Reprinted in Stata Technical Bulletin Reprints 3: 88–94.

Scovil CY, Ranabhat MK, Craighead IB, Wee J. (2007). Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord 50: 232–237. DOI:10.1038/sc.2011.119

Toro ML, Eke C, Pearlman J. (2014). 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. Physical Medicine and Rehabilitation. Unpublished.

World Health Organization. (2008). The Global Burden of Disease Report: 2004 Update. Geneva: World Health Organization.

———. (2013). International Perspectives on Spinal Cord Injury. Malta: World Health Organization.

World Health Organization, ISPO, and USAID. (2008). Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings. Geneva: World Health Organization.

World Health Organization and The World Bank. (2011). World Report on Disability. Malta: World Health Organization.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 87 Appendix A. Philippines Barangay Supporters

Many thanks to the city and barangay officials, barangay staff and volunteers who facilitated the access to wheelchair users in their respective barangays (communities) and in locating them, including:

Abet Aristhi, Barangay Police, Cembo, Makati City; Alejandro Palma, Barangay Captain, San Agustin, Quezon City; Alfreado Domanico, Barangay Staff, Pag-asa, Quezon City; Alfredo Roxas, Barangay Captain, Kaligayahan, Quezon City; Alice Mora , PDAO Focal Person, Holy Spirit, Quezon City; Allan Mabasa, PDAO Officer, Poblacion, Mandaluyong City; Angie C. Trinidad, Barangay Staff, Novaliches Proper, Quezon City; Anita Daileg, PNP Commel SVC, Camp Crame, Quezon City; Ariel M. Sarmiento, Barangay Captain, Comembo, Makati City; Arnel Yap, Barangay Police, Central Bicutan, Taguig City; Arnold Cruz, Barangay Captain, Rizal, Makati City; Asuncion C. Aguilar, Barangay Captain, BF International Village, Las Piñas City; Asuncion M. Visaya, Barangay Captain, Novaliches Proper, Quezon City; Atty. Dario Fojas, Barangay Captain, San Isidro, Makati City; Aurelio Padilla, Barangay Captain, New Lower, Taguig City; Bantay Ramalyosa, Barangay Police, Rizal, Makati City; Belen Dionela, Purok Leader, Upper Bicutan, Taguig City; Carlito Guimbaolibot, Record Section, Records Section, Payatas, Quezon City; Carlito V. Cuevas Sr., Barangay Captain, Talon Tres, Las Piñas City; Carmelo Gurtiza, Barangay Police, South Signal, Taguig City; Christian Cando, Barangay Captain, Capri, Quezon City; CJ Viloria, Barangay Police, Nagkaisang Nayon, Quezon City; Conrado Aquino Jr., Barangay Captain, Sta Ana, Taguig City; Damacito Pacis, Barangay Police, Commonwealth, Quezon City; Daniel Agito, Barangay Staff, Pag-asa, Quezon City; Dannie “Dove” Ocampo, Barangay Captain, Barangka Itaas, Mandaluyong City; Darwin Fernandez, Barangay Captain, Barangka Drive, Mandaluyong City; David Capaycapay, Barangay Police, North Signal, Taguig City; Delio Santos, Barangay Captain, Bagumbayan, Taguig City; Dennis A. Caboboy, Barangay Captain, Bahay Toro, Quezon City; Dennis B. Almario, Barangay Captain, Guadalupe Viejo, Makati City; Dennis S. Aguilar, Barangay Captain, Zapote, Las Piñas City; Denny Jayne Calimlim, Barangay Captain, Mauway, Mandaluyong City; Derlie Dolor, Barangay Captain, Central Bicutan, Taguig City; Domingo Tatad, Barangay Police, Sta. Lucia, Quezon City; Edgardo A. Paragua, Jr., Barangay Captain, Paltoc, Quezon City; Edmon Espiritu, Barangay Captain, Hagdang Bato Libis, Mandaluyong page 88—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study City; Edwin Gernan, Taguig City; Elisa Mariposa, Purok Leader, Upper Bicutan, Taguig City; Elisa Samot, DSWD staff, New Lower Bicutan; Elizabeth Castro, President, CAA/BF International PWD Associations, CAA/BF International, Las Piñas City; Elmar Bautista, PDAO Officer, Taguig City; Emiliano B. Ramos, Barangay Captain, Talon Uno, Las Piñas City; Emily Caranza, DSWD staff, Lower Bicutan; Erma Tanay, Barangay Secretary, North Daang Hari, Taguig City; Ernesto Bernardo, Barangay Police, South Signal, Taguig City; Ernesto Berroya, Barangay Captain, San Antonio, Quezon City; Ernesto M. Resngit, Jr., Barangay Captain, Poblacion, Mandaluyong City; Ernesto Nunez, Purok Leader, Upper Bicutan, Taguig City; Ernie V. Reyes, Barangay Police, Sta. Ana, Taguig City; Erwin Mendiola, Barangay Captain, Ibayo- Tipas, Taguig City; Evangeline F. Dungca, Barangay Captain, Gulod, Quezon City; Evelyn Delfina E. Villamor, Barangay Captain, Cembo, Makati City; Fe Elimino, President, Almanza 2 PWD Association, Almanza 2, Las Piñas City; Fe V. Ergina, Zone Leader, Wawa, Taguig City; Federico Espalon, Barangay Staff, Hulo, Mandaluyong City; Federico S. Jong, Jr., Barangay Captain, Teacher’s Village, Quezon City; Feliciano F. De la Cruz, Barangay Captain, Nagkaisang Nayon, Quezon City; Felicito Valmocina, Barangay Captain, Holy Spirit, Quezon City; Flora Leones, PDAO Focal Person, Payatas, Quezon City; Florante S. De la Cruz, Barangay Captain, Manuyo Uno, Las Piñas City; Geronima Espino , Councilor and Chair, Committee on PWDs, Holy Spirit, Quezon City; Godofredo Tolentino, Barangay Captain, Poblacion, Makati City; Gregorio S. Franco Jr., Barangay Captain, New Lower Bicutan, Taguig City; Helario Supaz, PDAO Officer-in-Charge, Taguig City; Helen Mallorca, Purok Leader, Upper Bicutan, Taguig City; Henrieta Ursua, Purok Leader, Upper Bicutan, Taguig City; Henry Dacles, Barangay Police, Ligid, Taguig City; Ignacio B. Sangga, Barangay Captain, Talon Kuatro, Las Piñas City; Illuminada Carranza, Barangay Staff, Pleasant Hills, Mandaluyong City; Jaime Antonio, President, Almanza 1 PWD Association, Almanza 1, Las Piñas City; Janet C. De la Narra, Purok Leader, Upper Bicutan, Taguig City; Jayson Encomienda, Barangay Captain, Kamuning, Quezon City; Jeline M. Olfanto, Barangay Captain, Pembo, Makati City; Jennifer F. Alit, Barangay Captain, Central Bicutan, Taguig City; Jerome Mendiola, Barangay Captain, Palingon, Taguig City; Jesus Climaclosa, PDAO Staff, Taguig City; Jesus Pullente, Barangay Captain, North Signal, Taguig City; Jet Liporada- Giuete, Barangay

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 89 Captain, Masagana, Proj. 4, Quezon City; Joel dela Cruz, Barangay Staff, Gulod, Quezon City; Jojo Abad, Barangay Captain, Batasan, Quezon City; Jorge P. Felipe, Officer-in-Charge, Association of Barangay Captains, Quezon City; Jose Antonio Talamayan Jr., Barangay Captain, Bagong Lipunan ng Crame, Quezon City; Jose Mauricio Agustin R. Riguera, Barangay Captain, Pamplona Tres, Las Piñas City; Josefina B. Bumanlag, Barangay Captain, Talon Singko, Las Piñas City; Judith Celos, Barangay Captain, West Rembo, Makati City; Julie R. Quines, Barangay Captain, Pulang Lupa Dos, Las Piñas City; Junet M. Barilla, City Social Welfare Development Officer, Las Piñas City; Kriselle Pedro, Barangay Staff, Pleasant Hills, Mandaluyong City; Lamberto Pascual, Barangay Captain, San Bartolome, Quezon City; Lani Sarip, DSWD Officer, Maharlika, Taguig City; Leonida De Jesus, Purok Leader, Poblacion, Mandaluyong City; Leslie Abayon, President, Talon 3 PWD Association, Talon 3, Las Piñas City; Lester Pusing, President, Talon 5 PWD Association, Talon 5, Las Piñas City; Liza Obong, Barangay Police, Rizal, Makati City; Loida Cimera, Health and Sanitation Staff, North Signal, Taguig City; Lorenzo O. Fortuno, Barangay Captain, North Daang Hari, Taguig City; Ma. Arlene M. Ortega, President, Association of Barangay Captains, Makati City; Ma. Jesabell Mendoza, PDAO Staff, Payatas, Quezon City; Ma. Victoria Balidoy, Barangay Captain, Pinagsama, Taguig City; Maida Javate, Barangay Secretary, Paltoc, Quezon City; Malou Abordo, Zone Leader, Cembo, Makati City; Manny Laguazar, Purok Leader, Greater Lagro, Quezon City; Manuel Chua, Barangay Captain, North Fairview, Quezon City; Marcial V. Flores., Assistant City Administrator, Quezon City; Margie O. Alpan, Barangay Secretary, Maharlika, Taguig City; Maribel Dildacan, DSWD staff, Lower Bicutan; Maricel Reyes, PDAO Staff, Mandaluyong City, Mandaluyong City; Maricriz Diaz, Auditor, PWD Association, Pulang Lupa 1, Las Piñas City; Marijes Paje, PDAO Focal Person, Commonwealth, Quezon City; Marilyn Largena, Health and Sanitation Staff, North Signal, Taguig City; Marilyn Marcelino, Barangay Captain, Ususan, Taguig City; Marissa D. Carpina, Purok Leader, Upper Bicutan, Taguig City; Marissa Duka, Principal, Lourdes, Quezon City; Marjorie Loredo , Vice President, Pamplona 3 PWD Association, Pamplona 3, Las Piñas City; Mark G. Neri, Barangay Captain, Manuyo Dos, Las Piñas City; Mark Gregor A. de Borja, Barangay Police, Buayang Bato, Mandaluyong City; Mark Joseph Santos, Barangay Captain, page 90—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Elias Aldana, Las Piñas City; Mary Catherine C. Sioson, Barangay Captain, Lourdes, Quezon City; Mary Jane Canega, President, Pamplona 1 PWD Association, Pamplona 1, Las Piñas City; May Galiardo, Barangay Councilor, Talon 3, Las Piñas City; Medina Alambra, Baragay. Assistant Secretary, Central Signal, Taguig City; Michelle Ann Odevilas, Barangay Captain, South Signal, Taguig City; Myrna Mendinueta, Purok Leader, Upper Bicutan, Taguig City; Napoleon Castillo, President, Pamplona 3 PWD Association, Pamplona 3, Las Piñas City; Nedelyn Villanueva, PRO, Ilaya PWD Association, Ilaya, Las Piñas City; Nelson C. Alcantara, Barangay Captain, Sta. Monica, Quezon City; Nicanor Villarino, Barangay Police, Upper Bicutan, Taguig City; Nicky Supan, Barangay Captain, Western Bicutan, Taguig City; Norma C. Olasa, Purok Leader, Upper Bicutan, Taguig City; Norma O. Pasion, DSWD staff, Plainview, Mandaluyong City; Pat Henry Dueñas, Barangay Captain, Central Signal, Taguig City; Philip Buenaflor, Barangay Captain, Wawa, Taguig City; Presy C. Baquiring , Councilor and Chair, Committee on PWDs, Commonwealth, Quezon City; Ramiro S. Osorio, Barangay Captain, San Agustin, Quezon City; Raul Addatu, Barangay Captain, Marilag, Quezon City; Reinier S. Salvador, Barangay Captain, Pamplona Uno, Las Piñas City; Renato Galimba, Barangay Captain, Greater Lagro, Quezon City; Restituto D. Martinez, Barangay Captain, Pilar, Makati City; Rey Aldrin S. Tolentino, Barangay Captain, Gulod, Quezon City; Reynaldo C. Balagulan, Acting City Administrator, Las Piñas; Reynato A. Alfonso, Barangay Captain, Pulang Lupa Uno, Las Piñas City; Rhyan Joy, Barangay Secretary, Bahay Toro, Quezon City; Rica Furio, Zone Leader, Rizal, Makati City; Richard Ambita, Barangay Captain, Bagbag, Quezon City; Richie Palanog, PDAO Focal Person, PDAO Focal Person, Loyola Heights, Quezon City; Ricki Fortune, President, Ilaya PWD Association, Ilaya, Las Piñas City; Roberto Cristobal, Barangay Captain, Daniel Fajardo, Las Piñas City; Rodante Badajos, Barangay Police, Central Bicutan, Taguig City; Rodel N. Lobo, Barangay Captain, Tatalon, Quezon City; Rodolfo Pavilonia, Barangay Police, North Signal, Taguig City; Roel Pacayra, Barangay Captain, Old Lower Bicutan, Taguig City; Rogelio M. Alejandro, Barangay Captain, Almanza Uno, Las Piñas City; Romi Rebaldus, Barangay Police, Capri, Quezon City; Romualda C. Villalon, Barangay Captain, Pamplona Dos, Las Piñas City; Rosario C. Roldan, Barangay Captain, Upper Bicutan, Taguig City; Rosemarie Flores, Senior Citizen Head, Central Signal,

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 91 Taguig City; Rosette A. del Rosario, Barangay Secretary, Lourdes, Quezon City; Rosie Manto, Persons with Disabilities Affairs Office (PDAO), East Rembo, Makati City; Ruben Y. Sanchez, Barangay Captain, Talon Dos, Las Piñas City; Rustico H. Antonio, Barangay Captain, Ilaya, Las Piñas City; Ryan Solomon, Barangay Police, Rizal, Makati City; Shajeda Samad, DSWD Officer, Maharlika, Taguig City; Susana Oringa, Barangay Secretary, Tatalon, Quezon City; Tagani Evangelista, Barangay Captain, Pleasant Hills, Mandaluyong City; Vega Chavez, Barangay Secretary, San Bartolome, Quezon City; Verjs Pulido, President, Elias Aldana PWD Association, Elias Aldana, Las Piñas City; Vicente A. Alovera Jr., Barangay Captain, Almanza Dos, Las Piñas City; Vicente Espital, Barangay Captain, San Miguel, Taguig City; Vicky Radon, Barangay Captain, Upper Bicutan, Taguig City; Virgilio Maglipon, Barangay Captain, Calzada, Taguig City; Virginia Salenga, Barangay Captain, Sta. Cruz, Makati City; Wilfredo Pinote, Barangay Police, Central Bicutan, Taguig City; William R. Bawag, Barangay Captain, Sta. Lucia, Quezon City; Winnie Royales, DSWD staff, New Lower Bicutan; Yasser G. Pangandaman, Barangay Captain, Maharlika, Taguig City; and Zaldy Gobando, Barangay Staff, Barangka Itaas, Mandaluyong City

page 92—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Appendix B. Survey Instrument Development

The Home Tool Physical home With whom do you Daily living functions Primary caregiver setting live? Assessment of Quality of Life 4D Basic Assessment of Quality of Life 6D Standard Assessment of Quality of Life 7D Assessment of Quality of Life 8D Efficiency of Assistive Technology and Services (EATS); Effectiveness measure instrument: Individually Prioritized Problem Assessment (IPPA) EQ-5D-5L Health Questionnaire (English version for the USA) Functional Mobility Assessment (FMA) Functioning Everyday with a Wheelchair (FEW) Handicap International Motivation Mobility Alliance Psychosocial Impacts of Assistive Devices Scale

(PIADS) Quality of Life Questionnaire (15D©) Adult Seating Identification Tool (SIT) Tool for Assessing Wheelchair Discomfort

(TAWheelchair) Wheelchair Adapted IOI-HA Wheelchair Skills Test Wheelchair Use Confidence Scale for Manual Wheelchair Users (WheelCon-M, Version 3.0) WHO Quality of Life Quebec User Evaluation of Satifaction with Assistive Technology (QUEST 2.0) Wheelchair Outcome Measure: (WHOM)

Version 4 KWAZO (Quality of care questionnaire to assess the quality of assistive technology provision process from a client’s perspective) Buckinghamshire Hospitals Adult Needs

Assessment Checklist Usability Scale for Assistive Technology Life Space

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 93 Physical Health Mobility and Complications Pain pressure Tool sores; urinary Using public tract infections; Within the house Outside the house transport falls/accidents; repetitive strain Assessment of Quality of Life 4D Basic Assessment of Quality of Life 6D Standard Assessment of Quality of Life 7D Assessment of Quality of Life 8D Efficiency of Assistive Technology and Services (EATS); Effectiveness measure instrument: Individually Prioritized Problem Assessment (IPPA) EQ-5D-5L Health Questionnaire (English version for the USA) Functional Mobility Assessment (FMA) Functioning Everyday with a Wheelchair (FEW) Handicap International Motivation Mobility Alliance Psychosocial Impacts of Assistive Devices Scale (PIADS) Quality of Life Questionnaire (15D©) Adult Seating Identification Tool (SIT) Tool for Assessing Wheelchair Discomfort (TAWheelchair) Wheelchair Adapted IOI-HA Wheelchair Skills Test Wheelchair Use Confidence Scale for Manual Wheelchair Users (WheelCon-M, Version 3.0) WHO Quality of Life Quebec User Evaluation of Satifaction with Assistive Technology (QUEST 2.0) Wheelchair Outcome Measure: (WHOM)

Version 4 KWAZO (Quality of care questionnaire to assess the quality of assistive technology provision process from a client’s perspective) Buckinghamshire Hospitals Adult Needs Assessment

Checklist Usability Scale for Assistive Technology Life Space

page 94—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Wheelchair Condition when Whether same Tool wheelchair was wheelchair is being Unique features Abandonment received and used presently; if not, condition presently why the change Assessment of Quality of Life 4D Basic Assessment of Quality of Life 6D Standard Assessment of Quality of Life 7D Assessment of Quality of Life 8D Efficiency of Assistive Technology and Services (EATS); Effectiveness measure instrument: Individually Prioritized Problem Assessment (IPPA) EQ-5D-5L Health Questionnaire (English version for the USA) Functional Mobility Assessment (FMA) Functioning Everyday with a Wheelchair (FEW) Handicap International Motivation Mobility Alliance Psychosocial Impacts of Assistive Devices Scale (PIADS) Quality of Life Questionnaire (15D©) Adult Seating Identification Tool (SIT) Tool for Assessing Wheelchair Discomfort (TAWheelchair) Wheelchair Adapted IOI-HA Wheelchair Skills Test Wheelchair Use Confidence Scale for Manual Wheelchair Users (WheelCon-M, Version 3.0) WHO Quality of Life Quebec User Evaluation of Satifaction with

Assistive Technology (QUEST 2.0) Wheelchair Outcome Measure: (WHOM) Version 4 KWAZO (Quality of care questionnaire to assess the quality of assistive technology provision process from a client’s perspective) Buckinghamshire Hospitals Adult Needs Assessment Checklist Usability Scale for Assistive Technology Life Space

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 95 Wheelchair Use Duration, Satisfaction with Why wheelchair frequency, and Tool Screening for basic wheelchair user needs number of Skills wheelchair wheelchair hours spent in wheelchair Assessment of Quality of Life 4D Basic Assessment of Quality of Life 6D Standard Assessment of Quality of Life 7D Assessment of Quality of Life 8D Efficiency of Assistive Technology and Services (EATS); Effectiveness measure instrument: Individually Prioritized Problem Assessment (IPPA) EQ-5D-5L Health Questionnaire (English version for the USA) Functional Mobility Assessment (FMA) Functioning Everyday with a Wheelchair (FEW) Handicap International Motivation Mobility Alliance Psychosocial Impacts of Assistive Devices

Scale (PIADS) Quality of Life Questionnaire (15D©) Adult Seating Identification Tool (SIT) Tool for Assessing Wheelchair Discomfort

(TAWheelchair) Wheelchair Adapted IOI-HA Wheelchair Skills Test Wheelchair Use Confidence Scale for Manual

Wheelchair Users (WheelCon-M, Version 3.0) WHO Quality of Life Quebec User Evaluation of Satifaction with

Assistive Technology (QUEST 2.0) Wheelchair Outcome Measure: (WHOM) Version 4 KWAZO (Quality of care questionnaire to assess the quality of assistive technology provision process from a client’s perspective) Buckinghamshire Hospitals Adult Needs Assessment Checklist Usability Scale for Assistive Technology Life Space page 96—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Employment, Social Participation, Well-Being (Quality of Life) Details of Organization Tool Social Psychological well-being (quality of life) Employment Providing participation Wheelchair Assessment of Quality of Life

4D Basic Assessment of Quality of Life 6D

Standard Assessment of Quality of Life 7D Assessment of Quality of Life 8D Efficiency of Assistive Technology and Services (EATS); Effectiveness measure instrument: Individually Prioritized Problem Assessment (IPPA) EQ-5D-5L Health Questionnaire (English version for the USA) Functional Mobility Assessment (FMA) Functioning Everyday with a Wheelchair (FEW) Handicap International

Motivation Mobility Alliance Psychosocial Impacts of Assistive

Devices Scale (PIADS) Quality of Life Questionnaire

(15D©) Adult Seating Identification Tool (SIT) Tool for Assessing Wheelchair Discomfort (TAWheelchair) Wheelchair Adapted IOI-HA Wheelchair Skills Test Wheelchair Use Confidence Scale for Manual Wheelchair Users (WheelCon-M, Version 3.0) WHO Quality of Life Quebec User Evaluation of Satifaction with Assistive Technology (QUEST 2.0) Wheelchair Outcome Measure:

(WHOM) Version 4

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 97 Employment, Social Participation, Well-Being (Quality of Life) Details of Organization Tool Social Psychological well-being (quality of life) Employment Providing participation Wheelchair KWAZO (Quality of care questionnaire to assess the quality of assistive technology provision process from a client’s perspective) Buckinghamshire Hospitals Adult

Needs Assessment Checklist Usability Scale for Assistive Technology Life Space Wheelchair Service Satisfaction with After or during the use of wheelchair; Tool Before or on being Wheelchair Service context; additonal services; frequency; given wheelchair Received maintenance Assessment of Quality of Life 4D Basic Assessment of Quality of Life 6D Standard Assessment of Quality of Life 7D Assessment of Quality of Life 8D Efficiency of Assistive Technology and Services (EATS); Effectiveness measure instrument: Individually Prioritized Problem Assessment (IPPA) EQ-5D-5L Health Questionnaire (English version for the USA) Functional Mobility Assessment (FMA) Functioning Everyday with a Wheelchair (FEW) Handicap International Motivation Mobility

Alliance Psychosocial Impacts of Assistive Devices Scale (PIADS) Quality of Life Questionnaire (15D©) Adult Seating Identification Tool (SIT) Tool for Assessing Wheelchair Discomfort (TAWheelchair) Wheelchair Adapted IOI-HA Wheelchair Skills Test Wheelchair Use Confidence Scale for Manual Wheelchair Users (WheelCon-M, Version 3.0)

page 98—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Wheelchair Service Satisfaction with After or during the use of wheelchair; Tool Before or on being Wheelchair Service context; additonal services; frequency; given wheelchair Received maintenance WHO Quality of Life Quebec User Evaluation of Satifaction with Assistive Technology (QUEST 2.0) KWAZO (Quality of care questionnaire to assess the quality of assistive technology provision process from a client’s perspective) Buckinghamshire Hospitals Adult Needs Assessment Checklist Usability Scale for Assistive Technology Life Space

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 99 Appendix C. Wheelchair Survey Tool

Approved: November 18, 2014 IRB No.: 5839 Wheelchair User Survey Today’s Date: D D | M M | Y Y Start time: Circle: am/pm Country: County : Study Site: Interviewer ID:

Participant study ID: Was screener done? Circle: Yes or No Was oral consent Circle: Yes or No Was client locator form Circle: Yes or No obtained? updated with date of the survey done?

MODULE 0: Background Part A and Mobility History Circle: Go to M M | Y Y In what month and year were you 001 98. Don’t Know born? 99. Refused 1. Male 002 INTERVIEWER: Mark sex of respondent: 2. Female 98. Don’t Know 0. No schooling 1. Primary 2. Secondary What is the highest level of school you 3. Post secondary training (O or A level) 003 attended? 4. Vocational training 5. College or University 98. Don’t Know 99. Refused 1 = Married 2 = Divorced/ Separated 004 What is your marital status? 3 = Widowed 4 = Never Married And Never Lived Together 005 What was the condition that led you to 1. Spinal cord injury‐ paraplegic need a wheelchair? 2. Spinal cord injury‐ quadriplegic 3. Polio or post‐polio CHECK ALL THAT APPLY 4. Amputation 5. Congenital disability 6. Old Age 7. Stroke 8. Arthritis 9. Other: specify ______10. Don’t Know 11. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study page 100—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 006 What year and month did you become Date: MM| YYYY aware that you needed a wheelchair, 98 Don’t Know whether or not you got a wheelchair 99 Refused right away? 007 How long (duration in months and months_____, years)______years) was it between when you 98 Don’t Know became aware you needed a 99 Refused wheelchair and the moment you got your FIRST wheelchair? 008 In what month and year did you receive MM| YYYY your first wheelchair? 98 Don’t Know 99 Refused 009 How many wheelchairs have you (total number) ______acquired in your lifetime? 98 Don’t Know 99 Refused 010 How many wheelchairs have you (number) ______acquired in the last 5 years? 98 Don’t Know 99 Refused 011 How many wheelchairs do you (number) ______currently own and use? 98 Don’t Know 99 Refused 012 Is your current wheelchair (the one you 1. Yes received most recently) the wheelchair 0. No you use or occupy most frequently? 98. Don’t Know 99. Refused 013 In what month and year did you receive MM| YYYY your current wheelchair? (Your current 98 Don’t Know wheelchair means the wheelchair you 99 Refused most recently acquired.)

MODULE 1: Wheelchair Type Circle: Go to Interviewer: the following series describes the respondent’s current or most recently acquired wheelchair. If the respondent is not sitting in a wheelchair, or is sitting in a wheelchair other than the current (most recently acquired) wheelchair, ask to see the current wheelchair. If you are able to examine the chair, answer these questions independently. If the chair is unavailable, select “wheelchair unavailable”. Please read aloud the following statement: “Now I would like to look at your wheelchair and make some notes about its features.” OBSERVE and then ask, if necessary 101 Type of wheelchair 1. Basic indoor Chair If 3, 2. Rough Terrain Chair (long wheel base) →105 3. Wheelchair unavailable 98. Don’t Know IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 101 102 Are the following parts adjustable or 1. Backrest changeable: 2. Footrest (CIRCLE ALL THAT APPLY) 3. Armrest 4. Rear wheel/axle location 98. Don’t Know 103 Cushion 1. Yes If No, [Interviewer: Look at pictures or 2. No →105 drawings] 98. Don’t Know 104 Cushion type (Refer to example 1. Comfort (Flat or slight shape) pictures) 2. Pressure relief (deep shape or fluid or air) 3. Other: specify ______98. Don’t Know 105 Where did you obtain your current 1. Government unit (local or wheelchair? central/National) 2. Mission Hospital 3. Charitable organization 4. Church 5. Pharmacy or medical supply store 6. Given it by a friend or relative 7. Other (specify) 98. Don’t Know 99. Refused 106 Who paid for the chair? 1. Chair was provided free of charge 2. Myself 3. Spouse 4. Parent 5. Other family member 6. Friend, neighbor 7. Employer 8. Other: specify______98. Don’t Know 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

page 102—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 107a‐f Do you currently use any of the 1. Cane or walking stick: following aids? (Refer to example 1. Yes 0. No 98. DK 99. Refused pictures) 2. Walker : 1. Yes 0. No 98. DK 99. Refused 3. Crutch or crutches 1. Yes 0. No 98. DK 99. Refused 4. Brace 1. Yes 0. No 98. DK 99. Refused 5. Artificial limb 1. Yes 0. No 98. DK 99. Refused 6. Other (If Yes, specify) : 1. Yes 0. No 98. DK 99. Refused ______

MODULE 2: Wheelchair Satisfaction [Interviewer: Please read aloud the whole statement AND the answer categories:]

“I will now ask you questions regarding your satisfaction or dissatisfaction with your current wheelchair. Please answer either very satisfied, satisfied, neutral (neither satisfied nor dissatisfied), dissatisfied, and very dissatisfied.” [Interviewer: refer to paper aid with smiling/frowning faces corresponding with 1‐5 scale.] Circle one response per row: VS S Neu D VD DK tral “On your current chair, how satisfied are you with”: 201 How easy it is to use your wheelchair? 5 4 3 2Re 1 98 a 202 How comfortable your wheelchair is? 5 4 3 2 1 98 203 How well the wheelchair meets you needs? 5 4 3 2 1 98

MODULE 3: Wheelchair Services Assessment and Fitting—CURRENT CHAIR “I will now ask you questions regarding services you have received related to your CURRENT or most recently acquired wheelchair. Remember, this may or may not be the wheelchair you use most frequently.” 1. Present Were you present when your current or most 0. Someone else got it for me 301 recent wheelchair was provided, or did 98. Don’t Know someone else get it for you? 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 103 When you received your current or most recent chair, did a wheelchair provider help 1. Yes you choose the right wheelchair? They might 0. No 302 have measured your body, checked the fit of 98. Don’t Know the wheelchair, or made adjustments to the 99. Refused wheelchair. “I am going to list some things that may have been done or not done when you received 303 your current or most recent wheelchair. After I say each one, say yes or no.” 1. Yes Did the wheelchair provider measure your 0. No 303a body? 98. Don’t Know 99. Refused 1. Yes Did the wheelchair provider ask you or 0. No 303b physically check you for skin problems, 98. Don’t Know sensation or pressure sores? 99. Refused 1. Yes Did the wheelchair provider let you express 0. No 303c your needs related to the wheelchair? 98. Don’t Know 99. Refused 1. Yes Did the wheelchair provider listen to your 0. No 303d needs and use the information you 98. Don’t Know expressed? 99. Refused 1. Yes Did the wheelchair provider assess the fit of 0. No 303e the wheelchair while you propelled the chair? 98. Don’t Know 99. Refused 1. Yes Did the wheelchair provider check how easily 0. No 303f your body moves in the wheelchair? 98. Don’t Know 99. Refused 1. Yes Did the wheelchair provider adjust or modify 0. No 303g the wheelchair according to your needs? 98. Don’t Know 99. Refused Did the wheelchair provider check for unsafe 1. Yes pressure at your seat cushion surface (this 0. No 303h would have required the assessor putting 98. Don’t Know his/her hand under your buttocks)? 99. Refused 1. Yes Did the wheelchair provider measure or ask 0. No 303i about your home environment (such as 98. Don’t Know doorways and indoor spaces)? 99. Refused IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1 page 104—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study If No to 1. Yes Did the wheelchair provider ask you about all items 0. No 303j how and where you would use your 303a‐ 98. Don’t Know wheelchair? 303j, 99. Refused →309 1. Yes Did the wheelchair provider’s assessment 0. No 304 and/or fitting occur at your home? 98. Don’t Know 99. Refused 1. Yes Were you shown different types of 0. No 305 wheelchairs or features to choose from? 98. Don’t Know 99. Refused 0. None How long did the assessment take? This 1. 5‐30 min would include measuring your body, checked 2. 30‐60 min 306 the fit of the wheelchair, or made 3. More than 60 min adjustments to the wheelchair. 98. Don’t Know 99. Refused 0. None 1. 5‐30 min 2. 30‐60 min 307 How long did the fitting take? 3. More than 60 min 98. Don’t Know 99. Refused 1. Yes Did you have a choice from among a range of 0. No If No skip 308a wheelchairs? 98. Don’t Know to Q. 309 99. Refused 1. Yes Did you and your wheelchair provider agree 0. No If No skip 308b on choice of wheelchair from the range of 98. Don’t Know to Q. 309 wheelchairs? 99. Refused 1. Yes Did you receive the wheelchair that you chose 0. No 308c in agreement with the wheelchair provider? 98. Don’t Know 99. Refused Assessment and Fitting—EVER “I will now ask you questions regarding If Yes to services you have ever received along with any item any wheelchair, not just your current 303a‐303j wheelchair.” →310 Has a wheelchair provider EVER helped you 1. Yes choose the right wheelchair? They might have 0. No If No→ 309 measured your body, checked the fit of the 98. Don’t Know 312 wheelchair, or made adjustments to the 99. Refused wheelchair.

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 105 Month ______When did a wheelchair provider first assess Year ______310 and fit you for a wheelchair? 98. Don’t Know 99. Refused Month ______When did a wheelchair provider last assess Year ______311 and fit you for a wheelchair? 98. Don’t Know 99. Refused User Training “The next section is about training related to the use of a wheelchair. Training might cover things like getting around in a wheelchair or taking care of pressure sores.” 1. Yes Did you ever receive any training related to the 0. No If No→ 312 use of a wheelchair? 98. Don’t Know 316 99. Refused Month ______When did you first receive this kind of Year ______313 training? 98. Don’t Know 99. Refused Month ______Year ______314 When did you last receive this kind of training? 98. Don’t Know 99. Refused “During any training you have received, was 315 the following addressed or not addressed?” 1. Addressed 0. Not Addressed 315a How to get around in a wheelchair 98. Don’t Know 99. Refused 1. Addressed 0. Not Addressed 315b How to get in and out of a wheelchair 98. Don’t Know 99. Refused 1. Addressed Preventing pressure sores, such as by 0. Not Addressed 315c performing pressure relief (leaning or lifting 98. Don’t Know often)? 99. Refused Maintenance, Repair and Follow up FOR ANY WHEELCHAIR EVER USED “The next section is about maintaining and caring for your chair.” Have you ever been instructed in taking care of 1. Yes your wheelchair, such as any of the following: 0. No If No→ 316 keeping it clean, oiling moving parts, tightening 98. Don’t Know 319 spokes, and pumping tires? 99. Refused IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1 page 106—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Month ______When were you first instructed in wheelchair Year ______317 maintenance? 98. Don’t Know 99. Refused Month ______When were you last instructed in wheelchair Year ______318 maintenance? 98. Don’t Know 99. Refused 1. Yes Have you ever been told where to seek help 0. No If No→ 319 with wheelchair repairs that you cannot 98. Don’t Know 322 manage yourself? 99. Refused Month ______When were you first told where to go for help Year ______320 with wheelchair repairs? 98. Don’t Know 99. Refused Month ______When were you last told where to go for help Year ______321 with wheelchair repairs? 98. Don’t Know 99. Refused Has a wheelchair provider ever contacted you 1. Yes 0. No If No→ 322 to ask how you are doing with a wheelchair 98. Don’t Know 325 since you received it? 99. Refused Month ______When were you first contacted to see how you Year ______323 were doing with a chair? 98. Don’t Know 99. Refused Month ______When were you last contacted to see how you Year ______324 were doing with a chair? 98. Don’t Know 99. Refused

FREQUENCY OF USE OF WHEELCHAIR 325 How often do you use or occupy your wheelchair: 0. Daily Unless 1. Not daily but more than response once a week is 0. 2. Once a week (skip to 401) Daily→ 3. Less often than once a week 401 (skip to 401) 98. Don’t Know 99. Refused 326 I’d like to ask you some questions about how many hours per day do you use or occupy your wheelchair In the morning from the time you wake until (# Hours) _____ midday – how many hours are you in the wheelchair each day? (on average)

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 107 From midday to when you go to bed, how many (# Hours) _____ hours are you in the wheelchair each day? (on average) So overall in a day, you spend about (# Hours) Add up the number of hours. _____ in the wheelchair, is that right? Total (# Hours) _____

MODULE 4: Mobility & LIFE SPACE

Interviewer: Read aloud the following b. Did you c. Did you d. How often have statement: use your need help you been to ____? “The next questions refer to your activities wheelchair from just within the past month.” to get to__? another person to PLEASE CIRCLE RESPONSE in a,b,c,d get to__? 401a 401b 401c 401d 401 “During the past 1. Yes 1. Yes 1. Yes 1. Less than once a four weeks have you 2. No [SKIP to 402] 0. No 0. No week been to… 3. Not applicable 98. Don’t 98. Don’t 2. 1‐3 times per week other rooms of your (there are no other Know Know 3. 4‐6 times per week home besides the rooms, SKIP to 402) 99. Refused 99. Refused 4. Daily room where you 98. Don’t Know 98. Don’t Know sleep? 99. Refused 99. Refused 402 “During the past 1. Yes 1. Yes 1. Yes 1. Less than once a four weeks have you 2. No [SKIP to 403] 0. No 0. No week been to 3. Not applicable 98. Don’t 98. Don’t 2. 1‐3 times per week … an area outside (explain below) Know Know 3. 4‐6 times per week your home? 98. Don’t Know 99. Refused 99. Refused 4. Daily 99. Refused 98. Don’t Know 99. Refused

403 Which social gatherings or events do you regularly A. Gathering in your home participate in? B. Attending church/ mosque/ house of worship (CIRCLE ALL THAT APPLY) C. Shopping outside the home D. Visiting friends or family members’ homes E. Recreation outside the home F. Other (Specify) ______G. None 98. Don’t Know 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1 page 108—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study MODULE 5: Background Part B and Physical Health Read aloud this statement: “Now I’d like to ask you some questions about your background and your health.”

Write in or Tick SKIP to Number: ____ If How many other people live in your 501 98. Don’t Know Number household? 99. Refused is 0→503 1. Parents or in‐laws 2. Spouse or partner 3. Children Which of the following people live in your 4. Other family members household? 502 5. Friends 6. Paid staff (CIRCLE ALL THAT APPLY) 7. Other 98. Don’t Know 99. Refused Education Interviewer: Check the schooling question. If 6. Client had No schooling (q4), then skip to 509 1. Yes If 1. 0. No Yes→509 Did the accident, or condition that left you 2. Not Applicable (i.e. has been 503 needing a wheelchair, happen after you had disabled from birth) If 2. Not finished your schooling? 98. Don’t Know applicabl 99. Refused e → 507 1. Yes Did the accident, or condition that left you 0. No 504 needing a wheelchair, happen during the time 98. Don’t Know of your life when you were attending school? 99. Refused 1. Yes Did the accident, or condition that left you 0. No If 0. 505 needing a wheelchair force you to stop school? 98. Don’t Know No→ 508 99. Refused 1. Yes 0. No If 0. 506 Were you later able to start school again? 98. Don’t Know No→ 509 99. Refused 1. Yes Did receiving a wheelchair help you go to 0. No 507 school? 98. Don’t Know 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 109 1. Yes 0. No 512 Do you currently own your own business? 98. Don’t Know 99. Refused 1. Yes Did you ever receive vocational training for a 0. No If 0. 513 specific job or trade? 98. Don’t Know No→516 99. Refused 1. Yes 0. No 514 Did you complete the vocational training? 98. Don’t Know 99. Refused 1. Yes Was this vocational training aimed at persons 0. No 515 with disabilities? 98. Don’t Know 99. Refused 1. Receiving a wheelchair 2. Someone to take me (by car or After the accident or condition that affected other means) to the job site your mobility, what helped you return to work? 3. Vocational training program 4. Other specify: ______516 (Do not read the responses. Circle ALL that the 5. Not Applicable (i.e. has been respondent mentions.) disabled from birth or was a student) 98. Don’t Know 99. Refused Did your receiving a wheelchair help anyone 1. Yes else (for example, a caregiver) in your family 0. No If 0. 517 return to school, work or their normal daily 98. Don’t Know No→519 activities? 99. Refused 98. Don’t Know 518 If yes, please specify the relation 99. Refused Do you help take care of or raise any member 1. Yes of your family or community? (This can include 0. No If 0. No 519 providing financial support to this person you 98. Don’t Know →521 care for or raise) 99. Refused 1. Spouse or Partner of wheelchair user 2. Mother or Father of wheelchair Please specify the relation of those you help user take care of or raise. 3. Child of wheelchair user 520 4. Other relative (CIRCLE ALL THAT APPLY) 5. Neighbor or Friend 6. Other specify: ______98. Don’t Know 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

page 110—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 1. Yes 0. No 512 Do you currently own your own business? 98. Don’t Know 99. Refused 1. Yes Did you ever receive vocational training for a 0. No If 0. 513 specific job or trade? 98. Don’t Know No→516 99. Refused 1. Yes 0. No 514 Did you complete the vocational training? 98. Don’t Know 99. Refused 1. Yes Was this vocational training aimed at persons 0. No 515 with disabilities? 98. Don’t Know 99. Refused 1. Receiving a wheelchair 2. Someone to take me (by car or After the accident or condition that affected other means) to the job site your mobility, what helped you return to work? 3. Vocational training program 4. Other specify: ______516 (Do not read the responses. Circle ALL that the 5. Not Applicable (i.e. has been respondent mentions.) disabled from birth or was a student) 98. Don’t Know 99. Refused Did your receiving a wheelchair help anyone 1. Yes else (for example, a caregiver) in your family 0. No If 0. 517 return to school, work or their normal daily 98. Don’t Know No→519 activities? 99. Refused 98. Don’t Know 518 If yes, please specify the relation 99. Refused Do you help take care of or raise any member 1. Yes of your family or community? (This can include 0. No If 0. No 519 providing financial support to this person you 98. Don’t Know →521 care for or raise) 99. Refused 1. Spouse or Partner of wheelchair user 2. Mother or Father of wheelchair Please specify the relation of those you help user take care of or raise. 3. Child of wheelchair user 520 4. Other relative (CIRCLE ALL THAT APPLY) 5. Neighbor or Friend 6. Other specify: ______98. Don’t Know 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 111 Have you ever received Peer Group Training? 1. Yes This is a special training program from other 0. No If 0. 521 wheelchair users on several topics, usually not 98. Don’t Know No→525 at the time that you received the wheelchair 99. Refused for the first time. 1. None at all 2. Some positive effect How much of an effect on your daily life did this If 1. 522 3. A large positive effect Peer Group Training have? →525 98. Don’t Know 99. Refused Write in: 1. Please explain the 2 main benefits to you of the 523 Peer Group Training 2. 98. Don’t Know 99. Refused Are you a Peer Group Trainer?

1. Yes 0. No 524 98. Don’t Know 99. Refused

Health

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

page 112—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study [INTERVIEWER: Show respondent the diagram.] Since you received your CURRENT wheelchair (the one you most recently acquired), how many pressure sores have you ever had in the area circled?

Write in number: ____ If 525 98. Don’t Know number 99. Refused is 0→527

(Write in level 1, 2, 3, or 4) [INTERVIEWER: Show the respondent picture Level: ______526 and ask:] Which picture looks most like your 98. Don’t Know most serious pressure sore? 99. Refused [Interviewer Read aloud the following statement: The next questions are about things you might have been taught to do. For each, please answer “I don’t know, I know a little, I know well, or I know very well.”] 98: I don’t know Do you know how to relieve weight pressure 1: I know a little 527 points, for example by doing weight shifts and 2: I know well bending forward? 3: I know very well 99. Refused 98: I don’t know Do you know what to do in case of a lingering 1: I know a little 528 discolored or red patch on your skin of your 2: I know well skin? 3: I know very well 99. Refused 98: I don’t know Do you know how often and for how long you 1: I know a little 529 should do weight shifts to relieve these weight 2: I know well pressure points? 3: I know very well 99. Refused 1. Yes 0. No If No. 530 With your current WC have you ever fallen? 98. Don’t Know →533 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional 87Study—page 113 Was this a serious fall? By serious, I mean a fall 1. Yes that left you with pain or soreness that lasted 0. No 531 more than one hour, bruising, skin cuts or 98. Don’t Know abrasions, or injuries to your bones or joints? 99. Refused

_____ times since receiving current Thinking of the serious fall(s), how many have 532 wheelchair you had? 98. Don’t Know 99. Refused 0. Never 1. Very rarely How often do you experience serious pain 2. Once in a while 533 when using your current wheelchair. Do you 3. Often experience pain? 4. Most of the time 98. Don’t Know 99. Refused 0. Never How often have you been to the health center 1. Once If 0. or hospital (or seen a health professional) 2. Twice 534 Never→ about your own health, for any reason, in the 3. Three times or more 536 past year? 98. Don’t Know 99. Refused 1. Regular check up 2. Bladder infection What are the reasons you have been to the 3. Pressure sore health center or hospital? 4. To get Urinary equipment 535 5. Others (specify): ______(Mark all responses that APPLY) ______98. Don’t Know 99. Refused Assistance for Activities of Daily Living Read aloud this statement: “For each activity that I read, please let me know if you 536 perform it independently or assited”: 1. Independently 0.Assisted 98. 536a Bathing, showering DK 99. Refused 1. Independently 0.Assisted 98. 536b Cooking DK 99. Refused 1. Independently 0.Assisted 98. 536c Dressing DK 99. Refused 1. Independently 0.Assisted 98. 536d Eating DK 99. Refused 1. Independently 0.Assisted 98. 536e Toilet hygiene DK 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1 page 114—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study MODULE 6: Household Wealth Read aloud this statement: “This is our last section to find out more about your household situation.” 1. Piped into dwelling 2. Piped to yard/plot 3. Public tap/standpipe 4. Tube well or borehole 5. Protected well 6. Unprotected well 7. Protected spring 8. Unprotected spring What is the main source of drinking water 601 9. Rainwater for members of your household? 10. Tanker truck 11. Cart with small tank 12. Lake/pond/stream/canal/ irrigation channel 13. Bottled water 14. Other ______98. Don’t Know 99. Refused 1. In own dwelling 2. In own yard/plot 602 Where is that water source located? 3. Elsewhere 98. Don’t Know 99. Refused 1. Yes If 0 skip to 605 Do you do anything to the water to make 0. No 603 it safer to drink? 9. Don’t know 99. Refused 1. Boil 2. Add bleach/chlorine 3. Strain through a cloth 4. Use water filter What do you usually do to make the (ceramic/sand/composite/etc) 604 water safer to drink? 5. Solar disinfection 6. Let it stand and settle 7. Other 98. Don’t know 99. 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 115 1. Flush to piped sewer system 2. Flush to septic tank 3. Flush to pit latrine 4. Flush to somewhere else 5. Flush, don't know where 6. Ventilated improved pit latrine What kind of toilet facility do members of 7. Pit latrine with slab 605 your household usually use? 8. Pit latrine without slab/ 9. Composting toilet 10. Bucket toilet 11. Hanging toilet/hanging latrine 12. No facility/bush/facility 13. Other 98. Don’t Know 99. Refused Do you share this toilet facility with other 1. Yes 0. No 98. DK 99. If 0. 606 households? Refused No→608 NO. OF HOUSEHOLDS IF LESS THAN 10 How many households use this toilet (Write): ______607 facility? 10 or more households: ______98. Don’t Know 99. Refused ‐ Does your household have: 1. Yes 0. No 98. DK 99. 608 A Electricity? Refused 1. Yes 0. No 98. DK 99. 6090 B a radio? Refused 1. Yes 0. No 98. DK 99. 610 C a television? Refused 1. Yes 0. No 98. DK 99. 611 D a mobile telephone? Refused 1. Yes 0. No 98. DK 99. 612 F a refrigerator? Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1 page 116—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 1.Electricity 2. Liquefied petroleum gas (LPG) 3. Natural gas 4. Biogas 5. Kerosene 6. Coal, lignite What type of fuel does your household 7. Wood 613 mainly use for cooking? 8. Straw/shrubs/grass 9. Agricultural crop 10. Animal dung 11. No food cooked in household 12. Other 98. Don’t Know 99. Refused 1. In the house 2. In a separate building outdoors Is the cooking usually done in the house, 614 3. Other in a separate building, or outdoors? (specify)______98. Don’t Know 99. Refused Do you have a separate room which is 1. Yes 0. No 98. DK 99. 615 used as a kitchen? Refused 1. Earth/sand 2. Dung 3. Wood planks 4. Palm/bamboo 5. Parquet or polished wood What is the main material of the floor in 6. Vinyl or asphalt strips your home? 616 7. Ceramic tiles 8. Cement 9. Carpet 10. Other ______98. Don’t Know 99. Refused

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 117 1. No roof 2. Thatch/palm leaf 3. Sod 4. Rustic mat 5. Palm/bamboo 6. Wood planks 7. Cardboard What is the main material of the roof? 8. Metal (iron sheets) 617 9. Wood 0. Calamine/cement fiber 1. Ceramic tiles 2. Cement 3. Roofing shingles 4. Other ______98. Don’t Know 99. Refused 1. No walls 2. Cane/palm/trunks 3. Dirt 4. Bamboo with mud 5. Stone with mud 6. Uncovered adobe 7. Plywood What is the main material of the exterior 8. Cardboard walls? 9. Reused wood 618 10. Cement 11. Stone with lime/cement 12. Bricks 13. Cement blocks 14. Covered adobe 15. Wood planks/shingles 16. Other ______98. Don’t Know 99. Refused How many rooms in this household are 619 Number of Rooms: ______used for sleeping? Does any member of this household own: 1. Yes 0. No 98. DK 99. 620 a bicycle? Refused 1. Yes 0. No 98. DK 99. 621 a motorcycle or motor scooter? Refused IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1 page 118—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 1. Yes 0. No 98. DK 99. 622 an animal‐drawn cart? Refused 1. Yes 0. No 98. DK 99. 623 a car or truck? Refused Does any member of this household own 1. Yes 0. No 98. DK 99. If 0. No→626 624 any agricultural land? Refused a. Hectares: ______How many acres of agricultural land do 625 b. 95 or more hectares members of this household own? c. Don’t know Does this household own any livestock, 1. Yes 0. No 98. DK 99. If 0. No→633 626 herds, other farm animals, or poultry? Refused (write in each row below) IF NONE, ENTER '00'. How many of the following animals does IF 95 OR MORE, ENTER this household own? (5) '95'. IF UNKNOWN, ENTER '98'. IF REFUSED, ENTER ‘99’. 627 Cattle? 628 Milk cows or bulls? 629 Horses, donkeys, or mules? 630 Goats? 631 Sheep? 632 Chickens? Does any member of this household have 1. Yes 0. No 98. DK 99. 633 a bank account? Refused

Now we are done with all the questions. Is there anything you would like to say before we close? ______

THANK YOU FOR YOUR TIME.THE END. End time: : am/pm Checked by supervisor: (Supervisor writes initials once checked for completeness)

Interviewer comments (optional): ______

IRB #5839 Bazant, Wheelchair services, utilization and turnover in low resource settings: a cross‐sectional, mixed‐methods study, v1

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 119 Appendix D. Data Collector Training Agenda, Kenya

Location: Silver Springs, Nairobi, Kenya, 21–24 October, 2014

Objective: Interviewers become competent in the study objectives and background, how to interact with and collect data from participants using approved tools, and logistics of data collection.

Participants: 8 surveyors, 2 qualitative interviewers, field managers

Facilitators: Kenya lead investigator, principal investigator, wheelchair experts, project staff

Day 1: Tuesday, 21 October 2014 Time # Session Materials Facilitator(s) 8:30 – 9:00am 1 Welcome & introductions Name plates Anthony Presentation: Jhpiego, Accelovate Eva 9:00 – 9:45am 2 • Review of workshop objectives/agenda PowerPoint presentations; Eva • Overview of wheelchair services study scope and objectives & local letters of approval approvals obtained • Amount of data to be collected, sample sizes • Overall study flow 9:45 – 10:45am 3 • Wheelchair users’ needs and situation in Kenya, East Africa PowerPoint presentation or Charles Kanyi • Wheelchair services offered and recommended by World Health discussion Organization • Convention on the Rights of Persons with Disabilities adapted for Kenya and its relation to person with mobility disability 10:45 – 11:00am Tea break 11:00 – 11:30am 4 Roles of surveyor, in-depth interviewer, field manager PowerPoint presentations Tom 11:30am – 12:00 5 Ethics in human subjects research data collection JHSPH IRB Field Guide Eva 12:30 – 1:30pm Lunch break 2:00 – 2:30pm Communicating with users WHO guidelines and videos Charles Kanyi 2:30 – 4:30pm 6 • Locations of study Org lists; Brenda • Using wheelchair organizations’ lists of clients or local governments participant contacts listing • How to contact/find wheelchair users form; • How to set up meetings with wheelchair users at homes or a central surveyor daily site; transportation issues (not reimbursement) tally sheet; • Reimbursements for participants, caregivers, transport payment log; flow charts; • How to do preliminary screening qualitative; overall tally • Daily expectations of data to be collected and documentation by sheet surveyors and in-depth interviewers • Teamwork: referrals of survey participants to qualitative interviewers In English and Swahili: Large group goes over: • Screening script • Consent for survey Consent scripts (both English Naomi • Consent for in-depth Interview and Swahili) 4:30pm Review of agenda for Day 2 Tom 4:45pm END OF DAY 1 4:45 – 5:00pm Facilitators plan for next day page 120—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Day 2: Wednesday, 22 October 2014 Time # Session Materials Facilitator(s) 8:30 – 8:45am Pearls of Day 1; Agenda for Day 2 Brenda 8:45 – 9:30am 1 Pairs: Practice role play and switch 2 Consent scripts Brenda (English and Swahili) 9:30 – 10:30am 4 Large group: Overview of survey tool modules; Paper survey tool and Jonesmus/Norah go over each question in: wheelchair competency Keitany • Go through the Swahili version with reference to the English document • Module 00 and 0: Interview Details, Mobility History (Qualitative interviewers attend to appreciate only) 10:30 – 10:45am Tea Break 10:30am – 12:30pm 4 Large group: Overview of survey tool modules; Paper survey tool and Jonesmus/Norah go over each question in: wheelchair competency Keitany • Module 1 and 2: Wheelchair Type: Demonstrating Wheelchair document Components (Qualitative interviewers attend to appreciate only) 12:30 – 1:30pm Lunch break 1:30 – 2:45pm 2 Distribution of tablets Hardware and Charles Waka • How to operate and collect data on tablets accessories; tips sheet or user manual 2:45 – 3:30pm 4 Large group: Overview of survey tool modules; Paper survey tool and Jonesmus/Norah go over each question in: wheelchair competency Keitany Module 1 and 2: Wheelchair Type, Wheelchair Satisfaction document (Qualitative interviewers attend to appreciate only) 3:30 – 3:45pm Tea Break 3:45 – 4:30pm 4 Large group: Overview of survey tool modules; Paper survey tool and Jonesmus/Norah go over each question in: wheelchair competency Keitany • Module 1 and 2: Wheelchair type, Wheelchair Satisfaction document (Qualitative interviewers attend to appreciate only) 4:00 – 4:30pm Review of agenda for Day 3 Naomi 4:45 END OF DAY 2 4:45 – 5:00pm Facilitators plan for next day

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 121 Day 3: 23 October 2014 Time # Session Materials Facilitator(s) 8:30 – 8:45am Pearls of Day 2; Agenda for Day 3 Naomi 8:45 – 10:30am 5 Large group: Review of survey tool (continued) Jonesmus/Norah Keitany Module 3: Wheelchair Services • Assessment and fitting with current chair, ever • User training • Maintenance, repair, and follow-up • Frequency in use of chair Module 4: Mobility, Life Space, Chair Use, Social Life 10:30 – 10:45am Tea Break 10:45 – 11:30am 6 Module 5: Background and Physical Health Survey group: Tom • Family, education, employment, work, and vocational training, health (Qualitative interviewers attend to appreciate only)

Module 6: Household Wealth --Tips for survey questioning, handling questions from respondents or interruptions

Simultaneously: In-Depth Interview Field Guide for qualitative interviewers Qualitative group: In English and Swahili Naomi/Tom Guidance for eliciting qualitative information, probing 11:30am – 12:30pm 1 Pairs: Survey group: • Surveyors go over survey with a partner, using the tablet Tom, Jonesmus, • Qualitative interviewers go over field guide with a partner Brenda Qualitative group: Eva, Naomi 12:30 – 1:30pm Lunch break 1:30 – 3:30pm 2 Pairs (continued) See above

Qualitative interviewers: Eva • Go over recording on audio and note taking; switch roles Naomi/Tom • Instructions on transcription 3:30 – 4:00pm 6 Supervisor tally sheets & interviewer daily log Daily sheet tallies, logs Brenda • How to keep data and identifiers (papers organized/files) organized, confidential, and separate • How to communicate with supervisor daily, transfer data or completed papers, and keep confidential 4:00pm – 4:30pm Review of agenda for Day 4 Jonesmus 4:45pm END OF DAY 3 4:45 – 5:00pm Facilitators plan for next day

page 122—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Day 4: 24 October 2014 Time # Session Materials Facilitator(s) 8:30 – 8:45am Pearls of Day 3; Agenda for Day 4 Jonesmus 8:45 – 10:30am 1 Pretest in Swahili with wheelchair users: All tools Tom, Eva, Brenda, Small groups: Do Consent1 + Survey or Charles K and Norah wheelchair users Simultaneously: Do Consent2 + In-Depth Interview 10:30 – 10:45am Tea break 10:45am – 12:30pm 2 Debrief of pretest Tom and Levis Brenda Checklist of materials to have on hand in the field 12:30 – 1:30pm Lunch break 1:30 – 2:00pm 3 Review dates of data collection, where interviewers will go; review local Naomi and Levis contacts and other logistics 2:00 – 3:00pm 4 Close workshop Tom, Eva 3:30 – 5:00pm Facilitators meeting and plan for next steps

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 123 Appendix E. Data Collector Training Agenda, Philippines

Location: The Pearl Manila, Philippines 26–30 January, 2015

Objective: Interviewers become competent in the study objectives and background, how to interact with and collect data from participants using approved tools, and logistics of data collection.

Participants: 15 field data collectors, 7 field supervisors, 3 IHPDS team leaders

Facilitators: Philippines lead investigator, principal investigator, wheelchair experts, Philippines’ LRO Team Leaders, project staff

Day 0: Monday, 26 January 2015 Time # Session 8:00 – 5:00pm Consultations with Jhpiego Baltimore and Jhpiego Philippines Logistical Preparations Facilitators’ Training Planning Venue: NIH-IHPDS Office

Day 1: Tuesday 27 January 2015 Time # Session Materials Facilitator(s) 7:30 – 8:00am Registration period Registration papers, training Amy and Jessa kits 8:00 – 8:30am Ice breaker: “Getting to Know You” Tyrone 8:30 – 9:00am 1 Welcome & introductions Name plates Dr. Marinduque Presentation: Jhpiego, Accelovate, IHPDS Emma Dr. Hilton Lam 9:00 – 9:45am 2 • Summary of training workshop objectives/agenda Training agenda Tyrone • Wheelchair users’ needs and situation in Philippines • Wheelchair services offered and recommended by WHO • Convention on the Rights of Persons with Disabilities PowerPoint presentation: Tchai adapted for Philippines and its relation to persons with “Wheelchair User Needs” mobility disability 9:45am – 10:00am Tea break 10:00 – 11:00am 3 • Overview of wheelchair services study scope and PowerPoint presentation: Emma objectives & local approvals obtained “Wheelchair Training • Amount of data to be collected; sample sizes Overview” • Overall study flow 11:00am – 12:00pm 4 Roles of field data collector and service agreement signing; Service Agreement Tyrone reimbursements for participants, caregivers, transport 12:00 – 1:30pm Lunch break 1:30 – 2:00pm Icebreaker/team-building activities Kent 2:00 – 2:30pm 5 Ethics in human subjects research data collection JHSPH IRB Field Guide Emma

page 124—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Time # Session Materials Facilitator(s) 2:30 – 3:15pm Communicating with users PPT: “Communicating with Tchai wheelchair users” WHO guidelines and videos 3:15 – 4:30pm 6 • Locations of study PowerPoint presentation: Tchai • Using wheelchair organizations’ lists of clients or local “Locations of study” governments • How to contact/find wheelchair users PPT: “Study location in the Dr. Ferdz Garcia • How to set up meetings with wheelchair users at Philippines homes or at central site; transportation issues (not & wheelchair study reimbursement) participants” • How to do preliminary screening Screening scripts, consent Large group goes over: forms (both English and • Screening script Filipino) • Consent for survey • Consent for in-depth interview 4:30pm Review of agenda for Day 2 Mae 4:45pm END OF DAY 1 4:45 –5:00pm Facilitators plan for next day

Day 2: Wednesday 28 January 2015 Time # Session Materials Facilitator(s) 7:30 – 8:00am Registration period Registration materials Amy and Jessa 8:00 – 8:30am Icebreaker Tyrone 8:30 – 8:45am Short assessment quiz for Day 1 discussions Tyrone 8:45 – 9:00am Pearls of Day 1; agenda for Day 2 Mae 9:00 – 9:45am 1 Pairs: Practice role play & switch 2 consent scripts (both Jessa English and Filipino) 9:45 – 10:30am Distribution of tablets; how to operate and collect data on Hardware and accessories; Dr. Ado Rivera tablets; troubleshooting of ODK and tablets tips sheet or user manual 10:30 – 10:45am Tea break 10:45 – 11:45am 4 Large group: Overview of survey tool modules Paper survey tool and Tchai • Go over each question in survey wheelchair competency Dr. Ferdz Garcia • Go through the Filipino version with reference to the document English • Module 00 and 0: Interview Details, Mobility History 11:45am – 12:15pm 4 Continued… Paper survey tool and Tchai Large group: Overview of survey tool modules wheelchair competency Dr. Ferdz Garcia • Go over each question in: document • Module 1 and 2: Wheelchair Type: Demonstrating Wheelchair Components 12:15 – 1:30pm Lunch break

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 125 Time # Session Materials Facilitator(s) 1:30 – 2:00pm Icebreaker/team-building activities Roy 2:00 – 2:45pm Continued… Paper survey tool and Tchai Large group: Overview of survey tool modules wheelchair competency Dr. Ferdz Garcia • Go over each question in: document • Module 1 and 2: Wheelchair Type, Wheelchair Satisfaction 2:45 – 3:00pm Tea break 3:00 – 4:00pm 4 Continued… Paper survey tool and Tchai Large group: Overview of survey tool modules wheelchair competency Dr. Ferdz Garcia • Go over each question in: document Module 1 and 2: Wheelchair Type, Wheelchair Satisfaction 4:00 – 4:30pm Review of agenda for Day 3 Mae 4:45pm END OF DAY 2 4:45 – 5:00pm Facilitators plan for next day

Day 3: Thursday 29 January 2015 Time # Session Materials Facilitator(s) 7:30 – 8:00am Registration period Registration papers Amy and Jessa 8:00 – 8:30am Ice breaker/team-building activities Tyrone 8:30 – 8:45am Short assessment quiz for Day 2 discussions Ado 8:45 – 9:00am Pearls of Day 2; agenda for Day 3 Mae 9:00 – 10:45am 1 Large group: Review of survey tool (continued) Paper survey tool and Tchai wheelchair competency Dr. Ferdz Garcia Module 3: Wheelchair Services document • Assessment and fitting with current chair, ever • User training • Maintenance, repair and follow-up • Frequency in use of chair • Module 4: Mobility, Life Space, Chair Use, Social Life 10:45 – 11:00am Tea break 11:00 – 11:45am 2 Mobility 5: Background and Physical Health Paper survey tool and Tchai • Family, education, employment, work, and vocational wheelchair competency Dr. Ferdz Garcia training, health document • (Qualitative interviewers attend to appreciate only)

Mobility 6: Household Wealth • Tips for survey questioning, handling questions from respondents or interruptions

Simultaneously: Interview Field Guide for qualitative interviewers In English and Filipino Guidance for eliciting qualitative information; probing

page 126—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Time # Session Materials Facilitator(s) 11:45am – 12:15pm 3 Pairs: Tablet-based tool Field supervisors— • Field data collectors go over survey with a partner, using the IHPDS; Emma tablet • Qualitative interviewers go over field guide with a partner 12:15 – 1:15pm Lunch break 1:15 – 1:30pm Icebreaker and team-building activities Jessa and Amy 1:30 – 3:30pm 4 Pairs: Continued

Qualitative interviewers go over recording on audio and note taking; Field supervisors— switch roles; instructions on transcription IHPDS; Lea, Emma 3:30 – 4:30pm 5 Supervisor tally sheets & interviewer daily log Field data collector Ado • How to keep data and identifiers (papers organized/files) master list, field data organized, confidential, and separate collector directory, Tyrone • How to communicate with supervisor daily, transfer data or quantitative daily tally completed papers, keep confidential sheet, FD appointment, • Protocol in case of unforeseen events (scenarios and qualitative daily tally responses); basic psychological debriefing; information to be sheets, Google sheets mentioned before disengaging from the participant PowerPoint presentation: “PFA handout”

Group activity: “Sharing of ideas” 4:30 – 4:45pm Review of agenda for Day 4 Mae 4:45pm END OF DAY 3 4:45 – 5:00pm Facilitators plan for next day

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 127 Day 4: Friday 30 January 2015 Time # Session Materials Facilitator(s) 7:30 – 8:00am Registration period Registration papers Jessa and Amy 8:00 – 8:30am Ice breaker/team-building activities Tyrone 8:30 – 8:45am Short assessment quiz for Day 3 discussions Kent and Amy 8:45 – 9:00am Pearls of Day 3; agenda for Day 4 Mae 9:00 – 10:45am 1 Pretest in Filipino with wheelchair users: All tools Field supervisors— Small groups: Do Consent1 + Survey or IHPDS; Emma; Tchai

Simultaneously: Do Consent2+ In-depth interview 10:45 – 11:00am Tea break 11:00am – 12:15pm 2 Debrief of pretest Field supervisors— IHPDS Checklist of materials to have on hand in the field 12:15 – 1:30pm Lunch break 1:30 – 2:00pm Ice breaker/team-building activities Jam and Anna 2:00 – 3:00pm 3 Review dates of data collection, where interviewers will go; review Tyrone and Ado, LGU local contacts & other logistics Advisors 3:00 – 3:30pm 4 Administrative, finance, and liquidation procedures Kent, Amy, and Leah 3:30 – 4:00pm 5 Closing ceremonies All 4:00 – 5:00pm Facilitators’ meeting and planning for next steps

page 128—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Appendix F. In-Depth Interview Guide

In-Depth Interview Guide: Cover Sheet

Date:

Participant Study ID: (3-letter org prefix and number id)

(Circle one in each row)

Gender: M F

Service or Distribution: S D

Age: ≤45 >45

ASK AT THE END OF INTERVIEW:

Highest educational level:

Notes to interviewer:

nn It is not necessary to ask every single prompt. Choose from among the prompts if the information is not forthcoming.

nn The order of the interview can be modified, according to topics raised by the interviewee. You can go back to a previous topic or go to a future topic, follow the conversation.

nn Please tell the intereviewee that he or she is the expert, we will learn from him or her, and we would like to hear their experiences; there are no right or wrong answers.

nn Clearly explain the study purpose to the interviewee and his or her caregiver (if present) and obtain consent before starting interview; ask for permission to interview in private, if at all possible.

nn Write notes after the interview on the interview environment (for example, interruptions, others being present, disturbances, any issues that arose). Do the transcript from the audio recording as soon as possible.

Qualitative Field Guide Questions for Wheelchair Users

1. Please tell me about the circumstances or condition that required you to need a wheelchair. • Age when the loss of mobility occurred.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 129 2. Tell me about your first wheelchair. Prompts: • Describe how you got the wheelchair: Organization, services that provided it, cost, etc. • Describe the wheelchair and cushion. • Describe the process used to select the chair. • Describe any services or training received to help use the chair. • Describe any services or training received to help take care of the chair. • Describe how you used the chair. • Describe any challenges and successes in the chair.

3. How has your life changed since you first received a wheelchair? Prompts: • What goals have you reached, and what remain? • What has helped you reach your goals, and what could help you further? • What kind of involvement have you had with other persons with disabilities? (For example, membership in a disabled persons organization.) • What kind of contacts have you had with organizations that help wheelchair users, other than the time that you received the wheelchair?

4. How many total wheelchairs have you owned? (if the person has owned more than one wheelchair.)

5. Since you received your first wheelchair up to now, what have been your memorable experiences (best or worst experiences) with… a. family caregivers? b. community support? (friends, neighbors, community members etc.) c. physical environment in your home or around your home?

6. Tell me about your current wheelchair (if the person has owned more than one wheelchair.) Prompts: • What led you to change from the previous wheelchair? • Describe how you got the wheelchair: Organization, services that provided it, cost, etc. • Describe the wheelchair and cushion. • Describe the process used to select the chair. • Describe any services or training received to help use the chair. • Describe any services or training received to help take care of the chair. • Describe how you used the chair. • Describe any challenges and successes in the chair.

7. What is a typical day in your life like now?

page 130—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 8. Tell me about your favorite wheelchair (if the person has owned more than one wheelchair.) Prompts: • How was (is) this chair different from other chairs? • Did the provider of this chair do anything that made a difference? • Tell me about a time this chair helped you reach a goal. (How does this chair help you meet your daily goals?)

9. Tell me about your least favorite wheelchair (if the person has owned more than one wheelchair.). Prompts: • How was (is) this chair different from other chairs? • Did the provider of this chair do anything that made a difference? • Tell me about a time this chair made it hard for you to reach a goal. (How does this chair help you meet your daily goals?)

10. What do you recommend for wheelchair services—special help that a wheelchair user receives along with a wheelchair? Prompts • Are needs different after a wheelchair user receives their second or third wheelchair? • What services or training should a wheelchair user receive? • What services or training should a family (caregiver) receive?

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 131 Appendix G. Description of Variables Used in Wheelchair Analysis

Variable Description Outcomes High, low, and no daily “How often do you use or occupy your wheelchair?” (q325) The next question had a preamble: “I’d like to ask you some questions wheelchair use (3-level) about how many hours per day you use or occupy your wheelchair.” (q326) The first question was: “In the morning from the time you wake until midday, how many hours are you in the wheelchair each day (on average)?” This was followed by: “From midday to when you go to bed, how many hours are you in the wheelchair each day (on average)?” and “So overall in a day, you spend about (# hours) _____ in the wheelchair. Is that right?” This last number was used for analysis. Responses were categorized as “Not daily,” “1–7 hours daily,” and “≥8 hours daily.” Unassisted indoor Users who reached another room besides the sleeping room in a wheelchair unassisted (code 0 on q401_c “did not need help”) wheelchair use (2-level) vs. those who were assisted or who did not reach the room. Those who did not have another room to go to (possible answer for first question) were excluded (coded as missing). Those who reached another room but not in a wheelchair were coded “no.” (q401_a, b, and c) Unassisted outdoor Same as above but for outdoor wheelchair use (q402_a, b, and c) wheelchair use (2-level) High vs. low performance Sum of four ADLs: bathing or showering (q536a), dressing (q536c), eating (q536d), toilet hygiene (q536e) (excluded cooking, of activities of daily living q536b, since many users of both genders did not cook). This variable was split into high (3+) and low (0–2). (ADLs) (2-level) Number of wheelchairs Number of wheelchairs acquired in last 5 years (q_10) was split at 2+ and 0–1. Most respondents responded “1.” Some who acquired in last 5 years responded “0” were coded as missing because all respondents must have acquired a current chair in last 5 years to be included in (2-level) the survey. Pressure sores with current One survey item was, “Since you received your current wheelchair (the one you most recently acquired), how many pressure sores chair (2-level) have you ever had in the area circled?” Interviewer was to show a diagram of the seating area. (q525) This was coded to be either ≥1 or none. Falls while in current chair Two survey items were, “With your current wheelchair, have you ever fallen?” and “Was this a serious fall? By serious, I mean a (3-level) fall that left you with pain or soreness that lasted more than one hour, bruising, skin cuts or abrasions, or injuries to your bones or joints?” (q530 and q531) The variable was coded to have three responses: “None”; “Falls, Non-serious”; and “Falls, Serious.” Wheelchair Services Received Assessment on 2+ aspects The first step in creating this variable was determining whether the user was asked key questions by the provider: “Did the wheelchair provider measure or ask about your home environment (such as doorways and indoor spaces)?” (q303_i) or “Did the wheelchair provider ask you about how and where you would use your wheelchair?” (q303_j) The second step was asking about “expression”: “Did the wheelchair provider let you express your needs related to the wheelchair?” (q303_c) or “Did the wheelchair provider listen to your needs and use the information you expressed?” (q303_d) We added these two variables to the item, “Did the wheelchair provider measure your body?” (q303_a) The score ranged from 0 to 3. The variable was split into two levels:”Assessment on 2+ aspects” was coded “yes” for a score of 2 or 3 and “no” for a score of 0 or 1. Fitting (any) A composite variable reflecting receipt of at least one of the following items with regard to the current or most recently acquired chair: • Were you shown different types of wheelchairs or features to choose from? (q305) • Did you have a choice from among a range of wheelchairs? (q308_a) • Did you and your wheelchair provider agree on choice of wheelchair from the range of wheelchairs? (q308_b) • Did you receive the wheelchair that you chose in agreement with the wheelchair provider? (q308_c) • Did the wheelchair provider adjust or modify the wheelchair according to your needs? (q303_g)

page 132—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Variable Description Training A composite variable reflecting receipt of at least one of the following items: • Did you ever receive any training related to the use of a wheelchair? (q312) • During any training you have received, were the following addressed or not addressed? - How to get around in a wheelchair (q315_a) - How to get in and out of a wheelchair (q315_b) - Preventing pressure sores, such as by performing pressure relief (leaning or lifting often) (q315_c) Fit while propelling “Did the wheelchair provider assess the fit of the wheelchair while you propelled the chair?” (q303_e) Provider asks or checks “Did the wheelchair provider ask you or physically check you for skin problems, sensation, or pressure sores?” (q303_b) regarding skin Provider checks for unsafe “Did the wheelchair provider check for unsafe pressure at your seat cushion surface (this would have required the assessor putting pressure at seat his/her hand under your buttocks)?” (q303_h) Assessment occurs at home “Did the wheelchair provider’s assessment and/or fitting occur at your home?” q304 Duration of assessment “How long did the assessment take? This would include measuring your body, checking the fit of the wheelchair, or making adjustments to the wheelchair.” (q306) Provider ever helped choose “Has a wheelchair provider EVER helped you choose the right wheelchair? They might have measured your body, checked the fit of chair the wheelchair, or made adjustments to the wheelchair.” (q309) Instructions in maintenance “Have you ever been instructed in taking care of your wheelchair, such as any of the following: keeping it clean, oiling moving parts, tightening spokes, and pumping tires?” (q316) Provider informed where to “Have you ever been told where to seek help with wheelchair repairs that you cannot manage yourself?” (q319) seek repairs Provider followed up “Has a wheelchair provider ever contacted you to ask how you are doing with a wheelchair since you received it?” (q322) Peer group training “Have you ever received peer group training? This is a special training program from other wheelchair users on several topics, usually not at the time that you received the wheelchair for the first time.” (q521) Disability-Related Condition related to need for “What was the condition that led you to need a wheelchair?” (q5) There were eight preformed response categories and “Other wheelchair (specify).” Many respondents gave an open-ended response that was later coded to these to the preformed or new categories. Some individuals gave more than one condition, and for these the analysts determined which reason was dominant. For the Philippines, the categories were: spinal cord injury (paraplegic and quadriplegic), polio/post-polio, amputation, congenital disability, old age, arthritis, bone problems, stroke/nerve/clot, accident, infection, surgery/medical error/injection, muscle problems/ weakness, and other. In Kenya, an additional category was diabetes. We report the major categories and collapsed for the inclusion in the multivariable analysis. Where chair was obtained The survey item was “Where did you obtain your current wheelchair?” (q105) Pre-coded response categories were: government unit (local or central/national); mission hospital; charitable organization; church; pharmacy or medical supply store; given it by a friend or relative; and other (specify). The distribution of responses informed the categories used. Type of wheelchair The data collectors were asked to record the type of wheelchair (and the data collectors had been trained to recognize the types). The preformed categories were: basic indoor chair and rough terrain chair (long wheel base). If the user was not in the current chair and the chair was unavailable, this was noted. “Don’t know” was also possible. Purchaser of chair “Who paid for the chair?” (q106) had eight response categories, and based on the distribution, this was reduced to “free of charge/ no payment” and “payment,” so the variable became about whether payment was made. Sociodemographic Geography In Kenya, the counties were Kiambu, Machakos, Nairobi, Kajiado, Nakuru, Mombasa, Kisumu, Kisii, Eldoret, and Kericho. In the Philippines, the local government units were Mandaluyong , Quezon City, Taguig, Las Pinas, and Makati. An additional site of employment and residence of wheelchair users.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 133 Variable Description Age Age was noted by birth month and year (q1). Age did not appear to have a linear relationship with the outcomes and was believed to be more intuitive in categories, and was split at ages 18–34, 35–49, and ≥50. Education “What is the highest level of school you attended?” (q3) Response categories were: none/don’t know; primary; secondary, post- secondary, vocational; and college or university. Marital status Marital status (q4) had categories of married, divorced/ separated, widowed, and never married and never lived together. Work/ employment “What kind of work do you mainly do now?” (q509) Preformed response categories were: No work outside of home/unemployed (but not homemaker); homemaker/full-time parent; farming (agriculture, livestock); trading/selling; craftsman (e.g., carpentry, tailoring, masonry); office worker; student; laborer/casual worker; and other (specify). In Kenya, categories were collapsed to six upon review of the distribution of responses, while in the Philippines, as a vast majority of wheelchair users did not work, this was a dichotomous variable (did not work; work). Wealth quintile Household wealth was based on many questions posed in large household surveys. Items having more than 5% of the sample (water source, toilet type, main type of fuel source, main floor type, main wall type, number of rooms, and household assets such as electricity, radio, TV, mobile phone, refrigerator) were entered into a principal components analysis. The resulting variable was split into five equal groups or quintiles of wealth, representing a relative distribution of respondents on wealth, from poorest to richest.

page 134—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Appendix H: Kenya Research Consultation Agenda and Participants

August 26–27, 2015 Elementaita Country Lodge

Wednesday August 26, 2015 Facilitator 8:00 – 9:00am Registration Levis Onsase 9:00 – 9:20am Introduction Tom Marwa Charles Kanyi 9:20 – 9:30am Welcome NCPWD Nakuru County Tecla Kipserem 9:30 – 10:00am Opening Remarks Dr. Mildred Mudany Country Director, Jhpiego 10:00am – 10:30am Tea break 10:30 – 10:45am Insights from the Field: ACCESS Consortium James Keitany Benson Kiptum 10:45 – 11:15am Study Background & Methodology Brenda Onguti 11:15am – 12:00pm Study Population Charles Waka 12:00 – 12:45pm Findings Dr. Anthony Gichangi 12:45 – 1:00pm Guide to Group Discussions Tom Marwa 1:00 – 2:00pm Lunch break 2:00 – 3:30pm Facilitated Small Group Break-Out Sessions by Table Facilitators: four wheelchair Peter Mbugua Break-Out Sessions: sector stakeholders Justus Marete • Share several specific key findings and ask, for each: Does Gideon Muga it surprise you? How do you interpret this? How does this Donbosco K’ochumba inform your work? What would you recommend based on this finding—To advocates? To program planners? To the local government? To global funders? • Ask: Are there any other recommendations you’d like to see in a report to USAID? 3:30 – 4:00pm Tea Break 4:00 – 5:00pm Facilitated Small Group Break-Out Sessions Facilitators: 4 wheelchair Sector (continued) Stakeholders 6:00 – 9:00pm Team Meeting and Compiling the Group Discussions Jhpiego Team Thursday August 27, 2015 Facilitator 9:00 – 10:00am Plenary Session Facilitated Report-Out: Recommendations Tecla Kipserem Raphael Owako 10:00 – 10:30am Database Presentation James Keitany 10:30 – 11:30am Way Forward Discussion Peter Musakhi 11:30am – 12:00pm Concluding Remarks Dr. Anthony Gichangi 12:30pm Lunch and Departure

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 135 Stakeholders Attending Research Consultation Meeting, Kenya Composition of Name of Stakeholder Person Responsible for Acknowledgment Affiliation Stakeholders Motivation Charitable Trust Peter Mbuguah, Africa Regional Manager Produce and provide wheelchairs Nongovernmental Africa using the service model; train in organization & wheelchair service personnel professional Motivation Charitable Trust Charles Kanyi Produce and provide wheelchairs Nongovernmental Africa using the service model; train in organization & wheelchair service personnel professional Association of the Physically Director APDK Produce and provide wheelchairs Nongovernmental Disabled of Kenya and the Gideon Muga using the service model; train in organization & branch network service personnel wheelchair professional Association of the Physically Benson Kiptum National Programs Manager Produce and provide wheelchairs Nongovernmental Disabled of Kenya and the using the service model organization & branch network wheelchair professional Association of the Physically Chairman Fred Owako Produce and provide wheelchairs Nongovernmental Disabled of Kenya and the using the service model organization branch network Bethany Kids Justus M. Marete, Director for Africa Provide wheelchairs using the Nongovernmental service model organization CBM Kenya Victoria Bariu Fund Nongovernmental organization Latter Day Saints Charities Elder and Sister Shakespeare Fund and provide wheelchairs Nongovernmental LDSC LDS Charities Kenya using the service model organization LDS Charities Elder and Sister Ford Fund and provide wheelchairs Nongovernmental using the service model organization National Fund For The Annie.Mugambi Fund and provide wheelchairs Government- Parastatal Disabled Of Kenya using the “distribution model” National Fund For The Anthony Githaka Fund and provide wheelchairs Government- Parastatal Disabled Of Kenya using the “distribution model” National Council for Persons Tecla Kipserem Nakuru, Coordinator Fund, develop policy, Government- Parastatal with Disability of Kenya advocate, and on occasion provide wheelchairs using the “distribution model” Ministry of Health Head of Douglas Kotut Policy development National government & Rehabilitation Services wheelchair professional Ministry of Health Division Raphael Owako Policy development National government & of Family Health (disability wheelchair professional mainstreaming focal point) Ministry of Labor Social Peter Musakhi Policy development National government & Services and Security Asst. Director for Social Development wheelchair professional Ministry of Health National Peter Ongubo Policy development National government & Government wheelchair professional Chief PT and OT Kenya Bureau of Standards Anne Marimbet Country’s quality assurance check Government: quality assurance for products and services organizations page 136—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Composition of Name of Stakeholder Person Responsible for Acknowledgment Affiliation Stakeholders Kenya Medical Training Andrew Bii Training of professionals (pre- Academe & wheelchair College Head of Occupational Therapy service) professional KMTC Daniel Muli Kangutu Involved in preservice training of Academe & wheelchair Head of Department of Physiotherapy professionals professional Kenya Medical Training Donbosco K’ochumba Involved in training of Academe & wheelchair College Head of Orthopedic Technologist professional professional United Persons with Anderson Gitonga Advocacy Kenya’s Umbrella DPO Disabilities of Kenya (UDPK) KPO (Kenya Paraplegic Hedwick Waliaula Advocate and provide wheelchairs DPO Organisation) using the “distribution model” KPO (Kenya paraplegic Esther Osiel Advocate and provide wheelchairs DPO organisation) using the “distribution model” WCC Women Challenged to Jackline Wangui Advocacy DPO Challenge Cerebral Palsy Society of Peter M. Mukanda Representing users; Chair of CPSK Representing wheelchair users Kenya Northern Nomadic Disabled Harun Hassan Advocacy Wheelchair user & People’s Organization representing DPOs; also a board member of NCPWD

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 137 Appendix I. Philippines Research Consultation Agenda and Participants August 10–11, 2015 Manila Pavilion Hotel

Purpose: To reconfirm the strength of collaborative action towards equal rights for Filipinos with disabilities

Specific objectives: n Update on new developments that are relevant to people with disabilities in the Philippines n Celebrate achievements since March 2014 n Look for new opportunities for concerted action n Revitalize task teams to maintain momentum n Create or re-create task teams to take advantage of opportunities n Extract lessons learned about effective collective action n Re-energize the community n Recognize there is strength in numbers n Lay the foundations for a Philippine Society of Wheelchair Professionals

Time Sessions: Day 1—August 10, 2015 8:00 – 8:30am Registration 8:30 – 9:00am Opening ceremony 9:00am – 12:30pm Accelovate research study consultation 12:30 – 1:30pm Lunch 1:30 – 2:00pm Recap of March 2014 meeting 2:00 – 3:00pm What’s new, what’s changing? Update on new developments 3:00 – 3:15pm Tea and coffee break 3:15 – 4:45pm PhilHealth Standards and Guidelines 4:45 – 5:00pm Wrap up of the day Time Sessions: Day 2—August 11, 2015 8:30 – 9:00am Welcome, reflections on day 1, and recap 9:00 – 12:30pm Opportunities for collective action for the next two years 12:30 – 1:30pm Lunch 1:30 – 4:30pm Laying the foundation for a Philippine Society of Wheelchair Professionals 4:30 – 5:00pm Closing reflection and closing words 5:30 – 8:00pm Accelovate Dinner

page 138—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Accelovate Research Consultation Meeting, Manila Day 1: Morning Workshop Attendees: wheelchair sector stakeholders 9:00 – 9:05am Welcome and acknowledgments Dr. Bernabe Marinduque, Local Lead Investigator 9:05 – 10:30am Study background, methodology, and findings Elizabeth Hurwitz, Accelovate Program Officer and Wheelchair Portfolio Manager, and Tchai Xavier, Senior Technical Advisor 10:30am – 12:30pm Facilitated break-out sessions Facilitators: Tchai Xavier, Elizabeth Hurwitz, Dr. Bernabe Marinduque, Dr. Ferdiliza Garcia (IHPDS Study Team Leader), Tyrone Reden Sy (IHPDS Study Team Coordinator), Dr. Adovich Rivera (IHPDS Study Team Coordinator) Day 2: Recommendations and Dinner Attendees: wheelchair sector and government stakeholders 5:30 – 6:00pm Arrivals and hors d’oeuvres 6:00 – 6:05pm Welcome and acknowledgments Dr. Hilton Lam (Director, IHPDS) 6:05 – 6:10pm Study background and methodology Elizabeth Hurwitz 6:10 – 6:30pm Report-out: Recommendations and concluding remarks Tchai Xaiver and Dr. Ferdiliza Garcia 6:30 – 8:00pm Dinner

Stakeholders Attending Research Consultation Meeting, Philippines 8.10 8.11 Report- Organization 1-on-1 Last Name First Name Organization Name Presentation & Out/ Category Briefing Workshop Dinner Abelia Annabelle Institute for Health Policy and Development Research/Academe X Studies, University of the Philippines Manila Arceno Richard Bigay Buhay (Building Lives) Multipurpose NGO X X Cooperative Arellano Cheryl Davao Jubilee Foundation NGO X X Asence Amelyn Institute for Health Policy and Development Research X X Studies, University of the Philippines Manila Aspera Hazel-Gin Lorenzo Balay Mindanaw Foundation, Inc. NGO X X Aurelio Adonis Kasamaka Community Based Rehabilitation NGO X Azcuna-Colera Angelie Freedom Technology Wheelchair Foundation, Manufacturer X Inc. Barilla Junet Department of Social Welfare and Government X Development, Las Piñas Bautista Elder Lauro Latter Day Saints Charities Faith-based organization/ X X wheelchair donor Bautista Sister Latter Day Saints Charities Faith-based organization/ X wheelchair donor

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 139 8.10 8.11 Report- Organization 1-on-1 Last Name First Name Organization Name Presentation & Out/ Category Briefing Workshop Dinner Benigno Myles World Health Organization UN Agency X Beredo Eulalia Philippine Orthopedic Center Government hospital X X Bernabe Noemi Representative of Mayor Kid Pena, Makati Government X City Blas Alexa College of Allied Medical Professions, Academe X X University of the Philippines Manila Bolinas Amable Simon of Cyrene Children’s Rehabilitation & NGO X X Development Borja Hazel-Joy Leonard Cheshire Disability Philippines NGO X X Foundation, Inc. Bundoc Josephine Physicians for Peace NGO X X Burrola Yohali International Society of Wheelchair Professional X Professionals organization Cabazor Raquel Philippine School of Prosthetics and Academe X Orthotics Cabuyaban Rodelio Unaffiliated Other X Calsena Randy National Council on Disability Affairs Government X X Castro Jojo Tahanang Walang Hagdanan, Inc. Manufacturer X Cayco Christopher College of Allied Medical Professions, Academe X University of the Philippines Manila Cayetano Laarni Mayor, Taguig City Government X Cevallos-Garcia Joy Tahanang Walang Hagdanan, Inc. Manufacturer X Cheng Kent Jason Institute for Health Policy and Development Research X Studies, University of the Philippines Chua Paul Lester Institute for Health Policy and Development Research X X Studies, University of the Philippines Cruz Josephine Philippine Association of Social Workers Inc. Professional X (PASWI) Organization Cuevas Frances Prescilla Department of Health Government X X Dalit Lari Angelo Kasamaka Community Based Rehabilitation NGO X X De Gucena Jen Private Practice Provider X X De Guzman Arnold Philippine Disability Affairs Office, Quezon Government X City De Jesus Jesebell Institute for Health Policy and Development Research X X Studies, University of the Philippines Declaro-Deluira Precy Philippine Cerebral Palsy Incorporated NGO X X Dela Cruz Mojaira National Council on Disability Affairs Government X X Delgado Gilda Las Piñas City Provider X X Dulhuan Floyd Pedro Kiangan, Ifugao Special Education Center NGO X page 140—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 8.10 8.11 Report- Organization 1-on-1 Last Name First Name Organization Name Presentation & Out/ Category Briefing Workshop Dinner Dumapong Adeline FreedomTech, Babae KAA NGO X X Ebuenga Nancy United States Agency for International Government/ Donor X Development Ello Edward Handicap International International NGO X Flores Rogelio Kasamaka Community Based Rehabilitation NGO X Gabaldon Melani Local Government, Las Piñas Government X Garcia Carmen Exceed University of the East Ramon International NGO Magsaysay (The Philippine School of X Prosthetics and Orthotics) Garcia Ferdiliza Dandah College of Allied Medical Professions, Academe X X University of the Philippines Manila Guia Rebecca College of Allied Medical Professions, Academe X University of the Philippines Manila Haslem Elder Bruce Latter Day Saints Charities Faith-based organization/ X X wheelchair donor Herrera Agnes Philippine Disability Affairs Office, Taguig Government X X City Hurwitz Elizabeth Jhpiego Convener X X Jimenez- Daryl Joyce City Health Office, Davao Government X X Guevara Korngiebel Amy UCP Wheels International NGO X X Ku Grace Institute for Health Policy and Development Research X X Studies, University of the Philippines Manila Lam Hilton Institute for Health Policy and Development Research X Studies, University of the Philippines Manila Lamayra Mylene Mae Institute for Health Policy and Development Research X X Studies, University of the Philippines Manila Lamiell Margaret Management Sciences for Health International NGO X X Lastica Donnalou Freedom Technology Wheelchair Foundation, Manufacturer X X Inc. Laurente Annie Tahanang Walang Hagdanan, Inc. Manufacturer X X Lemmon Elder MG Latter Day Saints Charities Faith-based organization/ X wheelchair donor Libuna Lester Accessibility Assistant Other X Lomboy Renalyn Institute for Health Policy and Development Research X Studies, University of the Philippines Manila Maala Jocelyn PhilHealth Government X

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 141 8.10 8.11 Report- Organization 1-on-1 Last Name First Name Organization Name Presentation & Out/ Category Briefing Workshop Dinner Magbanua Jessica Leonard Cheshire Disability Philippines NGO X X Foundation, Inc. Malla Yuban Handicap International International NGO X Manlapaz Abner Life Haven, Inc. NGO X X Maravillas Anafe Las Pinas Federation of Persons with Government X X Disabilities Marinduque Bernabe Jhpiego Convener X X Marino Jaime National Council on Disability Affairs Government X Marquez Wennah Philippine Disability Affairs Office, Government X X Mandaluyong Mata Maureen Ava Alyansa ng May Kapansanang Pinoy (AKAP- NGO X Pinoy) Foundation, Inc. McGlade Barney Christian Blind Mission International NGO X X Mercado Royson Philippine Physical Therapy Association Professional X X Organization Misalucha Benson Latter Day Saints Charities Faith-based organization/ X wheelchair donor Monterola Jay Philippine Coordinating Center for Inclusive NGO X X Development Montes Jeff Private Practice Provider X X Morfero Ronald Las Piñas City Provider X Mortela Febbie Philippine Disability Affairs Office, Quezon Government X City Nachor Marites NORFIL Foundation NGO X Ortaliz Glenda PhilHealth Government X Pascual Kim April Operation Blessing NGO X X Penado Ismael Jhpiego Convener X Peñano Emiluisa City Government of Taguig Government X Penson Emmett Unaffiliated Other X X Quemado Krishna College of Allied Medical Professions, Academe X University of the Philippines Manila Ramiro Renald Peter Philippine Academy of Rehabilitation Professional X X Medicine/Cebu Doctors’ University organization Recto-Legaspi Anna Occupational Therapy Association Professional X organization Reyes Merla Rose PhilHealth Government X X Reyes-Zubiaga Carmen National Council on Disability Affairs Government X X

page 142—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study 8.10 8.11 Report- Organization 1-on-1 Last Name First Name Organization Name Presentation & Out/ Category Briefing Workshop Dinner Rey-Matas Reynaldo Freedom Technology Wheelchair Foundation, Manufacturer X Inc. Rivera Ado Institute for Health Policy and Development Academe X Studies, University of the Philippines Manila Rolando Lorena Jhpiego Convener X X Ruedas Christine (Tynee) Velez College Academe X X Santos Fernando PBF Prosthesis and Brace Center Manufacturer X Shiggins Ciara WHO UN Agency X Suan Analou Great Physician Rehabilitation NGO X X Supaz Helario Philippine Disability Affairs Office, Taguig Government X X City Sy Tyrone Reden Institute for Health Policy and Development Research X X Studies, University of the Philippines Manila Tan RJ Rotary Club of Cosmopolitan San Juan Civic Organization X Tetangco Lito GOD IS ABLE International Foundation, Inc. NGO X X Vicedo Marie Anne Latter Day Saints Charities Faith-based organization/ X X wheelchair donor Vriesendorp Sylvia Management Sciences for Health International NGO X X Xavier Cheryl Ann Jhpiego Convener X X Yap Reynaldo Rey Private Practice Provider X X Zayas Jerome IDEA Research X

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 143 Appendix J. Data Tables: Kenya

Descriptive Statistics Kenya Descriptive Table 1. Sociodemographic characteristics of respondents n Variable n % County Nairobi 123 29.3 Kiambu 122 29.1 Mombasa 57 13.6 Machakos 39 9.3 Nakuru 35 8.3 Other (Kisumu, Kajiado, Kisii, Eldoret, etc.) 44 10.5 Gender Male 251 59.8 Female 169 40.2 Age Mean (standard deviation) [median] 40.6 (15.6) [39.0] Categories: 18–34 160 39.2 35–49 132 32.4 ≥ 50 116 28.4 (Missing n=12) Educational attainment None 32 7.6 Primary 131 31.2 Secondary, post-secondary, vocational 162 38.6 College or university 95 22.6 Marital status Married/cohabitating 173 42.2 Never married/never cohabitating 201 49.0 Divorced/separated/widowed 36 8.8 (Missing n=10) Employment No work/unemployed 118 28.1 Trading/selling 78 18.6 Student 61 14.5 Craftsman 54 12.9 Office worker 33 7.9 Other (homemaker, farmer, laborer, etc.) 76 18.1

page 144—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Variable n % n Any employment No 118 28.1 Yes 302 71.9 Total 420 100

Kenya Descriptive Table 2. Wheelchair user characteristics Variable n % Condition leading to wheelchair use Spinal cord injury (paraplegic/quadriplegic) 121 28.8 Polio/post-polio 100 23.8 Congenital 55 13.1 Other (varied) 144 34.3 Location of obtaining wheelchair Charity/persons with disability organization 158 37.6 Government 72 17.1 Friend/relative bought 61 14.5 Other (pharmacy, hospital, church, etc.) 129 30.7 Buyer of wheelchair Wheelchair was no change/free 333 79.3 Myself 40 9.5 Other 47 11.2 Did not pay for wheelchair No 84 20.1 Yes 333 79.9 (Missing n=3) Wealth quintiles from Principal Component Analysis 1 poorest 84 20.1 2 84 20.1 3 85 20.3 4 83 19.8 5 wealthiest 83 19.8 (Missing n=1) Currently uses aids to walk No 272 64.8 Yes 148 35.2

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 145 Variable n % Wheelchair-related Type of wheelchair Basic indoor wheelchair 244 58.1 Rough terrain wheelchair 114 27.1 Wheelchair unavailable and don’t know 62 14.8 Cushion No 131 36.4 Yes 229 63.6 (Missing n=60) Total 420 100

Kenya Descriptive Table 3. Wheelchair services received—part 1 Variable Response n % Assessment on 2+ aspects (vs. 0–1) No 292 69.5 Yes 128 30.5 Total 420 100.0 Fitting (any of 5 items) No 279 66.4 Yes 141 33.6 Total 420 100.0 Train (any of 4 items) No 308 73.3 Yes 112 26.7 Total 420 100.0 Screening Item (q302) No 249 59.3 Yes 170 40.5 Don’t know 1 0.2 Total 420 100.0 Did the wheelchair provider assess the fit of the wheelchair while you No 244 58.1 propelled the wheelchair? (q303_e) Yes 176 41.9 Total 420 100.0 Did the wheelchair provider ask you or physically check you for skin No 321 76.4 problems, sensation, or pressure sores? (q303b) Yes 99 23.6 Total 420 100.0

page 146—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Variable Response n % Did the wheelchair provider check for unsafe pressure at your seat cushion No 361 86.0 surface (this would have required the assessor putting his/her hand under Yes 59 14.1 your buttocks)? (q303_h) Did the wheelchair provider’s assessment and/or fitting occur at your home? Total 420 100.0 (q304) No 391 93.1 Yes 29 6.9 Total 420 100.0 Assessment took 30+ minutes versus 0–29 min (q306) No 327 78.6 Yes 89 21.4 Total 416 100.0 Has a wheelchair provider EVER helped you choose the right wheelchair? No 248 59.1 They might have measured your body, checked the fit of the wheelchair, or Yes 172 41.0 made adjustments to the wheelchair. (q309) Total 420 100.0 Have you ever been instructed in taking care of your wheelchair, such as No 313 74.5 any of the following: keeping it clean, oiling moving parts, tightening Yes 107 25.5 spokes, and pumping tires? (q316) Have you ever been told where to seek help with wheelchair repairs that you Total 420 100.0 cannot manage yourself? (q319) No 359 85.5 Yes 61 14.5 Total 420 100.0 Has a wheelchair provider ever contacted you to ask how you are doing with No 358 85.2 a wheelchair since you received it? (q322) Yes 62 14.8 Total 420 100.0

Kenya Descriptive Table 4. Wheelchair services received—part 2 Variable Response n % Have you ever received Peer Group Training? This is a special training No 360 85.7 program by other wheelchair users on several topics, usually not at the time Yes 60 14.3 that you received the wheelchair for the first time. (q521) Total 420 100.0 Did the wheelchair provider measure or ask about your home environment No 313 74.5 (such as doorways and indoor spaces)? (q303_i) Yes 107 25.5 Total 420 100.0 Did the wheelchair provider ask you about how and where you would use No 323 76.9 your wheelchair? (q303_j) Yes 97 23.1 Total 420 100.0 Were you shown different types of wheelchairs or features to choose from? No 358 85.2 (q305) Yes 62 14.8 Total 420 100.0

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 147 Variable Response n % Did you have a choice from among a range of wheelchairs? (q308_a) No 359 85.5 Yes 61 14.5 Total 420 100.0 Did you and your wheelchair provider agree on a choice of wheelchair from No 343 81.7 the range of wheelchairs? (q308_b) Yes 77 18.3 Total 420 100.0 Did you receive the wheelchair that you chose in agreement with the No 337 80.2 wheelchair provider? (q308_c) Yes 83 19.8 Total 420 100.0 During any training you have received, was the following addressed or not addressed? How to get around in a wheelchair (q315_a) No 315 75.0 Yes 105 25.0 Total 420 100.0 How to get in and out of a wheelchair (q315_b) No 315 75.0 Yes 105 25.0 Total 420 100.0 Preventing pressure sores, such as by performing pressure relief (leaning or No 324 77.1 lifting often) (q315_c) Yes 96 22.9 Total 420 100.0

Kenya Descriptive Table 5. Prevalence of wheelchair use and reported health outcomes Variable Response n % Wheelchair use/independence Daily wheelchair use (q325) Not daily 71 17.0 1–7 hours daily 98 23.4 8+ hours 250 59.7 Total 419 100.0 (Missing n=1) Indoors: in last four weeks, percent of wheelchair users who reached a room No 165 47.3 other than sleeping room without assistance (q401) Yes 184 52.7 Total 349 100.0 (Missing n=71; excludes n=71 who had no other room to reach) Outdoors: in last four weeks, percent of wheelchair users who used No 305 74.6 wheelchair to go to an area outside home without assistance (q402) Yes 104 25.4 Total 409 100.0 (Missing n=11; excludes n=11 who had no other area to reach)

page 148—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Variable Response n % Performs 3 to 4 activities of daily living unassisted No 84 20.0 Yes 336 80.0 Total 420 100.0 Showering (q536a) Assisted 102 24.3 Independently 318 75.7 Total 420 100.0 Dressing (q536c) Assisted 76 18.1 Independently 344 81.9 Total 420 100.0 Eating (q536d) Assisted 19 4.5 Independently 401 95.5 Total 420 100.0 Toileting (q536e) Assisted 103 24.5 Independently 317 75.5 Total 420 100.0 Number of wheelchairs acquired in last 5 years (q10) Mean (SD) 1.9 (1.2) Median 2.0 (Missing n=3) Number of wheelchairs acquired in last 5 years (q10_a) (binary) One wheelchair 183 43.9 2+ wheelchairs 234 56.1 Total 417 100.0 (Missing n=3) Reported health Pressure sores in seating area with current wheelchair (any) None 309 81.5 Any 70 18.5 Total 379 100.0 (Missing n=41) Falls None 172 41.5 Falls, non-serious 154 37.1 Falls, serious 89 21.5 Total 415 100.0 (Missing n=5)

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 149 Kenya Bivariate Results Kenya Bivariate Table 1. Services and outcomes: daily wheelchair use Daily wheelchair use (3-level) (N=419) Not daily 1–7 hours 8+ hours Total Variable n % n % n % n p-value: 1–7 p-value: hours vs. not 8+hours vs daily not daily Assessment on 2+ aspects 0–1 assessment 51 17.5 69 23.7 171 58.8 291 ref ref aspects 2+ aspects 20 15.6 29 22.7 79 61.7 128 ns ns Fitting of wheelchair (one of 5 items) No 48 17.2 58 20.8 173 62.0 279 ref ref Yes 23 16.4 40 28.6 77 55.0 140 ns ns Training in wheelchair (any) No 58 18.8 71 23.1 179 58.1 308 ref ref Yes 13 11.7 27 24.3 71 64.0 111 0.056 0.052 Provider assessed fit of wheelchair while user propelled wheelchair (q303_e) No 40 16.4 62 25.4 142 58.2 244 ref ref Yes 31 17.7 36 20.6 108 61.7 175 ns ns Provider asked or physically checked user for skin problems, sensation, or pressure sores (q303_b) No 57 17.8 74 23.1 190 59.2 321 ref ref Yes 14 14.3 24 24.5 60 61.2 98 ns ns Provider checked for unsafe pressure at your seat cushion surface (q303_h) No 63 17.5 87 24.1 211 58.4 361 ref ref Yes 8 13.8 11 19.0 39 67.2 58 ns ns Provider’s assessment and/or fitting occurred at your home (q304) No 64 16.4 91 23.3 235 60.3 390 ref ref Yes 7 24.1 7 24.1 15 51.7 29 ns ns Assessment took 30+ minutes versus 0–29 min (q306) No 55 16.8 80 24.5 192 58.7 327 ref ref Yes 16 18.2 16 18.2 56 63.6 88 ns ns Provider EVER helped user choose the right wheelchair (q309) No 45 18.1 62 25.0 141 56.9 248 ref ref Yes 26 15.2 36 21.1 109 63.7 171 ns ns Ever instructed in taking care of wheelchair (q316) (ref: not instructed) No 61 19.5 68 21.7 184 58.8 313 ref ref Yes 10 9.4 30 28.3 66 62.3 106 < .001 0.022

page 150—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Daily wheelchair use (3-level) (N=419) Not daily 1–7 hours 8+ hours Total Variable n % n % n % n p-value: 1–7 p-value: hours vs. not 8+hours vs daily not daily User ever told where to seek help with wheelchair repairs (q319) No 64 17.9 83 23.2 211 58.9 358 ref ref Yes 7 11.5 15 24.6 39 63.9 61 ns ns Provider ever in contact to see how user was doing with the wheelchair (q322) (ref: not contacted) No 58 16.2 80 22.4 219 61.3 357 ref ref Yes 13 21.0 18 29.0 31 50.0 62 ns 0.088 Peer group training ever received (q521) No 58 16.2 84 23.4 217 60.4 359 ref ref Yes 13 21.7 14 23.3 33 55.0 60 ns ns

Note: Unadjusted p-values from regression models account for the clustering.

Kenya Bivariate Table 2. Wheelchair services and outcomes: unassisted indoor use, unassisted outdoor use Unassisted indoor use (N=349) Unassisted outdoor use (N=409) No Yes Total No Yes Total Variable n % n % n p n % n % n p Assessment on 2+ aspects 0–1 assessment 131 55.0 107 45.0 238 ref 215 76.0 68 24.0 283 ref aspects 2+ aspects 34 30.6 77 69.4 111 < .001 90 71.4 36 28.6 126 ns Fitting of wheelchair (one of 5 items) No 126 55.3 102 44.7 228 ref 217 80.1 54 19.9 271 ref Yes 39 32.2 82 67.8 121 0.004 88 63.8 50 36.2 138 <.001 Training in wheelchair selection (any) No 131 51.6 123 48.4 254 ref 230 76.4 71 23.6 301 ref Yes 34 35.8 61 64.2 95 0.001 75 69.4 33 30.6 108 0.036 Provider assessed fit of wheelchair while user propelled wheelchair (q303_e) No 113 56.5 87 43.5 200 ref 189 79.7 48 20.3 237 ref Yes 52 34.9 97 65.1 149 < .004 116 67.4 56 32.6 172 0.003 Provider asked or physically checked user for skin problems, sensation, or pressure sores (q303_b) No 132 50.8 128 49.2 260 ref 232 74.6 79 25.4 311 ref Yes 33 37.1 56 62.9 89 < .008 73 74.5 25 25.5 98 ns Provider checked for unsafe pressure at your seat cushion surface (q303_h) No 143 48.5 152 51.5 295 ref 262 74.9 88 25.1 350 ref Yes 22 40.7 32 59.3 54 ns 43 72.9 16 27.1 59 ns

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 151 Unassisted indoor use (N=349) Unassisted outdoor use (N=409) No Yes Total No Yes Total Variable n % n % n p n % n % n p Provider’s assessment and/or fitting occurred at your home (q304) No 153 47.5 169 52.5 322 ref 285 75.0 95 25.0 380 ref Yes 12 44.4 15 55.6 27 ns 20 69.0 9 31.0 29 ns Assessment took 30+ minutes versus 0–29 min (q306) No 129 48.1 139 51.9 268 ref 239 75.2 79 24.8 318 ref Yes 33 42.3 45 57.7 78 ns 62 71.3 25 28.7 87 ns Provider EVER helped user choose the right wheelchair (q309) No 105 52.8 94 47.2 199 ref 186 76.9 56 23.1 242 ref Yes 60 40.0 90 60.0 150 0.021 119 71.3 48 28.7 167 ns Ever instructed in taking care of wheelchair (q316) (ref: not instructed) No 124 48.8 130 51.2 254 ref 230 75.7 74 24.3 304 ref Yes 41 43.2 54 56.8 95 ns 75 71.4 30 28.6 105 ns User ever told where to seek help with wheelchair repairs (q319) No 147 49.5 150 50.5 297 ref 268 76.4 83 23.6 351 ref Yes 18 34.6 34 65.4 52 ns 37 63.8 21 36.2 58 0.059 Provider ever contacted user to see how user was doing with the wheelchair (q322) (ref: not contacted) No 144 48.0 156 52.0 300 ref 259 74.2 90 25.8 349 ref Yes 21 42.9 28 57.1 49 ns 46 76.7 14 23.3 60 ns Peer group training ever received (q521) No 148 49.2 153 50.8 301 ref 259 73.8 92 26.2 351 ref Yes 17 35.4 31 64.6 48 0.042 46 79.3 12 20.7 58 ns

Kenya Bivariate Table 3. Wheelchair services and outcomes: activities of daily living and multiple wheelchairs acquired Activities of daily living (high versus low) (N=420) Number of wheelchairs in last 5 years (2 versus 1) (q10_a) (N=417) No Yes Total One 2+ Total Variable n % n % n p n % n % n p Assessment on 2+ aspects 0–1 assessment aspects 63 21.6 229 78.4 292 ref 135 46.7 154 53.3 289 ref 2+ aspects 21 16.4 107 83.6 128 ns 48 37.5 80 62.5 128 ns Fitting of wheelchair (one of 5 items) No 62 22.2 217 77.8 279 ref 126 45.7 150 54.3 276 ref Yes 22 15.6 119 84.4 141 ns 57 40.4 84 59.6 141 ns

page 152—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Activities of daily living (high versus low) (N=420) Number of wheelchairs in last 5 years (2 versus 1) (q10_a) (N=417) No Yes Total One 2+ Total Variable n % n % n p n % n % n p Training in wheelchair selection (any) No 69 22.4 239 77.6 308 ref 138 45.1 168 54.9 306 ref Yes 15 13.4 97 86.6 112 0.016 45 40.5 66 59.5 111 ns Provider assessed fit of wheelchair while user propelled wheelchair (q303_e) No 61 25.0 183 75.0 244 ref 107 44.4 134 55.6 241 ref Yes 23 13.1 153 86.9 176 0.003 76 43.2 100 56.8 176 ns Provider asked or physically checked user for skin problems, sensation, or pressure sores (q303_b) No 70 21.8 251 78.2 321 ref 143 45.0 175 55.0 318 ref Yes 14 14.1 85 85.9 99 0.037 40 40.4 59 59.6 99 ns Provider checked for unsafe pressure at your seat cushion surface (q303_h) No 77 21.3 284 78.7 361 ref 162 45.3 196 54.7 358 ref Yes 7 11.9 52 88.1 59 ns 21 35.6 38 64.4 59 ns Provider’s assessment and/or fitting occurred at your home (q304) No 76 19.4 315 80.6 391 ref 168 43.3 220 56.7 388 ref Yes 8 27.6 21 72.4 29 ns 15 51.7 14 48.3 29 ns Assessment took 30+ minutes versus 0–29 min (q306) No 67 20.5 260 79.5 327 ref 149 46.0 175 54.0 324 ref Yes 16 18.0 73 82.0 89 ns 32 36.0 57 64.0 89 ns Provider EVER helped user choose the right wheelchair (q309) No 54 21.8 194 78.2 248 ref 118 47.8 129 52.2 247 ref Yes 30 17.4 142 82.6 172 ns 65 38.2 105 61.8 170 0.093 Ever instructed in taking care of wheelchair (q316) (ref: not instructed) No 69 22.0 244 78.0 313 ref 137 44.1 174 55.9 311 ref Yes 15 14.0 92 86.0 107 0.057 46 43.4 60 56.6 106 ns User ever told where to seek help with wheelchair repairs (q319) No 76 21.2 283 78.8 359 ref 165 46.3 191 53.7 356 ref Yes 8 13.1 53 86.9 61 ns 18 29.5 43 70.5 61 0.030 Provider ever contacted user to see how user was doing with the wheelchair (q322) (ref: not contacted) No 74 20.7 284 79.3 358 ref 161 45.4 194 54.6 355 ref Yes 10 16.1 52 83.9 62 ns 22 35.5 40 64.5 62 ns Peer group training ever received (q521) No 77 21.4 283 78.6 360 ref 156 43.6 202 56.4 358 ref Yes 7 11.7 53 88.3 60 ns 27 45.8 32 54.2 59 ns

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 153 Kenya Bivariate Table 4. Wheelchair services and outcomes: pressure sores and falls Pressure sores with current wheelchair— Falls (3-level) (N=415) any (N=379) No Yes Total None Non-serious Serious Total n % n % n p n % n % n % n p-value: p-value: Variable non- serious vs serious vs none none Assessment on 2+ aspects 0–1 assessment 217 81.3 50 18.7 267 ref 126 43.8 99 34.4 63 21.9 288 ref ref aspects 2+ aspects 92 82.1 20 17.9 112 ns 48 37.8 55 43.3 24 18.9 127 0.071 ns Fitting of wheelchair (one of 5 items) No 198 79.2 52 20.8 250 ref 116 42.2 104 37.8 55 20.0 275 ref ref Yes 111 86.0 18 14.0 129 0.018 58 41.4 50 35.7 32 22.9 140 ns ns Training in wheelchair selection (any) No 226 81.6 51 18.4 277 ref 134 43.9 108 35.4 63 20.7 305 ref ref Yes 83 81.4 19 18.6 102 ns 40 36.4 46 41.8 24 21.8 110 ns ns Provider assessed fit of wheelchair while user propelled wheelchair (q303_e) No 178 81.3 41 18.7 219 ref 108 44.8 80 33.2 53 22.0 241 ref ref Yes 131 81.9 29 18.1 160 ns 66 37.9 74 42.5 34 19.5 174 ns ns Provider asked or physically checked user for skin problems, sensation, or pressure sores (q303_b) No 235 80.8 56 19.2 291 ref 137 43.2 112 35.3 68 21.5 317 ref ref Yes 74 84.1 14 15.9 88 ns 37 37.8 42 42.9 19 19.4 98 ns ns Provider checked for unsafe pressure at your seat cushion surface (q303_h) No 265 81.3 61 18.7 326 ref 150 42.0 133 37.3 74 20.7 357 ref ref Yes 44 83.0 9 17.0 53 ns 24 41.4 21 36.2 13 22.4 58 ns ns Provider’s assessment and/or fitting occurred at your home (q304) No 289 81.9 64 18.1 353 ref 159 41.1 146 37.7 82 21.2 387 ref ref Yes 20 76.9 6 23.1 26 ns 15 53.6 8 28.6 5 17.9 28 ns ns Assessment took 30+ minutes versus 0–29 min (q306) No 238 81.0 56 19.0 294 ref 141 43.7 115 35.6 67 20.7 323 ref ref Yes 69 83.1 14 16.9 83 ns 29 33.0 39 44.3 20 22.7 88 0.041 ns Provider EVER helped user choose the right wheelchair (q309) No 183 82.4 39 17.6 222 ref 109 44.7 79 32.4 56 23.0 244 ref ref Yes 126 80.3 31 19.7 157 ns 65 38.0 75 43.9 31 18.1 171 0.003 ns Ever instructed in taking care of wheelchair (q316) (ref: not instructed) No 227 81.4 52 18.6 279 ref 139 45.1 106 34.4 63 20.5 308 ref ref Yes 82 82.0 18 18.0 100 ns 35 32.7 48 44.9 24 22.4 107 0.002 ns page 154—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Pressure sores with current wheelchair— Falls (3-level) (N=415) any (N=379) No Yes Total None Non-serious Serious Total n % n % n p n % n % n % n p-value: Variable non- p-value: serious vs serious vs none none User ever told where to seek help with wheelchair repairs (q319) No 266 82.6 56 17.4 322 ref 147 41.4 137 38.6 71 20.0 355 ref ref Yes 43 75.4 14 24.6 57 0.071 27 45.0 17 28.3 16 26.7 60 ns ns Provider ever contacted user to see how user was doing with the wheelchair (q322) (ref: not contacted) No 265 81.5 60 18.5 325 ref 149 42.2 128 36.3 76 21.5 353 ref ref Yes 44 81.5 10 18.5 54 ns 25 40.3 26 41.9 11 17.7 62 ns ns Peer group training ever received (q521) No 265 81.8 59 18.2 324 ref 152 42.8 131 36.9 72 20.3 355 ref ref Yes 44 80.0 11 20.0 55 ns 22 36.7 23 38.3 15 25.0 60 ns ns

Kenya Multivariable Models Kenya Multivariable Table 1. Daily wheelchair use and services received (N=392) Low (1 to7 hours) daily versus not daily (ref) ≥ 8 hours daily versus not daily (ref) 95% confidence 95% confidence Variable RRR P > z RRR P > z interval interval Received fitting (re: none) 1.16 0.807 0.36 3.72 0.90 0.832 0.34 2.38 Received training (ref: none) 0.83 0.797 0.21 3.32 0.88 0.870 0.19 4.00 User ever instructed in caring for wheelchair 2.69 0.069 0.93 7.81 3.29 0.044 1.03 10.48 (q316) (ref: not instructed) Provider ever in contact to see how user was 0.81 0.632 0.35 1.90 0.44 0.022 0.21 0.89 doing with wheelchair (q322) (ref: not contacted)

Notes: ref, reference category. ns, not significant. Relative risk ratio (RRR) is interpreted as an odds ratio. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post-secondary or vocational, or college or university); marital status (married/ cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 155 Kenya Multivariable Table 2. Unassisted indoor wheelchair use on wheelchair services received (N=392) Variable Odds ratio P > z 95% confidence interval Received assessment on 2+ aspects. (ref: 0–1) 3.71 0.000 1.52 3.88 Received fitting. (ref: did not receive) 0.46 0.644 0.49 3.12 Received training (ref: did not receive) 0.45 0.650 0.68 1.87 Provider assessed fit of wheelchair while user propelled wheelchair. (q303_e) 1.58 0.115 0.85 4.58 Provider asked or physically checked user for skin problems, sensation, or pressure sores. (q303_b) -0.85 0.398 0.40 1.44 Provider EVER helped user choose the right wheelchair. (q309) -0.90 0.368 0.38 1.43 Peer group training received. (rec: not received) 1.53 0.125 0.89 2.67

Notes: P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post- secondary or vocational, or college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

Kenya Multivariable Table 3. Unassisted outdoor wheelchair use on wheelchair services received (N=392) Variable Odds ratio P > z 95% confidence interval Received training. (ref: no training) 0.89 0.715 0.49 1.63 Provider assessed fit of wheelchair while user propelled wheelchair. (q303_e) 1.61 0.073 0.96 2.72 User ever told where to seek help with repairs. (q319) 2.75 0.001 1.50 5.03

Notes: ref, reference. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post-secondary or vocational, or college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

Kenya Multivariable Table 4. Activities of daily living and services received (N=392) Variable Odds ratio P > z 95% confidence interval Received training. (ref: no training) 2.95 0.014 1.25 6.98 Provider assessed fit of wheelchair while user propelled wheelchair. (q303_e) 2.82 0.000 1.63 4.89 Provider asked or physically checked user for skin problems, sensation, or 1.63 0.272 0.68 3.88 pressure sores. (q303_b) User ever instructed in caring for wheelchair (q316) (ref: not instructed) 0.51 0.156 0.20 1.29

Notes: ref, reference. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post-secondary or vocational, or college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years. page 156—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Kenya Multivariable Table 5. Multiple wheelchairs acquired in last five years and services received (n=392) Variable Odds ratio P > z 95% confidence interval Provider EVER helped user choose the right wheelchair. (q309) 1.44 0.426 0.59 3.55 User ever told where to seek help with repairs. (q319) 1.93 0.265 0.61 6.10

Notes: ref, reference. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post-secondary or vocational, or college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

Kenya Multivariable Table 6. Any pressure sores with current chair versus none and services received (N=357) Variable Odds ratio P > z 95% confidence interval Received training. (ref: no training) 0.57 0.010 0.37 0.88 User ever told where to seek help with repairs. (q319) 1.53 0.291 0.69 3.39

Notes: ref, reference. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post-secondary or vocational, or college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

Kenya Multivariable Table 7. Falls and services received (N=387) Non-serious falls versus none (ref) Serious falls versus none (ref) Variable RRR P > z 95% confidence interval RRR P > z 95% confidence interval Received assessment on 2+ 1.20 0.660 0.54 2.67 1.08 0.904 0.32 3.69 aspects. (ref: 0-1) Assessment took 30+ minutes. (ref 0–29 min) 1.56 0.204 0.79 3.10 1.66 0.312 0.62 4.44 (q306) Provider EVER helped user choose the right wheelchair. 0.88 0.569 0.57 1.36 0.73 0.460 0.31 1.69 (q309) User ever instructed in caring for wheelchair. (q316) (ref: 1.57 0.192 0.80 3.07 1.51 0.272 0.72 3.15 not instructed)

Notes: ref, reference category. Relative risk ratio (RRR) is interpreted as an odds ratio. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic; polio/post-polio; congenital; or other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, or other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, or unknown); county of residence; age categories (18–35; 36–49; or ≥ 50); educational attainment (none, primary, secondary, post-secondary or vocational, or college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, or widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, or other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years. This model also adjusts for daily wheelchair use.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 157 Appendix K: Data Tables: The Philippines

Descriptive Statistics Philippines Descriptive Table 1. Sociodemographic characteristics of respondents (N=432) Variable n % Local Government Unit Quezon City 153 35.4 Taguig 142 32.9 Tahanan 54 12.5 Las Piñas 43 10.0 Mandaluyong 23 5.3 Makati 17 3.9 Gender Male 217 50.2 Female 215 49.8 Age Mean (standard deviation) [median] 56.7 (18.2) [56.0] Categories: 18–29 54 12.5 30–49 106 24.6 50+ 271 62.9 (Missing n=1) Education None/don’t know 13 3.0 Primary 140 32.4 Secondary, post-secondary, vocational 159 36.8 College or university 120 27.8 Marital status Married/cohabitating 214 49.5 Never married/never cohabitating 109 25.2 Divorced/separated/widowed 109 25.2 Employment No work/unemployed 265 61.3 Trading/selling 34 7.9 Student 10 2.3 Craftsman 30 6.9 Office worker 18 4.2 Other (homemaker, farmer, laborer, business) 75 17.4 Any employment No 263 60.9 Yes 169 39.1 Total 432 100.0 page 158—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Philippines Descriptive Table 2. Wheelchair user characteristics Variable n % Condition leading to wheelchair use (dominant) Spinal cord injury: paraplegic 38 8.8 Spinal cord injury: quadriplegic 5 1.2 Polio or post-polio 83 19.2 Amputation 36 8.3 Congenital disability 31 7.2 Old age, arthritis, bone problems 64 14.8 Stroke/nerve/clot 114 26.4 Other/unknown 20 4.6 Accident 31 7.2 Infection 5 1.2 Surgery/medical error/injection 2 0.5 Muscle problems/weakness 3 0.7 Total 432 100.0 Condition leading to wheelchair use (collapsed categories) Stroke/nerve/clot 114 26.4 Polio/post-polio 83 19.2 Old age, arthritis, bone problems 64 14.8 SPI 43 10.0 Congenital 31 7.2 Other 97 22.5 Total 432 100.0 Currently uses other mobility aids No 248 57.4 Yes 184 42.6 Total 432 100.0 Wheelchair-related Type of wheelchair Basic indoor wheelchair 395 91.4 Rough terrain wheelchair 17 3.9 Wheelchair unavailable and don’t know 20 4.6 Total 432 100.0 Cushion No 308 71.3 Yes 119 27.6 Don’t know/not present 5 1.2 Total 432 100.0

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 159 Variable n % Cushion Type Comfort (flat or slight shape) 97 81.5 Pressure relief (deep shape or fluid) 15 12.6 Other 7 5.9 Total 119 100.0 Location of obtaining wheelchair Government unit 204 48.3 Hospital 2 0.5 Charitable organization/organization for persons with disabilities 89 21.1 Pharmacy, medical supply, or other shop 38 9.0 Church 9 2.1 Given by friend, relative, or acquaintance 58 13.7 Other 20 4.7 Don’t know 2 0.5 Total 422 100.0 Buyer of wheelchair Donated/free 325 77.6 Myself 43 10.3 Other 51 12.2 Total 419 100.0

page 160—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Philippines Descriptive Table 3. Wheelchair services received with current wheelchair (N=432) Variable n % Assessment on 2+ aspects (versus 0–1) 134 31.0 Fitting (any of 5 items) 114 26.4 Training (any of 4 items) 74 17.1 Provider measured your body. (q303_a) 176 40.7 Provider asked you or physically checked you for skin problems, sensation, or pressure sores. (q303b) 64 14.8 Provider let you express your needs related to the wheelchair. (q303_c) 127 29.4 Provider listened to your needs and used information expressed. (q303_d) 127 29.4 Provider assessed fit of the wheelchair while user propelled the wheelchair. (q303_e) 169 39.1 Provider adjusted or modified wheelchair according to user needs. (q303_g) 82 19.0 Provider checked for unsafe pressure at seat cushion surface. (q303_h) 45.0 10.4 Provider measured or asked about the home environment (such as doorways and indoor spaces). (q303_i) 79 18.3 Provider asked about how and where you would use your wheelchair. (q303_j) 149 34.5 [Screener] “When you received your current or most recent wheelchair, did a wheelchair provider help you choose the right wheelchair? 184 42.6 They might have measured your body, checked the fit of the wheelchair, or made adjustments to the wheelchair.” (q302) Provider’s assessment and/or fitting occurred at user’s home. (q304) 99 22.9 User was shown different types of wheelchairs or features from which to choose. (q305) 56 13.0 Assessment took 30+ minutes versus 0–29 minutes (q306). 58 13.5 Had a choice from among a range of wheelchairs. (q308_a) 57 13.2 User and provider agreed on choice of wheelchair from the range of wheelchairs. (q308_b) 53 12.3 User received wheelchair chosen in agreement with the wheelchair provider. (q308_c) 53 12.3

Philippines Descriptive Table 4. Wheelchair services ever received (N=432) Variable n % Provider ever helped user choose the right wheelchair. They might have measured your body, checked the fit of the 171 39.6 wheelchair, or made adjustments to the wheelchair. (q309) Ever received any training related to the use of a wheelchair 74 17.1 Ever instructed in caring for wheelchair, such as keeping it clean, oiling moving parts, tightening spokes, and pumping tires 114 26.4 (q316) Ever told where to seek help with wheelchair repairs (q319) 76 17.6 Wheelchair provider ever was in contact to ask how user was doing with a wheelchair since receiving it. (q322) 85 19.7 Received Peer Group Training. This is a special training program from other wheelchair users on several topics, usually not 55 12.7 at the time that you received the wheelchair for the first time. (q521) “During any training you have received, ‘how to get around in a wheelchair’ was addressed.” 64 14.8 ‘How to get in and out of a wheelchair’ was addressed. 64 14.8 ‘Preventing pressure sores, such as by performing pressure relief (leaning or lifting often)’ was addressed. 51 11.8 Ever trained in how to get around in a wheelchair, how to get in and out of a wheelchair, OR preventing pressure sores 70 16.2

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 161 Philippines Descriptive Table 5. Prevalence of wheelchair use and use and falls (N=432) Variable n % Daily wheelchair use (3-level) (q325) Not daily 180 41.7 1 to 7 hours daily 70 16.2 8+ hours daily 182 42.1 Indoors: in last four weeks, did you use a wheelchair to reach a room other than sleeping room without assistance? (q401) (excludes users without other rooms to reach) No 233 63.1 Yes 136 36.9 (Missing n=63) Outdoors: in last four weeks, did you use a wheelchair to reach an area outside your home without assistance? (q402) (excludes users without other areas to reach) No 287 66.7 Yes 143 33.3 (Missing n=2) Performs 3 to 4 activities of daily living unassisted) 115 26.7 (Missing n=2) Showering (q536a) independently 271 63.0 Dressing (q536c) independently 284 66.1 Eating (q536d) independently 366 85.1 Toileting (q536e) independently 290 67.4 Number of wheelchairs acquired in last 5 years (q10) One wheelchair 280 66.0 2+ wheelchairs 144 34.0 (Missing n=8) Falls (q532) None 282.0 66.0 Falls, non-serious 92.0 21.6 Falls, serious 53.0 12.4 (Missing n=5)

page 162—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Philippines Bivariate Results Philippines Bivariate Table 1. Services and outcomes: daily wheelchair use Daily wheelchair use (3-level) (N=432) Variable Not daily 1–7 hours daily 8+ hours daily Total n % n % n % n p-value: p-value: high low versus versus no daily no daily use use Assessment on 2+ aspects 0–1 assessment aspects 144 48.3 54 18.1 100 33.6 298 ref ref 2+ aspects 36 26.9 16 11.9 82 61.2 134 0.000 0.037 Fitting No 160 50.3 57 17.9 101 31.8 318 ref ref Yes 20 17.5 13 11.4 81 71.1 114 0.000 0.006 Training No 169 47.2 66 18.4 123 34.4 358 ref ref Yes 11 14.9 4 5.4 59 79.7 74 0.000 0.000 Provider assessed fit while user propelled wheelchair. (q303_e) No 134 51.0 45 17.1 84 31.9 263 ref ref Yes 46 27.2 25 14.8 98 58.0 169 0.000 ns Provider checked for skin problems. (q303_b) No 164 44.6 57 15.5 147 39.9 368 ref ref Yes 16 25.0 13 20.3 35 54.7 64 0.022 ns Provider checked for unsafe pressure at your seat. (q303_h) No 161 41.6 62 16.0 164 42.4 387 ref ref Yes 19 42.2 8 17.8 18 40.0 45 ns ns Provider’s assessment and/or fitting occurred at the home. (q304) No 145 43.5 55 16.5 133 39.9 333 ref ref Yes 35 35.4 15 15.2 49 49.5 99 ns ns Assessment took 30+ minutes. (q306) No 165 44.1 66 17.6 143 38.2 374 ref ref Yes 15 25.9 4 6.9 39 67.2 58 0.018 0.034 Provider ever helped choose the right wheelchair. (q309) No 141 54.0 45 17.2 75 28.7 261 ref ref Yes 39 22.8 25 14.6 107 62.6 171 0.000 0.052

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 163 Daily wheelchair use (3-level) (N=432) Variable Not daily 1–7 hours daily 8+ hours daily Total n % n % n % n p-value: p-value: high low versus versus no daily no daily use use Instructions ever received in taking care of wheelchair (q316) No 149 46.9 60 18.9 109 34.3 318 ref ref Yes 31 27.2 10 8.8 73 64.0 114 0.006 0.001 Ever told where to seek help for wheelchair repairs (q319) No 169 47.5 66 18.5 121 34.0 356 ref ref Yes 11 14.5 4 5.3 61 80.3 76 ns 0.022 Provider ever contacted user to follow up. (q322) No 152 43.8 59 17.0 136 39.2 347 ref ref Yes 28 32.9 11 12.9 46 54.1 85 ns ns Peer group training ever received. (q521) No 174 46.2 65 17.2 138 36.6 377 ref ref Yes 6 10.9 5 9.1 44 80.0 55 0.000 0.043 Multiple wheelchairs in last 5 years (2+ versus 1) (q10_a) One wheelchair 144 51.4 43 15.4 93 33.20 280 ref ref 2+ wheelchairs 35 24.3 27 18.8 82 56.90 144 0.004 0.003

Note: Unadjusted p-values from the regression models account for the clustering.

page 164—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Philippines Bivariate Table 2. Wheelchair services and outcomes: unassisted indoor use, outdoor use and activities of daily living Indoor unassisted use (q401c) Outdoor unassisted use (q402c) Activities of daily living— (n=369) (n=430) high unassisted performance (3–4 versus 0–2) (N=430) Variable No Yes Total No Yes Total No Yes Total n % n % n p n % n % n p n % n % n p Assessment on 2+ aspects 0–1 174 65.7 91 34.3 265 ref 219 74.0 77 26.0 296 ref 95 32.1 201 67.9 296 ref assessment aspects 2+ 59 56.7 45 43.3 104 ns 68 50.7 66 49.3 134 0.000 20 14.9 114 85.1 134 0.002 aspects Fitting No 190 67.4 92 32.6 282 ref 240 75.9 76 24.1 316 ref 100 31.6 216 68.4 316 ref Yes 43 49.4 44 50.6 87 0.051 47 41.2 67 58.8 114 0.000 15 13.2 99 86.8 114 0.019 Training No 206 65.2 110 34.8 316 ref 257 72.2 99 27.8 356 ref 106 29.8 250 70.2 356 ref Yes 27 50.9 26 49.1 53 ns 30 40.5 44 59.5 74 0.000 9 12.2 65 87.8 74 0.043 Provider assessed fit while user propelled wheelchair (q303_e) No 159 69.1 71 30.9 230 ref 206 78.9 55 21.1 261 ref 92 35.1 170 64.9 262 ref Yes 74 53.2 65 46.8 139 0.075 81 47.9 88 52.1 169 0.000 23 13.7 145 86.3 168 0.002 Provider checked for skin problems (q303_b) No 206 64.0 116 36.0 322 ref 255 69.7 111 30.3 366 ref 103 28.1 263 71.9 366 ref Yes 27 57.4 20 42.6 47 ns 32 50.0 32 50.0 64 0.028 12 18.8 52 81.3 64 ns Provider checked for unsafe pressure at your seat (q303_h) No 215 65.2 115 34.8 330 ref 262 68.1 123 31.9 385 ref 106 27.5 279 72.5 385 ref Yes 18 46.2 21 53.8 39 0.030 25 55.6 20 44.4 45 ns 9 20.0 36 80.0 45 ns Provider’s assessment and/or fitting occurred at the home (q304) No 180 62.9 106 37.1 286 ref 223 67.4 108 32.6 331 ref 89 26.8 243 73.2 332 ref Yes 53 63.9 30 36.1 83 ns 64 64.6 35 35.4 99 0.078 26 26.5 72 73.5 98 ns Assessment took 30+ minutes (q306) No 216 65.7 113 34.3 329 ref 262 70.4 110 29.6 372 ref 109 29.3 263 70.7 372 ref Yes 17 42.5 23 57.5 40 0.031 25 43.1 33 56.9 58 0.001 6 10.3 52 89.7 58 0.003 Provider ever helped choose right wheelchair (q309) No 166 70.3 70 29.7 236 ref 200 76.9 60 23.1 260 ref 86 33.2 173 66.8 259 ref Yes 67 50.4 66 49.6 133 0.071 87 51.2 83 48.8 170 0.001 29 17.0 142 83.0 171 0.071 Instructions ever received in taking care of wheelchair (q316) No 186 67.1 91 32.9 277 ref 236 74.7 80 25.3 316 ref 101 32.0 215 68.0 316 ref Yes 47 51.1 45 48.9 92 0.060 51 44.7 63 55.3 114 0.000 14 12.3 100 87.7 114 0.003

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 165 Indoor unassisted use (q401c) Outdoor unassisted use (q402c) Activities of daily living— (n=369) (n=430) high unassisted performance (3–4 versus 0–2) (N=430) Variable No Yes Total No Yes Total No Yes Total n % n % n p n % n % n p n % n % n p Ever told where to seek help for wheelchair repairs (q319) No 202 66.2 103 33.8 305 ref 260 73.4 94 26.6 354 ref 110 31.1 244 68.9 354 ref Yes 31 48.4 33 51.6 64 0.027 27 35.5 49 64.5 76 0.000 5 6.6 71 93.4 76 0.021 Provider ever contacted user to follow up (q322) No 192 63.8 109 36.2 301 ref 235 68.1 110 31.9 345 ref 95 27.5 250 72.5 345 ref Yes 41 60.3 27 39.7 68 ns 52 61.2 33 38.8 85 ns 20 23.5 65 76.5 85 ns Peer group training ever received (q521) No 212 64.4 117 35.6 329 ref 265 70.7 110 29.3 375 ref 110 29.3 265 70.7 375 ref Yes 21 52.5 19 47.5 40 0.072 22 40.0 33 60.0 55 0.000 5 9.1 50 90.9 55 0.003

Note: Unadjusted p-values from regression models account for the clustering. ns, not significant.

Philippines Bivariate Table 3. Multiple wheelchair acquisition and falls Multiple (vs. one) wheelchairs acquired in Serious, Non-serious Falls and No Falls in Current Chair (N=427) last 5 years (N=424) Variable No Yes Total None Falls, non- Falls, serious Total serious n % n % n p n % n % n % n p non- p serious serious versus versus none none Assessment on 2+ aspects 0–1 assessment 211 71.3 85 28.7 296 ref 213 72.7 51 17.4 29 9.9 293 ref ref aspects 2+ aspects 69 53.9 59 46.1 128 0.002 69 51.5 41 30.6 24 17.9 134 0.002 0.003 Fitting No 223 70.3 94 29.7 317 ref 235 75.1 48 15.3 30 9.6 313 ref ref Yes 57 53.3 50 46.7 107 0.017 47 41.2 44 38.6 23 20.2 114 0.000 0.008 Training No 238 67.4 115 32.6 353 ref 261 73.9 60 17.0 32 9.1 353 ref ref Yes 42 59.2 29 40.8 71 ns 21 28.4 32 43.2 21 28.4 74 0.000 0.000 Provider assessed fit while user propelled wheelchair (q303_e) No 182 69.7 79 30.3 261 ref 194 74.6 39 15.0 27 10.4 260 ref ref Yes 98 60.1 65 39.9 163 0.025 88 52.7 53 31.7 26 15.6 167 0.000 ns

page 166—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Multiple (vs. one) wheelchairs acquired in Serious, Non-serious Falls and No Falls in Current Chair (N=427) last 5 years (N=424) Variable No Yes Total No Yes Total Total n % n % n p n % n % n % n p non- p serious serious versus versus none none Provider checked for skin problems (q303_b) No 253 69.9 109 30.1 362 ref 248 68.3 79 21.8 36 9.9 363 ref ref Yes 27 43.5 35 56.5 62 0.001 34 53.1 13 20.3 17 26.6 64 ns 0.000 Provider checked for unsafe pressure at your seat (q303_h) No 260 68.6 119 31.4 379 ref 254 66.5 81 21.2 47 12.3 382 ref ref Yes 20 44.4 25 55.6 45 0.001 28 62.2 11 24.4 6 13.3 45 ns ns Provider’s assessment and/or fitting occurred at the home (q304) No 232 70.9 95 29.1 327 ref 221 67.2 66 20.1 42 12.8 329 ref ref Yes 48 49.5 49 50.5 97 0.001 61 62.2 26 26.5 11 11.2 98 ns ns Assessment took 30+ minutes (q306) No 247 66.6 124 33.4 371 ref 259 70.2 73 19.8 37 10.0 369 ref ref Yes 33 62.3 20 37.7 53 ns 23 39.7 19 32.8 16 27.6 58 0.006 0.000 Provider ever helped choose right wheelchair (q309) No 191 73.5 69 26.5 260 ref 200 78.1 35 13.7 21 8.2 256 ref ref Yes 89 54.3 75 45.7 164 0.011 82 48.0 57 33.3 32 18.7 171 0.002 0.007 Instructions ever received in taking care of wheelchair (q316) No 218 69.4 96 30.6 314 ref 233 74.4 49 15.7 31 9.9 313 ref ref Yes 62 56.4 48 43.6 110 0.064 49 43.0 43 37.7 22 19.3 114 0.000 0.000 Ever told where to seek help for wheelchair repairs (q319) No 243 69.0 109 31.0 352 ref 263 74.9 55 15.7 33 9.4 351 ref ref Yes 37 51.4 35 48.6 72 ns 19 25.0 37 48.7 20 26.3 76 0.000 0.000 Provider ever contacted user to follow up (q322) No 239 69.9 103 30.1 342 ref 230 67.1 76 22.2 37 10.8 343 ref ref Yes 41 50.0 41 50.0 82 <.001 52 61.9 16 19.0 16 19.0 84 ns 0.024 Peer group training ever received (q521) No 248 66.8 123 33.2 371 ref 266 71.5 67 18.0 39 10.5 372 ref ref Yes 32 60.4 21 39.6 53 ns 16 29.1 25 45.5 14 25.5 55 0.000 0.000

Note: Unadjusted p-values from the regression models account for the clustering.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 167 Philippines Multivariable Models Philippines Multivariable Table 1. Daily wheelchair use and services received (N=405) Low (1 to 7 hours) versus not daily use High ( ≥ 8 hours) versus not daily use Variable 95% confidence 95% confidence RRR P > z RRR P > z interval interval Received assessment on 2+ aspects (ref: 0–1) 0.82 0.722 0.28 2.41 1.15 0.710 0.55 2.42 Received fitting (ref: none) 1.22 0.691 0.46 3.25 1.26 0.534 0.61 2.63 Received training (ref: none) 0.80 0.751 0.21 3.08 4.00 0.000 2.28 7.04 Provider assessed fit of wheelchair while user 1.24 0.656 0.49 3.15 0.96 0.894 0.56 1.67 propelled wheelchair (q303_e) Provider asked or physically checked user for skin 2.11 0.191 0.69 6.44 0.48 0.041 0.23 0.97 problems, sensation, or pressure sores (q303_b) Assessment took 30+ minutes versus 0–29 0.66 0.706 0.08 5.60 0.52 0.058 0.27 1.02 minutes (q306) Provider EVER helped user choose the right 2.10 0.243 0.60 7.35 2.76 0.030 1.11 6.91 wheelchair (q309) User ever instructed in caring for wheelchair (q316) 0.37 0.005 0.18 0.74 0.45 0.025 0.22 0.91 (ref: not instructed) User ever told where to seek help with repairs 0.63 0.663 0.08 4.96 1.03 0.962 0.33 3.20 (q319) Peer group training received (ref: not received) 1.49 0.688 0.21 10.60 2.08 0.200 0.68 6.35

Notes: ref, reference category. ns, not significant. Relative risk ratio (RRR) is interpreted as an odds ratio. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic, polio/post-polio, congenital, other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, unknown); county of residence; age categories (18–35, 36–49, ≥ 50); educational attainment (none, primary, secondary, post-secondary, or vocational; college or university); marital status (married/ cohabitating, never married/never cohabitating, divorced, separated, widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, and other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

page 168—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Philippines Multivariable Table 2. Indoor and outdoor unassisted wheelchair use and services received—logistic regression (N=353) Indoor unassisted use (N=353) Outdoor unassisted use (N=403) Variable Odds P > z 95% confidence Odds P > z 95% confidence ratio interval ratio interval Received assessment on 2+ aspects. (ref: 0–1) 0.63 0.248 0.29 1.38 0.98 0.966 0.44 2.19 Received fitting. (ref: none) 0.87 0.774 0.35 2.20 1.01 0.988 0.48 2.11 Received training. (ref: none) 1.00 1.000 0.46 2.17 1.05 0.924 0.41 2.67 Provider assessed fit of wheelchair while user propelled 1.48 0.213 0.80 2.74 2.43 0.001 1.45 4.07 wheelchair. (q303_e) Provider checked for unsafe pressure at your seat cushion 2.02 0.088 0.90 4.55 surface. (q303_h) Assessment took 30+ minutes versus 0–29 minutes. 1.47 0.365 0.64 3.39 0.98 0.978 0.30 3.22 (q306) Provider EVER helped user choose the right wheelchair. 2.36 0.078 0.91 6.14 1.43 0.398 0.62 3.29 (q309) User ever instructed in caring for wheelchair. (q316) (ref: 0.95 0.877 0.49 1.82 not instructed) User ever told where to seek help with repairs. (q319) 1.36 0.231 0.82 2.27 1.33 0.360 0.72 2.46 Peer group training received. (ref: not received) 0.65 0.441 0.22 1.93 1.17 0.762 0.43 3.18 User ever instructed in caring for wheelchair. (q316) (ref: 1.06 0.895 0.47 2.36 not instructed) Assessment and/or fitting occurred at home. (q304) 0.63 0.021 0.43 0.93 Provider asked or physically checked user for skin problems, 0.89 0.853 0.25 3.19 sensation, or pressure sores. (q303_b)

Notes: ref, reference category. ns, not significant. Relative risk ratio (RRR) is interpreted as an odds ratio. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic, polio/post-polio, congenital, other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, unknown); county of residence; age categories (18–35, 36–49, ≥ 50); educational attainment (none, primary, secondary, post-secondary, or vocational; college or university); marital status (married/ cohabitating, never married/never cohabitating, divorced, separated, widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, and other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 169 Philippines Multivariable Table 3. Activities of daily living and multiple wheelchair acquisition and services received (N=403) Activities of daily living (ADL): high Multiple wheelchairs (2+ versus 0–1) versus low Category Odds 95% confidence Odds 95% confidence P > z P > z ratio interval ratio interval Received assessment on 2+ aspects. (ref: 0–1) 1.44 0.243 0.78 2.64 1.16 0.698 0.56 2.40 Received fitting. (ref: none) 0.45 0.046 0.20 0.99 1.10 0.768 0.58 2.10 Received training. (ref: none) 0.74 0.510 0.30 1.82 Provider assessed fit of wheelchair while user propelled 2.84 0.000 1.79 4.51 0.70 0.183 0.41 1.18 wheelchair. (q303_e) Assessment took 30+ minutes versus 0–29 minutes. (q306) 1.09 0.914 0.23 5.05 Provider EVER helped user choose the right wheelchair. 1.23 0.702 0.43 3.53 0.66 0.325 0.28 1.52 (q309) User ever instructed in caring for wheelchair. (q316) (ref: not 0.98 0.963 0.39 2.46 0.89 0.707 0.50 1.61 instructed) User ever told where to seek help with repairs. (q319) 1.90 0.351 0.49 7.38 Peer group training received. (ref: not received) 1.22 0.709 0.43 3.42 Provider’s assessment and/or fitting occurred at your home. 2.13 0.033 1.06 4.27 Provider asked or physically checked user for skin problems, 1.80 0.145 0.82 3.98 sensation, or pressure sores. (q303_b) Provider ever in contact to see how user was doing with 1.87 0.007 1.19 2.93 wheelchair. (q322) (ref: not contacted) Provider checked for unsafe pressure at your seat cushion 0.67 0.467 0.23 1.97 surface. (q303_h)

Notes: ref, reference category. ns, not significant. Relative risk ratio (RRR) is interpreted as an odds ratio. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic, polio/post-polio, congenital, other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, unknown); county of residence; age categories (18–35, 36–49, ≥ 50); educational attainment (none, primary, secondary, post-secondary, or vocational; college or university); marital status (married/ cohabitating, never married/never cohabitating, divorced, separated, widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, and other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years. Model of ADLs also adjusts for daily wheelchair use.

page 170—Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study Philippines Table 12. Falls and services received (N=416) Non-serious falls versus no falls Serious falls versus no falls Category RRR P > z 95% confidence interval RRR P > z 95% confidence interval Received assessment on 2+ 0.79 0.665 0.27 2.33 0.49 0.142 0.19 1.27 aspects. (ref: 0–1) Received fitting. (ref: none) 0.82 0.518 0.45 1.50 0.73 0.783 0.08 6.79 Received training. (ref: none) 1.66 0.182 0.79 3.50 2.54 0.002 1.43 4.53 Provider assessed fit of wheelchair while user propelled wheelchair. 0.60 0.260 0.25 1.45 0.20 0.087 0.03 1.26 (q303_e) Provider asked or physically checked user for skin problems, 0.30 0.105 0.07 1.29 1.59 0.530 0.38 6.68 sensation, or pressure sores. (q303_b) Assessment took 30+ minutes 0.86 0.802 0.26 2.84 2.42 0.005 1.30 4.51 versus 0–29 minutes. (q306) Provider EVER helped user choose 2.20 0.243 0.59 8.23 2.40 0.211 0.61 9.43 the right wheelchair. (q309) User ever instructed in caring for wheelchair. (q316) (ref: not 1.12 0.782 0.49 2.55 0.56 0.307 0.18 1.70 instructed) User ever told where to seek help 3.48 0.050 1.00 12.11 6.13 0.001 2.04 18.39 with repairs. (q319) Provider ever in contact to see how user was doing with 0.43 0.058 0.18 1.03 1.65 0.205 0.76 3.60 wheelchair. (q322) (ref: not contacted) Peer group training received. (rec: 2.25 0.123 0.80 6.27 2.14 0.019 1.13 4.04 not received)

Notes: ref, reference category. ns, not significant. Relative risk ratio (RRR) is interpreted as an odds ratio. P > z is the p-value. The model was adjusted for user and wheelchair acquisition characteristics: condition that led to wheelchair use (spinal cord injury as paraplegic/quadriplegic, polio/post-polio, congenital, other); entity from which current wheelchair was obtained (government, mission hospital, charity, pharmacy or store, friend/family, other); wealth (5 quintiles); whether current wheelchair was paid for or free/no charge; current wheelchair type (basic indoor wheelchair, rough terrain wheelchair, unknown); county of residence; age categories (18–35, 36–49, ≥ 50); educational attainment (none, primary, secondary, post-secondary, or vocational; college or university); marital status (married/cohabitating, never married/never cohabitating, divorced, separated, widowed); and work/employment categories (no work/unemployed, trading/selling, student, craftsman, office worker, and other). The data were adjusted for multiple versus single wheelchairs acquired in the past five years. Model of falls also adjusts for daily wheelchair use.

Wheelchair Use and Services in Kenya and Philippines: A Cross-Sectional Study—page 171