Access to Health Care for Persons with Disabilities in rural Madwaleni, Eastern Cape, South Africa RICHARD VERGUNST Dissertation presented for the degree of Doctor of Philosophy in the Faculty of Arts and Social Sciences at Stellenbosch University Supervisor: Prof Leslie Swartz March 2016 Stellenbosch University https://scholar.sun.ac.za DECLARATION By submitting this dissertation electronically, I declare that the entirety of the work contained therein is my own, original work, that I am the sole author thereof, that reproduction and publication thereof by Stellenbosch University will not infringe any third party rights and that I have not previously in its entirety or in part submitted it for obtaining any other qualification. March 2016 Date Copyright © 2016 Stellenbosch University All rights reserved i Stellenbosch University https://scholar.sun.ac.za ABSTRACT Global research suggests that persons with disabilities face barriers when accessing health care services. Yet, information regarding the nature of these barriers, especially in low- income and middle-income countries is sparse. Rural contexts in these countries may present greater barriers than urban contexts, but little is known about access issues in such contexts. There is a paucity of research in South Africa looking at “triple vulnerability” – poverty, disability and rurality. The current study provides a local case study of these issues with the aim of informing future interventions to improve the lives of persons with disabilities. This study explores the challenges faced by persons with disabilities in day-to-day living and in accessing health care in Madwaleni, a poor rural isiXhosa-speaking community in South Africa. The study includes a quantitative survey with interviews with 773 participants in 527 households. Comparisons between persons with disabilities and persons with no disabilities were explored. Results suggest that persons with disabilities in Madwaleni generally experience more problems in terms of daily living as well as health issues (including access to health care) compared to persons with no disabilities. In terms of access to health care there were primarily three types of barriers – physical barriers, attitudinal barriers and communication barriers – for persons with disabilities in Madwaleni. Persons without disabilities living in households with persons with disabilities did not, however, experience more barriers to health care than did those in households without disabilities. Implications and recommendations for the future are discussed in order to make some concrete and practical solutions in the area of disability in Madwaleni. ii Stellenbosch University https://scholar.sun.ac.za OPSOMMING Wêreldwye navorsing dui daarop dat persone met gestremdhede hindernisse in die gesig staar wanneer hulle poog om toegang tot gesondheidsorgdienste te verkry. Desnieteenstaande is inligting rakende die aard van hierdie hindernisse, veral in lae- en middel-inkomste lande, skaars. Landelike omgewings in hierdie lande mag moontlik groter hindernisse daarstel as stedelike omgewings, maar daar is min kennis oor toegangskwessies in sulke omgewings. Daar is ‘n tekort aan navorsing wat die “driedubbelde kwesbaarheid” – armoede, gestremdheid en landelikheid – in Suid-Afrika ondersoek. Die meegaande studie verskaf ‘n plaaslike gevallestudie rakende hierdie kwessies, wat ten doel het om toekomstige intervensies toe te lig ten einde die lewens van persone met gestremdhede te verbeter. Hierdie studie verken die uitdagings wat persone met gestremdhede in hul daaglikse bestaan en in die verkryging van toegang tot gesondheidsorg in Madwaleni, ‘n arm, landelike isiXhosa-sprekende gemeenskap in Suid-Afrika, in die gesig staar. Die studie sluit ‘n kwantitatiewe opname met onderhoude met 773 deelnemers in 527 huishoudings in. Vergelykings tussen persone met gestremdhede en persone sonder gestremdhede is verken. Resultate dui daarop dat persone met gestremdhede in Madwaleni oor die algemeen meer probleme in hul daaglikse bestaan sowel as met gesondheidsorgkwessies (insluitend toegang tot gesondheidsorg) ervaar as persone sonder gestremdhede. Wat toegang tot gesondheidsorg aanbetref, was daar vir persone met gestremdhede in Madwaleni hoofsaaklik drie tipes hindernisse – fisiese hindernisse, houdingshindernisse en kommunikasie hindernisse. Persone sonder gestremdhede, wat in huishoudings met persone met gestremdhede leef, het egter nie meer hindernisse tot gesondheidsorg beleef as huishoudings sonder gestremdhede. iii Stellenbosch University https://scholar.sun.ac.za Implikasies en aanbevelings vir die toekoms word bespreek ten einde konkrete en praktiese oplossings op die gebied van gestremdheid in Madwaleni te bied. iv Stellenbosch University https://scholar.sun.ac.za ACKNOWLEDGEMENTS I would like to acknowledge and thank the following for having a part in the process of my dissertation: My supervisor, Professor Leslie Swartz – thank you so much for your enthusiastic energy, guidance, inspiration, motivation and continuous support The fieldworkers in Madwaleni who conducted the interviews The research participants in Madwaleni who took part in the study To Pamela Silwana, Khaya Bawuti and Vivienne Duma for their work in the field The entire international Equitable research team, especially the South African team, in Margie Schneider, Gubela Mji, Stine Hellum Braathen, Janis Kritzinger, and Surona Visagie Lasse Hem and Yoesrie Toefy for their statistical support To Cecile Joubert for administrative support To Marleen van Wyk for library support To Anneliese De Wet and Divan Rall for translation work To Nicolaas Vergunst, Sumaya Mall, Hasheem Mannan, Gubela Mji and Margie Schneider for proof reading To Jacqueline Gamble for editing support My dear wife, Jo and children, Emma and Luke for their patience My parents and family To all of you who know you took part in this dissertation but have not been named v Stellenbosch University https://scholar.sun.ac.za TABLE OF CONTENTS Declaration i Abstract ii Opsomming iii Acknowledgements v Table of Contents vi List of Tables vii List of Figures x List of Abbreviations xi List of Appendices xii Chapter One: Introduction 1 Chapter Two: Understanding Disability 9 Chapter Three: Access to Health Care 36 Chapter Four: Rural Health 56 Chapter Five: Methodology 64 Chapter Six: Results 86 Chapter Seven: Discussion 134 References 157 Appendices 188 vi Stellenbosch University https://scholar.sun.ac.za LIST OF TABLES Table 1- Differences between the Medical Model and the Social Model 15 Table 2- Different Kinds of Barriers to Accessing Health Care 42 Table 3- Differences between Two Basic Paradigms in Social Science Research 66 Table 4- Differences between Quantitative and Qualitative Research 69 Table 5- Age and Gender Distribution 88 Table 6- Sample Variables 89 Table 7- Disability Status 90 Table 8- Disability by Age Distribution 91 Table 9- Disability by Gender Distribution 91 Table 10- Disability by Age and Gender Distribution 92 Table 11- Disability by Marital Status 92 Table 12- Level of Education (aged 18+) 93 Table 13- Employment Status (aged 18-60) 94 Table 14- Problems Seeing 95 Table 15- Problems Hearing 96 Table 16- Problems Walking 96 Table 17- Problems Remembering 97 Table 18- Problems with Self Care 97 Table 19- Problems Communicating 98 Table 20- Daily Activity of Shopping by Disability Status 99 Table 21- Daily Activities of Preparing Food and Household Chores by Disability Status 100 Table 22- Daily Activities of Taking Care of Personal Objects and Others by Disability Status 100 Table 23- Daily Activities of Social Relationships by Disability Status 101 vii Stellenbosch University https://scholar.sun.ac.za Table 24- Daily Activities of Getting an Education and Finding Employment by Disability Status 102 Table 25- Daily Activities of Financial Management by Disability Status 103 Table 26- Taking Part in Day-to-Day Activities by Disability Status 103 Table 27- Mode of Transport Used by Disability Status 104 Table 28- Availability and Accessibility of Transport by Disability Status 105 Table 29- Natural Environment Barriers by Disability Status 105 Table 30- Surrounding Barriers by Disability Status 106 Table 31- Information Barriers by Disability Status 107 Table 32- Prejudice and Discrimination Barriers by Disability Status 108 Table 33- Positive Attitudes from Others by Disability Status 108 Table 34- Support from Others by Disability Status 109 Table 35- Accessibility of Buildings, Transport and Information by Disability Status 109 Table 36- Ease of Terrain by Disability Status 110 Table 37- Perceived Favourable Environmental Conditions by Disability Status 110 Table 38- Perceived Service Provisions by Disability Status 111 Table 39- General Physical Health Rating 112 Table 40- General Mental Health Rating 112 Table 41- Mean Score for GHQ-12 by Disability Status 113 Table 42- Problems of Availability of Health Care Services by Disability Status 116 Table 43- Barriers to Health Care 118 Table 44- Transport Barriers to Health Centres by Disability Status 120 Table 45- Affordability of Transport Costs by Disability Status 121 Table 46- Dangerousness of Journey by Disability Status 121 Table 47- Knowledge of Where to Go in Terms of Health Centres by Disability viii Stellenbosch University https://scholar.sun.ac.za Status 122 Table 48- Accommodation Issues at Health Centres by Disability Status. 122 Table 49- Drugs and Equipment Provision at Health Centres by Disability Status 123 Table 50- Perceptions