Barriers and Facilitators to Colposcopy Attendance Following an Abnormal Pap Smear: Patient and Provider Perspectives By Shanaaz Dawood n w dwdsha006 o T e Submitted to the University of Cape Town p a In partial fulfilment of the requirements for the degree C MPH (Mas ters in Public Health) f o y t iFaculty of Health Sciences s r e University of Cape Town v i n U Date of submission: 20 October 2014 Supervisors: Associate Professor Jennifer Moodley, Director Cancer Research Initiative, Faculty of Health Sciences, University of Cape Town Associate Professor Jane Harries, Director Women’s Health Research Unit, School of Public Health and Family Medicine, University of Cape Town n w The copyright of this thesis vests in the author. No o T quotation from it or information derived from it is to be published without full acknowledgeement of the source. p The thesis is to be used for private study or non- a C commercial research purposes only. f o Published by the Universit y of Cape Town (UCT) in terms y t of the non-exclusive license granted to UCT by the author. i s r e v i n U DECLARATION I, Shanaaz Dawood, hereby declare that the work on which this dissertation/thesis, is based is my original work (except where acknowledgements indicate otherwise) and that neither the whole work nor any part of it has been, is being, or is to submitted to another degree in this way or any other university. I empower the university to reproduce for the purpose of the research either the whole or any portion of the contents in any manner whatsoever Signature:………………………… Date: …………………………… II Acknowledgements My deepest thanks go to my supervisor A/Prof Jennifer Moodley for her insight, academic support and valuable contributions to all aspects of the research project. Your dedication is greatly appreciated. To my co-supervisor A/Prof Jane Harries, thank you for all your guidance with the analysis and interpretation of the data, as well as valuable contributions to all aspects of the research project. I would like to thank Sunae Jacobson for translating the client consent form and the interview guide from English into Afrikaans. I would like to acknowledge City Health of Cape Town and the management of Groote Schuur Hospital for allowing access to the facilities. I would also like to acknowledge the staff at the colposcopy clinic for their co- operation and assistance with assigning potential clients for the research, and providing contact numbers of patients. To the clients and staff who participated in the research, thank you for devoting your valuable time. To my parents, thank you for the continuous support and encouragement during the duration of this research. To my husband, I am truly grateful for all your support, kindness and understanding that you have shown during this challenging time. III Thesis Abstract Cervical cancer is a public health problem particularly in developing countries where incidence of cervical cancer remains high, either due to a lack of screening or poorly organised screening programmes. Cytology based cervical screening is only beneficial if women with abnormal Papanicolaou (Pap) smears are appropriately investigated. Colposcopy attendance following an abnormal Pap smear is a major problem in South Africa. The aim of this study was to explore barriers and facilitators to colposcopy attendance following an abnormal Pap smear result. A qualitative study was conducted at a public sector tertiary hospital colposcopy service and two primary health care clinics in Cape Town, SouthAfrica. Data collection included 32 semi-structured interviews: 12 face-to-face interviews with colposcopy clinic attendees, 12 telephonic interviews with colposcopy clinic non- attendees and 8 face-to-face interviews with health care providers. Client interviews explored barriers and facilitators to colposcopy attendance; knowledge and experiences of Pap smears, cervical cancer and the colposcopy procedure; scheduling of colposcopy appointments; provider communication; reasons for non-attendance; and community support and beliefs. Provider interviews explored barriers and facilitators to colposcopy attendance from a provider’s perspective, the colposcopy referral process, and provider challenges in the provision of Pap smear or colposcopy services. Resultsfrom this study highlighted thatthe main barriers to colposcopy attendance were: poor levels of knowledge of the importance of a Pap smear and the colposcopy procedure; a lack of awareness of cervical cancer as a disease; a fear of cancer; the asymptomatic nature of the disease; and transport costs. Health system factors that impacted negatively on colposcopy clinic attendance included: the inadequate feedback of Pap smear results–clients were not informed of Pap smear results or colposcopy appointmentsand therefore did not attend; a disjointed system of colposcopy scheduling; and staff shortages whichresulted in less time for client tracking. Factors which promoted colposcopy attendance included experiencing symptoms; a family history of cancer due to the experience IV with death; colposcopy services situated closer to clients; and social support received from family members. Addressing these barriers requires promoting client knowledge with educational materials and improving provider communication with clients. In addition, establishing colposcopy services closer to clients and standardising the systemof colposcopy scheduling can improve colposcopy adherence. This thesis is presented in 3 parts Part A: The proposal for a qualitative study exploring barriers and facilitators to colposcopy attendance following an abnormal Pap smear result. The proposal was submitted to the University of Cape Town Health Sciences Human Research Ethics Committee for ethics approval. Part B: Includes a review of the literature evaluating cervical screening programmes, and barriers and facilitators to colposcopy attendance, in developed and developing countries. Gaps in the literature include qualitative research exploring reasons for poor colposcopy attendance in South Africa. Little is also known about women’s knowledge and experiences of an abnormal Pap smear result, cervical cancer and the colposcopy procedure in a South African setting. Part C –Includes a journal article, prepared to meet requirements of the BMC Public Health journal. The article reports on barriers and facilitators to colposcopy attendance following an abnormal Pap smear result from client and provider perspectives. Referencing Style: The BMC Public Health referencing style has been used throughout the dissertation (Appendix 11) V Table of Contents Declaration……………………………………………………………………...ii Acknowledgements………………………………………………………….....iii Thesis Abstract………………………………………………………………....iv Table of Contents……………………………………………………………....vi List of Abbreviations…………………………………………………………...ix PART A: PROJECT PROPOSAL……………………………...1 1. Introduction……………………………………………………………2 2. Justification………………………………………………………….....6 3. Aim of the Study…………………………………………………….....6 3.1Objectives…………………………………………………………..6 4. Methodology………………………………………………………......7 4.1Study Design…………………………………………………….....7 4.2Population and Sample…………………………………………......8 4.3Sampling and Recruitment………………………………………....8 4.4Data Collection……………………………………………………..9 4.5Data Management……………………………………………….....10 4.6Data Analysis……………………………………………………....11 4.7Ethical Considerations……………………………………………..11 4.8Limitations………………………………………………………....12 4.9Generalisability…………………………………………………….13 4.10 Reflexivity………………………………………………………..13 5. Data Logistics………………………………………………………….13 5.1Research Team……………………………………………………..13 6. Write up and Dissemination…………………………………………....13 References……………………………………………………………...14 PART B: LITERATURE REVIEW………………………….....1 1. Introduction…………………………………………………………....2 2. Burden of Disease……………………………………………………...3 3. Prevention of Cervical Cancer………………………………………....5 3.1Natural History of Cervical Cancer………………………………..5 3.2Primary Prevention………………………………………………...7 3.3SecondaryPrevention……………………………………………...8 4. Follow-up of Abnormal Pap Smears: Barriers and Facilitators…….....10 4.1 Individual Patient Factors………………………………………....10 4.2Psychosocial Factors……………………………………………....12 4.3Health SystemFactors…………………………………………......14 4.4Community Factors……………………………………………......16 5. Conclusion…………………………………………………………......16 VI References…………………………………………………………......17 PART C: JOURNAL MANUSCRIPT……………………….....1 Abstract………………………………………………………………….....2 Background………………………………………………………………...4 Methods……………………………………………………………………6 Study Design………………………………………………………….....6 Study Setting………………………………………………………….....6 Organisation of Pap Smear and Colposcopy Services ………………….6 Study Population………………………………………………………...7 Data Collection…………………………………………………………..8 Ethical Considerations……………………………………………….......9 Data Analysis………………………………………………….................9 Results……………………………………………………………………...9 Knowledge Levels……………………………………………………...10 Motivations for Pap smearsand Colposcopy………………….…….....13 Fear and Anxiety…………………………………………………….....13 Personal Factors………………………………………………………...15 Health System Factors……………………………………………….....16 Social Support……………………………………………………..........18 Discussion……………………………………………………………….....18 Recommendations………………………………………………………….24 Conclusions………………………………………………………………...26 Competing Interests………………………………………………………..26 Author’s Contributions………………………………………………….....27 Acknowledgements………………………………………………………..27 References………………………………………………………………....28 PART D: APPENDICES………………………………………...1 Addendum 1: Interview Guide for Clients……………………………........2 Addendum 2: Client Information Form………………………………….....4 Addendum 3: Interview Guide for Head of Colposcopy Clinic…………....5 Addendum 4: Interview Guide for Health Care Providers at Colposcopy Clinic………………………………………..6 Addendum 5: Interview Guide for Health Care Providers at Clinics……………………………………………………..8 Addendum 6: Interview Guide for Administration Assistant at Cytology Lab……………………………………………......10 Addendum 7: Data Tracking Form………………………………………...11 Addendum 8: Client Consent Form………………………………………..12 Addendum 9: Provider Consent Form……………………………………..15 VII Addendum 10: Ethics Approval Letter…………………………………....17 Addendum 11: Annual Ethics Progress Report…………………………....18 Addendum 12: Instructions for Authors BMC Public Health…………......19 List of Figures Figure 1: Part B……………………………………………………………....7 VIII List of Abbreviations AIDS - acquired immune deficiency syndrome AGUS - atypical glandular cells of undetermined significance ASC-H - atypical squamous cells, cannot exclude high grade squamous intraepithelial lesions ASCUS - atypical squamous cells of undetermined significance ASIL - atypical squamous intraepithelial lesions ASIR - age standardised incidence rate ASMR - age standardised mortality rate CHIP - Cervical Health Implementation Project CHW - community health worker GSH - Groote Schuur Hospital HIV - human immunodeficiency virus HPV - human papillomavirus HSIL - high grade squamous intraepithelial lesions LSIL - low grade squamous intraepithelial lesions LTFU - loss to follow-up Pap - Papanicolaou SES - socioeconomic status STI - sexually transmitted infection UK - United Kingdom US - United States VIA - visual inspection with acetic acid IX
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