UNIVERSITY OF BOTSWANA FACULTY OF HEALTH SCIENCE DEPARTMENT OF NURSING CHALLENGES FACED BY HIV-INFECTED ADOLESCENTS IN RURAL AREAS OF BOTSWANA NAME: MATLHODI GOSA BASUHI ID NO.200106336 PROPOSAL IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR MASTE COMMUNITY HEALTH NURSING SUPERVISOR: DR T.R. MONAU TABLE OF CONTENTS Acknowledgement --------------------------------------------------------------------------------------1 Operational Definitions --------------------------------------------------------------------------------2 Abstract ---------------------------------------------------------------------------------------------------4 List of Abbreviations -----------------------------------------------------------------------------------6 CHAPTER 1: INTRODUCTION AND PROBLEM STATEMENT-----------------------------7 1.1 Introduction ------------------------------------------------------------------------------------------7 1.2 General Background --------------------------------------------------------------------------------7 1.3 Statement of the problem---------------------------------------------------------------------------9 1.4 Justification -----------------------------------------------------------------------------------------13 1.5 Aim and Objectives of the study-----------------------------------------------------------------14 1.6 Conceptual Definitions----------------------------------------------------------------------------15 1.8 Summary---------------------------------------------------------------------------------------------16 CHAPTER 2: LITERATURE REVIEW ------------------------------------------------------------17 2.1 Introduction------------------------------------------------------------------------------------------17 2.2 History of HIV and AIDS -------------------------------------------------------------------------17 2.3 Update on HIV and AIDS -------------------------------------------------------------------------18 2.4 Adolescents and HIV ------------------------------------------------------------------------------21 2.5 Challenges faced by HIV infected adolescents ------------------------------------------------22 2.6 Summary -------------------------------------------------------------------------------------------- 33 CHAPTER 3: RESEARCH METHODOLOGY AND THEORETICAL FRAMEWORK --35 3.1 Introduction -----------------------------------------------------------------------------------------35 3.2 Research design ------------------------------------------------------------------------------------35 3.3 Grounded theory -----------------------------------------------------------------------------------39 3.4 Study setting ----------------------------------------------------------------------------------------42 3.5 Study population -----------------------------------------------------------------------------------42 3.6 Sample -----------------------------------------------------------------------------------------------42 3.7 Ethical considerations -----------------------------------------------------------------------------45 3.8 Instrument for data collection --------------------------------------------------------------------46 3.9 Pilot testing ------------------------------------------------------------------------------------------46 3.10 Data procedures -----------------------------------------------------------------------------------47 3.11 Trustworthiness -----------------------------------------------------------------------------------50 3.12 Summary-------------------------------------------------------------------------------------------52 References -----------------------------------------------------------------------------------------------53 List of tables Table 1: HIV prevalence among adolescents in Botswana ---------------------------------------10 Appendices Appendix 1: Demographic data survey -------------------------------------------------------------61 Appendix 2: Group discussion guide ----------------------------------------------------------------63 Appendix 3: Request for permission to conduct the study ---------------------------------------65 Appendix 4: Consent form for parents of participating adolescents ----------------------------67 Appendix 4a: Certificate of consent for parents of participating adolescents -----------------79 Appendix 5: Consent form for participating adolescents -----------------------------------------83 Appendix 5a: Certificate of consent for participating adolescents ------------------------------95 Appendix 6: Assent form for participating adolescents -------------------------------------------99 Appendix 6a: Certificate of assent for participating adolescents -------------------------------110 ACKNOWLEDGEMENTS Firstly, I will like to thank the Almighty God for giving me the opportunity to complete this proposal. I will secondly like to thank my amazing supervisor, Dr T.R. Monau, for guiding me through this process and through all the challenges I met in my studies. Your guidance and advices have been most fruitful. Regardless of how much you had in your plate, you always had time for me. You were such a great inspiration. Thank you. I will also like to thank my dear husband for the continuous support and encouragement. My sincere also goes to my children for their understanding and continuous support. You sacrificed your time to support each other when I was not there to support you. You were beyond my understanding. Dr. Dithole and Mrs B. Ratshaa, thank you for your tremendous contribution. You dedicated your time and your resources in making sure that I complete this proposal. Your continuous support and encouragement meant a lot to me. To you all that I have not mentioned, but having contributed to the completion of this proposal and my study, may the grace of God be with you for all the days of your lives. OPERATIONAL DEFINITION This section here, presents the definition of the key terms in the study. These terms are defined within the context of this research proposal. Adolescents Individuals in the 10-19 year age group (UNAIDS, 2013; UNICEF, 2013). Even though adolescents are the main focus of this study, the terms youth, children and paediatric are used as some of the literature used includes them. When referring to caregivers and their children, the term your child refer to your adolescent as it is more HIV Human Immuno-deficiency Virus which causes Acquired Immune-Deficiency Syndrome (AIDS) HIV-infected adolescents Individuals in the 10-19 year age group infected with HIV. This includes those behaviourally and perinatally infected (Littler & Oberg, 2005; UNAIDS, 2013). Peri-natally HIV-infected adolescents Adolescents who acquired HIV from their mothers as embryos, foetuses or babies during pregnancy or child birth. Perinatal HIV transmission and vertical HIV transmission are used interchangeably to mean the same thing in this research (Hazra, Siberry & Mofenson, 2010; UNAIDS, 2013). Behaviourally HIV-infected adolescents Adolescents who acquired HIV infection due to their behaviours like through sex or injection drug use. In this study, horizontal transmission and behavioural transmission of HIV are used interchangeably. These two concepts have the same meaning (Hazra, Siberry & Mofenson, 2010). Rural area The less developed side of the country compared to town or cities. Sparsely populated lands lying outside urban areas (Plessis, Beshiri, Bollman & Clemenson, 2002). Challenges Negatively stimulating or stressing situations (George, 1995). ABSTRACT Background: Sub- HIV incidence, with about 71.4% of HIV infection worldwide in 2013. Botswana has the second highest infection rate in the world and the epidemic has left a large number of children and adolescents orphaned. Adolescents living with HIV are an emerging group in the HIV and AIDS pandemic. A number of HIV-infected adolescents continue to increase, and this is largely a reflection of successful treatment of peri-natally infected children, infections during early adolescence and the expansion of access to Anti Retroviral Therapy (ART) worldwide. Experience from the developed world suggests that providing care and treatment for adolescents is challenging and requires looking into not only biomedical aspects, but also psychosocial needs and challenges. Although numerous studies have investigated HIV infected adolescents in developed and developing countries, majority of work in this area is focused on the biomedical aspects and adherence and data on challenges faced by HIV-infected adolescents is limited. Few studies have examined challenges for HIV-infected adolescents in Botswana, but to my knowledge, no study has focused on those in rural areas of Botswana. Objectives: The objectives of this study will be 1) to identify challenges faced by HIV-infected adolescents in rural areas, 2) to describe the challenges faced by HIV-infected adolescents, 3) to find out how HIV-infected adolescents cope or deal with these challenges. Methods: The study will utilize a qualitative design guided by Grounded Theory approach to investigate the challenges faced by HIV-infected adolescents in rural areas of Botswana. Grounded theory will assist in inductive construction of a theory about the challenges faced by HIV-infected adolescents in rural areas of Botswana. The goal of the qualitative research is to document and interpret as fully as possible, what is being studied The aim of grounded theory is to generate or discover a theory from data that is systematically obtained. Grounded