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PDFS/ED517971.Pdf The University of Notre Dame Australia ResearchOnline@ND Theses 2017 Development, implementation, evaluation and validation of a haemophilia nurses’ education program in South Africa Jill Smith The University of Notre Dame Australia Follow this and additional works at: https://researchonline.nd.edu.au/theses Part of the Nursing Commons COMMONWEALTH OF AUSTRALIA Copyright Regulations 1969 WARNING The material in this communication may be subject to copyright under the Act. Any further copying or communication of this material by you may be the subject of copyright protection under the Act. Do not remove this notice. Publication Details Smith, J. (2017). Development, implementation, evaluation and validation of a haemophilia nurses’ education program in South Africa (Doctor of Philosophy (College of Nursing)). University of Notre Dame Australia. https://researchonline.nd.edu.au/theses/184 This dissertation/thesis is brought to you by ResearchOnline@ND. It has been accepted for inclusion in Theses by an authorized administrator of ResearchOnline@ND. For more information, please contact [email protected]. Development , implementation, evaluation and validation of a haemophilia nurses’ education program in South Africa. Jill Smith ID 20103001 A thesis submitted to fulfil the requirements for the Degree of Doctor of Philosophy School of Nursing and Midwifery The University of Notre Dame Australia 2017 Table of Contents Table of Contents ................................................................................................................................................. 2 List of Tables ........................................................................................................................................................ 7 List of Figures ....................................................................................................................................................... 8 List of Appendices ................................................................................................................................................ 9 List of Acronyms & Explanations ..................................................................................................................... 10 Abstract ............................................................................................................................................................... 12 Declaration of Authorship ................................................................................................................................. 14 Acknowledgements ............................................................................................................................................. 15 Chapter 1 Background to the Study ................................................................................................................. 16 1.1 Introduction ......................................................................................................................................... 16 1.2 Haemophilia ........................................................................................................................................ 16 1.2.1 Treatment of haemophilia. .................................................................................................... 18 1.2.2 Education of the nurse to manage the care of the PWH and family. .................................... 21 1.2.3 Management of PWH in SA: The education imperative....................................................... 22 1.2.4 Resources to treat haemophilia. ............................................................................................ 24 1.2.5 Development of the Haemophilia Nurse Education Program in SA. .................................... 24 1.3 Aims and significance of the study ..................................................................................................... 25 1.4 Study research questions ..................................................................................................................... 26 1.5 Chapter summary ................................................................................................................................ 27 Chapter 2 Literature Review: Haemophilia .................................................................................................... 29 2.1 Introduction ......................................................................................................................................... 29 2.2 Haemophilia defined ........................................................................................................................... 29 2.3 History of haemophilia ........................................................................................................................ 31 2.3.1 History of the management and treatment of haemophilia. .................................................. 32 2.4 Inheritance patterns of haemophilia .................................................................................................... 34 2.4.1 The effect of haemophilia on a particular family. ................................................................. 35 2.5 Mechanism of blood clotting .............................................................................................................. 37 2.5.1 Coagulation inhibition. ......................................................................................................... 40 2.6 Diagnosing haemophilia ..................................................................................................................... 41 2.6.1 Clinical presentation. ............................................................................................................ 41 2.6.2 Family history. ...................................................................................................................... 42 2.6.3 Laboratory tests to aid diagnosis. .......................................................................................... 43 2.7 Complications of haemophilia ............................................................................................................ 44 2.7.1 Inhibitors. .............................................................................................................................. 44 2.7.2 Blood-borne viruses. ............................................................................................................. 46 2.8 Treatment and management of haemophilia ....................................................................................... 47 2.9 Current treatment protocols................................................................................................................. 49 2.9.1 Plasma-derived treatments. ................................................................................................... 50 2 2.9.1.2 Cryoprecipitate (Cryo). ...................................................................................................... 51 2.9.1.3 Fresh frozen plasma. .......................................................................................................... 52 2.9.1.4 Fibrin glue. ......................................................................................................................... 52 2.9.2 Further considerations in developing countries. ................................................................... 54 2.10 Recent developments ........................................................................................................................ 54 2.11 The nurse’s role in haemophilia care ................................................................................................ 57 2.12 Haemophilia care in developing countries ........................................................................................ 59 2.13 The South African context ................................................................................................................ 60 2.14 Conclusion ........................................................................................................................................ 64 Chapter 3 The HNEP for Registered Nurses in South Africa ........................................................................ 65 3.1 Introduction ......................................................................................................................................... 65 3.2 Health resource challenges in South Africa ........................................................................................ 65 3.3 The Role of education in nursing ........................................................................................................ 68 3.3.1 Nurse education and practice in South Africa....................................................................... 70 3.3.2 Development of the HNEP. .................................................................................................. 74 3.3.3 Creation of the HNEP. .......................................................................................................... 75 3.4 Cultural factors impacting HNEP education ....................................................................................... 76 3.5 An overview of the content of the first HNEP .................................................................................... 79 3.6 The researcher’s involvement in the development of the HNEP. ......................................................
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