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To Evaluate the Support Required for Staff In The copyright of this thesis vests in the author. No quotation from it or information derived from it is to be published without full acknowledgement of the source. The thesis is to be used for private study or non- commercial research purposes only. Published by the University of Cape Town (UCT) in terms of the non-exclusive license granted to UCT by the author. University of Cape Town TO EVALUATE THE SUPPORT REQUIRED FOR STAFF IN THE PAEDIATRIC UNIT IN DORA NGINZA HOSPITAL, PORT ELIZABETH, IN CARING FOR CHILDREN WITH LIFE LIMITING AND LIFE THREATENING ILLNESSES FLORENTINA URECHE STUDENT NUMBER: URCFLO001 A dissertation submitted in partial fulfillment of the requirements for the Degree in Master in Philosophy in Palliative Medicine FACULTY OF HUMAN SCIENCES SCHOOL OF PUBLIC HEALTH & FAMILY MEDICINE UNIVERSITY OF CAPE TOWN 2012 SUPERVISOR: DR MICHELLE MEIRING 0 ACKNOWLEDGEMENTS I would like to take this opportunity to express my gratitude and sincere appreciation to all of those who helped and supported me for the duration of the study to its completion; this work would not have been possible without their assistance. To my supervisor Dr Michelle Meiring, for her perceptive feedback, diligent guidance and encouragement, despite her busy schedule; To my co-supervisor Dr Lindsay Farrant, for accommodating me during difficult times and for her honest feedback; I am thankful to the UCT –Palliative Medicine Department lead by Dr Liz Gwyther for her mentorship during the Diploma course and guidance with the study proposal; To Naomi Fray for her invaluable assistance and efforts, at times beyond her duties; To Sister Leslie Lawson (St Francis Hospice) who gracefully assisted as facilitator to the Focus group discussions; To all my friends and family who offered me their ongoing moral support; To my husband Niki for his patience and unconditional emotional and moral support for the entire duration of the study; I am eternally grateful to my father, Stelian, my mother, Tantza and to my sister Mariana who always believed in me , I hope I’ve made you proud; I am appreciative to all nurses and doctors who enthusiastically participated to the study in spite of their workload and busy schedules; 1 Finally, to all my patients and their families who allowed me to understand their lived experiences with LL and LTIs’; they are the ones who inspired me and contributed to my personal growth and to whom I dedicate this work. 2 DECLARATION: r DECLARATION I, Florentina Ureche, hereby declare that this is my own work and each signifi cant contribution and quotation in thjs dissertation, from the work of other people has been attributed, cited and referenced. This work has not been previously submitted in whole, or in part, for the award of any degree in this or other university. I empower the tmiversity to reproduce for the purpose of the research any portion or the whole of the contents in any manner whatsoever. Date: 30.01.2013 University of Cape Town 3 TABLE OF CONTENTS ACKNOWLEDGEMENTS .............................................................................................................. 1 DECLARATION ............................................................................................................................ 3 TABLE OF CONTENTS .................................................................................................................. 4 LIST OF TABLES ........................................................................................................................... 6 LIST OF FIGURES ......................................................................................................................... 8 LIST OF ABBREVIATIONS ............................................................................................................. 9 ABSTRACT ................................................................................................................................. 11 CHAPTER 1 ................................................................................................................................ 13 1.1. INTRODUCTION ......................................................................................................................... 13 1.2 THE INTEREST IN THE STUDY ..................................................................................................... 14 1.3 DEFINITION OF TERMS ............................................................................................................... 17 CHAPTER 2: LITERATURE REVIEW .............................................................................................. 21 2.1. THE IMPACT OF LIFE LIMITING AND LIFE THREATENING ILLNESSES ON CHILDREN ................. 21 2.2 THE IMPACT OF LIFE THREATENING AND LIFE LIMITING ILLNESSES ON FAMILIES .................... 24 2.3 EFFECTS OF CARING FOR CHILDREN WITH LL AND LTI’S ON HEALTH PROFESSIONALS ............. 27 2.4 PAEDIATRIC PALLIATIVE CARE .............................................................................................. 30 2.4.1 INCIDENCE OF LLIs’ AND LTIs’ ................................................................................................. 30 CHAPTER 3: RESEARCH METHODOLOGY .................................................................................... 36 3.1 AIM AND OBJECTIVES ................................................................................................................ 36 3.2 STUDY DESIGN ........................................................................................................................... 36 3.3 STUDY SITE ................................................................................................................................. 36 3.4. STUDY POPULATION ................................................................................................................. 37 3.5. DATA COLLECTION .................................................................................................................... 38 3.6. DATA ANALYSIS ......................................................................................................................... 41 3.7. ETHICAL CONSIDERATIONS ....................................................................................................... 43 CHAPTER 4: RESULTS ................................................................................................................. 45 4.1 INTRODUCTION .......................................................................................................................... 45 4.2 RESPONSE RATE ......................................................................................................................... 48 4.3 DESCRIPTIVE STATISTICS: CHARACTERISTICS OF PARTICIPANTS ............................................... 49 4 4.4. DESCRIPTIVE STATISTICS FOR THE QUESTIONNAIRE ITEMS ..................................................... 52 4.5 RESULTS FOR SUMMATED SCORES PERTAINING TO KNOWLEDGE, EMOTION, COMMUNICATION AND SUPPORT ................................................................................................... 58 4.6 RELATIONSHIP BETWEEN FACTORS AND DEMOGRAPHIC VARIABLES ....................................... 60 4.7 STAFF’S PERCEIVED EDUCATIONAL NEEDS REGARDING PAEDIATRIC PALLIATIVE CARE AND THEIR INDICATED LEARNING MODALITIES ...................................................................................... 66 4.8 QUALITATIVE DATA RESULTS ..................................................................................................... 68 CHAPTER 5: DISCUSSION .......................................................................................................... 77 5.1 INTRODUCTION .......................................................................................................................... 77 5.2 RESPONSE RATE TO THE QUESTIONNAIRE ................................................................................ 77 5.3 CHARACTERISTICS OF THE POPULATION-DEMOGRAPHIC VARIABLES ....................................... 77 5.4 RESULTS RELATED TO LEVEL OF KNOWLEDGE ........................................................................... 79 5.5 RESULTS RELATED TO THE EMOTIONAL COMPETENCE ............................................................. 92 5.6 RESULTS RELATED TO COMMUNICATION COMPETENCE .......................................................... 97 5.7 RESULTS RELATED TO LEVEL OF SUPPORT ................................................................................. 99 5.8 STAFF’S EDUCATIONAL NEEDS AND LEARNING MODALITIES .................................................. 103 5.9 QUALITATIVE DATA RESULTS ................................................................................................... 105 5.10 LIMITATION OF THE STUDY .................................................................................................... 108 5.11 STRENGTHS OF THE STUDY .................................................................................................... 109 CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS ........................................................... 111 6.1 INTRODUCTION ........................................................................................................................ 111 6.2 CONCLUSIONS .......................................................................................................................... 111 6.3 IMPLICATIONS .........................................................................................................................
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