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Bystanders' Perspectives on the Provision of Informal, Hospital-Based Care to Bedridden Patients with Cancer in Sri Lanka

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Bystanders' Perspectives on the Provision of Informal, Hospital-Based Care to Bedridden Patients with Cancer in Sri Lanka University of New Mexico UNM Digital Repository Nursing ETDs Electronic Theses and Dissertations Fall 12-1-2020 BYSTANDERS’ PERSPECTIVES ON THE PROVISION OF INFORMAL, HOSPITAL-BASED CARE TO BEDRIDDEN PATIENTS WITH CANCER IN SRI LANKA B. Sunil S. De Silva Follow this and additional works at: https://digitalrepository.unm.edu/nurs_etds Part of the Health Services Administration Commons, Health Services Research Commons, Nursing Commons, Oncology Commons, Palliative Care Commons, Primary Care Commons, and the Quality Improvement Commons Recommended Citation De Silva, B. Sunil S.. "BYSTANDERS’ PERSPECTIVES ON THE PROVISION OF INFORMAL, HOSPITAL- BASED CARE TO BEDRIDDEN PATIENTS WITH CANCER IN SRI LANKA." (2020). https://digitalrepository.unm.edu/nurs_etds/53 This Dissertation is brought to you for free and open access by the Electronic Theses and Dissertations at UNM Digital Repository. It has been accepted for inclusion in Nursing ETDs by an authorized administrator of UNM Digital Repository. For more information, please contact [email protected]. i Badurakada Sunil Santha De Silva Candidate College of Nursing Department This dissertation is approved, and it is acceptable in quality and form for publication: Approved by the Dissertation Committee: Barbara I Damron, PhD, RN, FAAN, Chairperson Beth Tigges PhD, RN, PNP, BC Nancy Ridenour, PhD, APRN, BC, FAAN Charlotte Nirmalani Gunawardena, Ph.D. ii BYSTANDERS’ PERSPECTIVES ON THE PROVISION OF INFORMAL, HOSPITAL-BASED CARE TO BEDRIDDEN PATIENTS WITH CANCER IN SRI LANKA BY BADURAKADA SUNIL SANTHA DE SILVA B.S., Nursing, The Open University of Sri Lanka, 2001 M.S., Nursing, Australian Catholic University, 2009 DISSERTATION Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Nursing The University of New Mexico Albuquerque, New Mexico December, 2020 iii ACKNOWLEDGMENTS I would like to express my sincerest gratitude to my committee chairs. My former chair Dr. Welle supervised me from the beginning of the Ph.D. studies as an advisor, and Dr. Damron served as a committee member and the new chair. Both offered assistance, guidance, and encouragement throughout the study. Without their continuous support, my research goals would not have been achieved. I would also like to express my gratitude to committee members, Dr. Tigges, Dr. Ridenour and Dr. Gunawardana, who have been dedicated to establishing collaboration with the Open University in Sri Lanka to get this opportunity to commence my Ph.D. studies in the USA, and the continuous assistance throughout the Ph.D. journey. Special thanks also go to Dr. Ridenour who helped me to commence and continue the Ph.D. journey as a former Dean of the University of New Mexico Health Sciences Center College of Nursing. I would like to thank the Open University of Sri Lanka, my colleagues at the Department of Nursing, the Dean of the Faculty of Health Sciences, Dr. Ranawaka, and Vice-Chancellor Dr. Ariadurai for their maximum support to arrange the financial assistance and the study leave for me to conduct this study successfully. Many thanks also go to the Cancer Hospital in Sri Lanka, including the Director, matrons, nurses, and especially the bystanders, for their support and willingness to spend their time to contribute to this research. Their involvement was pivotal for the success of the study. Finally, I would also like to thank my wife, Malkanthi, two sons Tharidu and Chamidu, and our mothers and sisters who dedicated their lives for my higher education. Without their dedication, it would be hard to achieve this goal. iv BYSTANDERS’ PERSPECTIVES ON THE PROVISION OF INFORMAL, HOSPITAL-BASED CARE TO BEDRIDDEN PATIENTS WITH CANCER IN SRI LANKA BY BADURAKADA SUNIL SANTHA DE SILVA B.S., Nursing, The Open University of Sri Lanka, 2001 M.S., Nursing, Australian Catholic University, 2009 Ph.D., Nursing, University of New Mexico, 2020 ABSTRACT Due to the nursing shortage in Sri Lanka, patients need informal caregivers, known as bystanders, to help provide patient care. This study described bystanders’ perspectives on informal, hospital-based care to bedridden patients with cancer in Sri Lanka. In this qualitative descriptive study, 17 bystanders at Apeksa/Cancer Hospital, Sri Lanka, were recruited using snowballing sampling. Data were collected through telephone interviews and analyzed using content and thematic analyses. Findings showed that paid and unpaid bystanders cover all caregiving tasks with minimum interaction with nurses. Unpaid bystanders described the need for same-sex bystanders and additional help with patients’ mobilization and specialized care. Paid bystanders discussed sleepless nights’ effects, bullying, and monopoly. Recommendations include the provision of a bystander for every bedridden patient, basic facilities (adequate sleeping and sanitary facilities), quality foods, and caregiver training. Government-level policies are needed to accept the bystander service to improve quality patients care in Sri Lanka. v TABLE OF CONTENTS ACKNOWLEDGMENTS ............................................................................................... iii ABSTRACT ...................................................................................................................... iv TABLE OF CONTENTS ..................................................................................................v LIST OF FIGURES ........................................................................................................ xii LIST OF TABLES ......................................................................................................... xiii CHAPTER 1 .......................................................................................................................1 INTRODUCTION..............................................................................................................1 Statement of the Problem ................................................................................................ 1 Sri Lanka ......................................................................................................................... 4 Sri Lankan Health System ............................................................................................... 8 Nursing in Sri Lanka ..................................................................................................... 10 Being the Bystander ...................................................................................................... 12 Significance of the Study .............................................................................................. 14 Conclusion ..................................................................................................................... 15 Research Questions ....................................................................................................... 16 CHAPTER 2 .....................................................................................................................18 THE LITERATURE REVIEW ......................................................................................18 Palliative Care ............................................................................................................... 19 The Dearth of Cancer-related Palliative Care in Sri Lanka. ......................................... 21 The Bystander and Informal Care Provision ................................................................. 23 vi Types of Bystanders .................................................................................................. 26 The Care Bystanders are Providing ............................................................................... 29 Challenges Faced by Bystanders in Providing Care ..................................................... 34 Type of Interactions and Communication with Nurses and Bystanders ....................... 39 Recommendations of Bystanders to Improve Informal Care ........................................ 42 Social-ecological Model: A Conceptual Framework for the Study .............................. 45 Intrapersonal Factors ................................................................................................. 48 Interpersonal Factors ................................................................................................. 48 Institutional Factors ................................................................................................... 50 Community Factors ................................................................................................... 50 Public Policy .............................................................................................................. 51 Summary of the Literature ............................................................................................ 52 CHAPTER 3 .....................................................................................................................54 METHODOLOGY ..........................................................................................................54 Qualitative Descriptive Design ..................................................................................... 54 The Study Evolution ...................................................................................................... 58 Researcher Bias ......................................................................................................... 61 Study Setting ................................................................................................................
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