Middlesex University Research Repository An open access repository of Middlesex University research http://eprints.mdx.ac.uk Charalambous, Andreas (2008) Listening to the voices of patients with cancer and their nurses: a hermeneutic phenomenological approach to quality nursing care. PhD thesis, Middlesex University. Available from Middlesex University’s Research Repository at http://eprints.mdx.ac.uk/8103/ Copyright: Middlesex University Research Repository makes the University’s research available electronically. Copyright and moral rights to this thesis/research project are retained by the author and/or other copyright owners. The work is supplied on the understanding that any use for commercial gain is strictly forbidden. A copy may be downloaded for personal, non- commercial, research or study without prior permission and without charge. Any use of the thesis/research project for private study or research must be properly acknowledged with reference to the work’s full bibliographic details. This thesis/research project may not be reproduced in any format or medium, or extensive quotations taken from it, or its content changed in any way, without first obtaining permission in writing from the copyright holder(s). If you believe that any material held in the repository infringes copyright law, please contact the Repository Team at Middlesex University via the following email address: [email protected] The item will be removed from the repository while any claim is being investigated. MX 7332139 7 , iimiiiiii 1 v _ > Abstract The purpose of the thesis is to illuminate the meaning of quality nursing care in the three major inpatient cancer care centres in Cyprus as seen from the standpoint of patients with cancer, patients' advocates and nurses. The data are based on: a) interviews (narratives) with 25 patients with cancer and two focus groups b) a focus group with patients' advocates and c) interviews with 20 nurses working in the cancer care departments. V The rational for this study echoed a conceptualisation problem among patients, nurses and patients' advocates in relation to quality nursing care. The different interpretations held by the informants around this issue often creates problems of communication and understanding between nurse-patients and between nurses-patients' advocates. It also prevents a commonly shared concept to be adopted in the clinical setting. In order to investigate this issue, a philosophical approach was adopted based on the philosophy of Paul Ricoeur and using the "lived experiences" of the informants as the basis of the investigation. The data were analysed using a hermeneutic phenomenological approach based on Ricoeur's interpretation theory but modified to suit the nursing paradigm. What stands out from the study is the overlapping of the patients', patients' advocates and the nurses' experiences of quality nursing care. Based on the attributes that the informants have used to interpret the concept of quality nursing care, a shared understanding of the concept materialised. This shared understanding formed the basis for developing a theory of quality nursing care. Simultaneously, the study reinforced the importance of "getting the basics right" for providing quality nursing care to patients with cancer. Based on the informants' lived experiences: t.a set of guidelines of best practice were developed, as a means for influencing nursing practice. • t ; V1 ..'-\t it t. i i 1 . r *>. t Listening to the voices of patients with cáncer and their nurses: a hermeneutic phenomenological approach to Quality Nursing Care Andreas Charalambous (A.C) Doctor of Philosophy Middlesex University 2008 Acknowledgments A dissertation of this nature is never accomplished without assistance. I am indebted to my wife Maria, with whom the idea for a study on quality in patients with cancer originated. I never would have even reached the dissertation stage if her support had not seen me through some truly harrowing months. To my son, Artemios rests my insatiable inspiration during the last months of my PhD. I would like to express my gratitude for a truly unique advisor, Professor (I)Rena Papadopoulos, who is one of few professors under whom a qualitative-oriented researcher could earn a Ph.D. in a field currently constrained by the intellectual laziness, existential terror, and career ambitions of bean- counters, megalomaniacs, and phenomena-hating debunkers. I would also like to thank Alan Beadsmoore for his labour and contribution to the thesis. Last but certainly not least I would like to express my sincere gratitude to Michael Rowan for his invaluable help during my studies. Thank you, ali. I was surrounded by the best. ii Contents Part A Chapter 1: Introduction to thesis 2 PartB Chapter 2: Hermeneutic phenomenology: a theoretical framework for the study 15 Chapter 3: Health care and quality: literature review and the relevance to the quality of the nursing care for the patients with cancer in Cyprus 42 Chapter 4: Ethnohistory- Laography of Cyprus 77 PartC Chapter 5: Methodology and methods for data collection and analysis...l06 Chapter 6: Explication, présentation and discussion of the findings 148 PartD Chapter 7: Produced theory and its practical application through guidelines for nursing practice 257 PartE Chapter 8: Limitation of the study and recommendation for Further research 278 Références 283 Appendices 326 iii - 'A Use of the first person I use the first person singular throughout this thesis. In so doing, I contradict the convention associated with positivist and naturai scientific research, wherein the use of the third person is used to indicate objectivity; and acknowledge, in a manner that is congruent with the hermeneutical underpinnings of this study, that I as researcher am an important actor in the study. My use of the first person conforms to common practice in qualitative research, and is supported by Webb (1992). Use of language in relation to cancer I use the term "patients with cancer". I am aware of the debate that is taking place around the most appropriate use of language. Indeed some of the language may raise issues of labelling or stigmatising. The fact that in the Greek language the term "patients with cancer" - astheneis me karkino, appeared to be more acceptable by the patients and their relatives instead of the term "cancer patients"- karkinopatheis, which is considered highly discriminating and labelling, played a decisive rôle in which terminology to use. Furthermore, another reason was the hermeneutic phenomenological nature of this study. This philosophical approach acknowledges the individuality of the person and his/her ontology. Advocate's rôle An advocate is defined as "someone who pleads a case on someone else's behalf (Concise Oxford Dictionary, 2002). For the purpose of this study I identified this rôle in light of members of the cancer patients' associations helping the patient to get ali the necessary information to make décisions and having their rights protected. The patients and their relatives often considered that they were being asked at times to make very difïïcult décisions regarding treatment options and they felt that they lacked the necessary information to make thèse décisions. Furthermore, at times they believed that they were not given ali the treatment options or their full rights explained. iv PARTI 1 CHAPTER 1 INTRODUCTION TO THESIS Background and rationale for the study The diffìculty lies, not in the new ideas, but in escaping the old ones, which ramify, for those brought up as most of us have been, info every corner of our minds. (John Maynard Keynes cited by Drexler 1987) Members of our society have différent thoughts and rote expectations about thèse phrases, (nursing care, therapeutic care, caring for others, and related expressions)); in relation to the kinà of care they receive from nurses. (Dr. Madeleine Leininger 1985) The work described in this thesis addresses two centrai issues which in an implicit way echoed the above Statements. The first issue concerns the exploration of the meaning of a complex and nebulus concept, that of quality in nursing care in the specific context of nursing in Cyprus. This context is characterised by escalating costs, the nation's population aging, technology increasing, and the already limited financial resources declining. As a result, multiple stakeholders are searching for ways to maintain or enhance quality and nursing care is seen as the comerstone for providing this care. The second issue cornes as a response to enhancing quality and it constitutes an attempi to influence practice through the new knowledge that has been gained. This is done through the development of quality care guidelines for cancer nursing. This study arose as a response to a particular health care context in Cyprus which lacked a specific définition or a theory of quality nursing care, clinical standards, spécifie policy and strategie planning'of nursing services. The nursing profession was subsumed under medicine; and nurses in Cyprus were struggling to attain their professional identity. Nursing practice was prescribed by others and highlighted by traditional, ritualistic tasks with little regard to rationale. A growing body of literature asserts that conceptual 2 models and théories could create mechanisms by which nurses would communicate their professional convictions, provide a moral/ethical structure to guide actions, and foster a means of systematic thinking about nursing and its practice (McEwen 2007; Chinn and Krämer