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Pediatric Palliative Care in Brasov, Romania

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Pediatric Palliative Care in Brasov, Romania Pediatric Palliative Care in Brasov, Romania: Factors Enabling their Success Dennis Johnson Lancaster University Faculty of Health and Medicine Lancaster, Lancashire, England June 2013 The copyright in this thesis is owned by the author. Any quotation from the thesis or use of any of the information contained in it must acknowledge this thesis as the source of the quotation or information. ProQuest Number: 11003802 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. uest ProQuest 11003802 Published by ProQuest LLC(2018). Copyright of the Dissertation is held by the Author. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code Microform Edition © ProQuest LLC. ProQuest LLC. 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106- 1346 ABSTRACT Background/Aims: Prioritization in healthcare systems may result in few resources being available for the care of children with life-threatening and life-limiting diseases particularly in resource-poor countries. The aim of this thesis is to understand the purported success of pediatric palliative care (PPC) in Brasov, Romania, as it is portrayed as a beacon of palliative care in Central and Southern Europe despite the paucity of healthcare resources. Methods: This qualitative study takes an iterative, reflexive approach to gathering and analyzing the data. Semi-structured interviews with a wide range of participants were used. Ethnographic observations were recorded in the inpatient unit, in the Children's Day Care Center and their wheelchair trips into the city, and during homecare visits. The observations and transcribed interviews were methodically and reflexively reviewed; categories which might yield factors contributing to success emerged. Excerpts were taken from the triangulated data and submitted to a process of filtering and sorting that facilitated identification of similar phrases, themes and patterns. Higher level themes emerged from the alignment of the categorized data and were then interrogated by further data collection and analysis to the point of theoretical saturation. Results:The factors that enable the success of PPC in Brasov are a unique paradigm of PPC, an undying image, compassion, solidarity, and power equity. Foucault's power framework was used to shape an explanatory theory for their success. Power 2 imbalances were redressed by avowing transnational citizenship in addition to nationality, targeting the effects of power rather than the power authority, contesting what is thought to be known, engaging the immediate problem at hand, opposing efforts to isolate individuals from the society that nurtures them, and resisting attempts to control "who we are". Conclusions: Brasov PPC provides a medical home for children with life-limiting illnesses. This new, integrated standard of care offers seamless, continuous, and equitable healthcare at a reasonable cost and has the potential to transform the care of children with life-limiting and life-threatening diseases elsewhere. The findings of this study suggest that a culture of competent and compassionate care is created by embracing these transformative changes in healthcare delivery and complementary changes in the education of healthcare professionals. 3 Acknowledgements This thesis could not have been produced without the help, support, encouragement and input of many people. Dr. Anne Grinyer has been an invaluable resource and incomparable advisor since my work began. Professor Chris Hatton has kindly filled the void created when Dr. Iris Fineberg left Lancaster University to become Associate Dean for Academic Affairs at Stony Brook School of Social Welfare in New York. Professor David Clark guided me into the PhD program and facilitated key academic connections in Romania. For the gracious assistance of Ms. Csilla Dregus as a multilingual interpreter, transcriptionist, chauffeur, travel companion, and fellow equestrian, I give heart-felt thanks. I am also grateful to the Fulbright Commission for their support of my research on the ground in Romania. Most of all, I thank Brasov Pediatric Palliative Care - the staff, the children, and their families - for allowing me to be present and near. Finally, to my lovely wife, who managed our farm alone in my absence, your compassion for young people and your love for me have given me the strength and confidence to persevere. 4 ACADEMIC REGISTRY Research Thesis Submission Name: Dennis L. Johnson School/PGI: Lancaster University, Faculty of Health & Medicine Version: (i.e. First, First Degree Sought PhD Palliative Care Resubmission, Final) (Award and Subject area) Declaration In accordance with the appropriate regulations, I hereby submit my thesis and I declare that: 1) the thesis embodies the results of my own work and has been composed by myself 2) where appropriate, I have made acknowledgement of the work of others and have made reference to work carried out in collaboration with other persons 3) the thesis is the correct version of the thesis for submission and is the same version as any electronic versions submitted*. 5 4) my thesis for the award referred to, deposited in the Lancaster University Library, should be made available for loan or photocopying and be available via the Institutional Repository, subject to such conditions as the Librarian may require 5) I understand that as a student of the University I am required to abide by the Regulations of the University and to conform to its discipline. * Please note that it is the responsibility o f the candidate to ensure that the correct version o f the thesis is submitted. Signature of Date: December 2, 2013 Candidate/ Submission Submitted By (name in capitals): Signature of Individual Submitting: '-'* Date Submitted: 6 For Completion in the Student Service Centre fSSQ Received in the SSC by(name in capitals): Method o f Submission (Handed in to SSC; posted through internal/external mail): E-thesis Submitted (mandatory for final theses) Signature: Date: 7 CONTENTS Chapter 1. Introduction Chapter 2. Review of the Literature [2.1] Pediatric palliative care (ppc) defined [2.2] Specialization [2.3] The medical home [2.4] PPC and the medical home [2.5] PPC in other parts of the world [2.5.1] Australia [2.5.2] South Africa [2.5.3] United Kingdom [2.5.4] United States [2.5.5] Poland [2.5.6] Hungary [2.6] 21st Century challenges for PPC [2.6.1] Understanding the needs of children [2.6.2] Adequate care of the suffering [2.6.3] Advancing strategies that support caregivers [2.6.4] Strategies to support health-care providers [2.6.5] An inclusive approach [2.7] The orphan problem [2.8] Power [2.9] Summary of major points Chapter 3. Methodology [3.1] Disciplinary origin [3.2] About reality and truth [3.3] Traditions of qualitative research [3.3.1] Ontology: idealism [3.3.2] Ontology: realism [3.3.3] Epistemology: Positivism/empiricism [3.3.4] Epistemology: Critical emancipatory positions [3.3.5] Epistemology: Constructionism/interpretism [3.3.6] Epistemology: Postmodernism Chapter 4. Research Process and Methods [4.1] Epistemological integrity [4.2] Gatekeeping [4.3.1] Data sources: interviews [4.3.1] Data sources: interviews - researcher inexperience [4.3.1] Data sources: interviews - poor quality translation and transcription [4.3.1] Data sources: interviews - language selection and exclusion 8 [4.3.2] Data sources: ethnographic observations [4.3.3] Data sources: archived documents [4.4] Data collection and analysis Chapter 5. Findings [5.1] Financial stability [5.2] The Roma 'problem' [5.3] Unique paradigm of pediatric palliative care [5.3.1] Physical layout [5.3.2] Paradigm of care: homecare, inpatient care, day care [5.3.3] One last 'point' [5.4] "Children don't die here!" [5.4.1] Public perspective [5.4.2] Standpoint of the professional caregivers [5.4.3] Viewpoint of the children and their families [5.5] Compassion for abandoned and unwanted children [5.5.1] Compassion [5.5.2] Abandoned and unwanted: 'irrecoverables', Roma, CHILLD [5.6] Solidarity: like-minded people joined together in meaningful activity [5.6.1] These children have value and worth [5.6.2] Serving the family and the child supersedes treating the disease [5.6.3] Children come here to be better... not to die [5.6.4] God's work [5.6.5] Not always perfect [5.7] Equitable Balance of Power [5.7.1] Knowledge [5.7.2] Expertise [5.7.3] Moral persuasion [5.7.4] Group dynamics [5.7.5] Group/personal charisma [5.8] By way of summary Chapter 6. Discussion [6.1] The research question [6.2] Theoretical foundation, methods, and methodological problems [6.3] Summary of findings [6.4] Findings in context [6.4.1] Empirical success claimed by Clark and Wright [6.4.2] Actual success: unique paradigm of care: under one roof, just like at home; regularly scheduled, routine hospicization 24/5. [6.4.3] Real success [6.4.3] Real success - non-dying image [6.4.3] Real success - compassion [6.4.3] Real success - solidarity 9 [6.4.3] Real success - equitable balance of power [6.5] The medical home model: a standard for PPC success [6.6] Power equity, ex aequo et bono\ an explanatory theory of success [6.6.1] Transversality [6.6.2] Avoid direct confrontation with the power elite: target the effects of their power instead [6.6.3] Treat the immediate problem [6.6.4] Oppose efforts to separate the individual from traditional social milieu [6.6.5] Contesting the privileges of knowledge [6.6.6] Right of self-determination [6.7] Implications for practice [6.7.1] Children with life-limiting vs.
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