“How Participatory Are We?” the Use of Community Participatory Approaches at Primary Health Care Level to Address the Growing Burden of Chronic Diseases in Sri Lanka

“How participatory are we?” The use of community participatory approaches at primary health care level to address the growing burden of chronic diseases in Sri Lanka Kolitha Wickramage A thesis in fulfilment of the requirements for the degree of Doctor of Philosophy School of Public Health and Community Medicine 2015 1 | P a g e THE UNIVERSITY OF NEW SOUTH WALES Thesis/Dissertation Sheet Surname or Family name: WICKRAMAGE First name: KOLITHA Abbreviation for degree as given in the University calendar: PhD School: School of Public Health and Community Medicine Faculty: Faculty of Medicine Title: The use of community participatory approaches at primary health care level to address the growing burden of chronic diseases in Sri Lanka Declaration relating to disposition of project thesis/dissertation I hereby grant to the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or in part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all property rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation. I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstracts International (this is applicable to doctoral theses only). ……………………… ………………………............. 11thJune 2015 Signature Witness Date The University recognises that there may be exceptional circumstances requiring restrictions on copying or conditions on use. Requests for restriction for a period of up to 2 years must be made in writing. Requests for a longer period of restriction may be considered in exceptional circumstances and require the approval of the Dean of Graduate Research. FOR OFFICE USE ONLY Date of completion of requirements for Award: Originality Statement ‘I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, or substantial proportions of material which have been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgement is made in the thesis. Any contribution made to the research by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project's design and conception or in style, presentation and linguistic expression is acknowledged.’ 2 | P a g e Signed....................................... Date.... 11th June 2015 Copyright Statement ‘I hereby grant the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all proprietary rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation. I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstract International (this is applicable to doctoral theses only). I have either used no substantial portions of copyright material in my thesis or I have obtained permission to use copyright material; where permission has not been granted I have applied/will apply for a partial restriction of the digital copy of my thesis or dissertation.' .................................. Candidate’s signature Authenticity Statement ‘I certify that the Library deposit digital copy is a direct equivalent of the final officially approved version of my thesis. No emendation of content has occurred and if there are any minor variations in formatting, they are the result of the conversion to digital format.’ .................................... 3 | P a g e ABSTRACT The growing burden of chronic non-communicable diseases (NCD’s) in Sri Lanka required rethinking current models of primary health care (PHC), and greater involvement of communities in prevention and control programs. Enabling effective community participation (CP) is recognized as essential for prevention and control of NCDs by WHO. However, for CP to be translated from ‘rhetoric into reality’ the perspectives and practices of health workers, that are key catalysts to CP, need to be assessed. To better understand CP in the context of PHC level NCD prevention and management, this study sought to explore the knowledge, experiences and commitment of PHC workers, health administrators and policy makers; the extent to which community participatory approaches are utilized; factors contributing to meaningful CP and develop a theoretical model in order to define factors that enable, limit, enhance or sustain meaningful CP at PHC level. The study design utilized multiple-method approaches underpinned by a constructivist epistemology including in-depth interviews, group interviews, and an applied (focused) ethnographic study. NCD prevention interventions utilizing participatory approaches were analysed and developed into two short films. Relevant documents were examined and a descriptive cross-sectional survey conducted with health policy makers. Despite clear commitment to the value of, and rationale for CP by policy makers, administrators, PHC workers, and within policy frameworks, the study found little evidence of meaningful CP practice addressed at PHC level. Factors contributing to CP were distilled into five broad categories: administrative and resource environment; attitudinal environment; policy and regulatory environment; technical competency and knowledge environment and external environment encompassing factors outside the formal health system that may influence the realization of CP. These were anchored within a complex health systems model. The study findings clearly indicate that for CP to be meaningfully embraced as a viable public health strategy, health authorities need to themselves promote a culture of iterative and collaborative planning and understand the interplay of factors enabling and inhibiting its emergence. The findings of this thesis may be useful for health planners and analysts within low to middle-income countries interested in adopting a complex systems analysis approach to explore CP at PHC level. Keywords: Primary Health Care, Non-Communicable Diseases, Community Participation, Health System Reform, Complex Health Systems Modelling, Sri Lanka, Health Policy, Policy Implementation. 4 | P a g e ACKNOWLEDGEMENTS There are a number of people who have accompanied me on this journey that I wish to thank. Firstly, without the participation of the health executives, district health administrators, consultants, primary health care workers and managers, community members and patients, this research would not have materialized. To them, I owe a huge thanks for their time, thoughtfulness and honesty. The energy of your dynamic participation is the very essence of this thesis! My supervisors Professor Anthony Zwi and Dr Husna Razee were unfailingly engaged, providing constructive feedback and were available whenever I needed their guidance. Your feedback was invaluable in helping me to sharpen my writing and arguments. I am deeply grateful to both of you for supporting me through some very stressful situations over the past year. Thank you! Anthony I thank you for being a true friend and mentor over the years and look forward to our future work. I would like to thank Dr Anne Bunde-Birouste and Prof. Jan Ritchie for their continuous support, friendship and inspiration over the years, and to Dr Palitha Abeyakoon of WHO for the guidance he provided during the formative phases of this national research study. To Dr Susie Perera for helping to meaningfully integrate this research evidence with the Ministry of Health’s Primary Health Care revitalization process. To my Sri Lankan ‘research crew’ for their support in undertaking the field research across three districts in what were challenging and resource limited rural settings. I thank Charmara and Kavinda for assisting me produce two documentary films for the in-depth case study analysis, and importantly to the ever-dynamic Shar and loving family who sacrificed so much with quiet resolve through the many years of undertaking this research. I am pleased that this research project, the partnerships it harnessed and the participatory process followed, has already contributed to providing an evidence base for health systems reform for decision-makers at the Ministry of Health. I sincerely hope this work will continue to practically contribute to a positive reform process. The goal of this effort was always about making a meaningful impact, and without the support and participation of those mentioned, this would not have been possible. So thank you and Keep shining! Kol 5 | P a g e SCIENTIFIC CONFERENCE & WORKSHOP PROCEEDINGS 1. Paper presentation: “Practical tools to explore community participation and lessons learnt from three district health systems”. Annual Scientific Sessions, College of Community Physicians, 2013 on Conference theme: “Defining Universal Health Access and Coverage in Sri Lanka”, 21-25th September 2013 in Colombo, Sri Lanka. 2. Co-Facilitated (with Director of Policy and Planning, Ministry of Health) Workshop

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