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Health Beliefs and Behaviour of a Population Screened for Chronic Kidney Disease in Sarawak: a Mixed Methods Study

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Health Beliefs and Behaviour of a Population Screened for Chronic Kidney Disease in Sarawak: a Mixed Methods Study School of Public Health Faculty of Health Sciences Health Beliefs and Behaviour of a Population Screened for Chronic Kidney Disease in Sarawak: A Mixed Methods Study Sheryl Joy Mattu This thesis is presented for the degree of Doctor of Philosophy of Curtin University March 2016 Declaration To the best of my knowledge and belief this thesis contains no material previously published by any other person except where due acknowledgment has been made. This thesis contains no material which has been accepted for the award of any other degree or diploma in any university. The research presented and reported in this thesis was conducted in accordance with the National Health and Medical Research Council National Statement on Ethical Conduct in Human Research (2007), updated March 2014. The study received human research ethics approval from the Curtin University Human Research Ethics Committee (EC00262), Protocol Approval HR 07/2009. Signature: Date: March, 2016 i Dedication A further sign of health is that we don't become undone by fear and trembling … but take it as a message that it's time to stop struggling and look … directly at what's threatening us. Pema Chödrön Whenever I needed assistance, my friends were so obliging, helping me during the taxing recruitment, translation and rigorous data collection phases. I especially want to thank Caleena, Susan, Margaret and Ashleigh for your smiles and compassionate demeanour. Thank you to Dr Anand for helping me cope with some difficult medical complications during that time. Every one of my immediate family members has desired the best for me. My four grandparents taught life-lessons through quoting proverbs; Dad and Mum are always there with a story and a prayer; Bill and Joy are amazingly inspirational; Marlene, Chris and David are so motivational. Staunchly devoted, my dear husband Roland has been my friend for more than 40 years and has never ceased being positively optimistic, even during the last few complicated years. His encouragement and support has enabled me to pursue my life‘s aspirations. Truly stimulating in their encouragement, Gavin, Lydia, Renai and Jeremy have spurred me on to complete this chapter of my life – I am forever grateful. I believe that this legacy of work I leave will be of value to them, and to my Kelabit extended family, as they endeavour to maintain a healthy lifestyle. Plaba doo pian kadi muyuh nengan kinah tah mare tubut ngan narih. Repat ngan Tuhan ngeberakat tauh lem adto nuk pema´un. For I know the plans I have for you, declares the Lord, they are plans for good and not for disaster, to give you a future and a hope. (Jeremiah 29:11. NLT) ii Acknowledgements The doctor of the future will give no medicines, but will interest his patients in the … care of the human frame, in diet, and in the causes and prevention of disease. Thomas A Edison Many times I reflected on the fortitude and resilience to overcome the numerous challenges the dialysis patients encountered. The courage and acceptance of end-stage renal disease patients; the non-acceptance and trepidation of the first degree relatives and their spouses who care for them; the frustration of those with metabolic syndrome and chronic diseases, all prompted me to pursue this research area. Amazing is the only way to describe my appreciation and admiration for all the medical and health staff who give altruistically to improve the quality of life of end-stage renal disease patients. I am indebted to those who shared information about their experiences and gave me access to their patients for recruitment of their family members. The professional integrity exemplified by the health research staff at Curtin University is commendable. The late Associate Professor Paola Ferroni launched me in this direction of health discovery. Much appreciation to past DPV-C Dr Joan Gribble (Curtin University Sarawak) for her encouragement and conviction, that this study‘s findings, when applied, would have significant health benefits for the community. To those who have guided my professional development and progress, I am especially appreciative. To Associate Professor Mario Soares for challenging me beyond my comfort zone, for providing guidance and direction, and for overseeing this research; to Dr Yun Zhao for her patience and for providing clarity to the arduous statistical maze; to Dr Jan Lewis for introducing me to the innovative Mixed Methods approach and her unremitting encouragement for me to persevere to completion with this community health project; and to Dr Margaret Johnson for her valued assistance in editing advice. Unceasing in their endorsement for this community study, Sarawak Shell Berhad and Shell Health Malaysia have been very supportive. I am indebted for the financial assistance given me to conduct this research project. I wish to acknowledge the iii encouragement of Dato‘ Wee Yiaw Hin, YBhg Datuk Mohd Anuar Taib, Dr Kumar Supramaniam, Dr Jefferelli Bahrin and Dr Halim Mohamed, all of whom ardently promote chronic disease prevention. Thank you for facilitating negotiations with Shell, Madam Peing Tajang and Mr Joseph Balan Seling. Thank you also to Soon and Grace for inviting me to participate in the yearly healthy retirement seminars conducted for Shell employees. I am grateful to Mr Kevin Tan, CEO Columbia Hospital Malaysia, and the other corporate bodies who contributed to and enabled this study, including Gribbles Pathology Laboratory, Curtin University Sarawak, Curtin University Perth, WA and the Australian Government. This legacy of work I leave will be of value to those with metabolic syndrome, chronic kidney disease and end-stage renal disease, their families and members of the Miri community, as they transition towards a healthy urban lifestyle. Terima kasih kepada semua diatas pertolongan dan bantuan sepanjang projek penyelidikkan. And work for the peace and prosperity of the city … Pray to the Lord for it, for its welfare will determine your welfare. (Jeremiah 29:7. NLT) Photograph 0.1 Orang Ulu Youth performing at Miri City celebrations Photograph by researcher‘s husband. iv Abstract Research evidence suggests that first degree relatives of patients with end-stage renal disease, particular ethnic groups and multiple components of metabolic syndrome may contribute to the development and exacerbation of chronic kidney disease. The study setting is Miri, in Sarawak, Malaysia. The participants were from a variety of ethnic and socio-demographic backgrounds. The aim of this study is to synthesise a coherent explanation of health-related beliefs, behaviours and knowledge contributing to abnormal clinical parameters that may predict the development of chronic disease in participants. The quantitative objectives are to determine what socio-demographic, biochemical and lifestyle factors are associated with the risk of chronic kidney disease and metabolic syndrome. The qualitative objectives are to analyse the health-related beliefs, behaviours, knowledge, barriers, cultural practices and lifestyle choices that may be potential predictors of chronic kidney disease and metabolic syndrome. This study employs a two-phased Mixed Methods sequential explanatory design. Phase One, a case-control study, involves the collection and analysis of statistical data by which to screen participants (n = 270) for chronic kidney disease and metabolic syndrome. An intermediate stage connects the two methodologies and determines what exposures of interest warrant further investigation. The Phase Two interview participants (n = 32) are a purposefully selected subset of Phase One. The Phase One cases (n = 135) are the first degree relatives of end-stage renal disease patients at three Miri haemodialysis centres. The controls (n = 135) are the unaffected, non-genetic relatives of the first degree relatives‘ spouses, pair-matched by age and gender. Quantitative data from anthropometric measurements, laboratory results and a self-administered questionnaire was analysed using descriptive statistics. Multivariable logistic regression, with adjustment for potential confounders, was then applied to identify key associated risk factors. The adjusted odds ratios with 95% confidence interval for chronic kidney disease revealed that although alcohol was found to be protective (0.401 [0.179, 0.898]), being of Malay (5.666 [1.935, 16.593]) or Indigenous (2.347 [1.021, 5.395]) ethnicity, increasing age (1.048 [1.020, 1.076]) and having v metabolic syndrome (3.063 [1.527, 6.142]) predispose participants to developing chronic kidney disease. The adjusted odds ratios with 95% confidence interval for metabolic syndrome revealed significant markers being a first degree relative (2.409* [1.303, 4.454]) and having a family history of cardiovascular disease (2.650# [1.146, 6.130]). The odds of developing metabolic syndrome increase with age (1.027# [1.005, 1.049]), with living in low-cost housing (5.084* [2.301, 11.234]), with a personal history of smoking (3.163* [1.344, 7.442]) and with increasing glucose intolerance: for impaired fasting glucose / impaired glucose tolerance (3.568* [1.790, 7.110]) and being diabetic (14.308* [4.662, 43.915]) (*p<0.01, # p<0.05). The qualitative data gathered from thirty-two in-depth semi-structured interviews was analysed and framework matrices created to explore the intersections between the participants and the themes that emerged. Qualitative themes derived from the interviews, identified lifestyle transitions, health beliefs surrounding traditional practices and herbal medicine, health behaviours
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