Understanding Health-Seeking Behaviours of People in Indonesia

Understanding health-seeking behaviours of people in Indonesia; and developing, piloting, and evaluating a culturally appropriate intervention for people with diabetes Anna Wahyuni Widayanti A thesis submitted for the degree of Doctor of Philosophy at the University of Otago Dunedin, New Zealand June 2018 ii Abstract Indonesia is facing a dual burden of communicable and non-communicable diseases. Childhood-immunisation coverage is lower than most countries in Southeast Asia, with vaccine-preventable disease outbreaks frequently reported. Prevalences of non-communicable diseases are also rising, including type 2 diabetes. Diabetes is further linked to tuberculosis and stunting - health problems which remain common in Indonesia. Understanding people’s health behaviour is an important step to establishing effective interventions. In Indonesia, a multicultural country with multiple health providers, health-related behaviour is more complex as. I aimed to improve outcomes related to child immunisation or diabetes through implementing an intervention based on understanding people’s health behaviour. Two stages of studies were conducted. A qualitative study explored the perceptions, beliefs and behaviour of diverse communities in relation to child immunisation and diabetes. Six focus groups involving 53 mothers and six focus groups involving 45 people with diabetes were performed in West Sumatera and East Nusa Tenggara. Recorded discussions were transcribed, translated, and analysed for common themes. For child immunisation, themes underlined the role of fathers and community- based health workers in influencing mothers’ behaviour. Issues related to Posyandu (an outreach programme for mother and child health) including lack of financial support, and potential missed opportunities were highlighted. Diabetes patients’ behaviour in managing the disease was prompted by the individual lay evaluation of the disease and its treatment, a process influenced by family and peers with diabetes. This process changed the appeal and acceptability of specific health services. Further, cultural beliefs, family and community support challenged people with diabetes in practising self-management behaviours. This qualitative work on diabetes revealed a complex situation contributing to late diagnosis, uncontrolled blood glucose, and prevalent diabetes-related iii complications. Therefore, while acknowledging the importance of child immunisation, I subsequently focused on diabetes. Informed by the literature review and qualitative work, a quasi-experimental pilot study was developed and conducted in Kupang, East Nusa Tenggara. Usual care was compared to an intervention consisting of ten sessions of weekly group activities including education, exercise, and healthy snacking, conducted in collaboration with primary health centres (PHCs). Sixty-seven participants were recruited from four PHCs, and were allocated into groups (intervention: 36; control: 31) based on the PHCs they were registered in. Participants were 60% female, mean age 57, and had diabetes for an average of 4.5 years. Groups did not differ at baseline. Counter to prediction, no effects of the group-based intervention over usual care were observed. However, both groups made statistically significant improvement in HbA1c (intervention improved from 8.26%±1.89 to 7.84%±1.82; control from 8.35%±2.60 to 7.95%±2.53). Exploratory analyses found more intervention than control participants achieved an HbA1c reduction of 0.5% (43% compared to 31%). The intervention appears to have provided a positive impact through stimulating local healthcare providers to more intensively manage their diabetes patients, including the control group. These findings are important for government and related stakeholders in managing health problems related to child immunisation and diabetes. Tailored interventions – based in socio-cultural context – to influence behaviour should be established, to improve child immunisation uptake and diabetes patients’ outcomes. iv Acknowledgements In the name of Alloh, the Most Gracious and the Most Merciful, all praise to Alloh for the strength and His blessing in completing this thesis. Immeasurable thanks and appreciation are due to all those who assisted and supported me through this endeavour. First and foremost, Professor Pauline Norris, my primary supervisor, for accepting me to be her student, for continuous support, invaluable motivation, enthusiasm, and immense knowledge. Dr. Susan Heydon, my co-supervisor, for fruitful suggestions which have widened my perspectives, and for continuous encouragement, motivation, and personal support. Dr. James Green, for worthwhile recommendations and for assisting me in statistical matters. I am very grateful to have him as my co-supervisor, and I am always impressed by his ideas. Dr. Shakila Rizwan, my facilitator, for her encouragement and personal support during my programme. I would like to express my gratitude to my thesis examination committee. Associate Professor Bruce Russell, my convener, for organising the thesis examination process. Associate Professor Kay Stewart, Professor Sri Suryawati, and Dr. Alesha Smith, my examiners, for giving me detailed insightful comments which have helped me greatly in making this thesis better. v This thesis would not have been possible without the scholarship provided by the New Zealand Government through the New Zealand ASEAN Scholars Awards. I am thankful to the scholarship team and student advisers, Claire Slocombe, Gepke Schouten, Rebecca Guest, and Donna Scott for personal support and advice during my stay in Dunedin. I share the credit of my work with all participants involved in the study. I am grateful for those who have technically supported and enhanced my work during the data collection processes. Bapak Marselinus Laga Nur, SKM., M.Kes., a lecturer at the Faculty of Public Health Universitas Nusa Cendana Kupang, and Ibu Maria Hilaria, S.Farm., Apt., M.Si., a lecturer at Politeknik Kemenkes Kupang, for connecting me with research assistants and local communities in East Nusa Tenggara. Bapak Syofyan, S.Si., M.Farm., Apt., a lecturer at the Faculty of Pharmacy Universitas Andalas Padang for assisting me in collecting data in West Sumatera. Health professionals in Puskesmas Oepoi, Puskesmas Kota Ruteng, Puskesmas Naras, and Puskesmas Ulak Karang, for immeasurable help during qualitative data collection process. Prolanis teams in Puskesmas Oepoi led by Mas Muhamad Zainudin, S.Kep., Ns., Puskesmas Oebobo led by Mba Sri Herlin Ernawati, S.Kep., Ns., Puskesmas Sikumana led by Ibu Maria Angela Gonsalves, Amd. Kep., and LKC health centre led by Mba Ria Ruslan, Amd. Kep., for fully supporting and welcoming the intervention project. Ibu Maria Sambriong, SST., MPH., and Ibu Margareta Teli, S.Kep., Ns., M.Sc.PH., academic staff at Politeknik Kemenkes Kupang, for delivering some educational and exercise sessions. vi Research assistants, Garline Mooy, Lilyen Sede, Patricia Djerabat, Susana Yongsi, Ronny Sasko, Fadli, M. Fariz Permana, Jeni L. Londa, Elisabeth V. Fanggidae, Regina Duba Nyanyi, Irma Fallo, Ansgarius Gantur, Arifin Umbu Damu, Jessy Z.H. Moata, Robertus Lali, Yunita Mboeik, and Yeni Hege Udju for helping me in collecting data and guiding me in enjoying the beauty of the provinces. Staff at the clinical laboratory Prodia Kupang, for assistance in blood sampling and HbA1c testing. My newly-met friends in Kupang, Mba Umi Kalsum, and Radiah Kurniati, for letting me live in their house at no cost. I would like to thank to all people around me for helping and supporting me in doing the programme. Lea Doughty for proof-reading the thesis. Aly Diana, Fachry Ramadyan, Reza Pahlevi, and Saras Siti Nur Miawati for assisting me in the translation process. My roommates at ‘The Barn’: Eeva-Katri Kumpula, Lea Doughty, Rakhee Raghunandan, Noni Richards, Amber Young, Patti Napier, for personal support and encouragement. To Indonesian postgraduate students at the University of Otago, and Indonesian community in Dunedin for food sharing and relieving my homesickness. I am also thankful to the School of Pharmacy, University of Otago including all the academic and administrative staff for providing positive learning environment. Immeasurable thanks also go to Faculty of Pharmacy, Universitas Gadjah Mada for providing me an opportunity to conduct the doctoral programme. vii Last but not least, my deepest gratitude goes to my family in Indonesia. My mum Ibuk Ropingah, and my Dad Bapak Tuniman for continuous prayers and thought. My brothers and sisters-in-law Cahya Budi Hermanto, Anis Sawayaningsih, Arif Widhi Sasongko, Adelia Ajeng Pramesti for availability in helping me any time when I needed. My parents-in-law Ibu Nurhayati, and Bapak Maryono for continuous support. viii I dedicate this thesis to my husband, Nugroho Waskito, for his remarkable patience and unwavering love and support throughout this life journey, and for the countless days of daddy day-care to our beloved son, Bimo. ix x Table of contents Abstract ………………………………………………………………………………………………………... iii Acknowledgements ……………………………………………………………..…………………………. v Table of contents …………………………………………………………………………………………… xi List of tables ………………………………………………………………………………………………….. xv List of figures …………………………………….………………………………………………………… xvii List of abbreviations……………………………………………………………………………………… xxi Glossary …………………………………………………..………………………………………………… xxiii Section A – Introduction and literature review 1 Chapter 1: Introduction .........................................................................................................

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