This file is part of the following reference: Nurjannah, Intansari (2014) Connecting care for individuals living with a mental health issue in Indonesia: a grounded theory study. PhD thesis, James Cook University. Access to this file is available from: http://researchonline.jcu.edu.au/39156/ The author has certified to JCU that they have made a reasonable effort to gain permission and acknowledge the owner of any third party copyright material included in this document. If you believe that this is not the case, please contact Connecting Care for Individuals Living with a Mental Health Issue in Indonesia: A grounded theory study Intansari Nurjannah, BSN, MNSc For the Degree of Doctor of Philosophy School of Nursing, Midwifery & Nutrition James Cook University February, 2014 Supervisory Team Jane Mills (Principal Supervisor) Kim Usher (Supervisor) Tanya Park (Supervisor) STATEMENT OF ACCESS I, the undersigned, the author of this thesis, understand that James Cook University Library, by microfilm or by other means, allows access to users in other approved libraries. All users consulting this thesis will have to sign the following statement: “In consulting this thesis, I agree not to copy or closely paraphrase it in whole or part without the consent of the author; and to make proper written acknowledgement for any assistance, which I have obtained from it”. Beyond this I do not wish to place any restriction on access to this thesis. Signed Date: 26 February 2014 i STATEMENT OF SOURCES DECLARATION I declare that this thesis is my own work and had not been submitted in any form for another degree or diploma at any university or other institution of tertiary education. Information derived from the published, unpublished or oral work of others has acknowledged in the text and a list of references is given. Signed Date: 26 February 2014 ii STATEMENT OF CONTRIBUTION OF OTHERS Nature of Assistance Contribution Names, Titles and Affiliations of Co-contributors Intellectual support The supervisory team provided Associate Professor Jane Mills, assistance with proposal writing School of Nursing, Midwifery & and data analysis within the Nutrition, James Cook remit of their roles as described University in the policy The Role of the Professor Kim Usher, School of Advisory Panel in Providing Health, University of New Regular Guidance and Support England to Research Students. Dr Tanya Park, School of Nursing, Midwifery & Nutrition, James Cook University Editorial assistance was provided Ms Marnie Hitchins, School of to the candidate by both the Nursing, Midwifery & Nutrition, supervisory team and James Cook University professional editors. Proof Phillip Thomas, Editing and reading was restricted to Proof-Reading Services, 38 correcting the presentation of the Gosfield Crescent Hampstead text to conform with standard Gardens S.A 5086 usage and conventions. Provision of advice in the matters of structure, conventions of grammar and syntax, use of clear language, logical connections between phrases, clauses, sentences, paragraphs and sections, voice and tone and repetition. Financial support Field research Australian Development Scholarships Stipend School of Nursing, Midwifery and Nutrition, JCU Graduate Research School, JCU Preparation before data Checking the accuracy of Ramlah Staines. generation Indonesian translation for Certified interpreter informed consent and 21B Trucano Close, information sheet Whitfield, Cairns 4870 Data generation and analysis Interview transcription and Amin Basuki, English teacher, translation, including back Faculty of Cultural Sciences, translation Gadjah Mada University Indonesia Thomas Harding, Certified translator, Indoeasy Language Service, 8 Market Street, Kensington Vic 3031, Australia iii ACKNOWLEDGEMENTS There are many people, colleagues and friends who contributed to the development and completion of this PhD thesis through their time, encouragement, support and advice. I am indebted to Associate Professor Jane Mills, Professor Kim Usher and Doctor Tanya Park who have spent their time and energy supervising me over the past three years. I consider myself to be a very lucky person who was supervised by persons who are experts in their fields. They were also very patient in their support of me at each stage of my PhD study. Their encouragement, support and advice enabled me to realise my potential and become a better person. In particular I became more confident doing research and publishing my findings. I would like to express my deep and sincere appreciation to the psychiatric hospital directors, Health Department directors, Social Service Department directors in Yogyakarta Special Province and Central Java and the owner of a private shelter, for giving me permission to conduct my study on their premises. My appreciation is also extended to the staff in these institutions for their cooperation and support. My sincere appreciation is also extended to the participants in this study for sharing their time, feelings, ideas and thoughts. This provided me with a great experience and helped me to grow and enrich my knowledge. Finally, I would like to thank my family, friends and colleagues for their support and understanding throughout my candidature, especially students from Indonesia who are studying at JCU. Staying in Australia with them enabled my family to stay close to Indonesian culture and this brought me much happiness. Thanks to Alexander Salvador who was always ready to help me and my family. Thanks to Marnie Hitchins for her wonderful job in editing my thesis. Last but not least, thanks to my husband, Yulistianto, for his never-ending support and understanding. Finally, I would also like to thank my sons, Diqi and Isa, for their love and understanding when their ‘Mummy’ had such a busy time. Thanks to all of you; I managed to keep my spirit alive in my PhD journey and for the future. Thank you. iv ABSTRACT Mental health services are not a priority in the Indonesian health system. Insufficient resources are allocated, resulting in shortfalls in key performance indicators for mental health services. Overall, facilities and human resources are inadequate which means that mental health services do not function at their best. The impact of these inadequacies can be seen when individuals living with a mental health issue experience the ‘vicious cycle’ of a ‘revolving door’ between psychiatric institutions and the community. Individuals living with a mental health issue wander on the streets - a visible consequence of an inadequate mental health system. In extreme cases, shackling (or other physical restraint) of individuals living with a mental health issue occurs because the family cannot afford the cost of treatment. To date, there has been little research undertaken in Indonesia that investigates the way in which mental health care is delivered. The aim of this grounded theory study was to generate a theoretical model of collaborative care for individuals living with a mental health issue in Indonesia. The findings will contribute to the evidence base concerning the provision of mental health care in this country. Data were collected during three field trips between 2011 and 2012. Forty-nine participants were interviewed including health professionals and non-health professionals, individuals living with a mental health issue, cadres (a term that in Indonesia refers to mental health volunteers), families and community leaders. The interviews were recorded and transcribed in Indonesian before being analysed using grounded theory methods of concurrent data collection and analysis: initial, intermediate and advanced coding and theoretical sampling. The grounded theory of connecting care for individuals living with a mental health issue explains in part how mental health care is delivered in Indonesia. The core category was connecting care. Three categories were constructed in the development of this theory and these categories are decision-making, shifting responsibility and accepting responsibility. Of these three categories, decision-making was found to be central to the provision of care by health professionals and non-health professionals. Decision-making is characterised by four properties, v each one of which influences individual stakeholders to varying degrees. These properties are level of resources; competency of the individual to provide care; willingness to provide care; and compliance with official policies. When making a decision, stakeholders such as doctors, nurses, carers and family members, will either shift responsibility or accept responsibility to provide care. The success and effectiveness of shifting responsibility is largely influenced by the quality of communication between stakeholders. Accepting responsibility is influenced by resources, competency and willingness. The most influential factor for health professionals is following the rules of institutional policy when they make decisions about whether to shift or accept responsibility to provide care. Decision-making for non-health professionals, however, is influenced more heavily by personal circumstances. These circumstances include competence, willingness, resources and compliance with policy. Negotiations between health professionals and non-health professionals about the provision of care can result in either matched or unmatched decision-making. Matched decision-making leads to the unforced acceptance of responsibility and results in optimum health outcomes. Unmatched decision-making can result in health professionals and non-health professionals (especially families) being forced to provide a level of care that exceeds their competency and resources. Unmatched decision-making also results in individuals being forced into psychiatric institutions for unnecessarily long periods of time. Forced acceptance of responsibility leads to adverse health outcomes and can increase the risk of human rights violations and the burden of care. Several recommendations arise from this study. The first recommendation is that the Indonesian Government should establish a mental health act and accompanying regulations to serve as a guideline for all stakeholders who make decisions to shift or accept responsibility for care. The second recommendation is to apply a series of strategies aimed at reducing families’ burden of care. These strategies include providing social networks (groups) for families and providing education for non-health professionals, such as community members, to help them better understand mental health and the needs of consumers. Mental health services, both in psychiatric institutions and in the community, also need to be more accessible to individuals vi living with a mental health issue and for their families. The provision of financial support for individuals living with a mental health issue and their families is also crucial. The final strategy proposed is that the Indonesian Government provides an increased and adequate number of competent health professionals to meet the needs of individuals living with mental health issues and their families in the community. This grounded theory explains the process of collaborative care for individuals living with a mental health issue. The product of this grounded theory study also can explain the three phenomena that prompted this study: the vicious cycle of the revolving door for people with mental illness, wandering cases and shackling (or other physical restraints). It is hoped that the theory of connecting care can be used as a framework to improve mental health service delivery in Indonesian cities, towns and regions with a subsequent improvement in patient outcomes. vii Table of Contents STATEMENT OF ACCESS ....................................................................................................... I STATEMENT OF SOURCES DECLARATION .................................................................... II STATEMENT OF CONTRIBUTION OF OTHERS ............................................................ III ACKNOWLEDGEMENTS ..................................................................................................... IV ABSTRACT ................................................................................................................................. V CHAPTER ONE: INTRODUCTION ........................................................................................ 1 Research aim ................................................................................................................... 2 Purpose of the research .................................................................................................... 2 Grounded theory research design .................................................................................... 3 Study setting .................................................................................................................... 5 Background ...................................................................................................................... 8 Outline of the thesis ....................................................................................................... 12 Chapter summary ........................................................................................................... 14 CHAPTER TWO: BACKGROUND ....................................................................................... 15 Introduction ................................................................................................................... 15 Manuscript: Discharge planning in mental health care: an integrative review of the literature ................................................................................................................................... 19 Indonesia’s mental health services ................................................................................ 30 Human rights and mental health legislation in Indonesia ............................................. 39 Lay people providing care ............................................................................................. 45 The burden of care ......................................................................................................... 46 Chapter summary ........................................................................................................... 47 CHAPTER THREE: METHODOLOGY AND METHODS ................................................ 49 Position of the researcher .............................................................................................. 49 viii