UNIVERSITY OF SOUTHAMPTON FACULTY OF HEALTH SCIENCES Volume 1 of 1 STAKEHOLDER PERSPECTIVES TOWARDS SCHIZOPHRENIA CARE AT THE SUB-DISTRICT LEVEL IN RURAL THAILAND by Boonthan Kingsaiyhod Thesis for the degree of Doctor of Philosophy May 2016 UNIVERSITY OF SOUTHAMPTON ABSTRACT FACULTY OF HEALTH SCIENCES Thesis for the degree of Doctor of Philosophy STAKEHOLDER PERSPECTIVES TOWARDS SCHIZOPHRENIA CARE AT THE SUB-DISTRICT LEVEL IN RURAL THAILAND Boonthan Kingsaiyhod For the period 2012-2016, the Thai 11th National Health Development Plan focuses on the accessibility and equity of mental health care by using community collaborations in order to ‘strengthen and empower the sub-district health system’. In reality, demands and supply should be balanced, based on available resources. Therefore, including the patients’, caregivers’ and health care providers’ perspectives for schizophrenia care improvement is considered helpful to gain an in-depth understanding of the community mental health nursing care situation; this endeavour is aimed at improving mental health nursing practices, based on available resources. There has been no previous research exploring stakeholders’ perspectives of care at the primary level in the rural Thai community. This qualitative study aims to provide an in-depth understanding of both service users’ and service providers’ views. Semi-structured interviews were carried out with 40 participants within three groups, which involved patients with schizophrenia, their caregivers, the primary care staff in the community, and the supervisory teams in the community and psychiatric hospitals. Interviews were transcribed verbatim, translated into English and analysed using thematic analysis. Each group of participants was analysed individually to provide specific and integrated themes. Three key areas relating to all three groups are 1) the lived experience, 2) the importance of medication and 3) the service and support needs. The results illustrate the complexity of the Thai situation, due to poverty within a rural environment and conflicting views regarding the need to move away from a biomedical model of care. The results will be used to inform community mental health nursing practice and education in Thailand. Contents ABSTRACT ................................................................................................................................ i Contents ................................................................................................................................... i List of tables ........................................................................................................................ix List of figures ......................................................................................................................xi DECLARATION OF AUTHORSHIP ............................................................................. xv Acknowledgements ...................................................................................................... xvii Definitions and Abbreviations ............................................................................... xix 1. Chapter 1 Introduction ......................................................................................... 1 1.1 Schizophrenia care as the study focus ......................................... 1 1.2 My interest and background ....................................................... 2 1.3 Conducting the study in rural Thai community settings............... 3 1.3.1 Rural definition ........................................................................... 3 1.3.2 The importance of rural settings ................................................. 4 1.3.3 Culture and the cultural impact on health ................................... 5 1.4 The current Thai health care system and schizophrenia care ....... 6 1.5 Structure of the thesis ................................................................. 7 2. Chapter 2 Schizophrenia background ......................................................... 9 Introduction ................................................................................................ 9 2.1 Finding relevant evidence ........................................................... 9 2.2 A brief history of schizophrenia ................................................ 11 2.3 Incidence and prevalence rates ................................................. 12 2.4 The causes of schizophrenia ..................................................... 12 2.4.1 People’s general perspectives towards the causation of schizophrenia .......................................................................................... 12 2.4.2 Scientific perspectives towards schizophrenia causation ........... 15 2.4.2.1 Genetic factors ..................................................................... 15 2.4.2.2 Environmental factors .......................................................... 16 2.4.2.3 Brain and neurotransmitters ................................................. 18 2.4.3 Psychosocial perspectives ......................................................... 19 2.4.3.1 Child development and family relationships ......................... 19 2.4.3.2 Life-events ........................................................................... 20 2.4.3.3 Socio-cultural factors ........................................................... 21 2.4.4 Schizophrenia’s triggers and other risk factors ......................... 21 i 2.5 Diagnostic criteria ..................................................................... 22 2.5.1 The International Classification of Diseases 10 (ICD 10) ............ 22 2.5.2 Diagnostic and Statistical Manual of Mental Disorders 5 (DSM 5)22 2.5.3 Diagnostic criteria: ICD and DSM systems in Thailand ............... 23 2.5.4 Limitations of ICD 10 and DSM 5 ............................................... 23 2.5.5 Accuracy of diagnosis: schizophrenia comorbidity..................... 24 2.5.6 Current debates about schizophrenia around the world ............ 25 2.5.6.1 Antipsychiatry movement ..................................................... 25 2.6 The impact of schizophrenia ..................................................... 26 2.6.1 Impacts on patients ................................................................... 26 2.6.1.1 Cognitive function ................................................................ 27 2.6.1.2 Social function ..................................................................... 27 2.6.1.3 Occupational dysfunction ..................................................... 27 2.6.1.4 Physical health impacts ........................................................ 28 2.6.1.5 Social impacts ...................................................................... 29 2.6.2 Impacts on health systems and countries .................................. 30 2.7 Schizophrenia treatments .......................................................... 31 2.7.1 Schizophrenia beliefs and its treatments ................................... 31 2.7.1.1 Neurobiological model (medical model) ................................ 31 2.7.2 The bio-psychosocial model ...................................................... 33 2.7.3 Schizophrenia is a recurring and long term condition ................ 34 2.7.4 Recovery from schizophrenia .................................................... 34 2.8 Conclusion ................................................................................ 35 3. Chapter 3 Literature review: stakeholder experiences and perspectives towards schizophrenia care in community settings ......................................................................................................................................... 37 Introduction .............................................................................................. 37 3.1 Finding relevant evidence .......................................................... 37 3.1.1 Developing the focal points for a literature review ..................... 37 3.1.2 Search strategies and article selection ....................................... 38 3.1.1 Characteristics of selected articles ............................................ 40 3.2 The experiences of patients with schizophrenia, their caregivers, and health personnel, regarding living with and caring for people with schizophrenia at the primary care level .............................. 42 3.2.1 The perspectives of patients with schizophrenia: community experiences regarding living with schizophrenia ...................................... 42 3.2.2 Caregivers’ perspectives: community experiences regarding caring for patients with schizophrenia. .................................................... 43 3.2.2.1 Living with/ caring for schizophrenia causes difficulties ....... 44 ii 3.2.2.2 Caregivers’ backgrounds ...................................................... 44 3.2.3 Caring and coping strategies .................................................... 46 3.2.4 Care providers’ perspectives ..................................................... 49 3.2.4.1 Knowledge and skills ........................................................... 49 3.2.4.2 Mental health policy and primary care staff beliefs ............... 50 3.3 The needs of patients with schizophrenia, their caregivers and health personnel for schizophrenia care at the primary care level ................................................................................................. 52 3.3.1 Patients’ needs ........................................................................