Parental engagement in caring for and educating children with disabilities in a western region of Nepal: Experiences and perspectives of parents and professionals by Kamal Prasad Pokhrel (Sharma) Thesis Submitted to Flinders University for the degree of Doctor of Philosophy (PhD) College of Education, Psychology and Social Work February 2020 Dedication To my late father Humlal Pokhrel and mother Mina Kumari Pokhrel ii Contents Dedication .................................................................................................................................... i Contents ..................................................................................................................................... iii Lists of tables and figures ........................................................................................................... vii Tables ................................................................................................................................................ vii Figures ............................................................................................................................................... vii Summary .................................................................................................................................. viii Declaration .................................................................................................................................. x Acknowledgements ..................................................................................................................... xi The Beam ......................................................................................................................................... xiii CHAPTER 1 - INTRODUCTION: SETTING THE SCENE ........................................................................ 1 1.1 Introduction ................................................................................................................................... 1 1.2 Background to the research .......................................................................................................... 2 1.3 Purpose of the research ................................................................................................................ 7 1.4 Research questions ....................................................................................................................... 7 1.4.1 Main question ........................................................................................................................ 7 1.4.2 Sub-questions ......................................................................................................................... 8 1.5 Need for/significance of the research ........................................................................................... 8 1.6 Structure of the thesis .................................................................................................................10 1.7 A priori reflection: My own story and impetus for the research ................................................11 CHAPTER 2 - LITERATURE REVIEW: MAPPING THE TERRITORY ..................................................... 16 2.1 Chapter introduction ...................................................................................................................16 2.2 Conceptualising disability, inclusion and education ...................................................................16 2.2.1 Making sense of disability ....................................................................................................16 2.2.2 Perspectives about disability ................................................................................................18 2.2.3 Inclusion and the role of education in promoting inclusion ................................................22 2.2.4 Different approaches to the provision of special needs education in Nepal .......................25 2.3 Parents’ experiences of raising their children with disabilities ...................................................28 2.3.1 Stress and challenges ...........................................................................................................29 2.3.2 Resilience and coping strategies ..........................................................................................31 2.3.3 School choice and educating experiences ............................................................................34 2.4 Parental engagement ..................................................................................................................35 iii 2.4.1 Different uses of terms: Participation, involvement and engagement ................................35 2.4.2 Parental engagement in special needs education ...............................................................37 2.4.3 Goals/focus of parental engagement ...................................................................................39 2.4.4 A historical account of parental engagement in Nepal ........................................................42 2.4.5 Research on parental engagement in Nepal ........................................................................44 2.4.6 Determinants of (enablers of and barriers to) parental engagement .................................48 2.4.7 Theoretical models for engaging parents.............................................................................53 2.4.8 Practical strategies for promoting parental engagement ....................................................59 2.5 Chapter summary ........................................................................................................................61 CHAPTER 3 - METHODOLOGY AND METHODS: EXPLORING PARENTAL ENGAGEMENT THROUGH RELATIONAL-CENTRED INQUIRY ............................................................................................... 63 3.1 Introduction .................................................................................................................................63 3.2 Qualitative methodology .............................................................................................................63 3.2.1 Relational-centred research .................................................................................................64 3.2.2 Incorporation of a narrative approach within relational research ......................................65 3.2.3 Ontological and epistemological orientation of the research..............................................67 3.3 Methods guiding the research process .......................................................................................68 3.3.1 Research settings ..................................................................................................................68 3.3.2 Research participants/co-researchers..................................................................................69 3.3.3 Participant selection procedure ...........................................................................................70 3.3.4 Language and recording conversations ................................................................................79 3.3.5 Data-gathering process ........................................................................................................79 3.3.6 Data analysis .........................................................................................................................82 3.3.7 Ethical issues.........................................................................................................................85 3.4 Chapter summary ........................................................................................................................87 CHAPTER 4 - CASE-FOCUSED PORTRAYALS: THE UNIQUE EXPERIENCES OF PARENTS OF DIVERSE ETHNIC/CASTE BACKGROUNDS IN NEPAL ................................................................................. 88 4.1 Chapter introduction ...................................................................................................................88 4.2 Daya .............................................................................................................................................89 4.2.1 Background ...........................................................................................................................89 4.2.2 Early childhood .....................................................................................................................90 4.2.3 Schooling ..............................................................................................................................92 4.3 Bel Bahadur .................................................................................................................................95 4.3.1 Background ...........................................................................................................................95 iv 4.3.2 Childhood .............................................................................................................................96 4.3.3 Schooling ..............................................................................................................................98 4.3.4 Post-school options ..............................................................................................................98 4.4 Anish ..........................................................................................................................................100