Beliefs and attitudes towards intellectual disability ... Malik Volume 1 171111...¢  intellectual disabilities

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  • Beliefs and attitudes towards intellectual disabili ty within the UK

    Pakistani community as perceived by key community m embers

    Amna Malik

    D.Clin.Psy. thesis (Volume 1), 2011

    University College London

  • i

    OVERVIEW

    Part 1 is a literature review investigating South Asian parents' perceptions of their child's

    intellectual disability, its effects on family life and views on service use. Search strategies

    used to identify relevant literature are specified and the results are presented in three

    parts. Firstly, experiences of parents regarding the process of diagnosis and provision of

    support are discussed. Secondly, their perceptions of the causes, symptoms and

    prognosis of their child’s intellectual disability are presented. Lastly, the effects of having a

    child with an intellectual disability on parenting and family life are outlined. The findings

    are then summarised and implications considered.

    Part 2 is a qualitative study designed to address gaps identified in the literature review,

    focusing on the attitudes and beliefs of the Pakistani community in the UK regarding

    intellectual disabilities. The results highlight the importance of taking the views of this

    community in account in implementing current UK policy centred on choice, independence

    and social inclusion for people with intellectual disabilities within a multicultural society.

    The results are followed by a discussion of the findings, where the study’s strengths and

    limitations, implications for policy and service provision are also considered. Finally, a

    direction for future researchers is suggested.

    Part 3 is a critical appraisal detailing personal reflections and considering methodological

    issues which arose during the study.

  • ii

    CONTENTS

    PART 1: LITERATURE REVIEW

    Experience of diagnosis, service provision and beli efs amongst South Asian

    parents of individuals with intellectual disabiliti es………………………………………..1

    ABSTRACT ………………………………………………………………………………………..2

    1. INTRODUCTION ………………………………………………………………………...........3

    1.1. Review Objectives …………………………………………………………………………...4

    1.2. Review Questions ……………………………………………………………………………5

    2. METHODS ……………………………………………………………………………..............5

    2.1. Search strategy ………………………………………………………………………………5

    3. RESULTS………………………………………………………………………………………..8

    3.1. Studies conducted in India…………………………………………………………………..9

    3.1.1. Description of studies ……………………………………………………………………..9

    3.1.2. Summary of findings and limitations of studies……………………………..………..12

    3.2. Studies conducted in Pakistan………………………………………………………….....22

    3.2.1. Description of studies…………………………………………………………………….22

    3.2.2. Summary of findings and limitations of studies………………………………………..24

    3.3. Studies conducted in the UK………………………………………………………………27

    3.3.1. Description of studies ……………………………………………………………………27

    3.3.2. Summary of findings and limitations of studies…………………………………….….30

    4. DISCUSSION………………………………………………………………………………….39

    4.1. Future research ……………………………………………………………………............44

  • iii

    5. REFERENCES...……………………………………………………………………............45

    PART 2: EMPIRICAL PAPER

    Beliefs and attitudes towards intellectual disabili ties in Pakistani culture as

    perceived by key community members…………………………………….…… ………...52

    ABSTRACT………………………………………………………………………………............53

    1. INTRODUCTION……………………………………………………………………………...54

    1.1. Current policies regarding intellectual disabilities in UK………………………………..54

    1.2. Intellectual disabilities amongst South Asians in the UK………………………............55

    1.3. Intellectual disabilities in a Pakistani context……………………………………............57

    1.4. Factors influencing beliefs and attitudes regarding intellectual disabilities…………...60

    1.5. Rationale of the study………………………………………………………………………61

    1.6. Research questions………………………………………………………………………...62

    2. METHODS……………………………………………………………………………………..62

    2.1. Participants…………………………………………………………………………………..62

    2.2. Procedure……………………………………………………………………………………66

    2.3. Materials……………………………………………………………………………………..68

    2.4. Conceptual framework and analysis……………………………………………………...69

    2.5. Credibility checks……………………………………………………………………………71

    2.6. Researcher’s perspective…………………………………………………………............71

    2.7. Ethical considerations………………………………………………………………………72

    3. RESULTS………………………………………………………………………………………72

    3.1. Awareness of intellectual disabilities……………………………………………………...74

  • iv

    3.1.1. Lack of differentiated terms and awareness regarding intellectual disabilities…….74

    3.1.2. Lack of awareness and access to professional support…………………………….76

    3.2. Range of explanatory models……………………………………………………………77

    3.2.1. Biological explanations…………………………………………………………………77

    3.2.2. Environmental explanations……………………………………………………………..78

    3.2.3. Theological explanations………………………………………………………………...78

    3.3. Beliefs about prognosis……………………………………………………………............80

    3.3.1. Hope for ‘normality’ and acceptance………………………………………………….80

    3.3.2. Tragedy and bleak future………………………………………………………...........80

    3.3.3. Worries about marriage………………………………………………………………….81

    3.4. Community responses……………………………………………………………………..83

    3.4.1. Stigma and negative attitudes…………………………………………………………..83

    3.4.2. Sympathy and politeness………………………………………………………………..85

    3.4.3. Inclusion versus exclusion ………………………………………………………………86

    3.4.4. Views on independence…………………………………………………………............88

    3.5. Sources of help…………………………………………………………………………….89

    4. DISCUSSION…………………………………………………………………………............90

    4.1. Strengths and Limitations………………………………………………………………….96

    4.2. Implications………………………………………………………………………………….99

    4.3. Future research ……………………………………………………………………..........100

    5. REFERENCES……………………………………………………………………………....101

  • v

    PART 3: CRITICAL APPRAISAL…………………………………………………………….1 09

    INTRODUCTION……………………………………………………………………………….110

    1. PERSONAL REFLECTIONS ON THE STUDY PROCESS……………………..........110

    1.1. Development of the study…………………………………………………………..........110

    1.2. Being a researcher with a Pakistani background………………………………………110

    1.3