Performing Allah's work: experiences of Muslim family carers in Britain. PhD thesis, University of No

438 Pages·2017·1.83 MB·English

by  Christine Middleton

PERFORMING ALLAH’S WORK: 
EXPERIENCES OF MUSLIM 
FAMILY CARERS IN BRITAIN 

Sarah Kristie Noël Buckman 

Thesis submitted to the University 
of Nottingham for the degree of 
Doctor of Philosophy 

July 2011
ABSTRACT

This thesis explores how Muslim family carers of chronically ill or
disabled family members in Britain perceive, perform and negotiate their
caring role. Drawing on data collected from forty-three semi-structured
interviews, this thesis shows that although Muslim family carers are not
a homogenous group; perceptions, performances and negotiations of
care within the family are often mediated through a Muslim religious
lens. This manifests itself in three predominant ways explored in this
thesis. Firstly, Muslim religious beliefs act as a ‘sacred canopy’ through 
which carers draw comfort and spiritual meaning for both their caring
role and the illness and disability of the cared for relative. Secondly,
certain state services are deemed as particularly problematic for
upholding Muslim religious identities. Whilst health services are
positively received, social services often are deemed as ‘dangerous’ 
and potentially threatening to family honour (izzat). This is particularly
pertinent for carers of females with learning disabilities. Thirdly, Muslim
religious and cultural beliefs maintain traditional gendered perceptions
of caregiving within the family, often with very little support from outside
organisations. This thesis also argues that Muslim carer support
organisations use interesting and innovative methods of engaging
Muslim family carers as a form of ‘bridging social capital’ to health and 
social services.

2
ACKNOWLEDGEMENTS

This academic journey has taught me many things. Perhaps my most
important lesson has been to observe the incredible and humbling ways
in which human beings care for each other. I would like to take this
opportunity to thank the people who have cared for me throughout this
process.

To begin with, thanks go to the inspiring people I interviewed, for giving
their time so generously, and to the interpreters who were
compassionate and professional in the interviews they were involved
with. Thanks also go to the four carers’ organisations who allowed me
access to most of my respondents.

I would also like to thank the Centre for Social Research in Health and
Health Care for funding this project.

Academically and intellectually I would like to thank two sets of
supervisors: Dr Paul Bissell and Dr Alan Aldridge who supported me in
the beginning stages of this research, and subsequently Dr Andrew Yip
and Dr Alison Edgley, whose encouragement and advice guided me
through to the end.

Special thanks go to both Dr Anna Williams for her friendship and
support, and to my brother, Robert Buckman, for his wise words and
guidance.
3
Finally, and most importantly, thanks goes to two very special people
whose unwavering care for me has been overwhelming. Firstly, to my
Mum, Roberta Buckman, for always being there for me whenever I
needed it most. And to Benjamin Cahn, for carrying with him a ‘care 
map’ for me, wherever he was in the world; talking through my 
academic conundrums between curtain calls, in the middle of the night,
and for making sure I ate three meals a day.

4
LIST OF CONTENTS

ABSTRACT ...................................................................................................................... 2 
ACKNOWLEDGEMENTS .................................................................................................. 3 
LIST OF CONTENTS ......................................................................................................... 5 
LIST OF TABLES ............................................................................................................. 10 
LIST OF FIGURES ........................................................................................................... 10 
CHAPTER ONE: INTRODUCTION................................................................................... 11 
1.1 INTRODUCTION .................................................................................................. 11 
1.2 THE EMERGENCE OF A RESEARCH IDEA: CHALLENGING PRECONCEPTIONS AND 
ASSUMPTIONS ......................................................................................................... 16 
1.3 ENTERING THE FIELD FOR THE FIRST TIME: LESSONS FROM A SMALL RESEARCH 
PROJECT ................................................................................................................... 19 
1.4 THESIS OUTLINE ................................................................................................. 21 
CHAPTER TWO: RELIGIOUS BELIEF, CAREGIVING, AND NEGOTIATING NETWORKS OF 
SUPPORT: A CRITICAL REVIEW OF LITERATURE ........................................................... 27 
2.1 INTRODUCTION .................................................................................................. 27 
2.2 PERCEIVING RELIGION: ‘LIVED’ RELIGION, WEBER’S THEODICY AND THE 
QUR’ANIC RESPONSES TO ILLNESS AND DISABILITY ................................................ 30 
2.2.1 VALUING THE PRIVATE, EVERYDAY AND ‘LIVED’ RELIGIOUS EXPERIENCE . 31 
2.2.2 THE APPLICATION OF THEODICY TO MUSLIM BELIEFS ABOUT SUFFERING, 
DISABILITY AND CARE .......................................................................................... 41 
2.2.3 EXAMINING INTERPRETATIONS OF ILLNESS AND DISABILITY IN THE QUR’AN
 ............................................................................................................................. 47 
2.2.4 SUMMARY ................................................................................................... 50 
2.3 DOING CARE: PERCEPTIONS, PERFORMANCE AND ACCESSING SERVICES ........ 52 
2.3.1 EXPLORING CARE WITHIN THE CONTEXT OF THE FAMILY, GENDER, 
ETHNICITY AND RELIGION .................................................................................... 53 
2.3.2 EXPLORING THE DIVERSE EXPERIENCES OF ILLNESS AND DISABILITY ........ 67 
2.3.3 PURITY AND POLLUTION: QUESTIONING THE POTENTIAL MOCHADI FOR 
MUSLIMS IN BRITAIN ........................................................................................... 71 
2.3.4 SUMMARY ................................................................................................... 75 
2.4 NEGOTIATING FAMILIES, TIES AND KINSHIP GROUPS: EMPLOYING SOCIAL 
CAPITAL TO CONTEXTUALISE THE EXPERIENCE OF CAREGIVING ............................ 76 
2.4.1 THE EMERGENCE OF SOCIAL CAPITAL AS A CONCEPT FOR 
UNDERSTANDING RELATIONSHIPS WITHIN AND BETWEEN GROUPS ................. 78 
5
2.4.2 SOCIAL CAPITAL: CARE, ETHNICITY, AND RELIGION ................................... 85 
2.4.3 SUMMARY ................................................................................................... 90 
2.5 CONCLUSION ..................................................................................................... 90 
CHAPTER THREE: METHODOLOGY............................................................................... 92 
3.1 INTRODUCTION .................................................................................................. 92 
3.2 EPISTEMOLOGICAL POSITIONING ...................................................................... 93 
3.3 CHOOSING THE RESEARCH METHOD ................................................................ 98 
3.4 SAMPLING AND ACCESS ................................................................................... 102 
3.4.1 ‘DON’T BE TOO FORMAL, ACT LIKE YOU’VE KNOWN THEM FOR YEARS’ . 106 
3.4.2 RESEARCHING THE OVER‐RESEARCHED ................................................... 110 
3.4.3 A DISCUSSION ABOUT CONSENT FORMS ................................................. 113 
3.5 SUMMARY OF THE FOUR CARER SUPPORT ORGANISATIONS ACCESSED ....... 117 
3.5.1 ORGANISATION A...................................................................................... 118 
3.5.2 ORGANISATION B ...................................................................................... 119 
3.5.3 ORGANISATION C ...................................................................................... 120 
3.5.4 ORGANISATION D ..................................................................................... 121 
3.6 CARRYING OUT THE INTERVIEWS .................................................................... 122 
3.7 DATA ANALYSIS ................................................................................................ 129 
3.8 ETHICAL CONSIDERATIONS .............................................................................. 132 
3.8.1. INFORMED CONSENT ............................................................................... 132 
3.8.2 CONFIDENTIALITY ..................................................................................... 134 
3.8.3 DISSEMINATION OF FINDINGS .................................................................. 135 
3.8.4 SECURING THE DATA ................................................................................ 135 
3.9 REFLECTIONS ON THE RESEARCH PROCESS ..................................................... 136 
3.9.1 REFLEXIVITY AND ETHNOGRAPHIC METHODOLOGY ................................ 137 
3.9.2 THE RESEARCHER’S STORY ........................................................................ 140 
3.9.3 REFLECTIONS ON INSIDER/OUTSIDER RESEARCH: EMOTION, CROSS‐
CULTURAL RESEARCH AND GENDER .................................................................. 141 
3.9.4 SUMMARY ................................................................................................. 151 
3.10 INTERVIEWING GATEKEEPERS ....................................................................... 151 
3.11 SUMMARY ...................................................................................................... 155 
CHAPTER FOUR: PERFORMING ALLAH’S WORK: PERCEIVING AND EXPERIENCING THE 
RELIGIOUS NATURE OF CARE ..................................................................................... 156 
4.1 INTRODUCTION ................................................................................................ 156 
4.2 BIOGRAPHICAL DATA OF THE RESPONDENTS ................................................. 158 
6
4.3 PERFORMING ALLAH’S WORK: PERCEIVING AND EXPERIENCING THE RELIGIOUS 
NATURE OF CARE ................................................................................................... 166 
4.4 PERCEPTIONS OF BEING MUSLIM: EXPLORING THE LINK BETWEEN RELIGIOSITY 
AND CARE .............................................................................................................. 168 
4.5 THEODICIES OF SUFFERING AND CARE: RELIGIOUS AND SPIRITUAL 
PERCEPTIONS OF CARE, ILLNESS AND DISABILITY ................................................. 172 
4.5.1 THE FIRST PURE TYPE SOLUTION TO WEBER’S PROBLEM OF THEODICY: 
TESTS, REWARDS AND BLESSINGS ..................................................................... 175 
4.5.1.1 Submitting to the Will of Allah .......................................................... 176 
4.5.1.2 Care, Disability and Illness as a Test from Allah ................................ 177 
4.5.1.3 Religious Rewards for Caregiving, Illness and Disability .................... 180 
4.5.1.4 Rewards Depending on who Within the Family is Being Cared for ... 184 
4.5.2 THIRD PURE TYPE SOLUTION TO WEBER’S PROBLEM OF THEODICY: KARMA
 ........................................................................................................................... 191 
4.5.3 EXPLORING ‘OTHER PEOPLE’S’ NEGATIVE MUSLIM PERCEPTIONS OF CARE, 
ILLNESS AND DISABILITY .................................................................................... 195 
4.5.4 SUMMARY ................................................................................................. 206 
4.6 LIVED RELIGION: CARE AS RELIGIOUS PRACTICE ............................................. 207 
4.7 CONCLUSION ................................................................................................... 218 
CHAPTER FIVE: PERCEPTIONS OF AND NEGOTIATIONS WITH STATE SERVICES ........ 220 
5.1 INTRODUCTION ................................................................................................ 220 
5.2 HEALTH SERVICES: PERCEPTIONS AND EXPERIENCES ..................................... 223 
5.3 SOCIAL SERVICES: GENDER, MANAGEMENT AND CONTROL .......................... 231 
5.3.1 CONTROLING AND MANAGING THE DISABLED MUSLIM FEMALE: IZZAT, 
PURDAH AND MADRASSAS ................................................................................ 237 
5.3.1.1 The Importance of ‘Purdah’ for Carers of Females with Learning 
Disabilities ...................................................................................................... 248 
5.3.1.2 Exploring the Importance of Muslim Religious Education for Carers of 
Females with Learning Disabilities ................................................................. 254 
5.3.1.3 Summary ............................................................................................ 259 
5.3.2 CONTROLLING AND MANAGING ACCESS TO SOCIAL SERVICES FOR THE 
DISABLED MUSLIM MALE .................................................................................. 260 
5.4 CONCLUSION ................................................................................................... 266 
CHAPTER SIX: MUSLIM FAMILY CARERS AND SOCIAL CAPITAL: EXPLORING FORMAL 
AND INFORMAL SUPPORT NETWORKS ...................................................................... 269 
6.1 INTRODUCTION ................................................................................................ 269 
7
6.2 SOCIAL CAPITAL AND THE FAMILY: GENDER, SUPPORT, OBLIGATIONS AND 
EXPECTATIONS ....................................................................................................... 273 
6.2.1 EXPLORING HIERARCHICAL CARE RELATIONS WITHIN THE FAMILY ......... 274 
6.2.2 THE MUSLIM FAMILY AS A LOCUS OF SUPPORT FOR CARERS.................. 290 
6.2.3 OBLIGATIONS AND EXPECTATIONS: EXPLORING THE ‘DARK SIDE’ OF THE 
FAMILY ............................................................................................................... 300 
6.2.3.1 Case Study One: Ahmed .................................................................... 313 
6.2.3.2 Case Study Two: Rubina ..................................................................... 315 
6.2.4 SUMMARY ................................................................................................. 323 
6.3 ‘BRIDGING THE GAP’: EXPLORING THE ROLE OF THE MUSLIM CARERS’ 
ORGANISATION ...................................................................................................... 325 
6.3.1 PROVISION OF SOCIAL ACTIVITIES IN A RELIGIOUSLY AND CULTURALLY 
APPROPRIATE SPACE ......................................................................................... 328 
6.3.2 ACCESSING SOCIAL SERVICES: BRIDGING SOCIAL CAPITAL AND THE ROLE 
OF THE MUSLIM CARERS’ ORGANISATION ........................................................ 338 
6.3.3 SUMMARY ................................................................................................. 350 
6.4 CONCLUSION ................................................................................................... 351 
CHAPTER SEVEN: CONCLUSION ................................................................................. 353 
7.1 INTRODUCTION ................................................................................................ 353 
7.2 CONCEPTUAL THEMES AND ORIGINAL CONTRIBUTIONS TO KNOWLEDGE .... 354 
7.2.1 THE SALIENCE OF RELIGIOUS FAITH IN EVERYDAY CARE .......................... 355 
7.2.2 PURITY AND DANGER ............................................................................... 360 
7.2.3 SOCIAL CAPITAL: THE FAMILY, GENDER AND CARING .............................. 364 
7.2.4 POTENTIAL CONTRIBUTIONS TO POLICY DEVELOPMENT AND SERVICE 
PROVISION ......................................................................................................... 370 
7.3 RECOMMENDATIONS FOR FURTHER RESEARCH ............................................. 371 
7.3.1 EXPANDING THIS RESEARCH ..................................................................... 372 
7.3.2 TESTING THE RESEARCH FINDINGS USING QUANTITATIVE METHODS .... 373 
7.3.3 EXPLORING MUSLIM PERCEPTIONS OF ILLNESS AND DISABILITY WITHIN 
THE FAMILY ........................................................................................................ 373 
7.3.4 EXPLORING THE DOMESTIC DIVISION OF LABOUR WITHIN MUSLIM 
FAMILIES ............................................................................................................ 374 
7.3.5 COMPARATIVE STUDY OF STATE SERVICE PROFESSIONALS AND MUSLIM 
FAMILY CARERS .................................................................................................. 375 
7.4 CLOSING THOUGHTS ........................................................................................ 375 
APPENDICES ............................................................................................................... 378 
8
APPENDIX 01: GLOSSARY OF ISLAMIC TERMS ....................................................... 378 
APPENDIX 02: THE FIVE PILLARS OF ISLAM ........................................................... 383 
APPENDIX 03: INITIAL LETTER OF CONTACT .......................................................... 384 
APPENDIX 04: INITIAL CONSENT FORM ................................................................. 386 
APPENDIX 05: INFORMATION SHEET DISTRIBUTED ON INITIAL CONTACT WITH A 
CARERS’ ORGANISATION ....................................................................................... 388 
APPENDIX 06: CARER / PROFESSIONAL PRE‐INTERVIEW INFORMATION SHEET... 390 
APPENDIX 07: INTERVIEW GUIDE FOR CARERS ..................................................... 392 
APPENDIX 08: INTERVIEW GUIDE FOR PROFESSIONALS ....................................... 395 
BIBLIOGRAPHY ........................................................................................................... 397 

9
LIST OF TABLES

Table 3.1: Fictitious Extract from Contacts Spreadsheet............................... 99
Table 4.1: Spread of Carers by Gender....................................................... 146
Table 4.2: Affiliation to a Muslim Carers’ Organisation................................ 147
Table 4.3: Relationship of the Carer to the Cared for Relative by
Gender......................................................................................................... 148
Table 4.4: Spread of Carers by the Number of Relatives Being Cared
for................................................................................................................. 149
Table 4.5: Gender of Relative Being Cared For........................................... 150
Table 4.6: Spread of Carers by Ethnicity...................................................... 151
Table 4.7: Spread of Professionals by Occupation and Gender.................. 152

LIST OF FIGURES

Figure 6.1: Three Relationships to Social Services………………….……… 330
10