Living with HIV and without a residence permit

211 Pages·2016·1.94 MB·English

Living with HIV and without a residence permit:
dealing with life and health in illegalised exile

Synnøve Skjeie Sømod
Supervisor: Kåre Moen, Associate Professor

Thesis submitted as part of the Master of Philosophy Degree in
International Community Health

UNIVERSITY OF OSLO
The Faculty of Medicine, Institute for Health and Society
Department of Community Medicine, Section for International Community Health
March 2016

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‘…life can change every two hours, or in a second’ (Hana)

Living with HIV and without a residence permit: dealing with life and health in
illegalised exile
A qualitative study with people living with HIV and without a residence permit in the greater
Oslo area

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Abstract
People living with HIV and without a residence permit have to deal with a serious chronic
condition on one hand, and their lack of legal residence status on the other, including the ever-
present risk of being deported to their country of origin.
Objectives: The objectives of the study were to generate new insight into the daily lives of
people living with HIV and without a residence permit, and to generate understanding of how
they perceive, experience and relate to their HIV infection and conceive of health and a
healthy life in the context of irregular exile in Norway.
Methods: This study was carried out in the greater Oslo area in 2011-2012. Six persons who
were living with HIV and without a residence permit participated in the study. They had
backgrounds from different Sub-Saharan countries and had lived in Norway from 3-4 to 9-10
years. Data was produced through a combination of three qualitative research methods:
dialogical interviews, participant observation and review of relevant documents and media
reporting.
Findings: A combination of several types of external power, constraints and control
mechanisms was palpably present in the lives of the study participants. This ‘web of power’
shaped their everyday lives to a considerable degree, and was also what the men and women
in this study understood as most challenging to their own health. While they perceived of HIV
as a significant life disruption, having had their application for protection rejected in Norway
was portrayed as considerably more disruptive, and of greater significance for their own
health. A double homelessness could be said to exist in the lives of the study participants: the
sense of losing ground and grounding due to a serious illness, and the loss of home and a
place in the world due to illegalised exile.
Conclusion: For people living with HIV, health is considerably more than HIV and HIV
treatment, and illegalised exile in Norway shapes the everyday lives of people living with
HIV in ways that generate a range of negative predictors of health. How the consequences of
this influence the overall health of individuals and the course of the HIV-infection, should be
explored further.

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Acknowledgements

To each of the participants in this study: I thank you for sharing your time and your thoughts
with me. This research would not exist without you.
To my supervisor Kåre Moen - I am so grateful for your interest and wise guidance, for
sharing with me new ways of seeing things – and for sharing your sense of humor! I am also
forever thankful for your unreserved encouragement, patience and kindness until the very end
of this study.
I want to thank M. Phil coordinator Terese Eriksen for her support and kind advices during
the last period of my studies. My thanks also go to Line Löw and Marilyn Lauglo, and to all
the other staff at the Section for International Community Health. Thanks also to all my
classmates for our joint learning and the time we spent together .
To my very good friend Miriam Jackson – thanks for helping me with translations,
bibliography, food, tea etc.!
A big thank you to my other friends for their continued interest and support!
My thanks also go to all my colleagues at the health clinic for asylum seekers at Torshov and
Refstad reception centres.
I am thankful to Bærum municipality for supporting me financially.
To my mother Gudrun, my sister Hanne, my niece Hilde, and my aunt Aslaug– thank you for
your curiosity, practical help, all your understanding and for sharing all the ups and downs
with me!
To my son Jonas, I am so lucky to have you, thank you for your positivity and for being who
you are!

The responsibility for what has emerged is, of course, my own .

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Acronyms

AIDS - Acquired immune deficiency syndrome
ART - Antiretroviral treatment
CD4 – or T-helper cells, white blood cells that play a major role in the immune system /
protecting the body from infection
CESCR - Committee on Economic, Social and Cultural Rights
DPS - District psychiatric centre
FHI - Norwegian Institute of Public Health
HIV - Human immunodeficiency virus
ICESCR - United Nations International Covenant on Economic, Social and Cultural Rights
IOM - International Organization of Migration
MSM - Men who have sex with men
NAV - The Norwegian Labour and Welfare Administration
NGO - Non-Governmental Organization
NOAS - Norwegian Organisation for Asylum Seekers
NRK - Norwegian Broadcasting Corporation
PU - The National Police Immigration Service
SEIF - Selvhjelp for innvandrere og flyktninger (NGO working with immigrants and refugees)
UDI - Directorate of Immigration
UNAIDS - United Nations Programme on HIV/AIDS
UNE - The Immigration Appeals Board
UNHCR - United Nations High Commissioner for Refugees
WHO – World Health Organization

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Everyday terms

A stay - A residence permit for a permanent or longer period of time
Camp – the English word used in everyday language to refer to ‘asylum reception centre’
Mottak - A short form for UDI’s term Asylmottak (Asylum reception centre)
Negative - A rejection of the application for protection
Nemnda - The Immigration Appeals Board
Positive – To be granted a residence permit for a longer period of time
Paper, papers - A residence permit for a permanent or longer period of time
Residency, to have residence - A residence permit for a permanent or longer period of time
Reception centre - a short form of UDI’s term ‘asylum reception centre’

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Contents
Abstract ............................................................................................................................................. iii
Acknowledgements ........................................................................................................................... iv
Acronyms ........................................................................................................................................... vi
Everyday terms ............................................................................................................................. vii
Contents ............................................................................................................................................... 2
Chapter one: Introduction .............................................................................................................. 5
Background ................................................................................................................................................... 5
Rationale for the study ............................................................................................................................................... 5
Aims and objectives of the study .............................................................................................................. 8
Thematic research fields ........................................................................................................................................... 8
Organisation of the thesis ...................................................................................................................................... 10
The Norwegian context ............................................................................................................................ 10
Introduction ................................................................................................................................................................ 10
Immigration policies and procedures ................................................................................................................. 12
Laws and regulations ............................................................................................................................................... 16
Chapter two: Literature review .................................................................................................. 22
Concepts relevant for the study ............................................................................................................. 22
Illegalisation of migrants ....................................................................................................................................... 22
The health concept ................................................................................................................................................... 23
The phenomenon of HIV ....................................................................................................................................... 25
Review of relevant literature .................................................................................................................. 27
Life without legal residency .................................................................................................................................. 28
Living with HIV and with uncertain immigration status ............................................................................ 29
Studies in a Norwegian context ........................................................................................................................... 37
Chapter three: Study design ........................................................................................................ 43
Epistemology .............................................................................................................................................. 43
Methods ....................................................................................................................................................... 43
Target group ............................................................................................................................................................... 46
The recruitment process. Invitation to participate and establishing contact ......................................... 47
Dialogical interviews ............................................................................................................................................... 51
Participant observation ........................................................................................................................................... 56
Following relevant public discourse and policy development in mass media ..................................... 59
Readings ...................................................................................................................................................................... 59
Data recording, management and analysis ....................................................................................................... 61
The researcher role. Positioning, pre-understandings and reflexivity ..................................................... 65
Ethical considerations .............................................................................................................................. 69
Vulnerabilities ........................................................................................................................................................... 69
Informed consent ...................................................................................................................................................... 73
Confidentiality ........................................................................................................................................................... 75
Risks and benefits ..................................................................................................................................................... 77
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Weaknesses and strengths ....................................................................................................................... 80
Chapter four: Daily life and social relation s............................................................................ 83
Introduction ................................................................................................................................................ 83
The study participants ............................................................................................................................. 83
‘I run and run’ or ‘Sit and see the medicines expire’ ....................................................................... 85
‘Always I have to stay here’ .................................................................................................................... 89
No one to rely on ........................................................................................................................................ 91
Building a home ......................................................................................................................................... 93
‘I have two families now’ ......................................................................................................................... 95
Where to go from here ........................................................................................................................... 100
Discussion .................................................................................................................................................. 101
Chapter five: Relation to UDI ................................................................................................... 108
Introduction .............................................................................................................................................. 109
Form of communication ...................................................................................................................... 109
A struggle to show the truth ................................................................................................................. 110
Waiting and expectations ..................................................................................................................................... 111
Ambiguity and distrust .......................................................................................................................... 112
Power of definition .................................................................................................................................. 115
Discussion .................................................................................................................................................. 116
Chapter six: Perceptions and experiences of life with HIV in home countr .y................ 121
Meeting the HIV diagnosis .................................................................................................................... 121
You can die there easily ......................................................................................................................... 122
Medical treatment ................................................................................................................................................... 124
They say I have family there who can help me. How can they help me? ............................................ 125
Discussion .................................................................................................................................................. 126
Chapter seven: Living with HIV: perceptions, experiences and meaning formation in
illegalised exile ............................................................................................................................... 129
Introduction .............................................................................................................................................. 129
Dealing with HIV in illegalised exile ................................................................................................... 130
‘And then I have this disease’. ........................................................................................................................... 130
‘The body needs support’ .................................................................................................................................... 131
Staying with HIV .................................................................................................................................................... 131
Social relations. The fear, the need and joy of others ..................................................................... 133
Really, I’m ok with it. It’s the others ............................................................................................................... 133
The need of others .................................................................................................................................................. 135
The fear of others. My secret and my weakness. ......................................................................................... 136
Close relations. Blame or support ..................................................................................................................... 137
HIV and social opportunities .............................................................................................................................. 145
Discussion .................................................................................................................................................. 147
Chapter eight: Perspectives on health ..................................................................................... 154
Perceptions of health in illegalised exile ............................................................................................. 154
Introduction .............................................................................................................................................................. 154
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