Children caring for parents with HIV and AIDS: global issues and policy responses
Gespeichert in:
| Hauptverfasser: | , |
|---|---|
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
London
Policy Press
2009
|
| Schlagworte: | |
| Online-Zugang: | Inhaltsverzeichnis |
| Beschreibung: | XVII, 350 S. Ill. |
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| 650 | 4 | |a AIDS (Disease) |x Patients |x Care | |
| 650 | 4 | |a Adolescent | |
| 650 | 4 | |a Caregivers |x psychology | |
| 650 | 4 | |a Child | |
| 650 | 4 | |a Child of Impaired Parents |x psychology | |
| 650 | 4 | |a Children of AIDS patients | |
| 650 | 4 | |a Family Relations | |
| 650 | 4 | |a HIV Infections |x psychology | |
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| adam_text | Titel: Children caring for parents with HIV and AIDS
Autor: Evans, Ruth
Jahr: 2009
Contents
List of tables, figures and boxes x
Preface xvi
one Children s and young people s caring responsibilities within I
the family
Global constructions of childhood and youth 2
Gender, social reproduction and informal care 5
The welfare mix : families, carers and the state 9
Reciprocity and an ethic of care 11
Children and young people with caring responsibilities 14
Context and definition 14
Risk, resilience and protective factors 17
A continuum of children s and young people s caring 21
responsibilities
Children s caring responsibilities in the global North 21
Children s caring responsibilities in the global South 24
A continuum of young caregiving 25
The extent of children s involvement in care work 27
The extent of young adults (aged 18-24) involvement in 30
care work
Explanations for why children and young people become 32
involved in caregiving
Conclusion 36
two HIV and the family 39
The global HIV/AIDS epidemic 39
The dynamics of HIV/AIDS in Tanzania and the UK 42
Orphanhood and care 45
Children s emotional well-being and bereavement 47
The household economy and children s education in the 50
global South
Poverty, social exclusion and immigration in the global 51
North
Secrets and disclosure within families 54
Stigma and discrimination 56
Caring relationships in households affected by HIV/AIDS 58
Policy responses to the global HIV/AIDS epidemic 62
Conclusion 65
v
Children caring for parents with HIV and AIDS
three Reflexivity, methodology and ethics: the research 67
process
Research with children and the new social studies of 67
childhood
Reflexivity, power and ethics 69
The research process 70
Choice of research topic 70
Qualitative methods 72
Participatory methods 73
Gaining access to children and parents 75
Negotiating informed consent and the interview process 77
Researcher/researched relationship 79
Conducting interviews on sensitive topics 80
Characteristics of interviewees 82
Residence, ethnicity and household composition 84
Data analysis 85
Dissemination 87
Conclusion 87
four Living with HIV and the effects on family life: parents 91
narratives
Embodiment, illness and disability 91
Discovering their HIV status 93
Negotiating changed family and intimate relationships 96
Sexual and reproductive identities 96
Performing motherhood 99
Embodied experiences of living with HIV 101
Poverty and impacts on the household economy 110
Stigma and discrimination within the family and community 116
Enacted stigma 116
Perceived stigma 122
Self-stigma/internalised stigma 123
Deciding whom to tell: secrets and disclosure within 124
the family
Conclusion 127
five Children s and young people s care work in households 129
affected by HIV and AIDS
Young people s everyday caring responsibilities 129
Young people s household chores 131
Young people s healthcare responsibilities 134
Young people s responsibilities for personal care 140
vi
Contents
Young people s childcare responsibilities 142
Young people s income-generation activities 143
Emotional and practical support 145
Conclusion 148
six Resilience and impacts of care work for individual young 151
people and their families
Resilience and impacts for children and young people at 151
the individual level
Emotional well-being 152
Physical health and welfare 154
Personal development 157
Aspirations and priorities for the future 161
Resilience and impacts within the family 165
Love, reciprocity and supportive family relationships 165
Conflicts within the family, stigma and abuse 169
Other pressures on family relationships 172
Conclusion 172
seven Resilience and impacts of young people s care work within 175
the school and wider community
Resilience and impacts within the school environment 175
Irregular school attendance 177
Poor academic performance 177
Temporal and spatial conflicts between school work 179
and caring responsibilities
Educational resilience and supportive school 181
environments
Other factors impacting on children s education 184
Resilience and impacts within the wider community 187
Young people s friendships, supportive social networks 187
and participation in the community
Temporal and spatial conflicts between children s caring 192
responsibilities and their social lives
Stigma and social isolation 195
Effects of poverty on young people s friendships and 198
social participation
Conclusion 199
vii
Children caring for parents with HIV and AIDS
eight The role of formal safety nets in building children s and 201
families resilience
Services and support for families affected by HIV/AIDS 201
Practices and approaches that promote resilience and 205
protective factors for children and families
Practical, material and emotional support for parents 205
with HIV
Peer support for parents with HIV 209
Holistic family support 210
Opportunities for leisure, social activities and 212
short breaks
Supportive safe places for children to express themselves 214
and develop peer support
Access to information about HIV/AIDS 218
Confidentiality and building relationships of trust 220
over time
Cultural appropriateness and sensitivity to stigma 222
Multi-agency collaboration 222
Opportunities for participation 223
Community awareness raising about HIV/AIDS and 225
young caregiving
Conclusion 225
nine Global and local processes influencing young people s 227
caring roles in families affected by HIV and AIDS
Individual, relational and structural processes shaping 227
young people s involvement in care work
Global processes and policy environment 230
National policy context and infrastructure 233
National policy context in the UK 234
National policy context in Tanzania 239
Sociocultural beliefs and values 242
Factors influencing whether young people take on caring 247
responsibilities at the level of the community
Availability of extended family support 248
Informal safety nets and social networks among 249
neighbours, friends and peers
Information and access to external support from 250
welfare institutions
Factors influencing whether young people take on caring 251
responsibilities at the level of the household
Parental ill health 252
viii
Contents
Parental disclosure of HIV status to children 253
Poverty and socio-economic position of the household 253
Changes in family/household structure 254
Factors influencing whether young people take on 258
caring responsibilities at the level of individual children
Gender, age and sibling birth order 258
Quality of relationship with parent with HIV 262
Personal attributes 264
Co-residence 265
Conclusion 266
ten Responding to the support needs of children and young 269
people caring for parents with HIV
Needs and requirements for support 269
Developing services and support for young people caring 276
for parents with HIV
Targeting of support for children and young people 280
caring for parents with HIV
Barriers to the development of services and support 286
Restricted access to statutory/governmental support 286
Limited capacity of NGOs to meet needs of families 289
affected by HIV/AIDS
Limited knowledge and expertise among professionals 290
Corruption and diversion of material support from the 292
most vulnerable children
Global and local strategies and responses 293
Identifying and labelling young carers 293
Recognising, valuing and supporting informal caregiving 296
within an ethic of care
Holistic family support 298
Community home-based care 301
Engaging and joining up multisectoral responses 302
Universal or targeted services? 303
Conclusion 306
Bibliography 309
Index 337
ix
List of figures, tables and boxes
Figures
I.I A continuum of young caregiving 26
3.1 A typical day diary page completed by a young person as 75
part of the life story book
5.1 Drawing by Grace (aged 19, Tanzania), who cared for her 133
mother and four younger siblings, and photographs taken by
Grace and a family member
5.2 Photograph of Sarah (aged l5,Tanzania),who cared for her 136
mother and younger brother with HIV and three other
siblings: Here, I m giving my little brother his medicine.
5.3 Photograph of Maureen (aged 19,Tanzania), who cared 139
for her step-father until his death and cared for her mother
and younger sibling at the time of interview: I m preparing
vegetables for my mum.
5.4 Drawings by Magdalena (aged 15, Tanzania), who cared for her 141
mother until she died: These are pictures of me caring for
my mum.
5.5 Photograph of Isack (aged 12,Tanzania), who cared for his 141
mother, taken by his brother: Here I m giving my mum food.
5.6 Drawing by Grace (aged l9,Tanzania) who, along with 147
her siblings, cared for her mother in bed over a period of
several years: This is me sitting with my mum talking. I like
being at home and having a nice time with my mum and younger
brothers and sisters
6.1 Drawing by Malcolm (aged 15,Tanzania): The most important 155
thing that happened in my life was the death of my father, which
filled me with grief. I am now left behind with my mum to bring
me up, and for me to care for her until Almighty God separates us.
6.2 Drawing by Casey (aged 9, UK): 7 want to be a fashion 161
designer.This is one of my designs.
6.3 Drawing by Magdalena (aged 15,Tanzania): 7 would like to 161
become a teacher.
6.4 Drawing by John (aged 16,Tanzania), who cared for his 163
mother until she died: 7 would like to be a doctor because
the illness is very bad. I saw when I was caring for my mum.
6.5 Drawing by Happiness (aged 12,Tanzania), who cared for 163
her aunt 7 would like to be a nurse.
x
list of figures, tables and boxes
7.1 Photograph taken by Malcolm (aged 15, Tanzania), who cared 190
for his mother and younger siblings: This is where I go to get
things I need at the market
9.1 Nexus of risk and protective processes influencing whether 229
children take on caring roles and the level of their
involvement in care work in families affected by HIV
and AIDS
Tables
I. I Number and proportion of children under the age of 18 who 28
have caring responsibilities in the UK, by country and hours
caring per week
1.2 Number and proportion of children under the age of 18 29
who are involved in care work in the UK, by age and hours
caring per week
1.3 Number and proportion of young adults aged 18-24 who are 31
involved in care work in the UK, by country and hours caring
per week
3.1 Number of interviewees 82
3.2 Residence and ethnicity of interviewees 84
3.3 Household composition of interviewees 86
4.1 Women s embodied experiences of living with 102
HIV-related illness
5.1 Young people s different caring tasks in Tanzania and the UK 131
5.2 Young people s responsibilities for household chores 132
in Tanzania and the UK
5.3 Young people s healthcare responsibilities in Tanzania and 135
the UK
5.4 Young people s personal care tasks in Tanzania and the UK 140
5.5 Young people s childcare responsibilities in Tanzania and
the UK 143
8.1 External support from non-governmental, community-based 202
HIV/AIDS organisations in the UK
8.1 External support from non-governmental, community-based 203
HIV/AIDS organisations in the UK (continued)
8.2 External support from non-governmental, community-based 204
HIV/AIDS organisations in Tanzania
10.1 Views of young people and parents/relatives in Tanzania on 270
their support needs
10.2 Views of young people and parents in the UK on their 273
support needs
xi
Children coring for parents vrith HIV and AIDS
10.3 Views of service providers in Tanzania and the UK on 275
children s and parents support needs
10.4 Views of service providers in Tanzania and the UK on the 277
development of services and support for children caring for
parents with HIV
Boxes
4.1 Unequal gender relations: women s exposure to risk in 96
intimate heterosexual relationships in Tanzania
4.2 Negotiating changing sexual and reproductive identities: 98
experiences of women with HIV in the UK
4.3 Performing motherhood: concerns of mothers with HIV in 101
the UK and Tanzania
4.4 Dealing with unpredictable periods of poor health and 103
chronic fatigue: embodied experiences of living with HIV in
the UK and Tanzania
4.5 Emotional impacts of living with a life-limiting illness in a 105
different culture: experiences of African mothers with HIV in
the UK
4.6 Access to treatment: mothers narratives in Tanzania and 108
the UK
4.7 Impacts of HIV/AIDS on the household economy in Tanzania: 111
mothers experiences of chronic poverty, food insecurity
and poor housing
4.8 Immigration and access to welfare support in the UK: 113
the experiences of African mothers with HIV
4.9 Dealing with trauma, immigration pressures and HIV: 115
experiences of refugee and asylum seeking parents in the UK
4.10 Enacted stigma within the family: women s experiences in 117
Tanzania
4.11 Physical, social and verbal expressions of stigma: 119
experiences from the UK and Tanzania
4.12 Institutional stigma: eviction and homelessness in the 121
UK and Tanzania
5.1 Household chores performed by young people in Tanzania 134
and the UK
5.2 Young people s healthcare responsibilities in supporting 137
their parent s/relative s adherence to ARV drug regimes
in Tanzania and the UK
5.3 Young people s responsibilities for providing intensive 138
nursing and personal care for parents in Tanzania
xii
List of figures, tables and boxes
5.4 Young people s daily routines in the UK and Tanzania: 144
combining childcare with household chores, healthcare and
personal care
5.5 Children s and young people s income-generation activities 146
in Tanzania
5.6 Young people s involvement in providing emotional support 148
to parents/relatives with HIV in Tanzania and the UK
6.1 Effects on young people s emotional well-being in Tanzania 153
and the UK: anxiety and fears about their parent s life-limiting
illness
6.2 Young people s resilience in dealing with fears about their 156
parent s illness and bereavement in the UK and Tanzania
6.3 Young people s increased maturity, independence and sense 158
of responsibility in Tanzania and the UK
6.4 Having to grow up before their time: adult concerns about 159
the loss of childhood because of children s caring
responsibilities in the UK and Tanzania
6.5 Young people s increased ability to form caring and 160
supportive relationships in Tanzania and the UK
6.6 Young people s aspirations to care for their families and 162
for others in the future in the UK and Tanzania
6.7 Uncertain transitions to adulthood and barriers to young 164
people s aspirations in Tanzania and the UK
6.8 Reciprocal emotional support and advice in caring 166
relationships in Tanzania and the UK
6.9 Shared caring responsibilities: reciprocity and supportive 168
relationships with siblings and other relatives in Tanzania
and the UK
6.10 Ambivalence and tensions in family relationships in the UK 170
6.11 Difficult caring relationships and experiences of stigma 171
and ostracism within extended families in Tanzania
7.1 Irregular school attendance caused by young people s 178
caring responsibilities in Tanzania
7.2 Negative effects of worry and anxiety on young people s 179
academic performance: young people s experiences in
Tanzania
7.3 Temporal and spatial conflicts between school work and 180
caring responsibilities in Tanzania
7.4 Temporal and spatial conflicts between school work and 181
caring responsibilities in the UK
7.5 Supportive school environments for children with caring 183
responsibilities? Young people s experiences in Tanzania
xiii
Children caring for parents with HIV and AIDS
7.6 Supportive school environments for children with caring 185
responsibilities? Children s and parents perspectives from
the UK
7.7 Importance of positive peer relationships and social activities 189
in the wider community: young people s experiences in
the UK
7.8 Young people s and parents social support networks 191
among neighbours and friends in Tanzania and the UK
7.9 Conflicts between young people s caring responsibilities 193
and social lives in the UK
7.10 Fear of leaving their parent alone: children s reduced 194
spatial mobility and engagement in leisure activities in
the UK
7.11 Stigma by association: young people s experiences of social 196
isolation and stigma within the family and in the wider
community in Tanzania
7.12 HIV stigma, secrecy and the effects on young people s ability 197
to seek support in Tanzania and the UK
8.1 Practical and emotional support for parents with HIV: 206
parents experiences of voluntary sector services in the UK
8.2 Parents experiences of statutory home care services in 207
the UK
8.3 Material and emotional support for parents with HIV and 208
their families: young people s and parents experiences in
Tanzania
8.4 Supporting children and parents on issues of disclosure 211
within the family: practices and approaches from the UK and
Tanzania
8.5 Building resilience, peer support and life skills among young 217
people affected by HIV/AIDS in Tanzania
9.1 Gendered constructions of household responsibilities and 246
care work
9.2 Preference for sick family members to be cared for within 247
the family: perspectives of parents and service providers in
Tanzania and the UK
9.3 The influence of changes in family/household structure on 256
children s caring responsibilities: perspectives of young
people and parents in the UK and Tanzania
9.4 Subverting gender norms within the household? 260
Boys caring for their mothers in Tanzania
9.5 Age, sibling birth order and education as factors 262
influencing young people s caring roles in Tanzania
xiv
Ust of figures, tables and boxes
10.1 Restricted access to statutory services in the UK: 288
parents perspectives
10.2 Limited capacity of NGOs to meet needs of families 290
affected by HIV/AIDS in the UK and Tanzania: service
providers perspectives
10.3 Formal safety nets failing to meet the needs of families 291
affected by HIV/AIDS: young people s and parents
perspectives from the UK and Tanzania
10.4 Corruption and diversion of material support from the 293
most vulnerable children: young people s, parents and
service providers perspectives in Tanzania
xv
|
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| publisher | Policy Press |
| record_format | marc |
| spelling | Evans, Ruth Durant Verfasser aut Children caring for parents with HIV and AIDS global issues and policy responses Ruth Evans and Saul Becker London Policy Press 2009 XVII, 350 S. Ill. txt rdacontent n rdamedia nc rdacarrier AIDS (Disease) Patients Care Adolescent Caregivers psychology Child Child of Impaired Parents psychology Children of AIDS patients Family Relations HIV Infections psychology Health Services Needs and Demand Hauspflege (DE-588)4023796-5 gnd rswk-swf HIV-Infektion (DE-588)4203852-2 gnd rswk-swf Kind (DE-588)4030550-8 gnd rswk-swf Eltern (DE-588)4014516-5 gnd rswk-swf Eltern (DE-588)4014516-5 s HIV-Infektion (DE-588)4203852-2 s Kind (DE-588)4030550-8 s Hauspflege (DE-588)4023796-5 s b DE-604 Becker, Saul Verfasser aut HBZ Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=017327855&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Evans, Ruth Durant Becker, Saul Children caring for parents with HIV and AIDS global issues and policy responses AIDS (Disease) Patients Care Adolescent Caregivers psychology Child Child of Impaired Parents psychology Children of AIDS patients Family Relations HIV Infections psychology Health Services Needs and Demand Hauspflege (DE-588)4023796-5 gnd HIV-Infektion (DE-588)4203852-2 gnd Kind (DE-588)4030550-8 gnd Eltern (DE-588)4014516-5 gnd |
| subject_GND | (DE-588)4023796-5 (DE-588)4203852-2 (DE-588)4030550-8 (DE-588)4014516-5 |
| title | Children caring for parents with HIV and AIDS global issues and policy responses |
| title_auth | Children caring for parents with HIV and AIDS global issues and policy responses |
| title_exact_search | Children caring for parents with HIV and AIDS global issues and policy responses |
| title_full | Children caring for parents with HIV and AIDS global issues and policy responses Ruth Evans and Saul Becker |
| title_fullStr | Children caring for parents with HIV and AIDS global issues and policy responses Ruth Evans and Saul Becker |
| title_full_unstemmed | Children caring for parents with HIV and AIDS global issues and policy responses Ruth Evans and Saul Becker |
| title_short | Children caring for parents with HIV and AIDS |
| title_sort | children caring for parents with hiv and aids global issues and policy responses |
| title_sub | global issues and policy responses |
| topic | AIDS (Disease) Patients Care Adolescent Caregivers psychology Child Child of Impaired Parents psychology Children of AIDS patients Family Relations HIV Infections psychology Health Services Needs and Demand Hauspflege (DE-588)4023796-5 gnd HIV-Infektion (DE-588)4203852-2 gnd Kind (DE-588)4030550-8 gnd Eltern (DE-588)4014516-5 gnd |
| topic_facet | AIDS (Disease) Patients Care Adolescent Caregivers psychology Child Child of Impaired Parents psychology Children of AIDS patients Family Relations HIV Infections psychology Health Services Needs and Demand Hauspflege HIV-Infektion Kind Eltern |
| url | http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=017327855&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA |
| work_keys_str_mv | AT evansruthdurant childrencaringforparentswithhivandaidsglobalissuesandpolicyresponses AT beckersaul childrencaringforparentswithhivandaidsglobalissuesandpolicyresponses |