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Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers' Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment

Shargie, Mulatu Biru LU ; Lundqvist, Pia LU ; Molla, Mitikie ; Jerene, Degu LU and Hallström, Inger LU (2017) In Comprehensive Child and Adolescent Nursing 41(4). p.293-309
Abstract
Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers’ lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy. Qualitative interviews with 18 family caregivers of 18 children were performed and analyzed using an inductive design with a hermeneutic phenomenological approach. The family caregivers’ lived experience was shown in two main themes comprising “lifelong medication gives hope for the future” and “support challenged by... (More)
Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers’ lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy. Qualitative interviews with 18 family caregivers of 18 children were performed and analyzed using an inductive design with a hermeneutic phenomenological approach. The family caregivers’ lived experience was shown in two main themes comprising “lifelong medication gives hope for the future” and “support challenged by the fear of stigma.” The family caregivers experienced hope and dreams for the future as they saw their child as healthy and they had regained normality in life after the child’s diagnosis. The caregivers still feared the disclosure of the child’s diagnosis, which gave rise to conflicts with the child, the family, and society. Good quality support from the healthcare staff lightened their burdens. Further studies are recommended on the strategies of stigma reduction and developing need-specific modalities to support caregivers in the community. (Less)
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author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Antiretroviral treatment; caregivers; child; hope; risk of stigma
in
Comprehensive Child and Adolescent Nursing
volume
41
issue
4
pages
293 - 309
publisher
Taylor & Francis
external identifiers
  • pmid:29220598
  • scopus:85058242307
ISSN
2469-4193
DOI
10.1080/24694193.2017.1372531
project
LUC3 - Lund University Child Centered Care
Hospital-based Home Care for children with long-term illness
language
English
LU publication?
yes
id
bfc0b852-aed8-4242-a3e4-7ef9049cd2ed
date added to LUP
2018-05-30 10:45:55
date last changed
2020-01-28 14:04:57
@article{bfc0b852-aed8-4242-a3e4-7ef9049cd2ed,
  abstract     = {Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers’ lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy. Qualitative interviews with 18 family caregivers of 18 children were performed and analyzed using an inductive design with a hermeneutic phenomenological approach. The family caregivers’ lived experience was shown in two main themes comprising “lifelong medication gives hope for the future” and “support challenged by the fear of stigma.” The family caregivers experienced hope and dreams for the future as they saw their child as healthy and they had regained normality in life after the child’s diagnosis. The caregivers still feared the disclosure of the child’s diagnosis, which gave rise to conflicts with the child, the family, and society. Good quality support from the healthcare staff lightened their burdens. Further studies are recommended on the strategies of stigma reduction and developing need-specific modalities to support caregivers in the community.},
  author       = {Shargie, Mulatu Biru and Lundqvist, Pia and Molla, Mitikie and Jerene, Degu and Hallström, Inger},
  issn         = {2469-4193},
  language     = {eng},
  month        = {12},
  number       = {4},
  pages        = {293--309},
  publisher    = {Taylor & Francis},
  series       = {Comprehensive Child and Adolescent Nursing},
  title        = {Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers' Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment},
  url          = {http://dx.doi.org/10.1080/24694193.2017.1372531},
  doi          = {10.1080/24694193.2017.1372531},
  volume       = {41},
  year         = {2017},
}