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

Research output: Contribution to journalArticle

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.

Details

Authors
Organisations
External organisations
  • Addis Ababa University
  • Management Sciences for Health, Addis Ababa
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Health Sciences

Keywords

  • Antiretroviral treatment; caregivers; child; hope; risk of stigma
Original languageEnglish
Pages (from-to)293-309
JournalComprehensive Child and Adolescent Nursing
Volume41
Issue number4
Publication statusPublished - 2017 Dec 8
Publication categoryResearch
Peer-reviewedYes

Related projects

Inger Kristensson Hallström, Boris Magnusson, Björn Lindgren, Kristofer Hansson, Hanne Kristine Hegaard, Irén Tiberg, Kajsa Landgren, Mulatu Biru Shargie, Annelie Carlsson, Linda Kvist, Maria Ekelin, Mariette Derwig, Jonas Björk, Katarina Steen Carlsson, Malin Skoog, Åsa Lefèvre, Helena Hansson, Eva-Kristina Persson, Petra Pålsson, Degu Jerene, Markus Idvall, Staffan Bergström, Björn A Johnsson, Anna-Karin Dykes, Lena-Karin Erlandsson, Marie Edwinson Månsson, Vanja Berggren, Kjeld Schmiegelow, Bo Selander, Anders Castor, Gabriella Nilsson, Eva Nordmark, Annica Sjöström Strand, Jenny Gårdling, Ragnhild Måstrup, Pia Lundqvist, Charlotte Castor, Bengt Sivberg, Angela Afua Quaye & Magnus C Persson

Swedish Council for Working Life and Social Research (Forte), Fanny Ekdahls Stiftelse, Crafoord Foundation, Ekhagastiftelsen, Barncancerfonden, Länsstyrelsen i Östergötlands län, Diabetesfonden - Stiftelsen Svenska Diabetesförbundets Forskningsfond, Region Skåne, Swedish Research Council

2013/01/01 → …

Project: Research

View all (2)