Journal Article

The experiences of caregivers of children living with HIV and AIDS in Uganda: a qualitative study

Knizek, Birthe Loa, Kinyanda, Eugene, Mugisha, James, Osafo, Joseph

2017

Overview

Background Home-based care for HIV patients is popular in contexts severely affected by the epidemic and exacts a heavy toll on caregivers. This study aimed at understanding the experiences of caregivers and their survival strategies. Methods A total of 18 caregivers (3 males and 15 females) were interviewed using a semi-structured interview guide, and thematic analysis was used to analyse the data. Results Analysis suggests that the caregivers are burdened with insecure provisions for food and difficulties in accessing health care. They however survived these strains through managing their relationships, sharing burden with care-recipients, social networks and instrumental spirituality. These findings are discussed under two major themes: 1). Labour of caregiving and 2). Survivalism . Conclusions Home-based care presents huge opportunities for community response to the HIV/AIDS epidemic in African settings. It is however burdensome and thus should not be left for families alone to shoulder. There is therefore an urgent need for protecting home-based care for HIV children in Uganda. Implications for improving and strengthening social interventions in home-based care of HIV/AIDS in the Ugandan context are addressed.

• Publisher: BioMed Central,Springer Nature B.V,BMC
• Subject: Acquired immune deficiency syndrome / Acquired Immunodeficiency Syndrome - nursing / AIDS / Burden sharing / Caregivers / Caregivers - psychology / Caregiving / Child / Children / Children with HIV / Community involvement / Cost of Illness / Data processing / Developing Countries / Development Economics / Epidemics / Epidemiology / Experiences / Families & family life / Female / Food / Global health systems / Health care / Health care policy / Health services / Health Services Accessibility / Health Services Research / Healthy food / HIV / HIV Infections / Home based / Home health care / Home Nursing / Human immunodeficiency virus / Humans / Male / Medicine / Medicine & Public Health / Mental depression / Mental health care / Mortality / Patients / Public Health / Qualitative Research / Quality of Life Research / Social interventions / Social networks / Social organization / Social Policy / Social response / Social Support / Spirituality / Stress / Studies / Surveys and Questionnaires / Survival strategies / Teenagers / Uganda