CAREGIVERS’ EXPERIENCES IN CARING FOR CHILDREN WITH HYDROCEPHALUS AT THE UNIVERSITY TEACHING HOSPITALS, LUSAKA ZAMBIA

Abstract

Background: Hydrocephalus represents a serious public health problem and a major cause of disability as well as poor quality of life. Children who are born with hydrocephalus or acquire it later in life are often cared for in the home setting by a family caregiver, and in some cases by professional caregivers. Care giving can often stressful and can result in negative effects on the family caregiver. 

Objective: The aim of this study was to explore caregivers’ experiences in caring for children with hydrocephalus seen at the University Teaching Hospitals in Lusaka, Zambia. 

Methods: A qualitative phenomenological study design was adopted. This study was conducted at the University Teaching Hospitals in Lusaka, Zambia, among a population of family caregivers for children with hydrocephalus. Purposeful sampling method was used to select ten (10) participants. Data were collected through face-to-face in-depth interviews using a semi-structured interview guide. Data obtained from the interviews was transcribed verbatim and analyzed using thematic analysis. All ethical considerations were upheld accordingly.

Results: The findings of this study revealed that caregivers for children with hydrocephalus experience a great deal of psychological, social and socioeconomic challenges in caring for their children. These experiences range from emotional distress; sleep deprivation; deterioration of social support; to financial impoverishment associated with needs and expenses of caring for a child with hydrocephalus.

Conclusion: While most studies and interventions primarily focus on the restoration of function in children with hydrocephalus, it is important to develop and/or strengthen programmes that provide holistic support for caregivers of children with hydrocephalus because of the various experiences associated with caring for children with hydrocephalus.

Key words: caregivers, experiences, care-giving, children, hydrocephalus