A qualitative enquiry into the challenging roles of caregivers caring for children with Autism Spectrum Disorders in Ghana

Jennifer Appah; Vivian Efua Senoo-Dogbey; Deborah Armah; Delali Adwoa Wuaku; Lilian Akorfa Ohene

doi:10.1016/j.pedn.2024.01.029

A qualitative enquiry into the challenging roles of caregivers caring for children with Autism Spectrum Disorders in Ghana

J Pediatr Nurs. 2024 Feb 5:76:23-29. doi: 10.1016/j.pedn.2024.01.029. Online ahead of print.

Authors

Jennifer Appah¹, Vivian Efua Senoo-Dogbey², Deborah Armah³, Delali Adwoa Wuaku⁴, Lilian Akorfa Ohene⁵

Affiliations

¹ Ghana College of Nurses and Midwives, Accra, Ghana; Ga South Municipal Hospital-Ghana Health Service, Accra, Ghana.
² Department of Public Health, School of Nursing and Midwifery, University of Ghana, P. O. Box LG 25, Legon, Accra, Ghana; Ghana Institute of Management and Public Administration (GIMPA) School of Public Service and Governance, Ghana. Electronic address: efuvivi@yahoo.co.uk.
³ Department of Maternal and Child Health, School of Nursing and Midwifery, University of Ghana, P.O. Box LG 25, Legon, Accra, Ghana. Electronic address: debarmah@ug.edu.gh.
⁴ Department of Nursing Research, Nursing, and Midwifery Training School, P. O Box KB 83, Korle-Bu, Accra, Ghana.
⁵ Department of Public Health, School of Nursing and Midwifery, University of Ghana, P. O. Box LG 25, Legon, Accra, Ghana. Electronic address: lohene@ug.edu.gh.

PMID: 38320338
DOI: 10.1016/j.pedn.2024.01.029

Abstract

Background: Autism Spectrum Disorder (ASD) is a condition commonly characterized by challenges with social interaction, repetitive atypical behaviour, and restricted interest. It is estimated that about 1 in 160 children has ASD. Caring for children with ASD is challenging for many parents or caregivers.

Objectives: The study aims at exploring the challenges experienced by caregivers of children with ASD.

Methods: A qualitative phenomenological study was employed using an exploratory descriptive research design. A total of 10 participants were recruited in this study using a purposive sampling technique. Data were analysed using content analysis procedures.

Result: Caregivers of children with ASD face social, financial, and emotional challenges, challenges in accessing health care, education and training of their children in mainstream school settings.

Conclusion: The numerous challenges have implications for the quality of life of the caregivers and their children. The financial challenges and inaccessibility of specialist health services have serious implications for the continuous medical care and monitoring of children with ASD. The challenges in education and training of children with ASD has negative consequences for enrolment and retention of children with ASD in mainstream school settings.

Keywords: Access to healthcare; Autism spectrum disorder; Caregivers; Challenges; Social and emotional.