Disease Burden: Lived Experience of Mothers Caring For Children With Inborn Errors of Metabolism

Abstract

Background: Background: Inborn errors of metabolism are chronic conditions that have many consequences. Mothers of these children are facing different challenges which are underdetermined.

The aim of the study: This study was aimed to analysis the disease burdens of mothers caring for children with some inborn errors of metabolism.

Methods: Interpretive phenomenological analysis using Braun & Clarke approach that provides a six- phase guide and it was conducted on 21 motherss whose children suffer from (10 Phenylketonuria, 5 Mucopolysaccharidoses, and 6 Gaucher Disease) and data were gathered using semi-structured interviews and the interviews were audio recorded.

Results: The five final themes were revealed from disease burdens of mothers caring for children with inborn errors of metabolism including Emotional/ Psychological impacts, familial impacts, social impacts, physical impacts, and financial impacts.

Conclusion: Inborn errors of metabolism had  a heavy social, psychological, and financial burdens on all family members. However, this study found that mothers were the most affected by psychological issues, particularly isolation.

Recommendations: It is become essential to develop programs for helping mothers of children with inborn errors of metabolism to reduce the burden of these diseases on mothers and consequently on  the children and the whole family.