The caring experience: Being a woman, mother and caregiver from patients diagnosed with mucopolysaccharidosis

Abstract

Introduction

Rare or orphan diseases represent a challenge for the health system and the quality of life of patients and their families. In Colombia, mothers assume the main role of caregivers, facing physical, emotional, and financial challenges. This study aims to understand the experience of women who are mothers and caregivers of patients with Mucopolysaccharidosis in Colombia, and the variables associated with caregiver burden.

Method

A mixed study was conducted in which the Zarit Caregiver Overload Scale was applied to 48 female caregivers of children with Mucopolysaccharidosis, and they were given an individual structured interview.

Results

The Zarit scale showed that 92% of the participants did not have overload. However, the interviews revealed a variety of negative emotions and feelings, such as loneliness, sadness, fear, and guilt. The women expressed an unfinished life project, with overloaded social roles and a constant permanent crisis. The main emotional resource and support wase faith in God. Tensions were found in the relational fabric with the child or patient, between overprotection and independence.

Conclusions

Understanding the experience of the caregivers of patients with MPS allowed unveiling the complex elements of caregiving through the three intertwined roles: being a woman, being a mother and being a caregiver. The use of religiosity as an indicator of physical and mental well-being confirms its benefit in the processes of coping with the difficulties related to the experience of diagnosis and treatment.