“I'm not sad anymore, I'm proud to have such a child”: The experiences of caregivers of dependents with cerebral palsy living in Greece

Abstract

Background

People with cerebral palsy are largely dependent on their caregivers, who are most often members of their family. Caring for people with disabilities can be challenging as both dependents and caregivers face problems of social isolation and stigmatization.

Aim

The aim of this study was to understand the experiences of caregivers of dependents with cerebral palsy in Greece.

Methods

We conducted a qualitative study utilizing a descriptive phenomenological design. A purposive sample of 20 caregivers was employed and data was collected through semi-structured in-depth interviews. Data analysis was conducted using the 7 steps of Colaizzi's method.

Results

Three themes emerged from the data analysis: a) family cohesion and emotional status, b) social and professional support and c) facing stigma. All caregivers reported negative feelings such as sadness, disappointment, fear and anger and agreed that the region of Western Greece lacks appropriate infrastructure for people with cerebral palsy. Most of the participants exhibited high levels of internalized shame in the sense that the stigma attached to their child led to feelings of self-blame.

Conclusion

This study suggests that it is important to develop structural and community interventions to support carers and establish new strategies for better educated and empathetic nurses and other health professionals.