A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease

Area of Science:

• Neurology
• Genetics
• Palliative Care

Background:

• Wilson disease (WD) is a rare genetic disorder affecting copper metabolism, typically diagnosed in childhood.
• Advanced stages of WD present significant challenges for affected children and their families.
• Caregiver experiences during the advanced stages of WD remain underexplored.

Purpose of the Study:

• To explore the lived experiences of family caregivers of children with advanced Wilson disease receiving neuropalliative care.
• To identify the key challenges and coping mechanisms employed by these caregivers.

Main Methods:

• An exploratory qualitative study utilizing in-depth interviews.
• Interviews were conducted with 7 family caregivers of children with advanced WD.
• Data were analyzed using an inductive and interpretive approach.

Main Results:

• Caregivers, predominantly mothers, reported themes including the dual role of parent and caregiver, illness-related uncertainty, and financial burdens.
• Understanding disease progression and navigating societal influences were significant aspects of their experience.
• Constructive coping strategies and the role of extended family networks were identified.

Conclusions:

• Caregiver experiences in advanced WD are complex and multifaceted.
• There is a critical need for comprehensive support services, including specialized neuropalliative nursing care.
• Such services are essential to aid caregivers and families in managing treatment and rehabilitation for children with WD.