The Caregiver Experience in Childhood Glaucoma: An Interview Study

Area of Science:

• Ophthalmology
• Pediatric Ophthalmology
• Psychosocial Health

Background:

• Childhood glaucoma, defined by disease onset before 18 years, significantly impacts families.
• Caregiver well-being is a critical, yet often overlooked, aspect of managing chronic childhood conditions.

Purpose of the Study:

• To investigate and report on the quality-of-life (QoL) issues experienced by caregivers of individuals with childhood glaucoma.
• To identify key themes and challenges affecting caregiver psychosocial well-being.

Main Methods:

• Exploratory qualitative study employing interpretive phenomenology.
• Semistructured in-depth interviews conducted with 35 caregivers of children with glaucoma.
• Data analyzed inductively using NVivo-12 software to identify QoL themes.

Main Results:

• Six major QoL themes were identified, with coping strategies and emotional well-being being most prominent.
• Caregivers utilized adaptive coping mechanisms such as peer support and normalization.
• Psychosocial well-being was affected by guilt, anxiety, and loss of control, with family planning emerging as a novel QoL theme.

Conclusions:

• Childhood glaucoma presents substantial threats to caregiver psychosocial well-being.
• Normalization, peer support, psychotherapeutic intervention, and genetic counseling are vital for caregivers.
• Addressing caregiver QoL is essential for holistic management of childhood glaucoma.