Survey study unveils the emotional toll of parenting sons with X-linked retinoschisis

This paper describes the experiences of parents of sons with X-linked retinoschisis (XLRS).

Study design

This study consists of 11 mothers and 8 fathers from 13 families with a son with XLRS; the sons were evaluated at the National Eye Institute during a 14-month period. Researchers used a quantitative survey and qualitative interviews to query about optimism, anxiety, personality traits and sociodemographic factors.

Outcomes

The parents described the process of learning to adapt to their son’s condition over time. Initially, most parents felt considerable grief and devastation. Although anxiety levels lessened with time, stress regarding their child’s participation in sporting activities and concerns about driving a vehicle remained. Mothers often had guilt, but this also decreased over time.  All parents expressed an ongoing concern about developing a retinal detachment.

Limitations

This is a small study on a rare condition. Patients who have the means to travel to the National Health Institute may not be representative of all patients with this disease.

Clinical significance

In addition to practical concerns about helping their children adapt, parents of children with XLRS may have significant emotional concerns including anxiety and guilt. In this study, they expressed worries about long-term visual health, specifically regarding retinal detachment. Providers should be aware of these matters to help better address these concerns and provide parents with context during office visits. Early consultations with ophthalmic genetic centers/counselors may be very helpful for these families.