Coping strategies to manage stress related to vision loss and fluctuations in retinitis pigmentosa

Abstract 

Background

Vision loss in retinitis pigmentosa (RP) is a slowly progressive and inexorable threat to patients' independence. It is not surprising that RP patients, many of whom are young when diagnosed, are at high risk for stress related to their vision loss. To address these issues, eye care providers need to be aware of what coping strategies RP patients use to successfully manage their vision loss.

Methods

We held focus groups with 8 legally blind RP patients to help us better understand how they cope with the stress that is generated from their progressive vision loss and fluctuations in vision. Focus group sessions were audio-taped and resulting notes were coded using conventional qualitative analytic techniques.

Results

Two themes were identified: (1) “kicking and screaming” captured the ways in which RP patients fight to maintain their independence in the face of worsening vision; and (2) “there are so many worse things” describes how RP patients keep their vision loss in perspective. These RP patients demonstrated high levels of resiliency. In particular, they often used humor as a coping mechanism.

Conclusion

Understanding the ways in which RP patients manage their gradual, impending vision loss may lead to improved quality of care for this patient population.

Keywords: Retinitis pigmentosa, Focus groups, Coping skills, Stress, Blindness, Low vision