Living with nystagmus: a qualitative study

Background/aims To identify aspects of daily living affected by nystagmus.

Methods Semistructured interviews were conducted at the University of Leicester, UK with participants with acquired and infantile nystagmus. In total 21, participants were purposively sampled and recruited. Transcript analysis was conducted using constant comparative technique, based upon the grounded theory, to identify specific areas of living affected by nystagmus.

Results Analysis identified six domains that were adversely affected by nystagmus; visual function, restriction of movement, standing out/not fitting in, feelings about the inner self, negativity about the future and relationships. Cosmetic appearance of nystagmus, including others' avoidant response to this, was described (n=18), as was others' failure to recognise what it is like to have nystagmus (n=18). Driving issues were frequently raised (n=19) and restrictions in occupation choice/opportunities (n=17) were highlighted. Reliance on others (n=16) also emerged. Additional to other categories was an overarching and universal distress arising from nystagmus affecting every aspect of everyday life.

Conclusion Interviews revealed universally negative experiences of living with nystagmus that are previously unreported. Findings are similar to studies conducted for strabismus, in particular with respect to cosmetic impact. This study provides the content that is required to develop a nystagmus-specific quality of life tool.