'You're still the same person, but you're just seeing a bit less': a qualitative study of the impact of vision impairment on mental well-being in children and young people with inherited eye disease in England.

OBJECTIVES

To explore the influence of vision impairment (VI) on mental wellbeing in children and young people (CYP) with inherited macular disease and experiences perceived to enhance and limit their wellbeing.

DESIGN

Qualitative semi-structured interviews with children and young people with vision impairment and parents/carers of young people with VI. Interviews were recorded, transcribed and analysed by two researchers, working independently, using reflexive thematic analysis.

SETTING

Low vision and ophthalmology clinics in England.

PARTICIPANTS

Six young people aged 13-18 years with VI caused by inherited macular disease and 12 parents of young people with VI caused by inherited macular disease.

RESULTS

Four overarching themes were developed: (1) Living in the aftermath of diagnosis, capturing participants' internal experience of living with vision impairment from the time of diagnosis onward, including the psychological impact of negotiating the loss of vision and the challenge of accepting VI; (2) Fighting the system, reflecting how parents and CYP navigate both formal and informal support systems, highlighting the barriers they face; (3) Being seen and being misunderstood, encapsulating how VI influences the way that participants experience relationships, develop a sense of self and navigate their place within society; and (4) Building a life with vision impairment, centring on how participants function in everyday contexts while living with VI, alongside their aspirations for building their lives and living well in adulthood.

CONCLUSIONS

Vision impairment has emotional, social and systemic consequences. Experiences perceived to influence mental wellbeing included acceptance of vision loss, functional adaptation, self-efficacy and effects of social stigma and discrimination.