‘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 wellbeing in adolescents with inherited eye disease

Objectives

Mental wellbeing is lower in people with vision impairment (VI) but the mechanisms for this are not completely understood. Here we examined factors that limit and benefit wellbeing in children and young people with VI.

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 genetic eye disease clinics in a tertiary eye hospital in London, England.

Participants

Young people aged 13-18 years with vision impairment (VI) caused by inherited macular disease and 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 whilst living with VI, alongside their aspirations for building their lives and living well in adulthood.

Conclusions

Vision impairment has emotional, social, and systemic consequences. Factors linking VI to reduced mental well-being included low acceptance of vision loss, low functional adaptation, reduced self-efficacy, effects of social stigma and discrimination.

Strengths and limitations

• The study uses detailed interviews of wellbeing from two perspectives (young people and their parents/carers);

• Participants identified a broad range of positive and negative experiences which can be used to inform future interventions;

• All participants were under the care of a specialist eye clinic so they may not be fully representative of the broader population of people with vision impairment.