Description
Background: Young people with vision impairment (VI) report lower well-being than their peers, but the mechanisms underlying this disparity are not well understood. Evidence for the effectiveness of existing emotional support is limited, and provision is often inconsistent. This study used qualitative interviews to explore factors that hinder or support well-being in adolescents with acquired VI, as well as barriers and facilitators to accessing support, with the aim of informing recommendations, strategies and resources to improve outcomes.
Methods: Purposive sampling recruited adolescents with, and parents of adolescents with, inherited macular disease and VI from a hospital low vision clinic and a vision impairment charity. Participants completed semi-structured interviews with open-ended questions exploring the impact of VI on daily life, particularly at diagnosis, focusing on mental well-being, coping activities and perceptions of available support. Interviews were recorded, anonymised, transcribed and analysed using reflexive thematic analysis. Themes were developed using an a posteriori approach.
Results: Eighteen interviews were analysed. Four overarching themes were identified. “Living in the aftermath of diagnosis” captured the enduring emotional impact of VI. “Fighting the system” described how families navigate complex support structures and the barriers encountered. “Being seen and being misunderstood” reflected how VI shapes relationships, identity and social positioning. “Building a life with vision impairment” focused on everyday functioning, support systems and future aspirations. Together, these themes demonstrate how psychological, social and systemic factors interact to influence well-being and life trajectories.
Conclusions: Participants linked multiple aspects of VI to reduced well-being. These findings will inform the development of targeted interventions, including Acceptance and Commitment Therapy, to better support adolescents with VI.
Lay Abstract
Background: Adolescents with vision impairment (VI) often have lower well-being than others their age, but we do not fully understand why. Support for their emotional needs can be limited or inconsistent. This study aimed to understand what affects their well-being and what helps or prevents them from getting support, so that better resources and strategies can be developed.
Methods: We interviewed adolescents with VI and parents of affected adolescents who were recruited through a hospital clinic and a charity. The interviews used open-ended questions to explore how VI affects daily life, especially around the time of diagnosis. We focused on emotional well-being, coping strategies and experiences of support. Interviews were recorded, written out and analysed to identify common themes.
Results: Eighteen interviews were included. Four main themes emerged: the emotional impact of diagnosis and living with VI; challenges navigating support systems; how VI affects relationships, identity and feeling understood; and building a life with VI, including daily activities and future goals. These themes showed that well-being is shaped by emotional, social and practical factors.
Conclusions: Many aspects of VI can affect well-being. These findings will help develop better support, including therapies, to improve the lives of young people with VI.
| Lay Title | Understanding What Helps and Challenges Mental Well-Being in Young People with Vision Impairment from Inherited Eye Disease |
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| Role | PhD Student |