Promoting vision-related quality of life : first stage development of a model for intervention from evidence of what matters most to visually impaired children and their families

Šemrov, Ana (author), Rahi, Jugnoo Sangeeta (mentor)

Childhood visual impairment (VI) can significantly impact an individual’s psychosocial development and functioning. Understanding which risk and protective factors influence these outcomes is essential to provide recommendations for intervention targets to improve outcomes. Yet, few studies have examined the wide-ranging factors impacting psychosocial adjustment outcomes of children and young people with VI (CYP-VI). To address this evidence gap, in my PhD project, I aimed to identify: • The key factors associated with vision-related quality of life (VQoL) and positive psychosocial adjustment outcomes of CYP-VI and their parents. • The crucial time-points at which these factors employ the greatest influence. This thesis presents a mixed-methods study, combining a systematic literature review and VQoL determinants study using archived data, followed by novel primary research in which 81 families of CYP-VI (aged 8-18 years) participated in a postal questionnaire survey, and 18 of these families also took part in the semi-structured interviews. Quantitative analysis revealed a broad spectrum of individual, family, and societal factors affecting psychosocial adjustment outcomes of CYP-VI and their carers, such as self-esteem, functional vision, carer’s mental health, and peer support. Qualitative analysis identified the critical life events and transitions, including the time of VI / other health diagnoses, changes in the educational setting, developmental stage, parental separation, family deaths, moving houses, bullying incidents, and participation in extracurricular activities. The findings emphasise that psychosocial adjustment outcomes of CYP-VI cannot be predicted solely by clinical characteristics or conventional measures of deprivation. Family, school, and healthcare all play significant roles in their adjustment. Thus, a multidisciplinary care approach involving non-formal support like vision loss charities is vital. Future research should focus on developing community-based, family-centred interventions to address the needs of CYP-VI and their carers. School-based interventions involving classmates and relevant staff may further mitigate their influences on the psychosocial adjustment outcomes of CYP-VI.

• Language: English
• Keywords: vision disorders, mental health, quality of life, children, adolescents, resilience (psychological), dissertations
• Work type: Doctoral dissertation
• Typology: 2.08 - Doctoral Dissertation
• Organization: FF - Faculty of Arts
• Publication status: Published
• Publication version: Version of Record
• Place of publishing: London
• Publisher: A. Šemrov
• Year: 2024
• Number of pages: 476 str.
• PID: 20.500.12556/RUL-170479
• UDC: 159.9:617.75-053.5/.6(043.3)
• COBISS.SI-ID: 241558787
• Publication date in RUL: 07.07.2025

Licences

• License: CC BY-NC 4.0, Creative Commons Attribution-NonCommercial 4.0 International
• Link: http://creativecommons.org/licenses/by-nc/4.0/
• Description: A creative commons license that bans commercial use, but the users don’t have to license their derivative works on the same terms.

Secondary language

• Language: Slovenian
• Keywords: motnje vida, slabovidnost, duševno zdravje, kakovost življenja, otroci, mladostniki, osebnostna prožnost, doktorske disertacije

Projects

• Funder: Other - Other funder or multiple funders
• Funding programme: Fight for Sight
• Project number: 5043/5044
• Acronym: FS

• Funder: Other - Other funder or multiple funders
• Funding programme: Ulverscroft Foundation
• Acronym: UF