{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T20:27:55Z","timestamp":1792787275981,"version":"4.5.0"},"reference-count":43,"publisher":"BMJ","issue":"9","license":[{"start":{"date-parts":[[2026,9,27]],"date-time":"2026-09-27T00:00:00Z","timestamp":1790467200000},"content-version":"unspecified","delay-in-days":26,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["Career Development Award 306332\/Z\/23\/Z"],"award-info":[{"award-number":["Career Development Award 306332\/Z\/23\/Z"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100017645","name":"Moorfields Eye Charity","doi-asserted-by":"publisher","award":["GR001499"],"award-info":[{"award-number":["GR001499"]}],"id":[{"id":"10.13039\/501100017645","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100011718","name":"Macular Society","doi-asserted-by":"publisher","award":["22-RG-1"],"award-info":[{"award-number":["22-RG-1"]}],"id":[{"id":"10.13039\/100011718","id-type":"DOI","asserted-by":"publisher"}]},{"name":"National Institute for Health and Care Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology","award":["NA"],"award-info":[{"award-number":["NA"]}],"id":[{"id":"https:\/\/ror.org\/03zaddr67","id-type":"ROR","asserted-by":"crossref"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2026,9,7]]},"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Low vision and ophthalmology clinics in England.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Six young people aged 13\u201318 years with VI caused by inherited macular disease and 12 parents of young people with VI caused by inherited macular disease.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Four overarching themes were developed: (1)\n                      <jats:italic>Living in the aftermath of diagnosis<\/jats:italic>\n                      , capturing participants\u2019 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)\n                      <jats:italic>Fighting the system<\/jats:italic>\n                      , reflecting how parents and CYP navigate both formal and informal support systems, highlighting the barriers they face; (3)\n                      <jats:italic>Being seen and being misunderstood<\/jats:italic>\n                      , encapsulating how VI influences the way that participants experience relationships, develop a sense of self and navigate their place within society; and (4)\n                      <jats:italic>Building a life with vision impairment<\/jats:italic>\n                      , centring on how participants function in everyday contexts while living with VI, alongside their aspirations for building their lives and living well in adulthood.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2026-125977","type":"journal-article","created":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T17:01:07Z","timestamp":1790614867000},"page":"e125977","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["\u2018You\u2019re still the same person, but you\u2019re just seeing a bit less\u2019: a qualitative study of the impact of vision impairment on mental well-being in children and young people with inherited eye disease in England"],"prefix":"10.1136","volume":"16","author":[{"given":"Rachael F","family":"Canavan","sequence":"first","affiliation":[{"name":"UCL Institute of Ophthalmology, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marc S","family":"Tibber","sequence":"additional","affiliation":[{"name":"Research Department of Clinical, Educational and Health Psychology, University College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ethan R","family":"Tailor","sequence":"additional","affiliation":[{"name":"Eye-Young Persons Advisory Group, NIHR Moorfields Biomedical Research Centre, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tessa M","family":"Dekker","sequence":"additional","affiliation":[{"name":"UCL Institute of Ophthalmology, London, UK"},{"name":"UCL Division of Psychology and Language Sciences, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michel","family":"Michaelides","sequence":"additional","affiliation":[{"name":"UCL Institute of Ophthalmology, London, UK"},{"name":"NIHR Moorfields Biomedical Research Centre, London, UK"},{"name":"Moorfields Eye Hospital NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ngozi","family":"Oluonye","sequence":"additional","affiliation":[{"name":"Moorfields Eye Hospital NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dayyanah","family":"Sumodhee","sequence":"additional","affiliation":[{"name":"UCL Institute of Ophthalmology, London, UK"},{"name":"Moorfields Eye Hospital NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6833-6043","authenticated-orcid":false,"given":"Michael D","family":"Crossland","sequence":"additional","affiliation":[{"name":"UCL Institute of Ophthalmology, London, UK"},{"name":"NIHR Moorfields Biomedical Research Centre, London, UK"},{"name":"Moorfields Eye Hospital NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2026,9,28]]},"reference":[{"key":"2026092810003504000_16.9.e125977.1","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2025-101753","article-title":"Association between self-reported vision and mental well-being: a cross-sectional secondary analysis of Health Survey for England data","volume":"15","author":"Crossland","year":"2025","journal-title":"BMJ Open"},{"key":"2026092810003504000_16.9.e125977.2","doi-asserted-by":"publisher","DOI":"10.1093\/gerona\/glz148"},{"key":"2026092810003504000_16.9.e125977.3","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1007\/s10389-023-01995-1","article-title":"Quality of life in people with visual impairment compared with the general population","volume":"33","author":"Bonsaksen","year":"2025","journal-title":"J Public Health (Berl)"},{"key":"2026092810003504000_16.9.e125977.4","doi-asserted-by":"crossref","first-page":"2633","DOI":"10.1007\/s11136-016-1292-8","article-title":"Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach","volume":"25","author":"Rainey","year":"2016","journal-title":"Qual Life Res"},{"key":"2026092810003504000_16.9.e125977.5","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1016\/bs.pbr.2025.04.001","article-title":"Well-being, mental health and sleep in children and young people with vision impairment: A narrative review","volume":"292","author":"Canavan","year":"2025","journal-title":"Prog Brain Res"},{"key":"2026092810003504000_16.9.e125977.6","doi-asserted-by":"publisher","DOI":"10.1136\/bjophthalmol-2013-303578"},{"key":"2026092810003504000_16.9.e125977.7","doi-asserted-by":"publisher","DOI":"10.1016\/j.ophtha.2023.02.002"},{"key":"2026092810003504000_16.9.e125977.8","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-019-1096-y"},{"key":"2026092810003504000_16.9.e125977.9","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2020.103634"},{"key":"2026092810003504000_16.9.e125977.10","doi-asserted-by":"publisher","DOI":"10.1016\/j.ics.2005.04.017"},{"key":"2026092810003504000_16.9.e125977.11","doi-asserted-by":"crossref","DOI":"10.3390\/ijerph192114600","article-title":"Loneliness and Social Support among the Middle-Aged and Elderly People with Visual Impairment","volume":"19","author":"Chu","year":"2022","journal-title":"Int J Environ Res Public Health"},{"key":"2026092810003504000_16.9.e125977.12","unstructured":"Canavan RF , Tibber MS , Oluonye N , et al . n.d. This sense of not feeling whole\u2019: A qualitative reflexive thematic analysis study of mental well-being in adults with vision impairment from inherited eye disease. In press. Br J Vis Impai."},{"key":"2026092810003504000_16.9.e125977.13","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2025.101820"},{"key":"2026092810003504000_16.9.e125977.14","doi-asserted-by":"crossref","DOI":"10.3389\/fnhum.2021.689683","article-title":"Bridging the Gap: Parent and Child Perspectives of Living With Cerebral Visual Impairments","volume":"15","author":"Goodenough","year":"2021","journal-title":"Front Hum Neurosci"},{"key":"2026092810003504000_16.9.e125977.15","doi-asserted-by":"crossref","first-page":"522","DOI":"10.1177\/0145482X0009400805","article-title":"Physical Activity, Self-concept, and Global Self-worth of Blind Youths in Norway and France","volume":"94","author":"Gr\u00f8nmo","year":"2000","journal-title":"Journal of Visual Impairment & Blindness"},{"key":"2026092810003504000_16.9.e125977.16","doi-asserted-by":"crossref","DOI":"10.1080\/17482631.2018.1435097","article-title":"Leisure and health benefits among Korean adolescents with visual impairments","volume":"13","author":"Kim","year":"2018","journal-title":"Int J Qual Stud Health Well-being"},{"key":"2026092810003504000_16.9.e125977.17","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1177\/0145482X1010400706","article-title":"The Social Lives of Canadian Youths with Visual Impairments","volume":"104","author":"Gold","year":"2010","journal-title":"Journal of Visual Impairment & Blindness"},{"key":"2026092810003504000_16.9.e125977.18","doi-asserted-by":"crossref","DOI":"10.1167\/iovs.62.7.14","article-title":"Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores","volume":"62","author":"Elsman","year":"2021","journal-title":"Invest Ophthalmol Vis Sci"},{"key":"2026092810003504000_16.9.e125977.19","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2019.1589587"},{"key":"2026092810003504000_16.9.e125977.20","doi-asserted-by":"crossref","first-page":"1183","DOI":"10.1007\/s11482-019-09724-1","article-title":"Exploring Wellbeing in Youth with Vision Impairment: Insights for Vision Rehabilitation","volume":"15","author":"Anderson","year":"2020","journal-title":"Applied Research Quality Life"},{"key":"2026092810003504000_16.9.e125977.21","doi-asserted-by":"crossref","first-page":"452","DOI":"10.1007\/s10942-021-00419-x","article-title":"Assessing the Efficacy of Rational Emotive Behavior Intervention for Visually Impaired Upper Basic School Children with Negative Self-belief\/Personal Value System","volume":"40","author":"Ede","year":"2022","journal-title":"J Rat-Emo Cognitive-Behav Ther"},{"key":"2026092810003504000_16.9.e125977.22","doi-asserted-by":"publisher","DOI":"10.1016\/j.survophthal.2019.01.010"},{"key":"2026092810003504000_16.9.e125977.23","unstructured":"Eniola M , Ajobiewe AI . Effects of Emotional Intelligence and Locus of Control Training on the Psychological Well-Being of Adolescents with Visual Impairments in Nigeria. J Int Assoc Spec Educ 2013;2013."},{"key":"2026092810003504000_16.9.e125977.24","doi-asserted-by":"crossref","first-page":"1","DOI":"10.54615\/2231-7805.47235","article-title":"Improving emotional dysregulation and well-being among visually challenged adolescents: Efficacy of acceptance and commitment therapy (act)","volume":"23","author":"Riaz","year":"2022","journal-title":"AJOP"},{"key":"2026092810003504000_16.9.e125977.25","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2018.1510552"},{"key":"2026092810003504000_16.9.e125977.26","unstructured":"World Health Organisation . Mental health. 2025."},{"key":"2026092810003504000_16.9.e125977.27","doi-asserted-by":"crossref","DOI":"10.3390\/jcm11092412","article-title":"The Association between Vision Impairment and Depression: A Systematic Review of Population-Based Studies","volume":"11","author":"Virgili","year":"2022","journal-title":"J Clin Med"},{"key":"2026092810003504000_16.9.e125977.28","article-title":"The prevalence of anxiety symptoms and disorders among ophthalmic disease patients","volume":"14","author":"Ulhaq","year":"2022","journal-title":"Ther Adv Ophthalmol"},{"key":"2026092810003504000_16.9.e125977.29","doi-asserted-by":"crossref","first-page":"331","DOI":"10.1111\/opo.12784","article-title":"The development of posttraumatic stress disorder in individuals with visual impairment: a systematic search and review","volume":"41","author":"van der Ham","year":"2021","journal-title":"Ophthalmic Physiologic Optic"},{"key":"2026092810003504000_16.9.e125977.30","unstructured":"Canavan RF , Hayton J , Tibber MS , et al . Well-being, mental health and sleep in children and young people with vision impairment: A narrative review. Progress in Brain Research. Elsevier, 2025."},{"key":"2026092810003504000_16.9.e125977.31","unstructured":"Canavan RF , Tibber MS , Dekker TM , et al . This sense of not feeling whole\u201d: a qualitative analysis of mental wellbeign in adults with inherited mecular disease. International Society for Low Vision Research and Rehabilitation; 2025."},{"key":"2026092810003504000_16.9.e125977.32","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1628806"},{"key":"2026092810003504000_16.9.e125977.33","doi-asserted-by":"crossref","first-page":"705","DOI":"10.1080\/2159676X.2020.1840423","article-title":"Developing the craft: reflexive accounts of doing reflexive thematic analysis","volume":"13","author":"Trainor","year":"2021","journal-title":"Qual Res Sport Exerc Health."},{"key":"2026092810003504000_16.9.e125977.34","doi-asserted-by":"crossref","first-page":"320","DOI":"10.1108\/QRJ-08-2020-0101","article-title":"Critical realism: what you should know and how to apply it","volume":"21","author":"Lawani","year":"2021","journal-title":"Qual Res J"},{"key":"2026092810003504000_16.9.e125977.35","doi-asserted-by":"publisher","DOI":"10.1177\/10778004211048379"},{"key":"2026092810003504000_16.9.e125977.36","doi-asserted-by":"crossref","first-page":"328","DOI":"10.1080\/14780887.2020.1769238","article-title":"One size fits all? What counts as quality practice in (reflexive) thematic analysis?","volume":"18","author":"Braun","year":"2021","journal-title":"Qual Res Psychol"},{"key":"2026092810003504000_16.9.e125977.37","doi-asserted-by":"crossref","DOI":"10.3389\/fpsyg.2026.1793016","article-title":"Mapping ecological paradigms in educational psychology: a decade of scholarship in Frontiers in Psychology (2013-2025)","volume":"17","author":"Tong","year":"2026","journal-title":"Front Psychol"},{"key":"2026092810003504000_16.9.e125977.38","doi-asserted-by":"publisher","DOI":"10.1037\/0003-066X.32.7.513"},{"key":"2026092810003504000_16.9.e125977.39","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(98)00411-0"},{"key":"2026092810003504000_16.9.e125977.40","doi-asserted-by":"publisher","DOI":"10.1080\/13816810.2020.1855663"},{"key":"2026092810003504000_16.9.e125977.41","doi-asserted-by":"publisher","DOI":"10.1007\/s40123-026-01362-9"},{"key":"2026092810003504000_16.9.e125977.42","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1007\/s44402-026-00081-9","article-title":"Loneliness and Mental Wellbeing in People With Inherited Macular Disease","volume":"46","author":"Crossland","year":"2026","journal-title":"Ophthalmic Physiol Opt"},{"key":"2026092810003504000_16.9.e125977.43","doi-asserted-by":"publisher","DOI":"10.1111\/opo.12989"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2026-125977","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T17:01:12Z","timestamp":1790614872000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2026-125977"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9]]},"references-count":43,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2026,9,28]]},"published-print":{"date-parts":[[2026,9]]}},"alternative-id":["10.1136\/bmjopen-2026-125977"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2026-125977","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9]]}}}