Department of Ophthalmology, Flinders University, Flinders Medical Centre, Bedford Park, South Australia, Australia
Department of Ophthalmology, Women's and Children's Hospital, North Adelaide, South Australia, Australia.
BMJ Open. 2022 Jul 20;12(7):e062754. doi: 10.1136/bmjopen-2022-062754.
Childhood glaucoma is a chronic vision-threatening condition that may significantly impact an individual's psychosocial well-being. There is a paucity of literature investigating the quality of life (QoL) in children with glaucoma. The aim of this study was to investigate and report on the QoL issues encountered by children with glaucoma.
This is a qualitative interview study. Data were collected through semistructured interviews. NVivo V.12 software (QSR International Pty Ltd, Melbourne, Australia) was used to analyse and code data to identify QoL themes. The prominence of QoL themes was determined by the number of children who raised issues connected to the corresponding theme.
Interviews were conducted via telephone or videoconferencing between April 2020 and July 2021.
Eighteen children with glaucoma, aged 8-17 years, who resided in Australia, were recruited from the Australian and New Zealand Registry of Advanced Glaucoma.
Median child age was 12.1 years (IQR: 9.7-14.5 years) and 33% were female. Seven QoL themes were identified: 'coping', 'inconveniences' and 'emotional well-being' were more prominent themes than 'symptoms', 'ocular health concerns', 'social well-being' and 'autonomy'. Adaptive coping strategies included resilience throughout clinical examinations and establishing positive relationships with ophthalmologists. These minimised inconveniences related to clinic waiting times and pupillary dilatation. External to the clinical setting, children often dissociated from their glaucoma but struggled with glare symptoms and feeling misunderstood by fellow peers. Older children aged 13-17 years commonly disengaged from their glaucoma care and expressed an unwillingness to attend ophthalmic appointments. Older children further raised issues with career options, obtaining a driver's licence and family planning under the theme of autonomy.
The psychosocial impact of childhood glaucoma extends beyond the clinical environment and was minimised using coping strategies. Older children may require additional social and ophthalmic support as they transition into adulthood.
儿童青光眼是一种慢性致盲性疾病，可能严重影响个体的社会心理健康。目前，关于青光眼儿童生活质量（QoL）的文献很少。本研究旨在调查和报告青光眼儿童所面临的 QoL 问题。
这是一项定性访谈研究。通过半结构化访谈收集数据。使用 NVivo V.12 软件（QSR International Pty Ltd，澳大利亚墨尔本）对数据进行分析和编码，以确定 QoL 主题。通过提出与相应主题相关问题的儿童数量来确定 QoL 主题的重要性。
2020 年 4 月至 2021 年 7 月期间，通过电话或视频会议进行访谈。
从澳大利亚和新西兰高级青光眼登记处招募了 18 名年龄在 8-17 岁的青光眼儿童。
中位数患儿年龄为 12.1 岁（IQR：9.7-14.5 岁），33%为女性。确定了 7 个 QoL 主题：“应对”、“不便”和“情绪健康”是比“症状”、“眼部健康问题”、“社会福祉”和“自主权”更突出的主题。适应性应对策略包括在临床检查过程中保持韧性，并与眼科医生建立积极的关系。这最大限度地减少了与诊所等待时间和瞳孔扩张相关的不便。在临床环境之外，儿童通常与青光眼脱节，但因眩光症状和感到被同龄人误解而感到困扰。13-17 岁的较大儿童通常会脱离他们的青光眼护理，并表示不愿意参加眼科预约。较大的儿童进一步提出了关于职业选择、获得驾驶执照和家庭计划的问题，这些问题属于自主权主题。
儿童青光眼的社会心理影响超出了临床环境，通过应对策略得到了最小化。随着年龄的增长，较大的儿童可能需要额外的社会和眼科支持，以过渡到成年期。
