Quality of life in children with glaucoma: a qualitative interview study in Australia
Objective 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...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2022-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/7/e062754.full |
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| author | Emmanuelle Souzeau Jamie E Craig Sandra E Staffieri Lachlan S W Knight Bronwyn Ridge Mallika Prem Senthil |
| author_facet | Emmanuelle Souzeau Jamie E Craig Sandra E Staffieri Lachlan S W Knight Bronwyn Ridge Mallika Prem Senthil |
| author_sort | Emmanuelle Souzeau |
| collection | DOAJ |
| description | Objective 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.Design 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.Setting Interviews were conducted via telephone or videoconferencing between April 2020 and July 2021.Participants Eighteen children with glaucoma, aged 8–17 years, who resided in Australia, were recruited from the Australian and New Zealand Registry of Advanced Glaucoma.Results 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.Conclusions 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. |
| format | Article |
| id | doaj-art-0e907798fee34bd9974c974cd12610bf |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-0e907798fee34bd9974c974cd12610bf2025-01-31T11:05:11ZengBMJ Publishing GroupBMJ Open2044-60552022-07-0112710.1136/bmjopen-2022-062754Quality of life in children with glaucoma: a qualitative interview study in AustraliaEmmanuelle Souzeau0Jamie E Craig1Sandra E Staffieri2Lachlan S W Knight3Bronwyn Ridge4Mallika Prem Senthil5Department of Ophthalmology, Flinders University, Flinders Medical Centre, Bedford Park, South Australia, AustraliaOphthalmology, Flinders University of South Australia, Adelaide, South Australia, AustraliaDepartment of Ophthalmology, The Royal Children`s Hospital Melbourne, Parkville, Victoria, AustraliaDepartment of Ophthalmology, Flinders University, Flinders Medical Centre, Bedford Park, South Australia, AustraliaDepartment of Ophthalmology, Flinders University, Flinders Medical Centre, Bedford Park, South Australia, AustraliaCaring Futures Institute, College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, AustraliaObjective 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.Design 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.Setting Interviews were conducted via telephone or videoconferencing between April 2020 and July 2021.Participants Eighteen children with glaucoma, aged 8–17 years, who resided in Australia, were recruited from the Australian and New Zealand Registry of Advanced Glaucoma.Results 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.Conclusions 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.https://bmjopen.bmj.com/content/12/7/e062754.full |
| spellingShingle | Emmanuelle Souzeau Jamie E Craig Sandra E Staffieri Lachlan S W Knight Bronwyn Ridge Mallika Prem Senthil Quality of life in children with glaucoma: a qualitative interview study in Australia BMJ Open |
| title | Quality of life in children with glaucoma: a qualitative interview study in Australia |
| title_full | Quality of life in children with glaucoma: a qualitative interview study in Australia |
| title_fullStr | Quality of life in children with glaucoma: a qualitative interview study in Australia |
| title_full_unstemmed | Quality of life in children with glaucoma: a qualitative interview study in Australia |
| title_short | Quality of life in children with glaucoma: a qualitative interview study in Australia |
| title_sort | quality of life in children with glaucoma a qualitative interview study in australia |
| url | https://bmjopen.bmj.com/content/12/7/e062754.full |
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