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Original research
Factors influencing the decision-making of carers of children with bilateral cataract in Nepal
  1. Suzannah J Bell1,
  2. Tirtha Singh2,
  3. Catey Bunce3,
  4. Sanjay Kumar Singh2,
  5. Cova Bascaran4,
  6. Clare Gilbert4,
  7. Allen Foster4
  1. 1Research and Development, Moorfields Eye Hospital NHS Foundation Trust, London, UK
  2. 2Paediatric Ophthalmology, Sagarmatha Choudhary Eye Hospital, Lahan, Nepal
  3. 3Primary Care and Public Health Sciences, Kings College London, London, UK
  4. 4Clinical Research Department, Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, International Centre for Eye Health, London, UK
  1. Correspondence to Dr Suzannah J Bell; suzannah.bell{at}nhs.net

Abstract

Objectives Two hundred thousand children worldwide are blind from cataract. Late presentation for surgery resulting in poor visual outcomes is a problem globally. We aimed to explore the reasons why children are not brought earlier for surgery in Nepal.

Methods and analysis Mixed-method study of carers of children with bilateral cataract attending a large non-government eye hospital were administered a proforma. A random sample took part in semistructured interviews and focus group discussions.

Results Carers of 102 children completed proformas; 10 interviews and 2 focus group discussions were held. 80.4% were Indian, 35.3% of children were female, and their mean age was 58 months (range 4 months to 10 years). Median delay in time between the carer first noticing a problem to presentation was 182 days IQR (60.8–364.8). This was significantly longer for girls (median 304 IQR (91.2–1094.4)) than boys (median 121.6 IQR (30.4–364.8); p=0.02). Cost to access care was a problem for 42 (41.2%) carers. 13 (12.8%) participants were not aware of treatment and 12 (11.8%) were aware but did not seek treatment. The community influenced carer’s health-seeking behaviour. Cataract was sometimes described as ‘phula’, meaning something white seen on the eye.

Conclusion Fewer girls presented for surgery, and they also had a significantly longer delay to presentation than boys. Carers are influenced by factors at family, community and socio-organisational levels. Approaches to increase timely access, particularly by girls, are required, such as health education using the term phula, which is widely understood.

  • child health (paediatrics)
  • eye (globe)
  • lens and zonules
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjophth-2019-000422

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    Footnotes

    • Contributors SJB and TS conducted the study. CB helped analyse the data. SKS supervised the study. CB and CG helped plan the study. AF supervised the study.

    • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

    • Competing interests CB is partly funded/supported by the National Institute for Health Research Biomedical Research Centre based at Guy’s and St Thomas’ NHS Foundation Trust and King’ College London.

    • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

    • Patient consent for publication Not required.

    • Ethics approval Ethical approval was obtained from the ethics committees of the London School of Hygiene & Tropical Medicine and SCEH.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available upon request.