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Remote Indigenous Australians with cataracts: they are blind and still can’t see

Susan M Wearne
Med J Aust 2007; 187 (6): 353-356. || doi: 10.5694/j.1326-5377.2007.tb01280.x
Published online: 17 September 2007
Methods

Two researchers searched the electronic database MEDLINE 1966–2006 using the medical subject headings eye, cataract, ophthalmology, vision, Oceanic ancestry group, qualitative research, health services accessibility, and delivery of health care, and the key words Indigenous, Aborigin$, and blind. We searched the Australian Government website, the Australian Indigenous HealthInfoNet, the Medical Journal of Australia, the Australian and New Zealand Journal of Ophthalmology, Clinical and Experimental Ophthalmology and the Community Eye Health Journal for relevant articles. Each researcher independently read the titles and available abstracts. The resulting articles were read and assessed for their relevance. The reference lists of these articles were hand searched for further relevant articles.

Most articles on the barriers to cataract surgery come from large surveys in developing countries. This literature is relevant to remote Indigenous Australians whose morbidity and mortality statistics and access to health services resemble those experienced in developing countries. Indigenous Australians live in a developed country, but have blindness rates of 1% (compared with 0.1% blindness for non-Indigenous Australians), similar to rates in the populations of Indonesia, Nepal and Zimbabwe.9 Similarly, Indigenous Australians in remote communities maintain their cultural values of responsibility to family and community, rather than focus on the individual. Combining the literature from Australia and developing countries may reveal clues about the uptake of cataract surgery in Indigenous Australians.

The barriers to cataract surgery relate to health services, the community and the individual.

Health services barriers
Cost

In developing countries, cost is the major barrier to cataract surgery.13-16 Cataract surgery is free in public hospitals in Australia, but the indirect costs of surgery, including the carers’ cost of food, transport and loss of income,17,18 are not. How much cost deters remote Indigenous Australians needing cataract surgery is not known.

Transport and distance from a cataract centre

The utilisation of eye care services is lower in rural Victoria than in metropolitan Victoria,19 but there is no difference in cataract surgery rates.20 The distances involved in remote Australia exceed those experienced by rural Victorians.

International experience is that uptake of cataract surgery is lower in rural and remote areas than in urban areas.18 Geographical distance and transport18 are cited as barriers for patients and their families;16 if surgery is performed, distance remains an issue for accessing follow-up.21

Interpreters, escorts and transport

In Victoria, non-English speakers used eye services less.19 Interpreter services for Indigenous patients are patchy, despite English being the fourth or fifth language for many. Evidence shows that communication problems with Indigenous people extend beyond simple language issues.22

In central Australia, patient travel services only pay for transport if travel is more than 200 km and an escort depending on the clinical condition. Is this reasonable for a person who cannot see?

Consent issues

Patients, families and staff all reported a lack of information as a barrier to cataract surgery in The Gambia.16 The effect of information about cataract surgery is mixed. In most patients, information leads to a reduction in fear,23 but some prefer not to know.24 Increasing knowledge does not necessarily increase uptake of cataract surgery: “Physicians walk a tightrope between informing patients sufficiently and frightening them”.25 We need to find the optimum level of information to aid remote Indigenous Australians in making informed decisions about cataract surgery.

Community: role in society and expectations
Family influence

Social support is an important precondition to surgery.18 Fears of cataract surgery expressed by the family and community15,16 are barriers to cataract surgery, as are family dynamics27 if the dominant member does not see the need for eye care.19 We need to find out what the relevant family dynamics are for Indigenous Australians facing surgery.

Community influence

Remote Aboriginal Australians have a 28% chance of posterior capsule opacification within 5 years of cataract surgery.28 Seeing others “going blind” again following surgery — albeit from a treatable cause — may affect fellow community member’s enthusiasm. In India, the community misperceived continued poor vision after an operation as an operative failure, when the real cause was macular degeneration or glaucoma.15

Individual
Ignorance

Estimates from India are that about 50% of those blind from cataracts did not know they could be cured,18 and many did not know where they could get treatment.21 It is not known how many Indigenous Australians are in a similar situation.

Fear

Fear is a significant barrier to cataract surgery. There can be fear of the operation,30 fear of a poor outcome (ie, that the operation will damage the eye),15 fear that a check-up would show a real problem,21 and fear of death.15,27

In some instances, this fear is justified from having seen a bad outcome.15 The Western Australian data on endophthalmitis show a higher incidence for remote community people.31 Watching the experience of others28 affects the level of personal fear.16

Demographics

In Victoria, there were no differences in cataract surgery rates according to age, ethnicity, health insurance status, occupation or education level.20 Similarly, the Blue Mountains Eye Study showed no statistically significant difference in the incidence of cataract surgery for 5 years for any of the occupational categories.33 However, more recent data from Western Australia showed increased surgery rates for female and older patients, and lower rates for socioeconomically disadvantaged people and rural residents.34 The most advantaged underwent 9% more surgery than the most disadvantaged. These differences demonstrate the increasingly two-tiered Australian health system, with more privately provided cataract surgery in urban areas.

Other illness

Experience from overseas is that some patients want eye check-ups, but other medical problems prevent them from going.21 The high morbidity experienced by remote Indigenous Australians creates similar dilemmas, and the waiting list system means that patients accessing care in a regional centre for a comorbid condition cannot opportunistically seek cataract removal.

Useful interventions

There are two overseas initiatives to increase the rate of cataract surgery that may work in remote Australia: supported, opportunistic surgery, and aphakic motivators.

In eastern Africa,35 surgery rates increased when:

A study in Aravind, India, compared the cost-effectiveness of strategies to reduce the barriers to cataract surgery in 10 villages with 10 control villages.36 The interventions were an aphakic motivator (a person who had had a successful cataract operation), a basic eye health worker, a screening van, or a mass media campaign, and either fully funded or partially funded (excluding costs of transport or food) surgery. The most effective, but more costly, intervention was fully funded surgery and an aphakic motivator. Second best, and less expensive, was a mobile screening van. Aphakic motivators have subsequently proved effective in rural Malawi.37

The higher risk of endophthalmitis in remote Australians31 and high morbidity from other illnesses demand that surgery be performed in a sterile hospital environment. Cataract camps work effectively in developing countries, but anecdotal evidence is that this model had mixed results in central Australia.

Conclusion

Cataracts are a significant cause of preventable blindness in the remote Indigenous population. A comprehensive strategy is needed,38 and the National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss is welcome. Our approach must be comprehensive from the patients’ perspective as well as the providers’. The Box summarises the recommendations for action. The Fred Hollows Foundation is trialling the second recommendation of a fully funded and supported model of care in partnership with the Northern Territory and Commonwealth governments in central Australia.

Removal of external barriers by the provision of accessible and affordable surgery reveals other fundamental attitudinal barriers among the blind population.27 “People who do not use eye services know why they do not seek treatment. It is therefore critical that providers ask and listen to the views of their community”.39

Eye services in Australia could trial models that have been successful in developing countries. The literature suggests factors that could explain the underutilisation of cataract surgery in the Indigenous population. Research is needed to explore these factors to reduce the preventable burden of blindness of Aboriginal Australians.

  • Susan M Wearne1

  • Centre for Remote Health, Alice Springs, NT.



Acknowledgements: 

I want to thank Sarah Ford, research assistant, who assisted with the literature search. Vanessa Davis, a senior Arrernte woman, also contributed to this work until ill health forced her to leave the research team. My views have also been shaped by Juanita Sherwood and Tania Edwards, Indigenous academics, and the Indigenous Advisory Committee members: Terry Braun, Raymond Doolan, Yvonne Pepperill, Heather Rosas, and Ricky Tilmouth.

Competing interests:

None identified.

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