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

The Australian health ministers have agreed that “All Australians should have equitable access to appropriate eye health care when required”.10 To ensure equity, waiting lists are created. But lists work against those for whom access to communication and transport is unreliable. Being put on a waiting list can mean that other life priorities take precedence on the eventual date of surgery. Many allocated theatre slots are wasted. Conversely, waiting lists mean that care cannot be provided opportunistically when patients are in a regional centre for other reasons.

The primary and secondary care systems and government bureaucracy designed to assist eye health can inadvertently become a barrier to its delivery. In a discussion paper from the Koori Health Research and Community Development Unit, Kaplan-Myrth criticised Aboriginal blindness prevention policy as echoing colonial practice; she argued that Indigenous Australians should shape their health services, not westernised specialists.11

In New South Wales, collaboration between the Aboriginal community, researchers, health care funders, health care providers and educators has increased access and uptake of eye services in Aboriginal Medical Services.12 This service is well used, but cannot provide surgery.

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.

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

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?

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.

Health professionals said African Americans’ knowledge and attitudes were barriers to cataract surgery. In contrast, the patients rated vision and eye care as important and their perceived barriers were trusting and communicating with the doctor, and cost.13 Not being comfortable with the eye doctor can be a barrier,21 and counselling by the ophthalmologist affects satisfaction with quality of care more than other eye health education.26

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.

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

The key to health and wellbeing is a balance and harmony with one’s culture. Indigenous people have told me that the dust and environment or people “being sung” cause eye problems. It may be hard to trust that an operation can cure a problem created by these causes.

Similarly, societal beliefs that cataract is just part of old age or God’s will act as barriers to cataract surgery.15,21 A mix of alignment of several factors is needed for surgery to go ahead.29

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.

Cataracts grow slowly. Gradual loss in vision is less noticeable than sudden loss. People adapt and manage despite poor vision and literally do not see the need for surgery.15,16,21,28 Surgery becomes a more acceptable option as blindness from cataract worsens.14

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

Personal beliefs are often intertwined with societal beliefs and so barriers noted at the community level also affect the individual. The effect on individuals of isolation from their land when having cataract surgery is assumed,32 but needs further exploration.

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.

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.