Module 2: Patient Barriers to Care

Although blindness in the developing world is usually curable, most patients do not receive medical attention. One recent study found that “over two thirds of adults over age 40 in a rural Indian population with low vision secondary to cataracts, glaucoma, and refractive error had never sought eye care,”(1) while another showed that “90 % of the people seeking eye care in poverty-stricken areas in Sri Lanka had similarly had no previous eye care.”(2) Why is it that visually impaired people do not seek eye care services even when care is available? The answer to this question is multifold, and itis important to note that lack of awareness about treatment availability and benefits is not the primary problem.(3) Rather, patients face a variety of barriers that combine to prevent them from seeking proper medical attention.

Cost

Financial barriers are commonly cited as reasons patients do not follow through with ophthalmic surgery.

“Cost was identified by 91% of respondents as the most important barrier to the uptake of cataract surgery.”(4)

Moreover, the price of an operation is not the sole cost associated with eye surgery; “hidden costs” amplify existing financial barriers.

“Free cataract surgery services can still entail a significant cost burden on patients and their families, as several studies of health care utilization have found. These hidden and unstated costs include transport, food and accommodation costs for accompanying family members, lost work income, and costs of post-operative medications. Negotiation for these funds was found to be more difficult for women than men, especially when widowed and living in rural communities.”(5)

Fear of Doctors

For many patients, fear of doctors and of the unfamiliar is another barrier to obtaining eye surgery.

 “Fear appears to be a major barrier in the region… Most patients expressed fear of the hospital environment, staff and loss of pride and dignity… Fear of the unknown appears to have played a major role in deciding on cataract surgery. In a study in Tanzania, it was reported that fear of the city, where to stay, what is going to happen when left alone in the hospital and similar fears far outweighed the perceived advantages of restored sight, among cataract patients.”(6)

“For many patients the fear of the unknown cannot be overcome. It has been said that for every unsuccessful operation, five good operations have to be done to counter the effect in the community.”(7)

Fear of Treatment

All surgery entails some risk, and the fear of a poor outcome can be enough to cause patients to forego treatment. This fear is frequently exacerbated by a poor understanding of the procedure, or by hearsay of surgeries gone awry recently, or even decades prior.

“The main source of information about cataract surgery services was usually a fellow patient, neighbor, or family member. The quality of this source of information varied widely, with some patients perceiving cataract surgery as a cause of mortality, having heard of someone who died after surgery.”(8)

“The fear of pain or the fear of complications during or after surgery is so strong that blindness and death appear preferable. They are simply not willing to come for cataract surgery, even free of charge: ‘I would rather stay blind; I better die than going for the operation.’”(9)

Fatalism, Inevitability, or “God’s Will”

Cultural beliefs about medicine influence a patient’s willingness to seek medical care. In cultures where diseases are believed to have non-medical causes, patients may not consider medical treatment such as surgery. Patients who believe blindness is an inevitable consequence of aging also fail to seek medical care.

“Rural patients often have a limited number of acquaintances and family members who have undergone cataract surgery. Thus, blindness in the elderly is often an expected condition. The main reasons that African patients offered cataract surgery did not proceed were fear of surgery and a belief that blindness was a natural consequence of increasing age, and could not be reversed.”(10)

Lack of Transportation

Distance from clinics is a physical barrier to obtaining eye care, exacerbated by the lack of transportation services. This is particularly true for those living in rural areas of Africa and Asia.

“Surgical services are much more available in urban areas, while the majority of cataract patients needing care are located in rural locations…In rural Africa, distance to the hospital was cited by one third of patients as the most important barrier to surgery.” (11)

Alternative Eye Care Services

In addition to the barriers listed above that “push” patients away from seeking eye care, traditional and/or herbal eye care techniques “pull” patients away from eye surgeries by offering an alternative treatment option.

 “The main alternatives to the regular eye-care service were chemical shops and indigenous herbal medicine. This phenomenon of alternative/parallel care is not surprising partly because of the relatively stronger numerical strength of chemical shops and herbalists in this district and the negative barriers against uptake of hospital services. There is an indication of relative inaccessibility of hospital eye services to the population. Reasons for this inaccessibility include the consumers' concept of who could provide eye care and their inability to distinguish between the different providers, and their perception of the hospital and its staff.”(12)

Footnotes

(1) Chang, M.A., Condon, N.G., Baker, S.K., Bloem, M.W., Savage, H. and Sommer, A. “The surgical management of cataract: barriers, best practices, and outcomes.” International Opthalmology. 28.4 (2008): 247-260.

(2) Holden, B.A. “Blindness and Poverty: A Tragic Combination.” Clinical and Experimental Optometry. 90.6 (2007): 401-403.

(3) Donoghue, M. “People Who Don’t Use Eye Services: ‘Making the Invisible Visible.’” Journal of Community Eye Health. 12.31 (1999): 36-38.

(4) Gyasi, M.E., Amoaku, W.M.K., and Asamany, D.K. “Barriers to Cataract Surgical Uptake in the Upper East Region of Ghana.” Ghana Medical Journal. 41.4 (2007): 167-170.

(5) Finger, R.P., Ali, M., Earnest, J., and Nirmalan, P.K. “Cataract Surgery in Andhra Pradesh State, India: An Investigation into uptake Following Outreach Screening Camps.” Ophthalmic Epidemiology. 14 (2007): 327-332.

(6) Gyasi, M.E., Amoaku, W.M.K., and Asamany, D.K. “Barriers to Cataract Surgical Uptake in the Upper East Region of Ghana.” Ghana Medical Journal. 41.4 (2007): 167-170.

(7) Cox, I. “The Patient’s View: How Can We Improve Patient Care?” Community Eye Health. 15.41 (2002): 3-4.

(8) Finger, R.P., Ali, M., Earnest, J., and Nirmalan, P.K. “Cataract Surgery in Andhra Pradesh State, India: An Investigation into uptake Following Outreach Screening Camps.” Ophthalmic Epidemiology. 14 (2007): 327-332.

(9) Geneau, R., Massae, P., Courtight, P., and Lewallen, S. “Using qualitative methods to understand the determinants of patients’ willingness to pay for cataract surgery: A study in Tanzania.” Social Science & Medicine. 66.3 (2008) 558-568.

(10) Chang, M.A., Condon, N.G., Baker, S.K., Bloem, M.W., Savage, H. and Sommer, A. “The surgical management of cataract: barriers, best practices, and outcomes.” International Opthalmology. 28.4 (2008): 247-260.

(11) Ibid.

(12) Ntim-Amponsah, C.T., Amoaku, W.M.K., and Ofosu-Amaah, S. “Alternate Eye Care Services in a Ghanaian District.” Ghana Medical Journal. 39.1 (2005): 19-23.