This week Rebekah and I had the wonderful opportunity of being placed in the ART clinic, at Lewanika General Hospital. The ART clinic provides HIV testing, management services, and counselling for those living with HIV. Lewanika is a primary health care facility in Western Province, acting as the catchment area and the primary treatment facility for people living with HIV/AIDS. As we recognized quickly, the ART clinic is a very busy section of the hospital, treating upwards of 800 patients per day.
Rebekah and I rotated through many roles, from triage, to taking blood, HIV testing, and eventually found ourselves in the adherence counselling room. In adherence, we worked closely with fabulous counsellors, our job being to see every patient before they left the clinic. It is the counsellor's responsibility to educate on the importance of adherence to treatment programs, educate on eliminating the spread of infection (through safe sex practices and mother to child transmission during pregnancy), and also to promote healthy lifestyle practices such as good diet and hygiene. This counselling appointment also is an opportunity for counsellors to assess the patient's coping mechanisms, support systems, and overall outcome of HIV management.
Here in the adherence counselling centre, is where we met the most lively and knowledgeable counsellor, Vasco. Vasco is extremely passionate about his role as a counsellor, but shared with us some of the barriers he faces with patients every day. He explained to us his struggle when providing HIV care, counselling, and education to those living with disabilities. In particular he talked about his struggle with patients who are deaf. Vasco does know some sign language, and uses it to communicate with deaf patients who come through counselling. However, his sign language is limited, and no other counsellors in the clinic have this skill. Vasco explained to us that this communication barrier is a major issue when faced with providing HIV counselling and care to deaf patients.
According to The World Health Organization (WHO) nearly two million people are living with disabilities in Zambia, and these people face multiple barriers to HIV prevention, testing, and treatment. While the Zambian government has made progress scaling-up its response to HIV generally, few programs are accessible to people with disabilities, and social stigma prevents their access to HIV services on an equal basis with others.
Vasco has recognized a need for a change in the HIV counselling services provided to the deaf community. Collecting data on the rates of medication adherence and HIV mortality rates among those who are HIV positive and deaf, he has found that over 75% of the deaf population he saw in his counselling clinic within the past five years have passed away from HIV/AIDS. He strongly believes that if the deaf community could overcome communication barriers in the ART clinic medication adherence rates and positive lifestyle changes would increase, in return decreasing mortality rates.
We have noticed on multiple occasions that Social Determinants of Health have a major impact on individuals in Zambia, this is especially true for those living with disabilities. Reasons for poor drug adherence and HIV outcomes being common among the deaf community is complex. These individuals are more at risk when considering factors known to exacerbate vulnerability to HIV, such as poverty, lack of education, sexual abuse, substance abuse, and access to health care.
The lack of education that patients who are deaf receive is one of the main contributing factors to poor HIV/AIDS treatment outcomes. Vasco explained to us, that if a deaf individual does not bring their own interpreter to the clinic, there is no way for them to receive the education about HIV transmission. They will also lack information on the purpose, importance, and possible side effects of ARV medication they have been prescribed. Even when a sign language interpreter is present, they often experience judgemental stares from other patients as well as a negative reception from some of the health care workers. Ultimately when disabled individuals enter the clinic for education, they are not receiving the same treatment as those without disabilities. It is no surprise that many of these patients default on their medications and stop seeking treatment at the clinic.
Rather than receiving education to empower them and improve their treatment outcomes, they are often discriminated against, contributing to their poor treatment outcomes.
Multiple barriers and stigmas exist for persons with disabilities within their communities, resulting in a higher risk of them missing treatment and educational opportunities external to formal clinics. Perceived as less likely to engage in sexual activity, they are often excluded from community gatherings where government workers or nongovernmental organizations dispense condoms while providing education about the virus. Some disabilities, such as deafness, are also associated with witchcraft, leading to additional discrimination in their communities. Children with disabilities are less likely to attend school, where HIV is discussed, and many schools don't offer the information in accessible formats, such as large print or braille. Women with disabilities are especially vulnerable to abuse and abandonment since they are often dependent on others for care and support. Also, Men who choose to be with a woman with a disability may also be stigmatized by their community, leading to sub optimal treatment for them and their families.
To bring better awareness to the support needed for this group, their exclusion must become more visible. Working with Vasco made us realize that it is being noticed by some health care workers within the community. However, there needs to be further measures implemented to better support these passionate health care workers in managing ART. In addition policy makers, clinical officers, nurses and health care workers involved in the delivery of HIV services can contribute to better treatment outcomes by reducing stigma and negative attitudes towards these individuals. By addressing the physical and psychological barriers to proper care, health practitioners will be better equipped at recognizing communication issues, and therefore be able to provide improved treatment to these currently disenfranchised individuals.
- Courtney & Rebekah