Care for counselling, counselling for care

Babs Verblackt, CNS Special Correspondent
TB patients more often than not struggle to understand their diagnosis and their medication regimen. At the same time they are dealing with fear, doubts and despair over their disease. Yet little attention is given to these issues in TB treatment. Patient counselling is key to TB treatment and care and should get better implemented, felt the experts at the ongoing 45th Union World Conference on Lung Health in Barcelona. Psychological support has been shown to improve treatment adherence and outcomes, yet TB programmes underemphasize patient counselling.

"Counseling is crucial to the TB response, yet many times forgotten. It is this lack of counseling that we need to address," said Blessina Kumar, chair of the Global Coalition of TB Activists. "Counseling is especially important for TB--if only because of the long duration of treatment and extremely severe side effects. So patients need almost to be handheld and receive counseling to go through it."

No one fits all
Petros Isaakidis, MSF
Photo credit: Babs V/ CNS
Patient counseling can come in various ways-- such as emotional or social support, motivation, treatment literacy and medication counseling. Different countries, regions and societies need different approaches. "There is no one-fits-all solution for counseling programs or strategies," said Petros Isaakidis, Medical Epidemiologist at Médecins Sans Frontières (MSF), sharing the experience of various MSF projects in India.

Counselling is not just about education and empowerment, he emphasized. "There is the whole emotional element. It is a way to talk and share. Patients do not always want to be judged or patronized, they sometimes want to say they are fed up, tired, frustrated."

Isaakidis also stressed the importance of expanding counselling to families and caregivers. "Families take the burden of disease too, especially if patients are not doing well."

Patient-turned-counsellor
Patients who successfully complete treatment can themselves become skilled counsellors. Busisiwe Beko from South Africa followed that path. At the Union Conference she shared her courageous and inspiring story. As a survivor of HIV and multi-drug resistant TB (MDR-TB), she knows exactly what patients are going through. And the often long and exhausting process of getting tested, waiting for the results, being diagnosed and feeling helpless. Her diagnosis and treatment got even more complicated because of her pregnancy at that time.
Busisiwe Beko, South Africa
Photo credit: Babs V/ CNS

"When I was told that I had MDR-TB, I did not know what it was-- nobody explained anything to me. There was no support from the clinic staff, no training, no awareness," she recalls. "Before treatment I was feeling sicker day by day. Later I was struggling with treatment, and the treatment of my baby daughter who was diagnosed with MDR-TB as well. I had to crush and feed her medicines while suffering horrible side effects myself."

"Things would be very different if was diagnosed today," Beko says. In 2007, the year she was cured, Medecins Sans Frontieres (MSF) and the local health authorities implemented a decentralized model of care for MDR-TB in Khayelitsha and she became a counsellor. The patient-centred programme includes medical services and various ways of support, including home visits, support groups and individual and family counselling. 

Ongoing process
As a counsellor Beko helps patients understand their disease and get through treatment. After educating the patients on the disease, she and the patient together make up an adherence plan that includes important and practical issues. For making the plan, the patients need to answer questions like giving three reasons to stay healthy and alive, planning how to go to the clinic and how to deal with side effects. "Together we also think of back up plans. If the patient for example will walk to the clinic, then we think of what happens when it rains. Maybe then a neighbor can drive the patient there."

In an interview with Citizen News Service (CNS), Beko said that, "Counseling is not something you should limit to two or three times. It must be an ongoing process until the patient fully understands and knows the disease and feels stronger. Because of my experience as a patient, it is easy for me to talk to other patients. There is a level of understanding that may not be there with counsellors who have not lived the experience of being a TB patient. Towards them the patients might shut down."

"Unless we support patients to understand their diagnosis and take their medication properly, there is no point of putting so much effort into better diagnostics and treatment. We should treat patients as human beings and not as a disease. We must respect them and not treat them as a bomb going to explode any time."

Training
The strength of former patients as counsellors was recognized and emphasized during the conference. "But we cannot just expect cured patients to do it. It is a job, we need to acknowledge that and train them. We should consider them as a resource," said Grania Brigden, a TB Advisor with MSF. "As a patient many have been stigmatized, they might have lost their jobs. For them counselling is also a potential for income after treatment."

And as one speaker said “Counselling is seen as something that is not needing expertise, while that is so not true. Making counsellors out of cured TB patients is something that should be further explored. Their work is more inspiring, much more connecting. There is always much talk on more funding for research and development and for drugs. But all this is indeed of no use if patients do not know or understand how to deal with the disease. We need to bridge that gap”.

Babs Verblackt, Citizen News Service - CNS
1 November 2014
(Lilly MDR TB Partnership is supporting CNS Correspondents' Team to provide thematic coverage from the 45th Union World Conference on Lung Health in Spain. Email: babs@citizen-news.org)

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