Noma is an infectious disease that eats away at facial tissues. Those who survive it are left disfigured and often find themselves shunned by society. Here, Doctors Without Borders/Médecins Sans Frontières (MSF) clinical psychologist in Nigeria Thomas Hoare describes why mental health support is such a vital part of treatment for noma patients.
Noma patients and their families face significant challenges in their lives. Young people with noma are often excluded socially by their peers on account of their disfigurement. To protect them, parents may keep children with noma at home. All of this impacts their confidence and self-esteem, as well as affecting their development and their opportunities to build up social skills.
I lead a psychosocial team made up of three experienced Nigerian counselors who speak the local language, Hausa, and have an excellent understanding of local culture. They build up trusting relationships with the patients and their families by engaging them in a program of activities.
Together we support the patient in developing coping skills and abilities that he or she may have missed out on due to being socially excluded. We also support the young person and their family in overcoming the emotional impact of the disfigurement. We promote the idea that the patient has strengths and abilities which should prevent disfigurement being a barrier to education, employment, or relationships.
When patients and their families come into the hospital for surgery, there are a host of other challenges. They may lack confidence in speaking to medical staff, be anxious about being in an unfamiliar hospital environment, or nervous about understanding complicated procedures. So as well as the individual and group counseling and psychosocial classes, we provide them with information about the hospital and the medical procedures they will undergo.
Noma mostly affects young children, but we see adult sufferers too. With very young children, we work primarily with the parents, helping them understand the surgical processes. This reassures the parents, who in turn can support their child. With older children, we may use stories to help them understand what will happen to them. For older teenagers and adults, we usually have direct conversations with them about the surgery and what will happen, as well as giving them the opportunity to ask questions.
We also work with the rest of the hospital staff to ensure that they know about each patient’s circumstances and level of anxiety about the surgery, so that these can be considered when preparing someone for an operation. Equally, our team can communicate any decisions made by the surgical team back to the patients.
Building Social Skills and Self-Esteem
We do all of this with the aim of helping people with noma to come to terms with disfigurement, reflect on their strengths and abilities, and make their time in hospital more comfortable. My role has been to oversee, guide, and develop this program of activities.
Following surgery, patients need to have their surgical wounds cleaned and dressed, and young children especially can find this process distressing. Our team spends time with patients before, during, and after this process to provide support and distraction activities.
While the surgery can have a dramatic impact on patients’ appearance and how they feel about themselves, they may be left with some disfigurement, such as scarring and skin discoloration. Counselors can help prepare patients for this.
Post-surgical psychosocial care represents a crucial part of recovery. This may involve helping patients to understand the process of recovery and supporting them with pain management during critical times. We also involve the young people in activities like music, drawing, games, and educational activities, and involve them in group and individual counseling. Later, we refer them to other services for education and work opportunities.
It’s challenging work—everyone in the team would agree. Working with children and families who are distressed, helping patients emotionally, and recognizing that some problems are beyond our ability to deal with can all be difficult. But it’s also extremely rewarding. It is a privilege to develop trusting and collaborative relationships with patients and work in this setting. It is encouraging to see patients feeling reassured and more positive about their time in hospital. Often, after patients have left hospital, they stay in touch by phone and let the team know how they are getting on.