Mapping the Language of Mental Health, Redefining Care for HIV-affected Youth

by Anne Stevenson

In Rwanda, a group of researchers are mapping the words used by children and teenagers affected by HIV to describe their emotions and experiences. The Family Strengthening Intervention (FSI) project has compiled – and at times helped develop – an incredibly nuanced vocabulary to be used by doctors and social workers addressing the mental health needs of a vulnerable population.

Led by Dr. Theresa Betancourt of the Harvard School of Public Health, Co-Investigator Dr. William Beardslee of Children's Hospital Boston, and Anne Stevenson, Research Manager, the FSI team has interviewed over 600 children and adults in villages throughout southeastern Rwanda’s Kayonza and Kirehe districts since 2007 – a crucial step towards providing culturally appropriate psychosocial care to children affected by HIV.

Read about Uwimana, a 10-year-old boy whose life has improved dramatically as a result of community trainings connected to the Family Strengthening Intervention project.

Victims of genocide and HIV

In Rwanda, the dual effects of the 1994 genocide and the HIV epidemic continue to be felt throughout the country. With hundreds of thousands dead or infected, the HIV epidemic has devastated tens of thousands of families – causing family conflict and economic insecurity. Compounding all of this are the lingering effects of the genocide, which left nearly a million dead and another two million displaced, creating permanent and damaging implications for family and social structures.

As a result, too many of Rwanda’s children are at increased risk for mental health problems and low educational attainment. Yet, the mental health needs of children often receive little attention as families struggle to address immediate medical concerns and the burdens of poverty.

While physicians and social workers can offer young people strategies for dealing with debilitating emotional and socioeconomic situations, these interventions can only work if the entire community is supporting its children. By educating communities and health workers, the FSI project will prevent and treat children affected by mental health problems.

The language of healing

“Previous research has identified locally relevant terms for some mental health constructs among Rwandan adults,” according to Dr. Betancourt and her team, but little formal work has been done with children and adolescents. While all people feel sad or lonely, feelings carry culturally specific meanings. This is doubly true when dealing with young people, say the study’s authors.

The team has identified six local syndrome terms and their associated symptoms, as well as five important local protective processes – strengths that prevent and mitigate problems.

The FSI holds a training with mental health clinicians from Kayonza District and the Ministry of Health.

Symptoms

guhangayika – worry, stress
agahinda kenshi – more severe sadness, sorrow
kwiheba severe – hopelessness
ihahamuka – post-traumatic depression or shock 
uburara – delinquency and high-risk behavior
umushiha  -- annoyance, grouchiness

Protective Processes

kwihangana – perseverance
kwigirira ikizere – self-esteem/confidence
kwizerana family – unity/trust
kurera neza – good parenting
ubufasha abaturage batanga – social support 

Using these terms, the project has been able to “create easy-to-use, understandable, and accurate tools that can be used by providers to assess problems and strengths,” writes the FSI team.

Turning a community initiative into a national project

So far, the mental health measures developed by the FSI are performing well, and have the potential to be used in the future. While compiling research the FSI team was also able to identify and refer a number of at-risk children living near the PIH-supported Rwinkwavu District Hospital.

Dr. Betancourt is proud that this work is helping children today, while at the same time FSI’s research and advocacy are laying the groundwork for stronger local and national mental health responses.

In future phases of the research, the FSI will be completing development of a project adapted from the groundbreaking “Family Talk” intervention developed by Dr. William Beardslee at Children’s Hospital Boston, a co-investigator who will pilot this project among local families.

In the end, FSI hopes that its work will be integrated into Rwanda’s national health care system by the government and available to local community advisors throughout Rwanda, as part of a large-scale effort aimed at preventing mental health problems in children affected by HIV.

Learn more about the FSI's work, read:

"Understanding locally, culturally, and contextually relevant mental health problems among Rwandan children and adolescents affected by HIV/AIDS," in AIDS Care.

“Nothing can defeat combined hands (Abashize hamwe ntakibananira): Protective processes and resilience in Rwandan children and families affected by HIV/AIDS” in Social Science & Medicine.

Learn more about PIH’s work in Rwanda.