When Oral Health Hurts More Than Teeth
Understanding how people with and without HIV perceive oral diseases in Rwanda
Why oral health matters beyond the mouth
Tooth decay and gum disease are often seen as minor problems—something to endure until the pain becomes unbearable. But for many people, especially those living with chronic conditions like HIV, oral diseases can quietly shape daily life, self-esteem, and social interactions.
A recent qualitative study from Rwanda sheds light on this often-overlooked issue by listening directly to patients. Instead of focusing on numbers and clinical charts, the researchers explored how adults—both HIV-positive and HIV-negative—understand the causes and consequences of common oral diseases in their own words.
Listening to patients’ voices
The context behind the study
Oral diseases such as dental caries (tooth decay) and periodontal disease (gum disease) are widespread worldwide and can severely affect quality of life. In Rwanda, however, research on oral health—especially studies capturing patients’ perspectives—remains limited.
Previous studies mostly relied on quantitative data, showing that people living with HIV tend to have higher rates of oral diseases. What was missing was a deeper understanding of how patients themselves explain these conditions and how oral diseases affect their physical, emotional, and social lives.
This study aimed to fill that gap.
What did the researchers do?
A qualitative approach in a clinical setting
The researchers conducted in-depth interviews with 21 adults attending an HIV clinic at Kigali Teaching Hospital. Among them were 10 HIV-positive and 11 HIV-negative individuals, all diagnosed with dental caries and/or periodontal disease.
Interviews were carried out in Kinyarwanda, recorded, transcribed, and analyzed using thematic content analysis. By using an inductive approach, the researchers allowed themes to emerge naturally from participants’ stories—capturing lived experiences that numbers alone cannot reveal.
What causes oral diseases, according to patients?
More than just brushing habits
Participants described a wide range of perceived causes, which fell into two broad categories:
1. Individual-related factors
Many participants pointed to everyday behaviors and personal circumstances, including:
Frequent consumption of sugary foods and drinks
Poor or irregular oral hygiene
Delayed visits to the dentist
Lack of knowledge about dental care
Poverty and inability to afford toothpaste or dental treatment
Older age and heredity
HIV-positive participants also mentioned antiretroviral therapy (ARVs) and HIV infection itself as possible contributors to their oral problems.
2. External and contextual factors
Beyond individual behavior, participants highlighted broader influences such as:
Living in rural areas with limited access to dental care
Use of traditional remedies instead of professional treatment
Long-term effects of traumatic experiences, including injuries related to the 1994 genocide
Social and economic hardship
These perceptions reflect how oral health is closely tied to social context, life history, and access to care.
How oral diseases affect daily life
Physical pain, emotional burden, and social isolation
Participants described oral diseases as more than a health issue—they were a source of ongoing suffering.
Physical and functional effects
Many reported pain, difficulty chewing food, and changes in facial appearance. Simple acts like smiling or laughing became uncomfortable, leading to constant self-consciousness.
Psychological effects
Oral diseases affected mental well-being. Participants spoke of anxiety, sadness, shame, and feelings of inferiority. Some worried about losing all their teeth or feared serious conditions like oral cancer.
Social effects
Social life was also impacted. Several participants avoided social gatherings, felt embarrassed in public, or experienced mockery from others. Wearing masks during the COVID-19 pandemic was even described by some as a relief—allowing them to hide damaged teeth.
Notably, HIV-positive participants reported these physical and psychological impacts more frequently than HIV-negative individuals.
Why these findings matter
Implications for oral health and HIV care
The study highlights that oral diseases are deeply intertwined with emotional and social well-being—especially among people living with HIV. Patients’ perceptions reveal barriers that go beyond clinical treatment, including stigma, poverty, and limited awareness.
By understanding how patients explain and experience oral diseases, health systems can design interventions that are more humane, culturally sensitive, and effective.
The takeaway
Oral health deserves a central place in holistic care
This study shows that oral diseases are not just about teeth—they affect how people eat, smile, interact, and see themselves. For people living with HIV, the burden is often heavier.
The authors emphasize the need to integrate oral health services into HIV care, provide targeted oral health education, and strengthen prevention strategies—especially for high-risk groups.
Listening to patients’ voices, as this study does, is a crucial step toward improving both oral health and quality of life.
Original article reference
Murererehe, J., Malele-Kolisa, Y., Musafili, A., & Yengopal, V. (2025).
Perceptions on causes and effects of common oral diseases among HIV-positive and HIV-negative adults in Kigali, Rwanda: a qualitative study.
BMC Oral Health, 25, 989.
DOI: 10.1186/s12903-025-06273-y