The COVID-19 pandemic brought uncertainty and disruption to communities across the world. For young people living with HIV, however, the pandemic presented an additional layer of challenges as they continued to manage their health while navigating concerns about a new and unfamiliar disease.

A recent study conducted in Kampala, Uganda, gives important insight into how young people living with HIV experienced this difficult period and, more importantly, how many found strength and resilience in the face of uncertainty.

Listening to Young People’s Experiences

The study involved 154 young people living with HIV between the ages of 15 and 20 years and included participants receiving care in Kampala, with Nsambya Home Care identified as the recruitment setting for the larger parent project.. Participants shared their experiences, concerns, emotional responses, and coping strategies during the COVID-19 pandemic.

The findings revealed that the pandemic affected young people in different ways. Older participants experienced greater anxiety about COVID-19 and expressed more concern for the wellbeing of their loved ones.

The study also found that medication adherence remained a challenge for some participants, with approximately half reporting that they had missed medication doses within the previous 30 days.

These findings remind us that during periods of crisis, maintaining continuity of care and supporting young people’s emotional wellbeing are both essential.

Finding Strength Through Experience

Despite the challenges brought by the pandemic, the study revealed an encouraging story of resilience.

Many of the young people were able to draw upon their previous experiences of living with and managing HIV to cope with the uncertainty and stress caused by COVID-19.

Their journeys with HIV had already taught them important lessons about adapting to change, managing health challenges, and finding ways to move forward during difficult circumstances.

For many, these experiences became a source of strength during the pandemic.

Participants also expressed a deeper appreciation for life and increased gratitude for their families and loved ones.

Why This Matters

Young people living with HIV have needs that extend beyond clinical care. Their wellbeing is influenced by emotional health, family relationships, social support, and their ability to manage change and uncertainty.

The findings highlight the importance of listening to young people and understanding their experiences, particularly during periods of disruption.

They also reinforce the need for healthcare services that address the whole person. Alongside access to medication and clinical care, young people need support that recognises their emotional, social, and psychological wellbeing.

Importantly, the study found differences between younger and older participants, showing that support should be responsive to the developmental needs of different age groups.

The Role of Healthcare Providers

Nurses, midwives, and other healthcare professionals play an important role in supporting young people living with HIV.

Regular interaction with young people provides opportunities to identify both challenges and strengths. Appropriate screening and supportive conversations can help healthcare providers recognise concerns related to mental health, medication adherence, social support, and coping.

By identifying these needs early, healthcare teams can provide timely and appropriate support.

Building Resilience for the Future

The lessons from the COVID-19 pandemic remain important as healthcare systems prepare for future emergencies and unexpected disruptions.

Young people living with HIV need consistent access to care, but they also need opportunities to build on their existing strengths and coping abilities.

Families, healthcare providers, communities, and organisations all have a role to play in creating supportive environments where young people can continue to manage their health and pursue their goals.

The experiences shared through this research remind us that young people are not simply recipients of care. They bring their own strengths, experiences, and resilience to the challenges they face.

Looking Ahead

Research such as this helps us better understand how young people living with HIV experience periods of uncertainty and change.

The findings point to the importance of providing care that is age-appropriate, responsive, and attentive to both challenges and strengths.

As we continue to learn from the COVID-19 pandemic, listening to young people and involving them in shaping healthcare services will remain essential.

By supporting their health, wellbeing, and resilience, we can help ensure that young people living with HIV are better prepared to navigate both everyday challenges and unexpected changes in the future.

About the Research

Title: Ugandan young people living with HIV during the COVID-19 pandemic: A descriptive study

Authors: Lily R. Kelyn Bastian, Barbara J. McMorris, Tom Ngabirano, Peter Kirabira, Scovia Nalugo Mbalinda, Sara Hildreth, and Melissa Saftner

Journal: Journal of Pediatric Nursing

Volume: 84

Pages: 114–123

Publication: September–October 2025

DOI: 10.1016/j.pedn.2025.05.017