For most families, leaving the hospital is a moment of relief. It signals recovery, hope, and a return to normal life. But for children living with HIV who have been hospitalized with severe illness, walking out of the hospital doors is not the end of the journey. In fact, it marks the beginning of one of the most dangerous periods of their recovery with many dying in the community if no additional measures are taken during this period. The weeks following discharge are filled with challenges that often remain invisible to the health system. Caregivers may struggle to administer medicines correctly, attend follow-up appointments, provide adequate nutrition, or cope with the emotional and financial burden of caring for a seriously ill child. Families face stigma, poverty, unstable housing, and sometimes the loss or illness of the very people responsible for the child’s care. This is where the SUPPORT study is making a difference! Rather than ending care at hospital discharge, the SUPPORT team continues walking alongside children and their families through regular follow-up calls, home visits, adherence counselling, community referrals, and psychosocial support. These seemingly simple interventions are often the difference between recovery and readmission or even death.
A 14-month-old girl enrolled in the study illustrates this reality. While newly diagnosed with HIV, tuberculosis and severe acute malnutrition, she faced overwhelming odds before she ever left the hospital. Why? Her mother struggled to cope with her own new HIV diagnosis, developed severe mental health problems, and required admission to the psychiatric unit all while the child was admitted in care. The family had no stable income, relatives were unwilling to help because of HIV-related stigma, and there was no permanent caregiver to ensure the child received her medicines after discharge. The SUPPORT study team worked with the community to find the father who later identified a 17-year-old temporary caregiver, we counselled the new treatment supporter on medication adherence, linked the child to a community nutrition programme, and maintained weekly contact to monitor progress. When new challenges emerged including the father’s own illness and declining support from neighbours the team intensified follow-up rather than waiting for the family to return to hospital. Today, the child has recovered from severe malnutrition, attends her clinic appointments, takes her medications consistently, and benefits from a stable mother. Her father has become actively involved in her care, demonstrating how continued engagement after discharge can strengthen entire families, not just individual patients.
Sometimes the greatest barriers are not medical at all.
Another child’s story highlights how quickly circumstances can change after leaving hospital. She and her mother (the father was unknown) had both been critically ill when admitted. Tragically, only 10 days after discharge, her mother died from tuberculosis-related illness, leaving a 16-month-old child without a parent or a permanent caregiver. Community members who had initially stepped in could no longer continue providing care, while relatives struggled with stigma and family pressures. Even a maternal aunt willing to help faced rejection within her own household because of HIV-related stigma that escalated into divorce by the partner. The SUPPORT study team worked tirelessly with community organizations to secure a safe and permanent care arrangement. The child was eventually placed in a children’s home where dedicated caregivers received adherence counselling and established consistent medication schedules. The impact was remarkable. Her viral load fell dramatically within just two months (from 10,000,000 copies/ml to 2,094 copies/ml), she has missed no clinic appointments, and treatment adherence became consistent for the first time since diagnosis.
For another family, fear and misinformation threatened to undo any progress made during hospitalization. The child’s mother feared disclosing her HIV status to her partner because of possible violence. Medicines were hidden outside the home, making regular treatment difficult. Community members encouraged the family to abandon nutritional therapy and instead seek traditional remedies. As a result, the child’s condition began deteriorating after discharge. Through continued follow-up, counselling and referrals to community-based nutritional services, the SUPPORT team helped reconnect the family with appropriate care. Initially, the child’s health improved substantially, and viral load declined dramatically over the first four months of follow-up. Although later treatment interruptions led to another deterioration in health, the study team continued providing psychosocial support to address ongoing adherence challenges. This story reminds us that recovery is rarely a straight line and that vulnerable families often require sustained support long after they leave hospital.
These stories reflect a common reality across many low-resource settings. Hospital treatment alone cannot address every factor influencing a child’s recovery. Medical care must be complemented by social support, nutritional assistance, mental health services, caregiver education, and community engagement. The SUPPORT study recognizes that successful recovery depends on understanding each family’s unique circumstances. Follow-up care is therefore not simply about checking whether medicines are being taken. It is about identifying barriers before they become emergencies, strengthening caregivers’ confidence, connecting families to available community resources, and ensuring that no child is left to navigate recovery alone. Importantly, these interventions are often low-cost but highly effective. A telephone call can identify a reason behind missed clinic appointment before treatment is interrupted. A home visit can uncover challenges that would never be apparent during a hospital consultation. A referral to a local nutrition programme or community organisation can provide support that extends well beyond medical care.
Therefore, for children living with HIV, discharge from hospital should never mean discharge from care. These experiences from the SUPPORT study demonstrate that when follow-up care is prioritised, children are more likely to remain on treatment, recover from severe illness, attend clinic appointments, and live healthier future lives. For SUPPORT, improved follow-up leads to better outcomes at home.
By Samuel Kyobe, Postdoctoral Researcher Fellow, Makerere University and Aminah Nalunkuuma Social Worker Jinja Hospital (Uganda)
