October 9, 2020

Delivering Psychosocial Support to Children Living with HIV

“Understanding their diagnosis helps to empower people,” says Aimée Ngalula Kabongo.

For people caught at the intersection of extreme poverty, crisis, and living with a chronic infectious disease such as HIV, the consequences of the COVID-19 pandemic are extraordinary. The World Health Organization anticipates that the need for mental health and psychosocial support will increase substantially in the coming months. Limited access to mental health services existed well before COVID-19, and traditionally mental health has been one of the most neglected areas of public health worldwide. However, social distancing and lockdown, in addition to the limited capacity of health systems, have only exacerbated these challenges.

For children living with HIV in the Democratic Republic of the Congo (DRC), mental health resources are scarce, with approximately one mental health clinician for every 1 million people.

Alisha Keirstead, project director of EDC’s USAID/PEPFAR-funded ELIKIA project in the DRC, spoke to three ELIKIA case managers—Aimée Ngalula Kabongo, Liliane Kaluwamba, and Jean-Paul Tokay—on how to provide critical psychosocial support for the survival and long-term health and well-being of children living with HIV in these unprecedented times.

Q. What are the most common emotional challenges you see among the families you support?

Kabongo: Many HIV+ adults hide their HIV status for fear of being rejected by their community. They also fear for their children if the child is HIV+: that their children will commit suicide when they learn of their diagnosis or be hated by their peers if their status is discovered or that their children might die from AIDS. They experience guilt or fear that their child will be angry at them for having passed on the infection.

Q. More than 27,000 of ELIKIA’s 30,000 beneficiaries are orphans and vulnerable children (OVC) under the age of 18. How do you see HIV impacting children and adolescents?

Kaluwamba: Many experience low self-esteem, despair, and loneliness. Orphans in particular are sometimes not valued or lack affection. We see other children failing in school, consuming alcohol, being disobedient, and initiating sex early.

Kabongo: Some HIV+ children refuse to take antiretroviral drugs. Many do not understand why they are the only child in the household taking them, and they want to know when they will be able to stop. Understanding that HIV treatment is for life is difficult for some children to grasp. Emotions range from anguish, aggression, and anger to a lack of self-esteem to a fear of dying or considering suicide.

Q. How do you help families overcome these challenges and difficult feelings?

Kabongo: We begin with counselling that advises on the distinction between HIV and AIDS, explains the routes of transmission, and emphasizes the importance of treatment. We help them understand that AIDS is not inevitable, and that we can live positively with HIV when we respect the treatment protocol. Understanding their diagnosis helps to empower people and gives them hope for the future.

Kaluwamba: We also provide coaching to parents on building better relationships with their children; relating to teenagers, including advice on sexuality and sexual health; and building the family’s capacity to jointly develop and respect family rules.

Q. What types of emotional and social skills have you helped OVC and their caregivers develop using psychosocial support?

Tokay: We have shown children different ways of dealing with their emotions, such as becoming more aware of their feelings before acting, deep breathing exercises to become calm, changing negative thoughts into positive thoughts, using good communication techniques, and expressing emotions productively.

Kaluwamba: The involvement of parents and children in psychosocial support together has resulted in an improved atmosphere in the family, greater understanding, and a climate of peace. Caregivers have developed greater confidence and self-control, more positive discipline and adoption of peaceful modes of conflict resolution, greater attention to children’s views, and greater confidence that things can change if they work to resolve their challenges.

Kabongo: This has also led to improved ability to accept one’s HIV status and adherence to treatment.

Q. Do you think COVID-19 is causing an increased incidence of mental health issues or emotional difficulties among the families you serve?

Tokay: Yes, especially because of the reduced movements of people who already lacked significant savings and who live from day to day. We have observed a great deal of stress in the face of an illness that no one can stop, the uncertainty of seeing the pandemic end, and especially the uncertainty of meeting one’s responsibilities when one cannot work. In the context of their vulnerability, the advent of COVID-19 has led to uncertainty about the present and the future, thus a greater risk of anxiety-related disorders.

Kabongo: We have observed many changes in this regard. Our beneficiaries are under the same pressure everyone is facing. Many fear being infected and are afraid of dying because they are already vulnerable due to HIV. There was a lack of food following the lockdown, which prevented them from going to get their daily bread. Some said that “it is not COVID-19 that will kill us, but hunger.”

Because we were unable to conduct home visits during [the lockdown] period and relied solely on phone contact with beneficiaries, some became sad and withdrawn as they felt abandoned by the case manager. However, during virtual home visits, we provided reassurance by giving people accurate information on COVID-19 while insisting on compliance with measures for prevention. We encouraged families to build up reserves of food and other essential goods, and to establish a reserve of drinking water and a six-month supply of HIV treatment medications. We also advised parents to seize this opportunity to develop positive interactions with their children: to spend privileged moments on take-home lessons from school, listening to educational radio broadcasts together, and telling stories and playing games.

Q. What skills have you had to develop as a psychosocial support provider to help vulnerable households during the COVID-19 pandemic?

Kaluwamba: Each household has its own reality, and we have learned to support each household according to their own experiences. Psychosocial support requires one to listen attentively and actively, cultivate patience, be available and accessible, and develop good observation skills.

Kabongo: I have learned to cultivate listening skills, to gain trust, and to be empathetic. It requires dedication, but case managers should love their work in supporting our beneficiaries. During the COVID period, to offer psychosocial support over the phone, having forged bonds of trust is a prerequisite. We have also had to adapt to ensure the case manager and the caregiver have time and are available, to ensure confidentiality, and to trust that the information they are providing us is accurate without being able to verify it ourselves in the home.