Caregiver support groups improve pediatric treatment adherence and psychosocial well-being in Mangochi, Malawi
Agness Govati demonstrates how she puts LPV/r pellets in Maheu to give to her baby
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In 2015, Malawi’s Ministry of Health approved the introduction of ritonavir-boosted lopinavir (LPV/r) as part of first-line pediatric antiretroviral therapy (ART). Two years later, a new formulation to replace the pediatric syrup became available for young children unable to swallow the tablets: LPV/r pellets. The pellets, which do not require refrigeration are easier to swallow and can be administered with food, are given to children who are at least three months old and weigh over five kilograms.
The USAID-funded Tingathe program, implemented by Baylor College of Medicine Children’s Foundation Malawi, has been supporting the Ministry of Health to introduce and roll out the use of the LPV/r pellets at select facilities throughout the country. After observing poor adherence to treatment among some clients, the Tingathe program sought to better understand the challenges that these families were experiencing, acknowledging that the new regimen can be a challenge to administer. Some caregivers reported psychological pressure related to stigma and discrimination from their families and communities, which contributed to inconsistent or inadequate administration of the pellets. Other caregivers did not know how to correctly administer the medication to their children: they would crush the pellets, dissolve the powder in liquid, and give the mixture to the children. This resulted in an insufficient intake of the medicine, as children would spit or throw up the bitter solution. To address these issues, Tingathe initiated a program to support caregivers at Mangochi District Hospital. The program seeks to improve adherence through improved administration of treatment and psychosocial support. Tingathe staff utilize the weekly Mother-Infant Pair (MIP) clinics to hold small-group meetings with the caregivers each month, where they share and discuss challenges, experiences, concerns, and questions related to the treatment. |
Tingathe’s nurse mentor and psychosocial counsellor provide training and counselling sessions to promote adherence, such as information on the appropriate time, quantity, and procedure of administering the pellets. The psychosocial counsellor, who is stationed at Mangochi District Hospital, is also available to address psychological and mental health issues with the caregivers during individual sessions, as needed.
This program is contributing to positive changes among the caregivers and their children. Agness Govati, a 35-year-old mother, now understands how to give the pellets to her nine-month-old daughter, Trinity. “I used to crush the pellets and dissolve them in water,” she said. “My daughter always spit them out because of the bitter taste, and this worried me. She looked so weak. When I joined this program, I was taught to put the pellets in porridge, milk, or Maheu.[1] When I started doing this, the health of my daughter began to improve. I am now a happy mother because I no longer struggle in giving the pellets to my baby.”
The caregivers have gained knowledge and skills from each other. Twenty-nine-year-old Patuma Umali shared, “I joined the mother-pellets support program at Mangochi District Hospital four months ago. By then, my son used to have pale skin, even though I had already started giving him the LPV/r pellets. He would look so dizzy and weak almost every night. I shared my challenge with the group and they demonstrated how to administer the pellets. They also taught me ways of preparing nutritious food for my baby. I have gained a lot of skills through this program. I now feel empowered to the extent that I can assist other women who are going through the same challenges.”
Tingathe staff assist in fast-tracking caregivers who are part of the program at the MIP clinic, preparing their client files beforehand and bringing them out of the MIP clinic line to conduct a nutrition assessment on the child and linking them to the services they need. Giving these caregivers first priority helps ensure they access the services they need but are not at the health facility all day. Patuma notes, “I now come back home around twelve noon and am able to prepare food for my family in good time, as well as have time to take care of my home and my elderly mother.”
The program has helped improve the mental health of the caregivers through the provision of psychosocial counselling. During one of the psychosocial counselling sessions, one of the mothers shared that she was being stigmatized by her neighbors, which made her feel depressed. She started missing appointments and stopped giving her child ART consistently. After receiving psychosocial counselling from Tingathe, she gained the skills to adapt to her challenging situation and prioritize the health of her child.
Tingathe’s support program is demonstrating its value in terms of improving caregiver knowledge and skills and improving the psychosocial wellbeing of participants through both peer support and professional counselling. Tingathe will continue to monitor the program and assess its effect on adherence, viral load, and other health outcomes in order to strengthen implementation and support efforts to identify and tailor interventions to enhance pediatric ART adherence.
[1] Maheu is a popular maize-based traditional African drink
This program is contributing to positive changes among the caregivers and their children. Agness Govati, a 35-year-old mother, now understands how to give the pellets to her nine-month-old daughter, Trinity. “I used to crush the pellets and dissolve them in water,” she said. “My daughter always spit them out because of the bitter taste, and this worried me. She looked so weak. When I joined this program, I was taught to put the pellets in porridge, milk, or Maheu.[1] When I started doing this, the health of my daughter began to improve. I am now a happy mother because I no longer struggle in giving the pellets to my baby.”
The caregivers have gained knowledge and skills from each other. Twenty-nine-year-old Patuma Umali shared, “I joined the mother-pellets support program at Mangochi District Hospital four months ago. By then, my son used to have pale skin, even though I had already started giving him the LPV/r pellets. He would look so dizzy and weak almost every night. I shared my challenge with the group and they demonstrated how to administer the pellets. They also taught me ways of preparing nutritious food for my baby. I have gained a lot of skills through this program. I now feel empowered to the extent that I can assist other women who are going through the same challenges.”
Tingathe staff assist in fast-tracking caregivers who are part of the program at the MIP clinic, preparing their client files beforehand and bringing them out of the MIP clinic line to conduct a nutrition assessment on the child and linking them to the services they need. Giving these caregivers first priority helps ensure they access the services they need but are not at the health facility all day. Patuma notes, “I now come back home around twelve noon and am able to prepare food for my family in good time, as well as have time to take care of my home and my elderly mother.”
The program has helped improve the mental health of the caregivers through the provision of psychosocial counselling. During one of the psychosocial counselling sessions, one of the mothers shared that she was being stigmatized by her neighbors, which made her feel depressed. She started missing appointments and stopped giving her child ART consistently. After receiving psychosocial counselling from Tingathe, she gained the skills to adapt to her challenging situation and prioritize the health of her child.
Tingathe’s support program is demonstrating its value in terms of improving caregiver knowledge and skills and improving the psychosocial wellbeing of participants through both peer support and professional counselling. Tingathe will continue to monitor the program and assess its effect on adherence, viral load, and other health outcomes in order to strengthen implementation and support efforts to identify and tailor interventions to enhance pediatric ART adherence.
[1] Maheu is a popular maize-based traditional African drink
