Importance of support groups to the health and well-being of vulnerable children and young people living with HIV: a case study of the Kids Clubs program in Haiti

Abstract

Background Although access to antiretroviral therapy (ART) among children and young people living with HIV has increased in recent years, adherence to medication and viral suppression remain challenges. Evidence of benefits of support groups is growing and reflects a range of models and approaches. Since 2014, hospital-linked psychosocial support groups for children and young people living with HIV, known as Kids Clubs, have been established throughout Haiti. The program provides safe spaces for them to meet with peers, supports medication adherence, delivers health and life skills education, and facilitates linkages with clinic visits and social services. This study describes program enrollment and participant engagement, ART adherence and viral suppression among participants, and other outcomes attributed to the program by participants, caregivers, and program implementers. Methods Our mixed methods study included quantitative analysis of program monitoring data on rollout and attendance, and medication adherence and viral load results extracted from medical records. We collected qualitative data from club members, caregivers, and implementers about their experiences with the clubs and the impact of participation. Results From January 2014–December 2018, 1330 individuals aged 8–29 were enrolled in the program; over three-quarters participated for at least 12 months. In 2018, 1038 members attended at least one club meeting; more than half missed three or fewer monthly meetings. Three-quarters of ever-enrolled members reported consistent medication use at their most recent clinic visit; 64.2% (600/935) of those with a recent viral load test were virally suppressed. Level of club attendance was positively associated with ART adherence (p < 0.01) and viral suppression (p < 0.05). Club members, caregivers, and implementers noted the value of the clubs to participants’ retention in care and medication adherence, health knowledge, and capacity to deal with peer pressure, stigma, shyness, and depression. Conclusions The Kids Club program has been successful in scaling HIV support services to highly vulnerable children and young people through peer-based groups, and program participation has led to a range of benefits. Efforts to innovate, evaluate, and scale support strategies for vulnerable young populations must be accelerated in order to ensure that they survive, thrive, and reach their full potential.

Support provided by outreach team leaders to caregivers of HIV/AIDS orphans in the North-West Province of South Africa

“…Consistent with existing literature, a study conducted in Mpumalanga on community-based adherence clubs indicated they played a crucial role in reducing overcrowding in healthcare facilities, defaulter rates, improving treatment adherence, and reducing stigma and discrimination [74]. These results are similar to those reported in the study conducted in Haiti whereby the Kids Club program assisted caregivers and children living with HIV with psychosocial development and well-being through group interaction [75].…”

“…It has been reported that the Kids Club program was crucial in giving orphaned children the educational opportunities they needed to overcome their shyness, boost their self-esteem, give them encouragement and hope, and bring pleasure into their lives. Individuals who disclosed to the club that they were HIVpositive discussed how being a part of it had improved their knowledge of the virus, their ability to maintain their health, and their outlook on life [75]. Moreover, caregivers also reported how treatment treatment-taking behavior of orphaned children who attended the Kids Club improved.…”

Individual-, Interpersonal- and Institutional-Level Factors Associated with HIV Stigma Among Youth in Kenya

“…The support groups likely prepare the adolescents and youth to counter some stigmatizing situations and bolster their confidence and sense of self-worth leveraging peer support. Expanding the reach of youth responsive clinics and peer support groups, which are highly advocated for to enhance HIV treatment outcomes [ 77 – 79 ], could be effective ways to mitigate internalized stigma for youth.…”

The importance of health clubs in asthma management

“…This effect has been demonstrated in a study by Settergren et al, on the importance of support groups amongst children living with HIV in Haiti. 24 This feeling of well-being is a shared benefit between the asthma patient and the parent/caregiver. A report from one of our parent key informants that she now encourages her son to take his medication suggests that better understanding may influence parents' enthusiasm to support or seek adequate care.…”