Challenges Unique to Pediatric HIV Testing
Unique challenges to testing asymptomatic children for HIV emerged: (1) inaccurate risk perception, (2) issues with disclosure and consent, (3) costs and scheduling.
Inaccurate Risk Perception: Caregiver and HCW Lack of Urgency Around Testing Older Children
Caregivers often did not feel urgency to test asymptomatic older children. Children's symptoms were a common prompt for testing, for caregivers and HCWs. One caregiver described difficulty in overcoming inertia in the absence of illness:
… there is no way you can stay (at) home and the child is not sick and you say, let me take my baby to be tested for HIV…
However, other caregivers assumed that older HIV-exposed children were inevitably infected, expressing fear and reluctance to test. Caregivers noted that focusing on the potential of an infected child during the testing discussion could deter caregivers from testing.
Complex Decision-Making Dynamics Underlie Reluctance to Test
Unlike adult HIV testing—which is autonomous and private—pediatric HIV testing, disclosure, permission, and consent may involve multiple caregivers and must address the increasing autonomy and curiosity of the older child.
Caregivers discussed partnership dynamics extensively in the context of the decision to test and in the posttest period. Some felt partners needed to be involved in deciding, whereas others felt it best to decide independently. Decision making was influenced by fear of disclosure. Caregivers described their own and their partners' denial of their HIV status, and perceived or confirmed discordant relationships, as barriers to pediatric testing. Female caregivers sometimes explained that disclosing to one's partner was necessary to rationalize testing the child; women who were not ready to disclose their status to their partners felt unable to bring children for testing for fear of conflict, violence, or withholding of financial support.
… it will be difficult because how are you going to tell him… If we have not talked about our status how are we going to talk about the status of the child?
HCW felt challenged managing decision making related to obtaining appropriate consent from caregivers. HCW found themselves caught between children's needs and caregivers' resistance.
According to practice, sometimes you face challenges when the parents don't want to give consent and you can see that the child needs the test and get treatment… that is where now the policy is not coming in…
HCW felt that as children became older, they ask questions regarding testing. Most caregivers felt their children were too young to know the reason for testing and feared children would disclose their test results to others. They also felt that if a child knew he/she was HIV infected, it would force the caregiver to disclose their own HIV status to the child. HCWs often did not feel equipped to handle family disclosure and thought twice about even performing the test.
…in your mind you are like if the tests turns out [HIV] positive, how do I start disclosing to this child? So it's kind of a dilemma… and kind of fear, do I want to do it or not?
Perceived and Real Costs, and School Schedules Prevent Caregivers From Testing Children
Caregivers repeatedly cited concerns about costs relevant to the test experience and the posttest periods. Costs included transportation, childcare, perceived costs of tests and treatment, and lost income from missed work. Many caregivers echoed 1 participant's claim of “when I get money, I will go,” suggesting that caregivers delay testing because of lack of capital and competing financial priorities.
Just that, “I don't have money to go there”…and “I don't have time.” Like maybe she is hustling for the meal for that day, so she is like…“if I go there, I will waste time, what are my children going eat in the evening?”
HCWs described challenges with scheduling testing because of school and work, noting that services were not available after hours and when children were out of school (often boarding schools). Caregivers struggled with limited opportunities for testing. Although home-based testing with late and weekend visits could overcome some scheduling barriers, HCWs noted that finding homes could be challenging and unsafe, and that residences often changed without notice.
Among 116 caregivers completing questionnaires, the frequency of barriers identified in both prompted and unprompted questions supported the qualitative findings (Table 2). Although most themes in quantitative data were present in qualitative data, some themes were mentioned in only 1 data source (Supplemental Digital Content Figure 1, http://links.lww.com/QAI/B101).
This mixed-methods study with HCWs and caregivers revealed a range of factors that affect uptake of pediatric HIV testing and revealed new opportunities for programmatic interventions. The primary challenges unique to pediatric testing included: inaccurate perception of child's HIV risk; challenges with disclosure, permission, and consent; and logistics of testing.
Consistent with previous studies, reasons for not testing children included the perception that older, healthy-seeming children were not at risk of HIV,11,19 and not feeling ready to disclose one's own status to children or partners.11,20,21 Barriers to testing included HCW perceptions of lack of clear guidelines and unfamiliarity with pediatric HIV testing and disclosure policies20,22–24 and HCWs' negative attitudes.11,24 At clinics, long wait times and costs were logistical barriers.21,24 A major concern was fear of positive results and the child's death.20 Caregivers were hesitant to test because they wanted to protect themselves from blame, guilt, abandonment, and inadvertent disclosure11,20,24,25 and to protect children from stigma, discrimination, and emotional suffering.11,19,20,25
Caregivers highlighted challenges with clinic scheduling, citing boarding school, and limited clinic hours, as barriers. This barrier could be addressed by expanded clinic hours or visits during school holidays.
Interventions to address gaps in pediatric HIV knowledge—true probability of infection and life-saving benefits of antiretroviral therapy—and to address fatalistic attitudes are needed to assuage caregivers' fears, but few exist.26 Notably, although HIV prevalence was relatively high in children tested in the parent study (7.4%12), caregivers can accurately be told that the chance that their child is negative greatly outweighs the chance that their child is infected. Caregivers and HCWs called for more hopeful language in counseling sessions about the probability of a negative child and the potential for children with HIV to live long healthy lives.27
Interventions to facilitate family disclosure should address caregiver and HCW concerns. Family testing models may be effective but are resource intensive14; lower-cost adaptations may be feasible. Task shifting pediatric testing discussions to peer mentors—other adults who have tested their children—may be effective.28 Disclosure remains delayed in many settings29–32 and family disclosure interventions may complement pediatric testing scale-up.27,33–37
Financial incentives may address economic barriers and facilitate testing. Financial incentives have increased uptake of adult38–40 and adolescent testing,41 and are underway for children.42 Testing on weekends and school holidays may overcome scheduling challenges unique to school children.
Our study had strengths; it systematically evaluated barriers and hypothesized a priori within a conceptual framework, triangulated qualitative and quantitative data, and involved HCWs and caregivers. Our study was limited in that caregivers reluctant to test children were underrepresented. However, a third of caregivers who stated intention to test did not ultimately complete testing.
The study revealed unique barriers to pediatric HIV testing including issues with disclosure, consent, and permission; and concerns about costs and scheduling. HCW training and caregiver and community education may improve pediatric HIV testing.
The authors thank the CATCH study participants and their families, without whom this research would not be possible. The authors thank the CATCH administrative, clinical, and data team for their dedication and support. The authors thank the Kenyatta National Hospital staff at the PMTCT, VCT, and CCC clinics for their tremendous effort in recruiting study participants. The authors thank the Kenyan National AIDS and STI Control Programme (NASCOP) for valuable input during study design, conduct, and dissemination. The authors thank Mrs. Anne Gikuni and Mr. Mark Anam for their work conducting, translating, and transcribing the interviews. The authors thank members of the Kizazi Working Group UW Global Center for Integrated Health of Women, Adolescents and Children (Global WACh) and Kenya Research & Training Center (KRTC) for their support during the preparation of this article.
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pediatric HIV testing; barriers and facilitators; disclosure; risk assessment; challenges
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