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Disclosure, Consent, Opportunity Costs, and Inaccurate Risk Assessment Deter Pediatric HIV Testing

A Mixed-Methods Study

Wagner, Anjuli D. MPH, PhD*; O'Malley, Gabrielle MA, PhD*; Firdawsi, Olivia MPH*; Mugo, Cyrus MBChB; Njuguna, Irene N. MBChB, MSc, MPH‡,§; Maleche-Obimbo, Elizabeth MBChB, MMed, MPH, FPulm; Inwani, Irene W. MBChB, MMed, MPH§; Wamalwa, Dalton C. MBChB, MMed, MPH; John-Stewart, Grace C. MD, MPH, PhD*,‡,‖; Slyker, Jennifer A. MSc, PhD*,‡

JAIDS Journal of Acquired Immune Deficiency Syndromes: April 1, 2018 - Volume 77 - Issue 4 - p 393–399
doi: 10.1097/QAI.0000000000001614
Implementation Science
Free
SDC

Background: Prompt child HIV testing and treatment is critical; however, children are often not diagnosed until symptomatic. Understanding factors that influence pediatric HIV testing can inform strategies to increase testing.

Methods: A mixed-methods study was conducted at a tertiary hospital in Nairobi, Kenya. Three focus group discussions with health care workers (HCWs) and 18 in-depth interviews with HIV-infected adults with children of unknown status were analyzed using thematic analysis. A structured questionnaire was administered to 116 HIV-infected caregivers of children of unknown status to triangulate qualitative findings.

Results: Analysis revealed 3 key periods of the pediatric HIV testing process: decision to test, test visit, and posttest. Key issues included: decision to test: inaccurate HIV risk perception for children, challenges with paternal consent, lack of caregiver HIV status disclosure to partners or older children; test experience: poor understanding of child consent/assent and disclosure guidelines, perceived costs of testing and care, school schedules, HCW discomfort with pediatric HIV testing; and posttest: pessimism regarding HIV-infected children's prognosis, caregiver concerns about their own emotional health if their child is positive, and challenges communicating about HIV with children. Concerns about all 3 periods influenced child testing decisions. In addition, 3 challenges were unique to pediatric HIV: inaccurate HIV risk perception for children; disclosure, consent, and permission; and costs and scheduling.

Conclusions: Pediatric HIV testing barriers are distinct from adult barriers. Uptake of pediatric HIV testing may be enhanced by interventions to address misconceptions, disclosure services, psychosocial support addressing concerns unique to pediatric testing, child-focused HCW training, and alternative clinic hours.

*Department of Global Health, University of Washington, Seattle, WA;

Department of Pediatrics and Child Health, University of Nairobi, Nairobi, Kenya;

Department of Epidemiology, University of Washington, Seattle, WA;

§Research and Programs, Kenyatta National Hospital, Nairobi, Kenya; and

Departments of Medicine and Pediatrics, University of Washington, Seattle, WA.

Correspondence to: Anjuli D. Wagner, MPH, PhD, Department of Global Health, University of Washington, Box 359931, Seattle, WA 98104 (e-mail: anjuliw@uw.edu).

The Counseling and Testing for Children at Home (CATCH) Study was funded by A83526 (University of Washington Royalty Research Fund, PI J.A.S.) and by R21 HD079637 (NIH, G.C.J.-S.). A.D.W. was supported by F31 MH099988 and R21 HD079637 (NIH); O.F. and C.M. were supported by UW A83526 (UW RRF); I.N.N. and D.C.W. were supported by R01 HD023412 (NIH); G.C.J.-S. was supported by R01 HD023412, R21 HD079637, and K24 HD054314 (NIH); and J.A.S. was supported by K01 AI087369 and R21 HD079637. This publication was also supported in part by the University of Washington CFAR (P30 AI027757), REDCap UL1TR000423 from NCRR/NIH, and the UW Global Center for Integrated Health of Women, Adolescents and Children (Global WACh).

Data presented previously at 2016 International AIDS Society (IAS); July 19, 2016; Durban, South Africa.

The authors have no funding or conflicts of interest to disclose.

A.D.W., G.O., G.C.J.-S., and J.A.S. conceptualized the article; A.D.W., G.O., G.C.J.-S., and J.A.S. prepared the final draft; A.D.W., G.O., O.F., C.M., I.N.N., E.M.-O., I.W.I., D.C.W., G.C.J.-S., and J.A.S. made contributions and revisions. All authors approved the final draft.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www.jaids.com).

Received May 26, 2017

Accepted December 01, 2017

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INTRODUCTION

Untreated pediatric HIV has an aggressive course with high mortality.1–6 Although systems to diagnose infant HIV are improving, many older children remain undiagnosed.7 Systems to routinely test older children, such as provider-initiated testing and counseling, often preferentially test symptomatic children, attenuating treatment benefits.8 To achieve the UNAIDS 90-90-90 targets,9 progress is needed in expanding HIV testing for older children.

One strategy to close pediatric HIV testing gaps is testing children of HIV-infected adults in care; this index case testing (ICT) approach yields a higher likelihood of diagnosing pediatric HIV infection than in the general population10,11 and may identify asymptomatic children.10,12–15 In addition, ICT engages adults familiar with the benefits of HIV care who may be amenable to testing their children.

We previously found that systematic ICT increased pediatric HIV testing 4-fold; however, most (86%) adults did not complete child testing.12 We conducted a nested study to determine key barriers to pediatric ICT.

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METHODS

Study Design

This was a cross-sectional mixed-methods study. The parent study CATCH (Counseling and Testing for Children at Home) included systematized offer of pediatric HIV testing at home or in clinic. Questionnaires and semistructured in-depth interviews (IDIs) were administered to caregivers with children of unknown HIV status before testing, and focus group discussions (FGDs) with pediatric health care workers (HCWs); data collection was concurrent with the parent study.

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Ethics Statement

University of Washington Institutional Review Board and Kenyatta National Hospital (KNH)/University of Nairobi Ethics and Research Committee approved the study. Written informed consent was obtained in IDIs and surveys; oral informed consent was provided for FGDs.

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Recruitment and Enrollment

HIV-infected caregivers were eligible if they had at least 1 child 12 years and younger (“older children”) of unknown HIV status and were attending Voluntary Counseling and Testing Clinic (VCT), PMTCT Clinic, or Comprehensive HIV Care Centre (CCC) sites at KNH from 2013 to 2014.12 Sequential caregivers were screened by clinic staff and referred. Eligible caregivers were invited to complete questionnaires and/or IDIs. All but 1 caregiver who completed the questionnaire stated intent to test their children at enrollment, although a third did not complete testing in the parent study12; it was not possible to determine which caregivers who completed IDIs eventually tested children.

A variety of HCW cadres were purposively recruited for FGDs from the aforementioned clinics at KNH.

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Qualitative Data Collection and Analysis

Interview guides explored social, emotional, cultural, structural, and organizational barriers to child HIV testing, with questions drawn from our conceptual framework, an adapted Andersen's Behavioral Model for Health Services Utilization16 (Supplemental Digital Content Figure 1, http://links.lww.com/QAI/B101). Interviews were conducted in English or Kiswahili by a professional interviewer. Audio recordings were translated, transcribed, and imported into Atlas.ti version 7 (ATLAS.ti Scientific Software Development, GmbH, Berlin, Germany). Data analysis began with 2 primary coders (A.D.W. and O.F.) independently coding 3 transcripts using “start codes” informed by our conceptual model.17 This process yielded additional codes which were incorporated into a more comprehensive codebook. Primary coders used this revised codebook to independently code a second set of 3 transcripts. Application of the codebook was reviewed jointly and differences resolved through discussion. Finally, each acted as primary and secondary coder for the remaining 12 transcripts. All coding was reviewed by G.O. for consistency and meaning. Content analysis proceeded using the constant comparison approach18; resulting major themes were discussed by the larger team until consensus on interpretation was reached.

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Quantitative Questionnaire Data Collection

A questionnaire collected sociodemographic characteristics, HIV testing history, and barriers and facilitators. Questions were developed a priori from Andersen's framework; prompted questions asked participants whether they experienced each barrier, whereas open-ended questions allowed participants to list barriers spontaneously. Quantitative survey data were used to triangulate the qualitative data; analyses were conducted separately and compared.

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RESULTS

Participant Characteristics

Eighteen IDIs with caregivers and 3 FGDs (7–11 HCWs each) were completed; 116 caregivers completed the survey. Caregivers completing IDIs and surveys were demographically similar (Supplemental Digital Content Table 1, http://links.lww.com/QAI/B101). Although efforts were made to enroll caregivers reluctant to test children, none agreed to complete IDIs.

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QUALITATIVE RESULTS

Themes from the qualitative data supported the modified Andersen's model to describe pediatric HIV testing (Supplemental Digital Content Figure 1, http://links.lww.com/QAI/B101). Themes highlighted time period–specific concerns and revealed issues unique to pediatric HIV testing.

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Decision Making, Testing, and Posttest Coping

Caregiver and HCW concerns addressed stages of the HIV testing experience: decision to test, testing visit, and posttest period. Concerns about all 3 periods influenced decisions about whether to test a child (Table 1). Notably, posttest period concerns influenced decision to test. Concerns differed between HCW and caregivers (Fig. 1).

TABLE 1

TABLE 1

FIGURE 1

FIGURE 1

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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.

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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…

- Caregiver

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.

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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?

- Caregiver

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

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?

- HCW

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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?”

- Caregiver

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.

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Quantitative Results

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).

TABLE 2

TABLE 2

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DISCUSSION

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.

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CONCLUSIONS

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.

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ACKNOWLEDGMENTS

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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Keywords:

pediatric HIV testing; barriers and facilitators; disclosure; risk assessment; challenges

Supplemental Digital Content

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