Factors underlying taking a child to HIV care: implications for reducing loss to follow-up among HIV-infected and -exposed children

Abstract

Objective: With the aim of reducing pediatric loss to follow-up (LTFU) from HIV clinical care programs in sub-Saharan Africa, we sought to understand the personal and socio-cultural factors associated with the behavior of caregivers taking HIV-infected and -exposed children for care in western Kenya.Methods: Between May and August, 2010, in-depth interviews were conducted with 26 purposively sampled caregivers caring for HIVinfected (7), HIV-exposed (17) and HIV-unknown status (2) children, documented as LTFU from an urban and rural HIV care clinic. All were women with a majority (77%) being biological parents. Interviews were audio-recorded, transcribed and content analyzed.Results: Thematic content analysis of the women's perceptions revealed that their decision about routinely taking their children to HIV care involved multiple levels of factors including: (1) intrapersonal: transport costs, food availability, time constraints due to work commitment, disclosure of HIV status for both mother and child, perception that child is healthy and religious beliefs; (2) interpersonal: unsupportive male partner, stigma by the family and family conflicts; (3) community: cultural norms, changing community dynamics and perceived stigma; (4) health care system: clinic location, lack of patient-centered care, delays at the clinic and different appointment schedules (mother and child). Furthermore, the factors across these different levels interacted with each other in a complex way, illustrating the challenges women face in taking their children to HIV care. Conclusion:The complexity and interconnectedness of the factors underlying retention of children in HIV care perceived by these women caregivers suggests that interventions to reduce pediatric LTFU need to be holistic and address multiple socio-ecological levels. Patient-centered care that integrates a family-centered approach to HIV pediatric care is recommended.Keywords: HIV care, loss to follow-up in children, caregivers. RésuméObjectif : Dans l'objectif de réduire les perdus de vue pédiatriques dans les programmes de prise en charge clinique du VIH en Afrique subsaharienne, nous avons cherché à comprendre les facteurs personnels et socioculturels associés au comportement des aidants emmenant les enfants séropositifs et exposés au VIH à leurs sessions de traitement à l'Ouest du Kenya.Méthodes : De mai à août 2010, des entretiens détaillés ont été menés auprès de 26 aidants sélectionnés à cette fin en charge d'enfants séropositifs (7), exposés au VIH (17) et de statut sérologique inconnu (2), documentés comme perdus de vue à partir d'un centre de traitement du VIH urbain et rural. Tous étaient des femmes, et une majorité d'entre elles (77 %) étaient les parents biologiques de ces enfants. Les entretiens ont été enregistrés sur cassette, retranscrits et leur contenu analysés.Résultats : L'analyse thématique du contenu des perceptions des femmes a révélé que leurs décisions quant au fait d'emmener leurs enfants en traitement pour le VIH impliquaient des facteurs ...

Temporal changes in the outcomes of HIV-exposed infants in Kinshasa, Democratic Republic of Congo during a period of rapidly evolving guidelines for care (2007–2013)

“…The UNC-DRC program increased its efforts to track patients who missed appointments over the study period, but it does not appear that these efforts led to a reduction in the proportion of infants who were lost to follow-up. Research suggests that infants are less likely to be retained in care if their caregivers perceive them as healthy and more likely to be retained in care if they are identified as HIV-infected [42,43]. Thus, it is possible that the implementation of EID and the communication of initial negative test results, as well as the implementation of more effective prophylactic regimens, also affected the proportion of infants who were lost to follow-up.…”

Early diagnosis is critical to ensure good outcomes in HIV-infected children: outlining barriers to care

“…Previously documented care obstacles include maternal disbelief of own HIV diagnosis, fear of involuntary HIV disclosure, anxiety regarding possible child HIV infection, unfriendly healthcare workers, poor parental education, poverty, inadequate family support and stigma (Donahue, Dube, Dow, Umar, & Van Rie, 2012;Horwood et al, 2010;Wachira, Middlestadt, Vreeman, & Braitstein, 2012). Integration of child health services, PMTCT and ART programmes is vital, and clear guidance to health workers is necessary in dealing with the confidentiality dilemma of maternal HIV infection in relation to documentation of relevant child information, including HIV exposure (Horwood et al, 2010;WHO, 2010).…”

Maternal-Fetal Attachment and Health Behaviors among Women with HIV/AIDS

“…Furthermore, some of the pediatricians practicing in the community refuse to perform or monitor the HIV screening protocol for their patients, and instead they prefer that these patients attend the screening clinic. An international qualitative study in Kenya analyzed the thematic content related to routinely taking children to HIV care (Wachira et al, 2013). They found that this decision involved multiple levels of intrapersonal, interpersonal, community and health system factors, which intertwined in complex ways to affect the decisions of Kenyan mothers to take their children to HIV care.…”

“…They found that this decision involved multiple levels of intrapersonal, interpersonal, community and health system factors, which intertwined in complex ways to affect the decisions of Kenyan mothers to take their children to HIV care. Even considering the remarkable differences in cultural, socioeconomic and health care for HIV disease environments between the U.S. and Kenya, Wachira's et al (2013) screening protocols for HIV-exposed infants by promoting maternal health behaviors for infant care could benefit from including at least some of these multi-level factors (Wachira et al, 2013).…”

“…intrapersonal, interpersonal, community, and health care system) facilitated the women's ability to overcome recurrent episodes of depression, or bring their infants to the pediatric HIV care clinic (Jerome et al, 2012;Wachira et al, 2013).…”