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'There are no more secrets': acceptability of a family-centered model of care for HIV positive children in Eswatini.

ABSTRACT: BACKGROUND:HIV-positive children have lagged adults on retention in HIV care and viral suppression. To address this gap, Eswatini's Ministry of Health started a pilot family-centered HIV care model (FCCM) targeting HIV-positive children under 20?years old and their families. METHODS:We conducted semi-structured in-depth interviews with 25 caregivers and 17 healthcare workers (HCWs) to assess acceptability of FCCM in four pilot FCCM health facilities in Hhohho region of Eswatini. Thematic analysis with inductive and deductive codes was used to identify salient themes. RESULTS:Caregivers and HCWs reported FCCM benefits including strengthening the family bond, encouragement for family members to disclose their HIV status and supporting each other in taking antiretroviral drugs. Caregivers reported that they spent fewer days in clinic, experienced shorter waiting times, and received better counseling services in FCCM compared to the standard-of-care services. FCCM implementation challenges included difficulty for families to attend clinic visits together (e.g., due to scheduling conflicts with weekend Teen Support Club meetings and weekday FCCM appointments). Both HCWs and caregivers mentioned difficulty in sharing sensitive health information in the presence of other family members. HCWs also had challenges with supporting caregivers to disclose HIV status to children and managing the larger group during clinic visits. CONCLUSIONS:FCCM for HIV-positive children was acceptable to both caregivers and HCWs, and they supported scaling-up FCCM implementation nationally. However, special considerations should be made to address the challenges experienced by participants in attending clinic visits together as a family in order to achieve the full benefits of FCCM for HIV positive children.

SUBMITTER: Khumalo PN

PROVIDER: S-EPMC7559472 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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'There are no more secrets': acceptability of a family-centered model of care for HIV positive children in Eswatini.

Khumalo Philisiwe N PN Katirayi Leila L Ashburn Kim K Chouraya Caspian C Mpango Lydia L Mthethwa Nobuhle N Mofenson Lynne M LM

BMC health services research 20201015 1

<h4>Background</h4>HIV-positive children have lagged adults on retention in HIV care and viral suppression. To address this gap, Eswatini's Ministry of Health started a pilot family-centered HIV care model (FCCM) targeting HIV-positive children under 20 years old and their families.<h4>Methods</h4>We conducted semi-structured in-depth interviews with 25 caregivers and 17 healthcare workers (HCWs) to assess acceptability of FCCM in four pilot FCCM health facilities in Hhohho region of Eswatini. T ...[more]

PMID: 33059670

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Project description:IntroductionA family-centered care model (FCCM) providing family-based HIV services, rather than separate adult/pediatric services, has been proposed to increase pediatric retention and treatment adherence.Materials and methodsEight health-care facilities in the Hhohho region of Eswatini were randomized to implement FCCM (n = 4) or continue standard-of-care (SOC) separate adult/pediatric clinics (n = 4). HIV-positive children and caregivers were enrolled; caregiver interview and child/caregiver chart abstraction were done at enrollment and every three months; pediatric viral load was evaluated at enrollment and every six months through 12 months. Because of study group differences in 12-month viral load data availability (89.4% FCCM and 72.0% SOC children had 12-month viral load), we used three separate analyses to evaluate the effects of FCCM on children's viral suppression (<1,000 copies/mL) and undetectable virus (<400 copies/mL) at 12 months. In the first analysis, all children with missing viral outcome data were excluded from the analysis (modified intent to treat, mITT). The second analysis used inverse probability of missingness weighted logistic regression to estimate the effect of FCCM on 12-month viral outcomes compared to SOC (weighted mITT). For the third approach, missing virologic outcome data were imputed as virologic failure (imputed ITT). We also examined factors associated with viral suppression at 12 months using multivariable logistic regression.ResultsWe enrolled 379 HIV-positive children and 363 caregivers. Among all children at enrollment, viral suppression and undetectability was 78.4% and 73.9%, respectively, improving to 90.2% and 87.3% at 12 months. In mITT and weighted mITT analyses, there was no significant difference in children's 12-month viral suppression between FCCM and SOC groups (89.2% and 91.6%, respectively). Using imputed ITT, there was a modest increase in 12-month viral suppression in FCCM versus SOC children (79.7% and 69.8%, respectively, p = 0.051) and 12-month undetectability (78.7% and 65.7%, respectively, p = 0.015). Among the 255 children suppressed at enrollment, more FCCM versus SOC children (98.0% versus 95.3%) were suppressed at 12-months, but this was not statistically significant in mITT or weighted mITT analyses, with a marginally significant difference using imputed mITT analysis (p = 0.042). A higher proportion of children suppressed at enrollment had undetectable viral load at 12 months in FCCM versus SOC children (98.0% versus 92.5%), a statistically significant difference across analytical methods. Among the 61 children unsuppressed at enrollment, achieving suppression was higher among SOC versus FCCM children, but this difference was not statistically significant and included only 38 children; and there were no significant differences in detectable viral load at 12 months. There were no significant differences between study groups in retention or ART adherence at 12 months for children or caregivers. Factors associated with lack of viral suppression/detectability at 12 months included lack of viral suppression at enrollment and having a younger caregiver (age <25 years).ConclusionsFCCM in Eswatini was associated with a modest increase in viral suppression/undetectability at 12-months; 12-month retention and adherence did not differ by study group for children or caregivers. High levels of suppression and retention in both groups may have limited our ability to detect a difference.Trial registrationNCT03397420; ClinicalTrials.gov.

Project description:ObjectiveIsoniazid preventive therapy initiation and completion rates are suboptimal among children. Shorter tuberculosis (TB) preventive treatment (TPT) regimens have demonstrated safety and efficacy in children and may improve adherence but are not widely used in high TB burden countries. Understanding preferences regarding TPT regimens' characteristics and service delivery models is key to designing services to improve TPT initiation and completion rates. We examined paediatric TPT preferences in Eswatini, a high TB burden country.DesignWe conducted a sequential mixed-methods study utilising qualitative methods to inform the design of a discrete choice experiment (DCE) among HIV-positive children, caregivers and healthcare providers (HCP). Drug regimen and service delivery characteristics included pill size and formulation, dosing frequency, medication taste, treatment duration and visit frequency, visit cost, clinic wait time, and clinic operating hours. An unlabelled, binary choice design was used; data were analysed using fixed and mixed effects logistic regression models, with stratified models for children, caregivers and HCP.SettingThe study was conducted in 20 healthcare facilities providing TB/HIV care in Manzini, Eswatini, from November 2018 to December 2019.ParticipantsNinety-one stakeholders completed in-depth interviews to inform the DCE design; 150 children 10-14 years, 150 caregivers and 150 HCP completed the DCE.ResultsDespite some heterogeneity, the results were fairly consistent among participants, with palatability of medications viewed as the most important TPT attribute; fewer and smaller pills were also preferred. Additionally, shorter waiting times and cost of visit were found to be significant drivers of choices.ConclusionPalatable medication, smaller/fewer pills, low visit costs and shorter clinic wait times are important factors when designing TPT services for children and should be considered as new paediatric TPT regimens in Eswatini are rolled out. More research is needed to determine the extent to which preferences drive TPT initiation, adherence and completion rates.

Project description:BackgroundFamily-centered care (FCC), based on collaborative participation of the family along with a team of health care providers, is found to increase the well-being of sick infants in neonatal critical care units. Over the last 4 years, the neonatal unit of Dr. Ram Manohar Lohia Hospital in Delhi has innovated and developed an implementation framework for FCC. This qualitative study assessed the acceptability of family-centered care among providers and family members of neonates to identify gaps and challenges in implementation.MethodsIn-depth interviews were conducted among a purposive sample of twelve family members of admitted neonates and six providers to examine their perceptions and experiences regarding FCC.ResultsFamily members and providers expressed a positive perception and acceptance of FCC based on the competencies and knowledge acquired by parents and other caregivers of essential newborn care. Family members reported being satisfied with the overall health care experience due to the transparency of care and allowing them to be by their baby's bedside. Limitations in the infrastructure or lack of facilities at the public hospital did not seem to dilute these positive perceptions. Providers also perceived FCC as a good practice to be continued in spite of concerns around sharing of nursery space with parents, the need for constant vigilance of parents' practices in handling of their newborns, and the need for separate, designated nursing staff for FCC.ConclusionBoth providers and receivers of neonatal care found FCC to be an acceptable form of care. Providers identified challenges and suggested possible solutions, such as need of periodic provider sensitization on FCC, improved staff organization, and provision of mother-friendly facilities to enable her to provide around-the-clock care by her baby's bedside. Overcoming these challenges would allow for better integration of FCC within general clinical care in neonatal care units.

Dataset Information

'There are no more secrets': acceptability of a family-centered model of care for HIV positive children in Eswatini.

Publications

'There are no more secrets': acceptability of a family-centered model of care for HIV positive children in Eswatini.

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