Caregiver Engagement Research Articles

"Doing the Right Thing": Family Caregivers Managing Medical and Nursing Tasks in the Postacute Home Health Care Setting.

Family caregivers often manage complex medical and nursing tasks (MNTs) for older adults transitioning from hospital to home. To explore caregivers' experiences managing MNTs in the postacute home health care (HHC) setting, we interviewed by phone 20 caregivers of older adults who received HHC following a hospitalization. Interviews were recorded, transcribed, and analyzed using directed content analysis. Caregivers highlighted the technical complexity and emotional impact of performing MNTs, as well as social (e.g., family, friends) and environmental (e.g., neighborhood, housing) resources they leveraged to meet the older adults' care needs. Caregivers also identified challenges coordinating care and services within HHC and the larger health care system. Caregiver engagement in the postacute HHC setting should incorporate tailored training and support, assessments of socioenvironmental context and resources, and facilitated navigation of the health care system. Future research should elucidate factors associated with successful collaborative relationships among HHC providers, older adults, and their caregivers in the postacute HHC setting.

More Than a Story: Engaging Young Learners Virtually

The content of this article was originally developed as a presentation for the Texas Library Association Annual Conference in March 2020. We intended to share about the importance of intentional early literacy-based programs, staff training, and using programming templates to create sustainable programming outlines. In light of current events, we have adapted our content to include strategies for shifting to a virtual programming environment while continuing to support early literacy and caregiver engagement.

Opportunities for the use of health information technology to support research.

In the last decade, expanding use of health information technology (IT) across the United States has created opportunities for use of electronic health data for health services and biomedical research, but efforts may be hampered by limited data access, data quality, and system functionality. We identify five opportunities to advance the use of health IT for health services and biomedical research, which informed a federal government-led, collaborative effort to develop a relevant policy and development agenda. In particular, the health IT infrastructure should more effectively support the use of electronic health data for research; provide adaptable technologies; incorporate relevant research-related functionality; support patient and caregiver engagement in research; and support effective integration of knowledge into practice. While not exhaustive, these represent important opportunities that the biomedical and health informatics communities can pursue to better leverage health IT and electronic health data for research.

Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

IntroductionChildren with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial.MethodsMTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches).ResultsWe enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes.ConclusionMind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASDTrial registrationThis study is registered with ClinicalTrials.gov: NCT03711799.

Training providers at Children’s Advocacy Centers to treat early childhood trauma: Perspectives on barriers, facilitators, and sustainability

Nearly half of child maltreatment victims are under the age of six, yet mental health providers are rarely trained in evidence-based treatments for this population. As interdisciplinary agencies that coordinate responses to child maltreatment, Children’s Advocacy Centers (CACs) are well-positioned to facilitate access to trauma-focused treatment for an early childhood population, provided the proper training. The present study was a qualitative evaluation of the implementation of Child-Parent Psychotherapy (CPP), a treatment that addresses traumatic stress and child-parent attachment in children ages 0–5, in a statewide network of seventeen CACs. Participants were 17 clinicians, supervisors, and senior leaders from ten CACs who completed qualitative interviews about their experiences with implementation of CPP and their plans for sustainment of CPP. They were interviewed after approximately 8 months of an 18-month CPP training initiative and again approximately 2 months after the training initiative ended. Interview transcripts were coded using a conventional content analysis approach. We identified 11 major themes related to barriers and facilitators in the implementation and sustainment of CPP in CACs. Facilitators included meaningful expansion of services and certain aspects of the training process (e.g., group supervision). Barriers included difficulties with caregiver engagement and clinicians feeling “lost” during the extended learning process for CPP. Factors anticipated to affect future sustainment of CPP included staff turnover at CACs and the availability of CPP training in the future. Our results have implications for clinicians, administrators, and policymakers interested in the use of evidence-based treatments for specialty populations in multidisciplinary settings like CACs.

CHE-S® as a tool to predict the Caregiver’s ability to actively manage disability of stroke patients admitted to the ward of the complex rehabilitation structure of ASUGI

Introduction: This article affirms that measuring the Caregiver’s emotional experience and engagement, especially as the condition of the person assisted changes, is useful for assessing the sustainability of the care plan.
 Methods: With this pilot study, aimed at detecting the level of Caregiver engagement, by using the Caregiving Engagement Scale (CHE-S®), for people suffering from chronic and/or fragile pathologies, it was decided to verify the relationship between engagement levels and other variables such as: socio-demographic characteristics of the Caregiver; duration and frequency person; clinical characteristics of the assisted person.
 Results and Conclusions: In the future, the results of this research will allow to define new working practices to support those who take on the responsibility and burden of caring for a sick, fragile, disabled family member.

An Untapped Potential in Primary Care: Semi-Structured Interviews with Clinicians on How Patient Portals Will Work for Caregivers in the Safety Net

BackgroundPatients within safety-net settings are less likely to access health information on patient portals, despite expressed interest. Family and friends are important resources to assist these patients (ie, Medicaid recipients, older patients, patients with limited English proficiency) in navigating health systems, and provider support of the use of patient portals among these groups may also facilitate caregivers’ use of their patients’ portal.ObjectiveBecause safety net providers work closely with caregivers to care for their patients, we used qualitative methods to explore safety net providers’ perspectives on portal use among caregivers for their patients, especially as there is limited literature about caregivers’ use of portals in the safety net.MethodsWe conducted 45- to 60-min semistructured telephone interviews with providers from three large California safety-net health systems. The interviews focused on providers’ experiences with caregivers, caregiver roles, and how the portal could be leveraged as a tool to support caregivers in their responsibilities. A total of three coders analyzed the interview transcripts using both deductive and inductive approaches and established a consensus regarding major themes.ResultsOf the 16 participants interviewed, 4 specialized in geriatrics, and all held a leadership or administrative role. We described themes highlighting providers’ recognition of potential benefits associated with caregiver portal use and specific challenges to caregiver engagement.ConclusionsProviders recognized the potential for portals to improve information delivery and communication by helping caregivers assist socially and medically complex patients in the safety net. Providers in safety net sites also discussed a clear need for better ways to keep in touch with patients and connect with caregivers, yet security and privacy are perhaps of higher importance in these settings and may pose challenges to portal adoption. They noted that caregivers of patients in the safety net likely face similar communication barriers as patients, especially with respect to digital literacy, health literacy, and English proficiency. Further research is needed to assess and support caregivers’ interest and ability to access portals across barriers in health and digital literacy, and English proficiency. Portal platforms and health systems must also address specific strategies to uphold patient preferences while maintaining privacy and security.

Mealtime Caregiving Engagement for Residents with Advanced Dementia: Item Response Theory Analysis.

The 18-item Mealtime Engagement Scale was developed to measure mealtime caregiving engagement with preliminary reliability and validity. Item Response Theory models (i.e., Rasch model and Rating Response Model) may provide insight into item functioning. This was a secondary analysis of 87 videotaped mealtime observations involving 18 nursing home staff providing care to residents with advanced dementia.In both models, item difficulties were distributed considerably along the latent trait and highly correlated. Two thirds of the 18 items were located at the moderate level of mealtime engagement. "Providing one-on-one assistance" was most frequently observed, and "re-approaching individual to continue meal" was least frequently observed. All items showed desirable fit to the models. The Rasch model had a significantly smaller deviance than the Rating Response Model, indicating an overall better fit. Findings provided preliminary support for item functioning and pointed out directions for item revisions. Future testing in larger diverse samples is needed.

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms

IntroductionApproximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. MethodsSecondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. ResultsOf 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. ConclusionFindings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

Maternal, paternal, and other caregivers' stimulation in low- and- middle-income countries.

Globally, studies have shown associations between maternal stimulation and early child development. Yet, little is known about the prevalence of paternal and other caregivers' stimulation practices, particularly in low- and- middle-income countries (LMICs). Data from the Multiple Indicators Cluster Survey (MICS) and the Demographic and Health Survey (DHS) were combined across 62 LMICs (2010-2018). The sample included 205,150 mothers of children aged 3 and 4 years. High levels of stimulation were defined as caregiver engagement in at least 4 out of 6 possible activities with the child. The proportion of mothers, fathers, and other caregivers providing high levels of stimulation was calculated by country, region, and for the whole sample. Socioeconomic disparities within and between countries were estimated. On average, 39.8% (95% CI 37.4 to 42.2) of mothers, 11.9% (95% CI 10.1 to 13.8) of fathers, and 20.7% (95% CI 18.4 to 23.0) of other adult caregivers provided high levels of stimulation. Stimulation varied by region, country income group, and Human Development Index (HDI), with higher levels of maternal and paternal-but not other caregivers'-stimulation in high-income and high-HDI countries. Within countries, stimulation levels were, on average, lower in the poorest relative to the richest households, and some but not all countries exhibited differences by child sex (i.e., boys vs. girls) or area (i.e., urban vs. rural). Results suggest a need for intervention efforts that focus on increasing caregiver stimulation in LMICs, particularly for fathers and in low-income contexts.

Exploring Ethnic Differences in Caregiver Perceptions of the Quality of Children’s Mental Health Care

The U.S. children’s mental health system is faced with ameliorating the impacts of significant ethnic disparities in service utilization and outcomes. Furthermore, there has been little effort to assess the quality of children’s mental health care. In this study, we compare Haitian, African-American, and White caregiver perceptions of the quality of their child’s mental health care. Four overarching domains were examined: access to care, cultural and linguistic competence, engagement of caregivers, and appropriateness of services. Through the analysis, we identify ethnic differences in the experiences of caregivers in accessing and receiving services for their children, with minority caregivers reporting greater barriers and poorer quality of care. Structural and cultural factors are explored to understand the interaction of multiple processes that shape access to and quality of care. Implications for policy and practice are discussed, including the need for greater cultural competency and responsiveness in mental health care, and the need to build greater trust between providers and minority communities.

Motivational Interviewing and Caregiver Engagement in the Family Check-Up 4 Health.

Motivational interviewing (MI) is a therapeutic style in which a provider elicits client motivation and helps strengthen commitment to change (Miller and Rollnick 2002). The original Family Check-Up (FCU; Dishion and Stormshak 2007)-and the adapted version for improving health behaviors in primary care, the Family Check-Up 4 Health (FCU4Health; Smith et al. 2018a)-are brief, assessment-driven, and family-centered preventive interventions that use MI to improve parent engagement in services to improve parenting and prevent negative child outcomes. This study examines the role of MI in the Raising Healthy Children project, a randomized trial to test the effectiveness of the FCU4Health for the prevention of obesity in pediatric primary care, with data from the 141 families assigned to receive the FCU4Health. Families were eligible for the study if the child was between 5.5 and 12years of age at the time of identification and had a BMI ≥ 85th percentile for age and gender at the most recent visit to their primary care provider. MI skills at the first session predicted caregiver in-session active engagement, attendance at follow-up parenting sessions, and improvements in motivation to address child health and behavior goals. Baseline characteristics of the family (i.e., child health diagnosis, caregiver baseline depression, motivation, and Spanish language preference) had differential associations with responsiveness and MI skills. This study has implications for program development, provider training, and fidelity monitoring.

Young-Child Feeding in Challenging Settings: A Case Study in Artisanal Mining Families in the Republic of Guinea

Abstract Objectives Artisanal and small-scale mining (ASM) is a common livelihood across 80 LMICs, particularly among the rural poor in remote areas. Such livelihoods offer higher income potential but also potentially higher environmental and health risks which may incude child malnutrition. Wasting affects ∼15% of children in gold-mining households in northern Guinea, for example, and higher-than-average levels observed in non-mining areas of other countries. This research aims to understand potential causes of child undernutrition by examining diets of children in ASM communities as well as factors driving caregivers’ food choices. Methods Data were collected in 2018–2019 via cross-sectional surveys of mining households with young children (n = 611); in-depth interviews with young children's mothers and other caregivers (n = 112), and observations at mining sites and in young children's homes (n = 25). Quantitative data were analyzed, via descriptive and associational analysis. Qualitative data were analyzed using deductive coding. Results Young children's diets were generally very poor, with only 22% and 21% meeting minimum dietary diversity and minimum meal frequency, respectively. Consumption of micronutrient-rich foods was rare. Key factors influencing household food purchase and food consumption for young children included highly variable day-to-day incomes, low availability of fresh food and appropriate complementary foods, higher availability of highly processed foods, concerns about food hygiene and safety, and limited time available for buying food. A lack of childcare options, combined with unsafe environments for children at mining sites, led to young children being cared for by non-parent caregivers who struggled to provide nutritious meals. Conclusions Social and economic realities shape food choices for young children in households that subsist on unstable, informal livelihoods. Improving children's nutrition in such areas will require improving availability of appropriate complementary foods and engagement of caregivers and food vendors. Funding Sources Funded by Drivers of Food Choice Competitive Grants Program through DFID and Bill & Melinda Gates Foundation, and managed by the University of South Carolina. The views expressed do not necessarily reflect the UK Government's official policies.

Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study.

Interstitial lung diseases (ILDs) comprise a heterogeneous group of fibrotic, progressive pulmonary diseases characterized by poor end-of-life care and hospital deaths. In 2012, we launched our Multidisciplinary Collaborative (MDC) ILD clinic to deliver integrated palliative approach throughout disease trajectory to improve care. We sought to explore the effects of palliative care and other factors on location of death (LOD) of patients with ILD. The MDC-ILD clinic implemented a palliative care bundle including advance care planning (ACP), opiates use, allied health home care engagement, and use of supplemental oxygen and early caregiver engagement in care. Data from patients with ILD who attended the clinic and died between 2012 and 2019 were used to generate scores representing the components and duration of palliative care (palliative care bundle score) and caregiver involvement (caregiver engagement score). We examined the impact of these scores on patients' LOD. A total of 92 MDC-ILD clinic patients were included, 57 (62%) had home or hospice deaths. Patients who died at home or hospice had higher palliative care bundle scores (10.0 ± 4.0 vs 7.8 ± 3.9, P = .01) and caregiver engagement scores (1.7 ± 0.6 vs 1.3 ± 0.7, P = .01) compared to those who died in hospital. Patients were 1.13 times more likely to die at home or hospice following a 1-point increase in palliative care bundle score (95% CI: 1.01-1.29, P = .04) and 2.38 times more likely following a 1-point increase in caregiver engagement score (95% CI: 1.17-5.15, P = .02). Home and hospice deaths are feasible in ILD. Early initiation of palliative care bundle components such as ACP discussions, symptom self-management, caregiver engagement, and close collaboration with allied health home care supports can promote adherence to patient preference for home or hospice deaths.

Stage 1 Registered Report: The experiences and perceptions of parent-child interaction therapy for parents of young children with communication difficulties: A qualitative evidence synthesis protocol

Background: Parent-child interaction therapy refers to a group of interventions mediated by trained parents to address areas of developmental difficulties in children. In the field of speech and language therapy it is used in early intervention for children with speech, language and communication difficulties. The intervention involves training parents and caregivers on the importance of responsivity and language input in daily interactions and coaches them on strategies to implement these with the children. As the success of the intervention is heavily influenced by caregiver engagement, understanding and acceptance, it is important to consider their views. However, to date there has been limited work on synthesising parental views of this intervention. Methods: This is a protocol for a qualitative evidence synthesis of peer-reviewed qualitative papers addressing the experiences and perceptions of parent-child interaction therapy for parents of children with communication difficulties. We will complete a systematic search of 11 databases, review the reference lists and complete a cited reference search of all included studies. Two authors will independently screen tests for inclusion, initially by title and abstract, with full-text screening as necessary. Thematic synthesis will be used for all included studies. We will appraise the quality of included studies using CASP and confidence in the review findings using GRADE CERQual. Discussion: As the views of parents are pivotal in the success of this intervention, the findings from this synthesis should help to guide best practice and policy for the future implementation of parent child interaction therapy for children with communication difficulties..

Fathers' food parenting: A scoping review of the literature from 1990 to 2019.

While food parenting is a robust area of inquiry, studies have largely focused on mothers. Given the diversity of family structures today and increases in fathers' engagement in caregiving, fathers' food parenting warrants attention. We present a scoping review of research on fathers' food parenting (1990-2019). Eligible studies included peer-reviewed research published in English documenting fathers' food parenting and presenting results for fathers separate from mothers. Seventy-seven eligible studies were identified. Most studies were based in the U.S (63.6%) and utilized a cross-sectional design (93.5%). Approximately half of studies used a validated measure of food parenting (54.5%) and slightly less than 30% utilized theory (28.6%). Many studies did not report information on fathers' residential status (37.7%) or their relationship to the target child (biological vs social) (63.6%). Content analysis of study findings showed that: fathers are involved in food parenting, but at lower levels than mothers; there are few consistent mother-father differences in food parenting practices; and fathers' controlling food parenting is linked with negative nutrition outcomes in children while responsive food parenting is linked with positive child outcomes. To better inform family interventions to prevent childhood obesity, future food parenting research with fathers should recognize the diversity of family structures and utilize prospective, theory-based, designs.

Stage 1 Registered Report: The experiences and perceptions of parent-child interaction therapy for parents of young children with communication difficulties: A qualitative evidence synthesis protocol

Background: Parent-child interaction therapy refers to a group of interventions mediated by trained parents to address areas of developmental difficulties in children. In the field of speech and language therapy it is used in early intervention for children with speech, language and communication difficulties. The intervention involves training parents and caregivers on the importance of responsivity and language input in daily interactions and coaches them on strategies to implement these with the children. As the success of the intervention is heavily influenced by caregiver engagement, understanding and acceptance, it is important to consider their views. However, to date there has been limited work on synthesising parental views of this intervention. Methods: This is a protocol for a qualitative evidence synthesis of peer-reviewed qualitative papers addressing the experiences and perceptions of parent-child interaction therapy for parents of children with communication difficulties. We will complete a systematic search of 11 databases, review the reference lists and complete a cited reference search of all included studies. Two authors will independently screen tests for inclusion, initially by title and abstract, with full-text screening as necessary. Thematic synthesis will be used for all included studies. We will appraise the quality of included studies using CASP and confidence in the review findings using GRADE CERQual. Discussion: As the views of parents are pivotal in the success of this intervention, the findings from this synthesis should help to guide best practice and policy for the future implementation of parent child interaction therapy for children with communication difficulties..

Military to civilian transition challenges, caregiving activities, and well-being among spouses of newly released Canadian Armed Forces Veterans

Introduction: Transition to civilian life may not only be highly challenging for service members, but also for their spouses, especially following a medical release. Often, the families of ill or injured service members must confront unexpected responsibilities related to caring for the member, while having to adjust to civilian life. This study was conducted to examine military to civilian transition challenges and engagement in caregiving among spouses of newly released Canadian Armed Forces (CAF) Veterans and their associations with spousal well-being. Methods: The Canadian Armed Forces Transition and Well-Being Survey (CAFTWS) was administered to spouses of CAF Veterans released in 2016 ( N = 595). The survey assessed spouses’ experiences with a range of military to civilian transition challenges and engagement in caregiving, as well as various indicators of their well-being (e.g., daily stress and psychological distress). Regression analyses were conducted to assess the associations of transition challenges and caregiving with well-being. Results: Results revealed that challenges related to finding educational opportunities and health care providers, and loss of military identity, as well as more frequent engagement in caregiving, were significantly associated with elevated levels of daily stress and psychological distress among spouses of Veterans. Discussion: This study is among the first to examine transition experiences, caregiving and well-being in a representative sample of Veterans’ spouses. Findings outline key challenges experienced and underline important predictors of well-being. Recommendations on services that could help facilitate or improve the experiences of families during the transition process are discussed.

The association between father involvement in caregiving and early childhood overweight or obesity.

Despite the increasing trend of paternal engagement in caregiving, fathers remain underrepresented in studies on parenting and childhood obesity. This study examined the association between father involvement in caregiving and child's weight status within a longitudinal dataset from Japan. The data were obtained from a population-based cohort study in Japan (N = 29 584). The association between father's involvement in child caregiving (age 18 months) on the weight status of the same children at age 3.5 years was examined by logistic regression and linear regression analysis. Furthermore, we checked the interaction between maternal employment & father involvement by creating four mutually exclusive groups of families. Children whose fathers were highly involved in caregiving were less likely to be overweight (OR = 0.90, 95% CI, 0.85-0.96). Employed mothers with high paternal involvement in caregiving were 30% less likely to have children with overweight or obesity compared to those with low paternal involvement (95% CI, 0.55-0.90). Father involvement in caregiving is associated with the development of overweight or obesity in early childhood, and may also modify the association between maternal employment and child's weight status. Social policies to support shared child-rearing such as expanding paid parental leave could help families to raise children with healthy weight.

Differential Self-Reported Determinants to Antiretroviral Therapy Adherence: Findings from Caregivers of Children Under Five Years Living with Human Immunodeficiency Virus Infection Attending Al-Sabah Hospital, South Sudan.

Aim/ObjectiveThis study explored the caregivers’ self-reported determinants of antiretroviral therapy (ART) adherence among children under five years living with human immunodeficiency virus (HIV) infection attending Al-Sabah Hospital, South Sudan.MethodsA cross-sectional study of 126 caregivers of HIV-infected children under five years was conducted at Al-Sabah Hospital, South Sudan. Data were collected using an interviewer-administered questionnaire. The self-reported adherence was measured as a binary variable using binary logistic regression. Only variables that were significant at bivariate analysis were analyzed at multivariate level and interpreted using the odds ratios (p< 0.05).ResultsOut of 126 caregivers with HIV-infected children, 38 (30.2%) did not adhere to ART. Of the proportion that adhered to ART (88, 69.8%), 49 (55.7%) were male. Most of the children (52, 59.1%) were above two years, but under five years. Fifty (56.8%) of those who adhered had completed 3 months on ART, and the majority were at WHO stage-1 of HIV infection. Analysis of the determinants indicated that children’s duration on ART (p=0.001), type of ART regimen (single, double or triple therapy) (p=0.065), type of work done by the caregiver to earn a living (p-value 0.003), time a child was initiated on ART (p=0.002), caregiver–child relationship (p=0.002), caregiver-spousal support (p=0.019), type of support obtained whether monetary or not (p=0.000), when the child was started on ART (p=0.004), the person administering ART (p=0.010), the type of ARVs administered (p=0.001), the caregiver detecting ART side effects (p=0.000), types of adverse effects suffered by the child (p=0.043), time of receiving ART (p=0.047), use of western medicine (p=0.043), healthcare cadre (p=0.002), the kind of attention the healthcare provider offered (p=0.015), and improvements in quality of HIV services (p=0.001) were significantly associated with ART adherence.ConclusionThe study findings indicated that ART adherence among HIV-infected children under five years was suboptimal. This will necessitate continuous engagement and education of caregivers on the prominence of adhering to ART.