Sankofa pediatric HIV disclosure intervention did not worsen depression scores in children living with HIV and their caregivers in Ghana.
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ABSTRACT:
SUBMITTER: Radcliffe C
PROVIDER: S-EPMC7576749 | biostudies-literature | 2020 Oct
REPOSITORIES: biostudies-literature
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Sankofa pediatric HIV disclosure intervention did not worsen depression scores in children living with HIV and their caregivers in Ghana.
Radcliffe Christopher C Sam Aba A Matos Quinn Q Antwi Sampson S Amissah Kofi K Alhassan Amina A Ofori Irene Pokuaa IP Xu Yunshan Y Deng Yanhong Y Reynolds Nancy R NR Paintsil Elijah E
BMC public health 20201020 1
<h4>Background</h4>The 'Sankofa' pediatric HIV disclosure study (2013-2017) was an intervention that aimed to address the low prevalence of disclosure of HIV status in Ghana.<h4>Methods</h4>We conducted a cross-sectional study at the intervention site in Kumasi, Ghana, in 2019, (2 years after study closure) and administered the 21-item Beck Depression Inventory (BDI) and the 10-item Child Depression Inventory (CDI) to caregiver-child dyads who received the intervention.<h4>Results</h4>We enrolle ...[more]
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Project description:Prior studies show an association between caregiver depression and child health outcomes. There has been little examination of depression among caregivers of HIV-infected children in sub-Saharan countries where pediatric HIV is concentrated. Using baseline data collected in the pediatric HIV disclosure intervention trial, Sankofa, we examined the prevalence and factors associated with depression among caregivers (N = 446) of children infected with HIV in Ghana. Data were analyzed with descriptive and regression analyses. The mean age of the caregivers was 42.2 ± 10.4 years. Eighty percent of the caregivers were female and 59% were HIV-infected. Twenty-eight percent (n = 126) of the caregivers were found to have mild to severe depression. In the adjusted model, factors significantly associated with caregiver depression included: HIV-positive caregiver status (P = 0.04), low income (P = 0.02), lower social support, (P = 0.01), lower HIV knowledge, (P = 0.01), worse HIV illness perceptions (P≤0.001), and greater perceived HIV stigma (P≤0.001). Although we found a high prevalence of depression among our study participants, several of the risks factors identified are modifiable and amenable to interventions that are locally available and affordable.
| S-EPMC6382516 | biostudies-literature
Project description:BackgroundDisclosing HIV status to HIV-positive children is a major challenge facing families and health care providers. Despite recommendations for disclosure, rates remain low. We tested whether a pediatric HIV disclosure intervention delivered as an integral component of routine HIV health care in Ghana would improve disclosure to children.MethodsDyads of HIV-infected children aged 7-18 years and their caregivers were enrolled from 2 HIV clinics in Accra and Kumasi, Ghana. The sites were randomly assigned to one of the 2 intervention arms to avoid treatment contamination between intervention and control participants. Trained interventionist used theory-guided therapeutic communication and personalized interaction to promote disclosure. Disclosure outcomes were measured at 12-week intervals. All analyses were completed using a modified intention-to-treat approach.ResultsWe enrolled 446 child-caregiver dyads (N = 240 intervention group; N = 206 control group); 52% of the children were boys, mean age 9.78 (±2.27) years. For disclosure at 1 year, a better overall treatment effect was observed (P < 0.001). Children in the treatment group had greater disclosure at each time point (P < 0.001) and a higher proportion of them had been disclosed to by 1 year (51.4% vs. 16.2%; P < 0.001; un-adjusted hazard ratio = 3.98: 95% confidence interval: 2.63 to 6.03) and 3 years (71.3% vs. 34.0%; unadjusted hazard ratio = 4.21: 95% confidence interval: 3.09 to 5.72). In the multivariate Cox model, factors associated with disclosure were treatment group (P < 0.001), children <11 years of age (P < 0.001), HIV-infected caregivers (P = 0.015), and caregiver's with greater education (P = 0.022).ConclusionsThis practical clinic-based disclosure intervention shows excellent promise as a means of improving HIV pediatric disclosure outcomes.
| S-EPMC7138721 | biostudies-literature
Project description:The majority of HIV-infected children in sub-Saharan Africa have not been informed of their HIV status. Caregivers are reluctant to disclose HIV status to their children because of concern about the child's ability to understand, parental sense of guilt, and fear of social rejection and isolation. We hypothesized that the low prevalence of pediatric HIV disclosure in Ghana is due to lack of accurate HIV information and high HIV stigma among caregivers. This is a preliminary analysis of baseline data of an HIV pediatric disclosure intervention study in Ghana ("Sankofa"). "Sankofa" - is a two-arm randomized controlled clinical trial comparing disclosure intervention plus usual care (intervention arm) vs usual care (control arm) at Korle-Bu Teaching Hospital (KBTH; control arm) and Komfo-Anokye Teaching Hospital (KATH; intervention arm). We enrolled HIV-infected children, ages 7-18 years who do not know their HIV status, and their caregivers. Baseline data of caregivers included demographic characteristics; Brief HIV Knowledge Questionnaire (HIV-KQ-18); Brief Illness Perception Questionnaire; and HIV Stigma Scale. Simple and multivariable linear regression analyses were used to assess the relationship between caregiver characteristics and HIV knowledge, stigma, and illness perception. Two hundred and ninety-eight caregivers were enrolled between January 2013 and July 2014 at the two study sites; KBTH (n = 167) and KATH (n = 131). The median age of caregivers was 41 years; 80.5% of them were female and about 60% of caregivers were HIV-positive. Seventy-eight percent of caregivers were self-employed with low household income. In both unadjusted and adjusted analyses, HIV negative status and lower level of education were associated with poor scores on HIV-KQ. HIV positive status remained significant for higher level of stigma in the adjusted analyses. None of the caregiver's characteristics predicted caregiver's illness perception. Intensification of HIV education in schools and targeted community campaigns are needed.
| S-EPMC4665118 | biostudies-other
Project description:With the scale-up of effective antiretroviral therapy in resource-limited settings, many HIV-infected children are now able to survive into adulthood. To achieve this potential, children must navigate normative developmental processes and challenges while living with an unusually complex, stigmatizing, potentially fatal chronic illness and meeting the demands of treatment.Yet many of these children, especially preadolescents, do not know they are HIV-infected. Despite compelling evidence supporting the merits of informing children of their HIV status, there has been little emphasis on equipping the child's caregiver with information and skills to promote disclosure, particularly, when the caregiver faces a variety of sociocultural barriers and is reluctant to do so. In this study, we present the background, process and methods for a first of its kind collaboration that is examining the efficacy of an intervention developed to facilitate the engagement of caregivers in the process of disclosure in a manner suitable to the sociocultural context and developmental age and needs of the child in Ghana. We also report preliminary data that supported the design of the intervention approach and currently available domains of the data system. Finally, we discuss challenges and implications for future research.
| S-EPMC4880360 | biostudies-literature
Project description:BackgroundHIV-related stigma and HIV status disclosure are important elements in the continuous fight against HIV as these impact the prevention efforts and antiretroviral treatment adherence among people living with HIV/AIDS (PLWHA) in many communities.ObjectivesThe objectives of the study were to examine the prevalence and experience of various types of HIV-related stigma and HIV status disclosure among PLWHA in Volta region.MethodsA cross-sectional design was used to collect quantitative data from 301 PLWHA. Descriptive statistics were used to analyze and present data on socio-demographic variables. Correlation analysis was done to determine factors associated with HIV stigma and status disclosure while a Mann-Whitney U test was used to determine differences in internalized HIV stigma.FindingsThe mean age of the participants was 44.82 (SD: 12.22), 224 (74.4%) were female, and 90% attained at least primary education. A Pearson r analysis revealed that ethnicity (r[299] = 0.170, p = 0.003), religious affiliation (r[299] = -0.205, p = 0.001) and social support (r[299] = 0.142, p = 0.014) significantly predicted disclosure of HIV status. Fear of family rejection (62%) and shame (56%) were reasons for non-disclosure of HIV status. A Mann-Whitney's U-test revealed that females are more likely than males to internalize HIV stigma. Community-related HIV stigma in the form of gossip (56.1%), verbal harassment (30.9%), and physical harassment (8.6%) was reported.ConclusionA high rate of HIV status disclosure was found with social support, ethnicity, and religious affiliation being the associated factors. Internalized HIV stigma is prevalent among PLWHA while community-related stigma impacts HIV status disclosure. Strengthening social support systems and implementing culturally appropriate educational interventions may help in reducing community-related HIV stigma.
| S-EPMC8212837 | biostudies-literature
Project description:ObjectivesParents living with HIV who disclose their HIV status to their children could benefit from the parental HIV disclosure. However, it is also very challenging because of persistent stigma and discrimination against HIV. This report describes the study design and protocol of the "Interactive Communication with Openness, Passion, and Empowerment (iCOPE)" randomized controlled trial aimed at assisting parents living with HIV in conducting culturally and developmentally appropriate disclosure to their uninfected children in China through trainings among both parents living with HIV and healthcare providers.MethodsA total of 791 parents living with HIV with children aged between 6 and 15 years and 357 healthcare providers were randomized into either the intervention group or control group. Intervention package for parents consisted of five 2-h sessions focusing on positive coping, disclosure decision making, developing a developmentally appropriate disclosure plan, and accessing social support and post-disclosure counseling. The intervention for healthcare providers was made up of two 45-min sessions organized around two primary themes: knowledge of child cognitive development and effective parent-child communication skills in the context of parental disclosure. The control group received nutritional education of either five 2-h sessions (parents) or two 45-min sessions (healthcare providers). The outcome assessments were conducted at baseline, 6, 12, 18, 24, 30, and 36 months.ConclusionThe iCOPE study is among the first efforts to develop and evaluate a theory-based and multi-level intervention to promote culturally and developmentally appropriate parental HIV disclosure in China. It has implications for healthcare providers, social workers, and policy makers as it will provide efficacy data on how to enhance appropriate parental HIV disclosure and will shed light on developing a clinical guideline regarding parental HIV disclosure in China and other low- and middle-income countries.
| S-EPMC7031783 | biostudies-literature
Project description:The World Health Organisation (WHO) recommends that children living with HIV should be informed about their HIV status within the ages of 6 to 12 years using age-appropriate resources. The aim of this study was to assess the socio-demographic, clinical and psychosocial factors associated with primary caregivers' decisions to disclose HIV to children living with HIV aged 6 to 12 years in Malawi. A cross-sectional study of 429 primary caregivers of children living with HIV were systematically recruited from all regions of the country. Information on HIV disclosure, family and child socio-demographic characteristics, child clinical characteristics, and child and family psychosocial characteristics was collected using validated instruments. Logistic regression was used to analyse data. The prevalence of non-disclosure of HIV status to children was 64 per cent. Concerns about the child's inability to cope with the news (29%), a lack of knowledge on how to disclose HIV status (19%), and fear of stigma and discrimination (17%) were the main reasons for non-disclosure. On multivariate analysis, the odds of non-disclosure were higher among primary caregivers who were farmers (aOR 3.0; 95% CI: 1.1-8.4), in younger children (6-8 years) (aOR 4.1; 95% CI: 2.3-7.4), in children who were in WHO HIV clinical stage one (aOR 3.8; 95% CI: 1.4-10.2), and in children who were not asking why they were taking ARVs (aOR 2.9; 95% CI: 1.8-4.8). On the other hand, nondisclosure of HIV status was less likely in underweight children (aOR 0.6; 95% CI: 0.3-0.9). Many children living with HIV in Malawi are unaware of their HIV status. Non-disclosure is associated with a number of clinical and demographic characteristics. The findings highlight the need to provide guidance and support to primary caregivers to help them to effectively disclose HIV status to their children.
| S-EPMC6333381 | biostudies-literature
Project description:HIV-related stigma has been documented as one of the greatest obstacles to reducing HIV spread, engagement in HIV treatment, and poor mental health functioning among people living with HIV (PLWH). Although disclosure is important for people to receive social support, the fear of stigma and discrimination prevents PLWH from disclosing their status. For children and adolescents growing up with HIV -with no opportunity for normal transition through adolescence due to stigma, it is important to identify additional family and community support systems, to improve their acceptance and health outcomes, including mental health functioning. This study examined family communication and social support factors associated with HIV disclosure and HIV-related stigma among children and adolescents living with HIV in Uganda. Baseline data from an NICHD-funded Suubi+Adherence study (N=702) were analyzed. Adolescents (10-16 years) were eligible to participate if they were: 1) HIV positive and knew their HIV status, 2) prescribed antiretroviral therapy, 3) lived within a family, not an institution, and 4) enrolled in one of the 39 health centers in the study area. Multiple regression analyses were conducted to determine family communication (frequency and level of comfort communicating with caregiver), social support (perceived child-caregiver support and social support from classmates, close friends, teachers, and caregivers), associated with HIV disclosure, disclosure comfort, and HIV internalized and anticipated stigma. Results show that level of comfort communicating with a caregiver was significantly associated with how often children discussed their HIV status with other people (B = 0.02, 95% CI = 0.00, 0.03, p = 0.04), and level of HIV disclosure comfort (B = 0.08, 95% CI = 0.04, 0.13, p < 0.01). In addition, support from within the school environment, i.e., from teachers and classmates, was uniquely associated with both HIV disclosure and HIV-related stigma. Findings point to schools as potential for implementing HIV stigma-reduction programs. In addition, programming aimed at improving HIV care and treatment outcomes for adolescents living with HIV should consider incorporating both family communication strengthening and HIV-stigma reduction strategies in their efforts, in order to improve HIV health-related outcomes, including overall mental health functioning of HIV positive adolescents.
| S-EPMC7411995 | biostudies-literature
Project description:BackgroundDementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana.MethodsUsing a descriptive phenomenological design, we conducted in-depth interviews with primary caregivers in the Ashanti region, Ghana. A semi-structured interview guide was used as the data collection instrument. The data analysis followed Collazi's thematic analysis framework. All coding and categorization were done in NVivo-12.ResultsFive themes emerged from the analysis. These themes included (a) sacrifice of personal interests, and time commitments; (b) financial strain and negative impact on job; (c) feelings of stress and burnout; (d) experience of abuse and stigma; and (e) perceived blessing of caregiving.ConclusionThe study's findings resonate with existing literature, highlighting the consistent struggles faced by caregivers. Sacrificing personal interests, navigating financial strains, and grappling with stress and burnout emerged as pervasive themes. We conclude that despite the negative impacts of caring for PwD, caregivers perceived their role as associated with blessings, deriving positive meaning and fulfilment from their caregiving journey. This study underscores a need to build more compassionate communities in rural settings of Ghana.
| S-EPMC10985993 | biostudies-literature
Project description:INTRODUCTION:Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context. AIM:To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer. METHODS:In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data. RESULTS:Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring. CONCLUSION:Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.
| S-EPMC7067415 | biostudies-literature