Tag: caregiver

Title: Exploring the relationship between caregiving and health: perceptions among orphaned and non-orphaned adolescents in Tanzania

Authors: Kristin Mmari

Date: 2011

Abstract: The objectives of this study were to (1) explore the nature of caregiving for orphaned and non-orphaned adolescents; and (2), examine how changes in the caretaking roles, as a result of a parental loss, impact on an orphan’s sexual behaviors. A total of 52 in-depth interviews and 11 focus group discussions (n = 83) were conducted among adolescent orphans and non-orphans, as well as among 17 caregivers of orphans in Tanzania. Findings revealed three important caregiving roles that contributed to adolescent health: the provision of basic needs, advising and monitoring adolescent behaviors, and assigning household chores. Adolescent participants believed that when these roles are compromised, female orphans’ sexual behaviors are impacted. Consequently, they are perceived to be at greatest risk for HIV. Comprehensive programs are needed for orphans to ensure their basic needs are being met, and to assist caregivers find extra support to carry out their caregiving responsibilities.

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Title: The influence of orphan care and other household shocks on health status over time: a longitudinal study in rural Malawi

Author: Megan Littrell, Neil W Boris, Lisanne Brown, Michael Hill, Kate Macintyre

Date: 2011

Abstract: In the context of rising rates of orphanhood in AIDS-affected settings, very little is understood about implications for caregiver well-being given increasing and intensifying responsibilities for the care of orphaned children. Emotional distress and self-reported health status as well as shifts in household orphan care, wealth, food security and recent illness and death among household members were measured among a panel of 1219 caregivers in rural Malawi between 2007 and 2009. Logistic regression was used to identify predictors of improved and diminished caregiver health and emotional distress. Results suggest that becoming an orphan caregiver is associated with a shift from good to poor health status (adjusted odds ratio AOR=2.29, 95% confidence interval CI=1.16-4.54), and that elevated levels of distress and poor health both persist over time in comparison with care for non-orphans only. Once engaged in orphan care, taking on additional orphans is associated with increased emotional distress in relation to not caring for orphans (AOR=3.16, 95% CI=1.30-7.73) as well as in relation to maintaining the same number of orphans in care over time (AOR=2.84, 95% CI=1.04-7.70). In addition, findings illustrate the strong influence of household wealth and food security on caregiver well-being. Food insecurity and poverty that persist or develop over time are associated with increasing distress. Conversely, maintenance or improvement in food security and household wealth are associated with decreases in distress. Providing all aspects of household maintenance and care for children, primary caregivers are key to the extended family solution for orphaned and vulnerable children. Bolstering the foundation of rural African families to ensure care and protection of these children involves targeting support to orphan caregivers but must also include addressing the issues of poverty and food insecurity that pose a wider threat to caregiving capacity.

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Title:  Health of adults caring for orphaned children in an HIV-endemic community in South Africa

Authors: Caroline Kuo, Don Operario

Date: 2011

Abstract: Abstract In South Africa, an estimated 2.5 million children have been orphaned by AIDS and other causes of adult mortality. Although there is a growing body of research on the well-being of South African orphaned children, few research studies have examined the health of adult individuals caring for children in HIV-endemic communities. The cross-sectional survey assessed prevalence of general health and functioning (based on Short-Form 36 version 2 scale), depression (based on Center for Epidemiologic Studies-Depression scale), anxiety (using Kessler-10 scale), and post-traumatic stress (using the Harvard Trauma Questionnaire) among a representative community sample of adults caring for children in Umlazi Township, an HIV-endemic community in South Africa. Of 1599 respondents, 33% (n=530) were carers of orphaned children. Results showed that, overall, carers reported poor general health and functioning and elevated levels of depression, anxiety, and post-traumatic stress. Carers of orphaned children reported significantly poorer general health and functioning and higher rates of depression and post-traumatic stress compared with carers of non-orphaned children. In multivariate analyses, orphan carer and non-orphan carer differences in general health were accounted for by age, gender, education, economic assets, and source of income, but differences in depression were independent of these cofactors. Interventions are needed to address physical and mental health of carers in general. Greater health problems among orphan carers appeared to be fully explained by socioeconomic characteristics, which offer opportunities for targeting of programs. More research is needed to understand determinants of mental health disparities among orphan carers, which were not explained by socioeconomic characteristics.

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Title: Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries

Authors: Lynne Messer, Brian Pence, Kathryn Whetten, Rachel Whetten, Nathan Thielman, Karen O’Donnell, Jan Ostermann

Date: 2010



In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC) worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations.


Baseline data were collected between May 2006 through February 2008. The sample included 1,480 community-based and 192 institution-based caregivers. Characteristics of the community-based and institution-based caregivers are described using means and standard deviations for continuous variables or counts and percentages for categorical variables. We fit logistic regression models, both for the full sample and separately for community-based and institution-based caregivers, to explore predictors of acceptance of HIV.


Approximately 80% of both community-based and institution-based caregivers were female; and 84% of institution-based caregivers, compared to 66% of community-based caregivers, said that they would be willing to care for a relative with HIV. Similar proportions were reported when caregivers were asked if they were willing to let their child play with an HIV-infected child. In a multivariable model predicting willingness to care for an HIV-infected relative, adjusted for site fixed effects, being an institution-based caregiver was associated with greater willingness (less stigma) than community-based caregivers. Decreased willingness was reported by older respondents, while willingness increased with greater formal education. In the adjusted models predicting willingness to allow one’s child to play with an HIV-infected child, female gender and older age was associated with less willingness. However, willingness was positively associated with years of formal education.


The caregiver-child relationship is central to a child’s development. OAC already face stigma as a result of their orphaned or abandoned status; the addition of HIV-related stigma represents a double burden for these children. Further research on the prevalence of HIV-related acceptance and stigma among caregivers and implications of such stigma for child development will be critical as the policy community responds to the global HIV/AIDS orphan crisis.

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Title: Posttraumatic stress in AIDS-orphaned children exposed to high levels of trauma: the protective role of perceived social support

Authors: Lucie Cluver, Dylan S Fincham, Soroya Seedat

Date: 2009

Abstract: Poor urban children in South Africa are exposed to multiple community traumas, but AIDS-orphaned children are at particular risk for posttraumatic stress. This study examined the hypothesis that social support may moderate the relationship between trauma exposure and posttraumatic stress for this group. Four hundred twenty-five AIDS-orphaned children were interviewed using standardized measures of psychopathology. Compared to participants with low perceived social support, those with high perceived social support demonstrated significantly lower levels of PTSD symptoms after both low and high levels of trauma exposure. This suggests that strong perception of social support from carers, school staff, and friends may lessen deleterious effects of exposure to trauma, and could be a focus of intervention efforts to improve psychological outcomes for AIDS-orphaned children.

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Title: AIDS-Orphanhood and Caregiver HIV/AIDS Sickness Status: Effects on Psychological Symptoms in South African Youth

Authors: Lucie Cluver, Mark Orkin, Mark E Boyes, Frances Gardner, Joy Nikelo

Date: Feb, 7, 2012



Research has established that AIDS-orphaned youth are at high risk of internalizing psychological distress. However, little is known about youth living with caregivers who are unwell with AIDS or youth simultaneously affected by AIDS-orphanhood and caregiver AIDS sickness.


1025 South African youth were interviewed in 2005 and followed up in 2009 (71% retention). Participants completed standardized measures of anxiety, depression, and posttraumatic stress. Comparison groups were youth who were AIDS-orphaned, other-orphaned, and nonorphaned, and those whose caregivers were sick with AIDS, sick with another disease, or healthy.


Longitudinal analyses showed that both AIDS-orphanhood and caregiver AIDS sickness predicted increased depression, anxiety, and posttraumatic stress symptoms over a 4-year period, independently of sociodemographic cofactors and of each other. Caregiver sickness or death by non-AIDS causes, and having a healthy or living caregiver, did not predict youth symptomatology. Youths simultaneously affected by caregiver AIDS sickness and AIDS-orphanhood showed cumulative negative effects.


Findings suggest that policy and interventions, currently focused on orphanhood, should include youth whose caregivers are unwell with AIDS.

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Study Title: Improving Outcomes for Youth in Foster Care: Trauma-Focused CBT

Context: Children and adolescents in foster care have significant, and often unmet, mental health needs (Leslie, Hurlburt, Landsverk, & Barth, 2004). For school-aged youth, the most common problems are disruptive behavior disorders and sequelae of trauma exposure (e.g., Posttraumatic Stress Disorder [PTSD], Depression) (Landsverk, Burns, & Stambaugh, in press). Such mental health problems, in turn, are linked to a range of negative outcomes (e.g., functioning, placement stability/permanency) (James, Landsverk, & Slymen, 2004; Landsverk, Davis, Granger, Newton, & Johnson, 1996). There is tremendous interest in the field to increase use of evidence-based treatments that target specific mental health problems and needs of youth in foster care. Trauma-focused Cognitive Behavioral Therapy (TF-CBT) potentially provides an excellent fit. Evidence from randomized trials supports the efficacy of TF-CBT in treating PTSD, behavior problems, and other trauma sequelae (Cohen, Deblinger, Mannarino, & Steer, 2004). Although TF-CBT holds promise for youth in foster care, there are likely complexities in providing it to such youth. Findings from dismantling research indicate that caregiver involvement is crucial for maximizing treatment effects of TF-CBT (Deblinger, Lippman, & Steer, 1996). However, available evidence and our clinical experience suggest that foster parents are infrequently engaged in a proactive and ongoing manner in their foster children’s mental health treatment.

Study Aims: Therefore the primary aim of the proposed R34 is to conduct a pilot study of TF-CBT with children and adolescents in foster care, with a targeted focus on engaging foster parents in treatment. The proposed project brings together two complementary interventions-evidence-based engagement strategies (McKay, Stoewe, McCadam, & Gonzales, 1998) and TF-CBT (Cohen, Deblinger & Mannarino, 2006; Deblinger & Heflin, 1996)-in an attempt to improve treatment and outcomes for youth in foster care.

Methods: The project includes two phases: Phase 1: (a) preliminary feasibility study (N = 10) of the evidence-based engagement strategies and TF-CBT; and (b) refinement and development of a manualized engagement intervention based on feedback from foster parents and other key informants. Phase 2: pilot study (N=80) of the refined engagement strategies and TF-CBT (ECBT) compared to ‘usual practice’ TF-CBT (i.e., no specialized engagement) to assess implementation of the combined intervention and provide preliminary data on critical outcomes (e.g., PTS symptoms, behavioral problems, placement stability). Findings will be used to inform a large-scale randomized trial (i.e., R- 01) on effectiveness of ECBT to improve outcomes for youth in foster care with mental health problems. Youth in foster care have very high rates of mental health problems (Leslie, Hurlburt, Landsverk, & Barth, 2004). These include externalizing (e.g., conduct disorder, ADHD, oppositional defiant disorder) as well as internalizing (e.g., anxiety, depression, PTSD) problems. Recent research on epidemiology and treatment has suggested that this combination of symptoms is often related to youth in foster care’s extensive histories of exposure to trauma (Simms, Dubowitz, & Szilagyi, 2000) Therefore, effective treatment of the symptoms requires explicit evidence-based treatment that addresses both the underlying sequelae of trauma and the immediate behavioral manifestations. Trauma-focused Cognitive Behavioral Therapy (TF-CBT) is an evidence- based treatment that appears promising, with specific modifications, for this group of high-risk youth (Deblinger, Lippman, & Steer, 1996).

Implications: The proposed research builds from and combines existing evidence- based strategies (Cohen, Deblinger, Mannarino, & Steer, 2004; McKay, Stoewe, McDadam, & Gonzales, 1998) to more effectively treat some of the nation’s most at-risk and vulnerable youth. Findings from this research will be used to develop and disseminate more effective treatments for youth with mental health problems in the foster care system. Such findings should help improve treatment, services, and outcomes within the entire system of care that serves youth with mental health problems (e.g., specialty mental health providers, child welfare and child protective services, juvenile justice).

Principal Investigator: Shannon Dorsey (University of Washington)

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Study Title: Trauma-Focused CBT: Potential Mechanisms that inhibit and facilitate change

Context: Child maltreatment and interpersonal adversity put children at increased risk for posttraumatic stress disorder (PTSD), depression and suicide, substance abuse, and a host of negative mental health outcomes. Recent evidence documents that childhood adversity can have pernicious neurobiological and psychosocial effects that extend risk into adulthood. Trauma- Focused Cognitive-Behavioral Therapy (TF-CBT) has been demonstrated in numerous randomized clinical trials to be an efficacious treatment for maltreated and traumatized children. Early intervention with TF-CBT has the potential to alter the trajectory of risk associated with childhood adversity.

Study Aims: The overall goals of the proposed research are to identify potential mechanisms of change, inhibitors of change, and predictors of early dropout in this treatment. The proposed research integrates a sophisticated analysis of the process of change into an ongoing effectiveness trial of TF-CBT that has been transported to community mental health facilities throughout the state of Delaware.

Methods: Sessions from 75 children who received TF- CBT will be coded with an observational coding system designed to capture theoretically important therapeutic processes. TF-CBT is hypothesized to be associated with a curvilinear pattern of in-session affective arousal and cognitive/emotional processing of the trauma, with peak levels occurring when the child develops a trauma narrative in the exposure phase of therapy. A transient increase in affective arousal is thought to reflect activation of the trauma memories and to facilitate processing. More processing during this narrative phase is hypothesized to be the primary predictor of improvement in PTSD symptoms and problematic child behaviors. Therapist support and caregiver involvement in treatment are expected to help prepare the child for change by decreasing avoidance, a primary inhibitor of later arousal and processing. Caregiver avoidance and processing when exposed to the child’s narrative are also expected to predict child outcomes.

Implications: The proposed research has the potential to reveal key processes that can be mobilized to increase the potency of TF-CBT, reduce rates of dropout, and enhance therapist training as dissemination efforts are undertaken.

Principal Investigator: Adele Hayes (University of Delaware)

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Study Title: A family-based economic empowerment model for orphaned children in Uganda

Study Aims: The overall goal of this R34 is to further develop and examine a family economic empowerment intervention, called SUUBI-MAKA, that creates economic opportunities for families in Uganda who are caring for children orphaned due to the AIDS pandemic, and to lay the groundwork for an R01. The study has two specific aims: (1) To conduct formative work in order to understand children and families’ ability and interest in participating in a family-level economic empowerment intervention focused on savings and family income generation, and their response to this family-focused economic empowerment approach alongside additional intervention components, including savings for youth education and adult mentorship. (2) Based on formative data (Aim #1), to adapt the intervention and examine issues related to feasibility and preliminary outcome on a small scale in order to prepare for a larger study. The intervention, SUUBI-MAKA, uses a novel approach by focusing on economic empowerment of families caring for children orphaned due to AIDS. The intervention has three key components: (1) it promotes family-level income generating projects (micro-enterprises) which we believe will enhance economic stability, reduce poverty, and enhance protective family processes for youth orphaned by AIDS. (2) It promotes monetary savings for educational opportunities for AIDS-orphaned children. (3) It provides an adult mentor to children.

Methods: The intervention will be evaluated via a two-group randomized trial. The two groups are: SUUBI-MAKA or Usual care for orphaned children. The participating children will be nested within 20 primary schools that will be randomly assigned such that all children from a particular school receive the same intervention. There will be three assessment points: baseline (pre-test), 12-month, and 24-month post-intervention. The effectiveness of SUUBI-MAKA will be compared with the Usual care on: children’ educational experience, psychosocial development, sexual risk taking, and mental health, caregiver’s attitudes and capacities, and family and caregiving relationships.

Principal Investigator: Fred Ssewamala (Columbia University)

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Study Title: Enhancing Ugandan HIV-Affected child development with caregiver training

Context: Children up to the age of 5 years affected by HIV are the most vulnerable subgroup of HIV populations globally, especially in low-resource areas. This is because of the strategic, volatile, and vulnerable nature of this highly sensitive period of child development. Mediational intervention for sensitizing caregivers (MISC) has a structured training program to enable caregivers to improve their children’s cognitive and social development during everyday casual interactions in the home.In our preliminary NIMH R34 findings, Ugandan HIV children of caregivers receiving MISC training biweekly for a year showed significantly greater gains on the Mullen Early Learning Scales Composite of g fluid intelligence, when compared to children whose caregivers received a standard health/nutrition education intervention (treatment as usual or TAU). The MISC caregivers were also significantly less depressed, and their child mortality that year was significantly lower.

Study Aims:  Study Aim 1 will evaluate if MISC significantly enhances child outcomes when compared to controls for both HIV-positive and orphan children when assessed from baseline to 6, 12, and 18 months. Study Aim 2 will evaluate if MISC significantly enhances caregiver EWB and daily functioning outcomes. To better understand the mechanisms of MISC-enhanced child development, a Secondary Aim is to evaluate the mediating effect of improved caregiver EWB outcomes on corresponding child development gains, and the modifying effects of caregiver HIV illness and functioning on child outcomes.

Methods: One hundred Ugandan HIV-positive preschool and 200 HIV orphan caregiver/child dyads will be enlisted from Kayunga and Pallisa Districts. These dyads will be randomly assigned by village clusters to either biweekly MISC or health/nutrition education TAU intervention for one year. Child Outcomes are the child development gains on the Mullen, the Early Childhood Vigilance Test (ECVT) of attention, and the Color- Object Association Test (COAT) of memory, the Behavior Rating Inventory of Executive Functioning – Preschool (BRIEF-P), and the caregiver administered version of the Achenbach CBCL. Caregiver Outcomes include an array of emotional wellbeing (EWB) and daily functioning measures validated during the initial qualitative study phase.

Implications: The Overall Impact comes from establishing the feasibility, acceptability, and effectiveness of MISC for HIV orphans and vulnerable children (OVC) and their caregivers in low resource settings; the sustainability of MISC in low resource settings since it is not dependent on published materials or outside resources; the complementary dual impact of significant psychotherapeutic benefit for the caregiver, especially mothers struggling with HIV disease. MISC will also reduce HIV child mortality because in our initial R34 findings, MISC heightened maternal bonding, sensitivity to serious illness, and the prompter seeking of medical care. It also can improve treatment adherence. Finally, our evidence-based MISC caregiver training interventions can be readily implemented globally as a sustainable way to augment OVC cognitive, psychosocial, and medical wellbeing.

Public Health Relevance: Early childhood (up to age 5 yrs) is a period of dramatic change in the cognitive, emotional, social, and behavioral domains; children continuously progress by observing and interacting with the world around them. In the face of economic instability and nutritional, medical and educational deprivation, HIV-affected very young children are the most vulnerable HIV subgroup globally because their families are often the most vulnerable, with little margin for sustaining a favorable developmental milieu for the child. Through strategic caregiver interventions during this sensitive period of child neurodevelopment, our study findings have the potential for positively re-directing the developmental trajectories of tens of millions of HIV-affected children globally.

Principal Investigator: Michael J. Boivin (Michigan State University)

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