Pediatric HIV adherence: an ever-evolving challenge

Providers working with children living with HIV strive to achieve "good adherence," often viewed only as consistent pill taking by the infected child. This goal, while important, needs to be expanded with a thorough examination of the many biopsychosocial factors impacting the HIV affected family. The complexity of the issues affecting adherence to a pediatric HIV medical regimen can overwhelm both the practitioner and the patient. By utilizing a developmental framework and emphasizing the critical importance of the relationship between provider, patient and family, the authors (both of whom are social workers who have worked over a period of many years with children and families living with terminal and serious chronic illnesses) describe a developmental approach that includes comprehensive assessment to address the multiple challenges faced by individuals and families they have worked with.     

Examining the relationship of social support and family cohesion on ART adherence among HIV-positive adolescents in southern Uganda: baseline findings

Several studies in sub-Saharan Africa have linked social support to better ART (antiretroviral therapy) adherence among adults living with HIV. Less is known about the role of social support and family cohesion in ART adherence among children below 18 years. This paper focuses on HIV-infected adolescents as they transition through the vulnerable developmental stage of adolescence to examine the association between family cohesion and social support, and ART adherence in southern Uganda. We utilized baseline data from Suubi+Adherence study, a five-year randomized longitudinal clinical trial with the overall goal of examining the impact and cost associated with an innovative asset-based social intervention to increase adherence to HIV treatment for HIV-infected adolescents in Uganda. This study employed self-reports to measure social support, family cohesion and ART adherence to treatment from 702 participants in 39 clinics situated in southern Uganda. Regression results indicated that after adjusting for socio-demographic characteristics that family cohesion and social support from caregivers/family were associated with self-reported adherence to ART among HIV-infected adolescents. Social support from classmates, teachers, and friends were not associated with ART adherence. Study results suggest that strengthening family relationships and promoting social support within families caring for adolescents living with HIV can be crucial in addressing ART adherence challenges among adolescents in sub-Saharan Africa.     

Disclosure of parental HIV/AIDS to children in rural China

Abstract

The purpose of this study is to examine the complex issue of disclosure of parental HIV/AIDS to children in rural China. Semi-structured interviews were conducted with children affected by HIV/AIDS aged 8–17 (n?=?16), their caregivers (n?=?16) and key informants in the community (n?=?5). Findings showed that most children were shielded from knowing the HIV/AIDS status of their parents, although many children may have drawn their own conclusions through observation or sources outside the family. Caregivers felt discouraged and hesitated to discuss parental HIV/AIDS with children due to societal stigma and lack of knowledge and skills. Interventions are needed to improve caregivers' skills to communicate about HIV/AIDS with children. Interventions are also needed to reduce the stigma and discrimination towards people living with HIV/AIDS and their families.     

Children's body mass index and nutrition intake in HIV/AIDS

Abstract

HIV/AIDS in China poses many challenges for caregivers and their children. A total of 154 caregivers of HIV/AIDS-affected families were interviewed to examine the children's nutrition intake and body mass index (BMI) in the context of HIV/AIDS in the family. The results showed that 25% of children in HIV/AIDS-affected families were underweight or at risk of being underweight according to US criteria. More than half the children reported that their consumption of protein such as meat, eggs or milk ranged from not at all to two times during the past month. About 40% of the children sometimes or often went hungry due to insufficient food. The study findings underscore the need to improve the nutrition and general health of children of people living with HIV/AIDS.     

Subclinical orthostatic hypotension as a biological marker for low self-esteem in children

Abstract

Globally, approximately 2.8 million children per year are born to HIV-infected women. Improved access to antiretrovirals for both prevention of mother-to-child transmission and maternal treatment results in increasing numbers of HIV-uninfected children living with their HIV-infected mothers. There is increasing evidence for poorer health in these children due to the direct effect of HIV itself and exposure to antiretrovirals. These include altered immunity and haematological parameters and increased morbidity and mortality. However, the psychosocial and economic impact of living within an HIV affected family may be just as important. In this review we have summarized the available data from both developed and developing countries on the vulnerability of HIV-exposed but uninfected children.     

Process evaluation of an intervention to improve HIV treatment outcomes among children and adolescents

SETTING:Children and adolescents with HIV encounter challenges in initiation and adherence to antiretroviral therapy (ART). A community-based support intervention of structured home visits, aimed at improving initiation, adherence and treatment, was delivered by community health workers (CHWs) to children and adolescents newly diagnosed with HIV.OBJECTIVES:To 1) describe intervention delivery, 2) explore CHW, caregiver and adolescents’ perceptions of the intervention, 3) identify barriers and facilitators to implementation, and 4) ascertain treatment outcomes at 12 months’ post-HIV diagnosis.DESIGN:We drew upon: 1) semi-structured interviews (n = 22) with 5 adolescents, 11 caregivers and 6 CHWs, 2) 28 CHW field manuals, and 3) quantitative data for study participants (demographic information and HIV clinical outcomes).RESULTS:Forty-one children received at least a part of the intervention. Of those whose viral load was tested, 26 (n = 32, 81.3%) were virally suppressed. Interviewees felt that the intervention supported ART adherence and strengthened mental health. Facilitators to intervention delivery were convenience and rapport between CHWs and families. Stigma, challenges in locating participants and inadequate resources for CHWs were barriers.CONCLUSION:This intervention was helpful in supporting HIV treatment adherence among adolescents and children. Facilitators and barriers may be useful in developing future interventions.     

The social determinants of health as predictors of adherence to public health preventive measures among parents and young children during the COVID-19 pandemic: a longitudinal cohort study

ObjectivesTo investigate whether social determinants of health (SDOH) are predictive of adherence to public health preventive measures and to describe changes in adherence over time among parents and children.MethodsA longitudinal study was conducted in children aged 0–10 years and their parents through the TARGet Kids! COVID-19 Study in the Greater Toronto Area, Canada (April–July 2020). This study included 335 parents (2108 observations) and 416 children (2632 observations). Parents completed weekly questionnaires on health, family functioning, socio-demographics, and public health practices. The outcome was adherence to public health preventive measures measured separately for parents and children. Marginal log-binomial models were fitted using repeated measures of the outcome and predictors.ResultsUnemployment (RR 0.67, 95% CI: 0.47, 0.97), apartment living (RR 0.72, 95% CI: 0.53, 0.99), and essential worker in the household (RR 0.74, 95% CI: 0.55, 1.00) were associated with decreased likelihood of adherence among parents; however, no associations were observed for other SDOH, including family income and ethnicity. Furthermore, there was no strong evidence that SDOH were associated with child adherence. The mean number of days/week that parents and children adhered at the start of the study was 6.45 (SD = 0.93) and 6.59 (SD = 0.86), respectively, and this decreased to 5.80 (SD = 1.12) and 5.84 (SD = 1.23) by study end. Children consistently had greater adherence than parents.ConclusionSDOH were predictive of adherence to public health preventive measures among parents but less so in children among our sample of relatively affluent urban families. Adherence was high among parents and children but decreased over time. Equitable approaches to support the implementation of public health guidelines may improve adherence.Supplementary InformationThe online version contains supplementary material available at 10.17269/s41997-021-00540-5.     

A Qualitative Exploration of “Mother First” Identity and Antiretroviral Adherence among African American Women Living with HIV in the Mid-South Region of the United States

ABSTRACT

The majority of African American women living with HIV are of child-bearing age and large numbers of these women express a desire to have children. Extant research suggests that motherhood provides HIV-positive women with a sense of hope and normalcy and, in some cases, is associated with positive HIV-related health behaviors. Guided by the tenets of the culture-centered approach (CCA), this qualitative study sought to understand the relationship between motherhood identity and ART adherence among a sample of 50 African American women living with HIV in the Mid-South region of the United States. Our theoretically-informed thematic analysis of in-depth interviews with all 50 women produced three primary themes: (1) experiencing HIV through the lens of motherhood, (2) the physical and social realities of the “mother first” orientation while living with HIV, and (3) the impact of the “mother first” orientation on ART adherence and self-care. These findings identify how participants’ “mother first” identity orientation interacts with their sociocultural environment to enable and constrain their attempts at ART adherence. The findings also provide empirical evidence to support the CCA’s theorizing regarding the ways in which the materiality of structures interact with symbolic cultural meanings to (re)produce health inequalities.     

Socioeconomic status and medication prescription patterns in pediatric asthma in Canada

PurposeTo investigate whether the socioeconomic status of children and adolescents with asthma is associated with optimal use of asthma medications in a health care system that provides free access to prescribed medications.MethodsA cohort of 29,018 children (5–12 y) and adolescents (13–17 y) with asthma was reconstructed from the administrative health database of the Régie de l’assurance maladie du Québec in Canada. Adherence to the Canadian Asthma Guidelines was compared between low-income patients (patients living in families receiving social assistance) and higher-income patients (patients living in middle-class families with working parents). Both groups of patients had free, universal access to medical care and prescribed medications. Patients were considered adherent if they had: (1) 10 doses or fewer of a short-acting β₂-agonist (SABA) per week or (2) greater than 10 doses of a SABA per week plus greater than 1,000 μg of beclomethasone chlorofluorocarbon (CFC) per day. A second definition of adherence was used in which the 10 doses of SABA were replaced by 3 doses.ResultsOur cohort comprised 7,454 adolescents and 21,564 children. Within each definition, low-income adolescents had similar rates of adherence as higher-income adolescents (p = .08–.4). Low-income children, however, had lower rates of adherence than higher-income children when the first definition of adherence was used (76% vs. 80%; p < .001).ConclusionOur study showed that socioeconomic status had a small influence on the likelihood of receiving treatment in adherence with the Canadian Asthma Guidelines among children, whereas no association was detected among adolescents.     

Children and adolescents living with HIV positive parents: Emotional and behavioural problems

Abstract

This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV.     

Characteristics of sheltered homeless families.

To describe the characteristics of homeless families, we interviewed 80 homeless mothers and 151 children living in 14 family shelters in Massachusetts (two-thirds of the shelters in the state). Ninety-four per cent of the families were headed by women, 91 per cent were on AFDC (aid to families with dependent children), with twice as many as the state average having been on AFDC for at least two years; most had long histories of residential instability. Although 60 per cent had completed high school, only a third had worked for longer than one month. One-third of the mothers reported having been abused during their childhood, and two-thirds had experienced a major family disruption. At the time of the interview, almost two-thirds either lacked or had minimal supportive relationships and one-fourth of these named their child as the major support. Eighteen mothers were involved with the Department of Social Services because of probable child abuse or neglect. Seventy-one per cent of the mothers had personality disorders. In contrast to many adult homeless individuals, however, deinstitutionalized persons or those suffering from psychoses were not overrepresented. About 50 percent of the homeless children were found to have developmental lags, anxiety, depression, and learning difficulties, and about half required further psychiatric evaluation. Two-thirds described housing and social welfare agencies as not helpful. Given the many serious problems of the mothers and the difficulties already manifested by their children, comprehensive psychosocial and economic interventions must be made to interrupt a cycle of extreme instability and family breakdown.     

Experiences of men who have sex with men when initiating,implementing and persisting with HIV pre‐exposure prophylaxis

IntroductionHIV pre‐exposure prophylaxis (PrEP) involves the use of antiretroviral medication in HIV‐negative individuals considered to be at risk of acquiring HIV. It has been shown to prevent HIV and has been available in Wales since July 2017. Measuring and understanding adherence to PrEP is complex as it relies on the simultaneous understanding of both PrEP use and sexual activity. We aimed to understand the experiences of men who have sex with men (MSM) living in Wales initiating, implementing and persisting with HIV PrEP.MethodsWe conducted semistructured interviews with MSM PrEP users in Wales who participated in a cohort study of PrEP use and sexual behaviour. Following completion of the cohort study, participants were invited to take part in a semistructured interview about their experiences of taking PrEP. We aimed to include both individuals who had persisted with and discontinued PrEP during the study. The interview topic guide was informed by the ABC taxonomy for medication adherence and the theory of planned behaviour. We analysed our data using reflexive thematic analysis.ResultsTwenty‐one participants were interviewed, five having discontinued PrEP during the cohort study. The developed themes focused on triggers for initiating PrEP, habitual behaviour, drivers for discontinuation and engagement with sexual health services. Stigma surrounding both PrEP and HIV permeated most topics, acting as a driver for initiating PrEP, an opportunity to reduce discrimination against people living with HIV, but also a concern around the perception of PrEP users.ConclusionThis is the first study to investigate PrEP‐taking experiences incorporating established medication adherence taxonomy. We highlight key experiences regarding the initiation, implementation and persistence with PrEP and describe how taking PrEP may promote positive engagement with sexual health services. These findings may be useful for informing PrEP rollout programmes and need to be explored in other key populations.Patient and Public ContributionPrEP users, in addition to PrEP providers and representatives of HIV advocacy and policy, were involved in developing the topic guide for this study.     

Comparisons of HIV-affected and non-HIV-affected families over time

This study compares HIV-affected families' and their non-HIV-affected neighbors' behavioral health outcomes and family conflict. To compare two groups from the same neighborhoods at four points over 18 months, mothers living with HIV (MLH) (N?=?167) and their school-age children (age 6–20) were recruited from clinical care settings in Los Angeles, CA, and neighborhood control mothers (NCM) without HIV (N?=?204) were recruited from modal neighborhoods. In addition, children living at home who were 12 years and older were recruited. We assessed parenting behaviors, family conflict, mental health, sexual behavior, substance use, and HIV-related health behaviors over time. MLH perceived greater economic insecurity at baseline, less employment, and involvement in romantic relationships. MLH reported more emotional distress and substance use than NCM. MLH, however, reported lowered HIV transmission risk. The random regressions indicated that MLH exhibited higher levels of risk and became significantly less depressed and less anxious over time than their non-HIV-affected neighbors. MLH also reported less initial family violence and conflict reasoning than NCM; violence decreased and conflict increased over time for MLH relative to NCM. Children of MLH decreased their marijuana use but hard drug users of MLH increased their risk, over time, compared to children of NCM. Moreover, children of MLH reported more internalizing behaviors than children of NCM. Even when compared to other families living in the same economically disadvantaged communities, MLH and their children continue to face challenges surrounding family conflict and key behavioral health outcomes, especially with respect to substance use and mental health outcomes. These families, however, show much resilience, and MLH report lowered levels of HIV transmission risk, their children report no greater levels of HIV transmission risk, and levels of family violence were lower than reported by families in the same neighborhoods.     

“It’s Not a Case of He’ll Be Home One Day.” The Impact on Families of Sentences of Imprisonment for Public Protection (IPP)

ABSTRACT

There is now a growing body of literature which is centred upon the negative outcomes that occur for many families, and by extension, children who experience the imprisonment of a father. Typically, families suffer the consequences of living with stigma and financial difficulties, while children are often affected by the accompanying secrecy and are provided with limited information about what has happened to their incarcerated parent. These factors can combine to increase the chances of children and family members in this position developing mental and physical health issues and other associated difficulties. Drawing on the findings from the lead author’s research on the impact of indeterminate sentences of Imprisonment for Public Protection (IPPs) upon families, the authors will argue that for families where fathers are serving IPPs, the potentially negative effects of parental incarceration are considerably magnified. The evidence gathered suggested a worrying picture, as the unique nature of the IPP sentence has resulted in a severely detrimental impact upon families and children. With no definite release date, there is an absence of hope, which can quickly lead to despair for IPP prisoners and their families who have very little understanding of the gravity of their predicament.     

Basic care,play, and teaching: the home learning environment and the ‘developmental gradient’ in time use with children

ABSTRACT

Based on the concept of educational quality of the home learning environment, stimulating and responsive family time is crucial for children’s development. In turn, time use depends on the developmental stages in childhood. International studies indicate that family patterns of time use are associated with a family’s resources (i.e. level of education) and age of the children. To detect assumed time use patterns, this paper distinguishes between caring activities (basic care) and educational activities (play and teaching) of daily family life with children of various age groups (infants, preschool aged children, and primary school aged children). Data are drawn from the Time Use Survey in 2012/2013 conducted by the German Federal Statistical Office (N?=?560). Tobit regression analyses show that time use for each activity differs between families with low and families with high level of education, referring to various child age groups. The results indicate that a ‘developmental gradient’ for time use in the home learning environment is evident.     

Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

IntroductionCOVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed.ObjectivesTo coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond.MethodsSemi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads.ResultsThe rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking.ConclusionsCombining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations.Patient or Public ContributionWe worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.     

Social planning in Canada for families with HIV infection

Parents living with HIV and their children face complex medical and social problems. Whether the children are infected or not, they are all affected by the presence of HIV in a parent. The purpose of this article is to describe the problems of families with HIV and to propose social planning measures to respond to their psychosocial needs. It is based on a multicentre study that included in-depth interviews with 110 parents representing 91 Canadian families living with HIV. The study's findings and recommendations were reviewed by parents with HIV, social workers specializing in helping affected families, and a multidisciplinary consensus conference. This process identified six areas needing attention: stigma and disclosure; promoting and supporting family health; planning and transitions for the care of children; economic issues; cultural and immigrant issues; and education, advocacy, policy development, and research. Recommendations for action were made in each area.     

Association of regional socioeconomic deprivation and rurality with global developmental delay in early childhood: Data from mandatory school entry examinations in Germany

BackgroundFrom birth to young adulthood, health and development of young people are strongly linked to their living situation, including their family’s socioeconomic position (SEP) and living environment. The impact of regional characteristics on development in early childhood beyond family SEP has been rarely investigated. This study aimed to identify regional predictors of global developmental delay at school entry taking family SEP into consideration.MethodWe used representative, population-based data from mandatory school entry examinations of the German federal state of Brandenburg in 2018/2019 with n=22,801 preschool children. By applying binary multilevel models, we hierarchically analyzed the effect of regional deprivation defined by the German Index of Socioeconomic Deprivation (GISD) and rurality operationalized as inverted population density of the children’s school district on global developmental delay (GDD) while adjusting for family SEP (low, medium and high).ResultsFamily SEP was significantly and strongly linked to GDD. Children with the highest family SEP showed a lower odds for GDD compared to a medium SEP (female: OR=4.26, male: OR=3.46) and low SEP (female: OR=16.58, male: OR=12.79). Furthermore, we discovered a smaller, but additional and independent effect of regional socioeconomic deprivation on GDD, with a higher odds for children from a more deprived school district (female: OR=1.35, male: OR=1.20). However, rurality did not show a significant link to GDD in preschool children beyond family SEP and regional deprivation.ConclusionFamily SEP and regional deprivation are risk factors for child development and of particular interest to promote health of children in early childhood and over the life course.     

Improving the health and mental health of people living with HIV/AIDS: 12-month assessment of a behavioral intervention in Thailand

Objectives. We examined findings from a randomized controlled intervention trial designed to improve the quality of life of people living with HIV in Thailand.Methods. A total of 507 people living with HIV were recruited from 4 district hospitals in northern and northeastern Thailand and were randomized to an intervention group (n = 260) or a standard care group (n = 247). Computer-assisted personal interviews were administered at baseline and at 6 and 12 months.Results. At baseline, the characteristics of participants in the intervention and standard care conditions were comparable. The mixed-effects models used to assess the impact of the intervention revealed significant improvements in general health (B = 2.51; P = .001) and mental health (B = 1.57; P = .02) among participants in the intervention condition over 12 months and declines among those in the standard care condition.Conclusions. Our results demonstrate that a behavioral intervention was successful in improving the quality of life of people living with HIV. Such interventions must be performed in a systematic, collaborative manner to ensure their cultural relevance, sustainability, and overall success.People living with HIV/AIDS in Thailand face multiple challenges, including coping with HIV-related disclosure and stigma and maintaining positive family relationships. HIV disclosure has been identified as a key stressor for people living with HIV in Thailand^1–3; when patients do not disclose their serostatus, their odds of becoming depressed increase 3-fold.⁴ Disclosure is also a key issue among Thai HIV support groups.⁵ Once individuals disclose their serostatus to their partners and family members, treatment becomes a challenge for the entire family.In addition to disclosure, it is necessary to address stigma as an HIV-related stressor. We have documented a high level of perceived stigma in Thailand and associations with other conditions, including a significant association between stigma and depression.⁶ People living with HIV in Thailand also face challenges with respect to maintaining general health routines,⁷ including medical visits, prophylactic treatment of symptoms (e.g., hepatitis C virus, pneumonia, tuberculosis),⁸ adherence to antiretroviral therapy (ART),⁹ knowledge of the course of their disease, and effective communication with doctors.By contrast, other factors have been shown to have a positive effect on management of HIV. For example, Thailand is a strongly family-oriented society, and typical Thai families are tightly knit. Therefore, family social support may help people living with HIV increase their adherence to ART and decrease their risk of depression.^9,10 Parents of children living with HIV need information about how their children may respond to their illness, how to parent children while dealing with their own illness, how to maintain positive family routines, and how to generate positive parental bonds with their children. Knowledge in such areas is hypothesized to improve patients’ quality of life and their children''s long-term adjustment.^11–13Past behavioral interventions in Thailand have framed HIV as an individual stressor for people living with the disease.^14,15 To address the multiple negative and positive factors faced by people living with HIV and their families in Thailand, we conducted a randomized controlled intervention trial in the northern and northeastern areas of the country. On the basis of the work of Rotheram-Borus et al.,^13,16–21 we identified common factors, processes, and principles shared across evidence-based interventions^22–24 and adapted them to address the specific needs of people living with HIV in Thailand. Here we describe findings based on data collected at baseline, 6 months, and 12 months to assess the efficacy of a cognitive-based intervention designed to improve the quality of life of people living with HIV.