Caregivers Of HIV-infected Children Research Articles

Disclosure Experiences and Challenges Among Children and Adolescents Living with HIV/AIDS in Nigeria-A Review of the Literature

Context: Disclosure of HIV positive infection status in children and Adolescents is multifaceted and should take into consideration their age, psychosocial maturity, cultural and clinical context. This study was conducted to examine disclosure experiences and challenges among children and ALWHA in Nigeria. Evidence Acquisition: We conducted narrative review of relevant literatures by searching PubMed, Google scholar and Medscape using predetermined keywords. Results: Findings are presented under themes of process of disclosure and age of disclosure, reasons and challenges of disclosure, reactions and responses to disclosure, consistent with various authors. This study shows that the mean age and reasons for HIV positive status disclosure are variable. Disclosure was mostly executed at home and mostly carried out by parents or caregivers of HIV-infected children. Reactions of children and ALWHA upon disclosure was mainly negative and ranged from feeling of anger to expression of shock to feeling of sadness and to crying. Barriers to HIV-positive status disclosure among caregivers were perceived sense immaturity and age of the child, fear of stigma, fear of child’s inability to cope, fear of blaming the parents and refusal to take antiretroviral (ARV) drugs. While caregivers highlighted several factors that affect disclosure of HIV status to children and adolescents, this study reveals both positive and negative impact on their emotions. Conclusions: It is of note that approach to disclosure is critical, therefore caregivers and healthcare workers should be properly trained and supported with resources required to effectively carry out disclosure. There is need for continuous research to understand and develop age and culture specific approaches to disclosure in children and adolescents in Nigeria.

HIV Disclosure in Children in a Tertiary Hospital in Southern Nigeria–Child’s Perspective

Background: Disclosure of HIV status to children is essential for disease management. Studies on disclosure in children have largely described it from the health provider’s perspective or caregiver’s perspective. Caregivers’ and children’s reports about children’s feelings and distress can however differ. Understanding the disclosure process from the perspective of HIV-positive children will therefore better portray the impact it had on them.
 Aim: The aim of the study was to explore from the child’s perspective the process of disclosure, the impact it had on them, how they have coped and suggestions on how they think it could be done better.
 Methods: A cross-sectional study of HIV-infected children and adolescents aged 8–18 years who are aware of their status attending paediatric HIV clinic at the University of Port Harcourt Teaching Hospital (UPTH), Port Harcourt, Nigeria from April 2015 to March 2016. Data were collected using an open-ended questionnaire administered by a Paediatric health care provider. Information sought included: Biodata (age, gender), educational levels of the child, family characteristics (primary caregiver, orphan status), age at disclosure, process of disclosure, the impact of the disclosure, how they have coped, what they did not like about the way they were told and suggested better ways of telling the children.
 Results: Seventy-eight HIV-positive children and adolescents were interviewed. Their ages ranged from 8 – 18 yrs with a mean age of 14.74±2.23 years. Forty (51.3%) were males, 50 (64.1%) were in secondary schools, 43 (55.1%) were orphans and the mode of transmission was vertical in 70 (89.7%). In majority 33 (42.3%), the biologic mother was the primary caregiver. Majority of the children 34 (43.6%) had their status disclosed to them between 13 and 14 years. The mother alone did the disclosure in 30 (38.5%). Thirty-six (46.2%) were already aware of their status before disclosure. Disclosure was a one-off event without discussions in 48 (61.5%). The commonest immediate reactions was depression 48 (61.5%). The majority 48(61.5%) became more prayerful as a coping strategy. All 78 (100%) agreed that disclosure has positively impacted on their taking their ARV drugs and clinic attendance.
 Concerning suggestions from the children, 36 (46.2%) said the most appropriate age for disclosure should be 12-13 years, 54 (69.2%) suggest that both parents should do the disclosure while 60 (76.9%) said that the children should be told how they got infected. Their major concern was having to take drugs for life 60 (76.9%).
 Conclusion: Disclosure process is suboptimal. Understanding the disclosure process from the perspective of HIV-infected children, therefore, is critical to developing interventions to improve disclosure. Most of the parent’s fears of negative impact of status disclosure may be exaggerated. There is need for health care providers to develop a plan with the caregivers of HIV-infected children on the optimal disclosure process and how to anticipate and resolve questions the children may have following disclosure.

Prevalence and severity of depression among caregivers of HIV-infected children in Enugu, South-East Nigeria

Background: HIV infection significantly increases depression risk in the caregivers of HIV-infected children. Our study is aimed at determining the depression prevalence and severity in caregivers of children who are infected with HIV. Materials and Methods: This was a hospital-based, cross-sectional, and comparative study. Study participants who met the inclusion criteria were enrolled consecutively to achieve the calculated sample size. Their sociodemographic variables were obtained, and the Zung Self-rating Depression Scale was used to assess the prevalence and severity of depression in the caregivers. Results: There were 352 study participants which comprised 176 caregivers of children infected with HIV, who served as cases and 176 caregivers of HIV-negative children, who served as controls. One hundred and fifty-five (88.1%) of the cases were the biologic caregivers, whereas the biologic caregivers comprised of 133 (75.6%) for the controls. Furthermore, 43 (24.4%) and 133 (75.6%) of the cases were males and females, respectively, whereas 47 (26.7%) and 129 (73.3%) of the controls were, respectively, males and females. The prevalence of depression among the cases and controls was 43.2% and 6.8%, respectively (P

Implementation of Isoniazid Preventive Therapy Among HIV-Infected Children at Health Facilities in Nairobi County, Kenya: A Cross-Sectional Study

Background: HIV is the strongest risk factor for developing tuberculosis (TB) among people with latent or new Mycobacterium tuberculosis infection. Isoniazid preventive therapy (IPT) reduces the risk of active TB among people living with HIV by up to 62%. Despite evidence that IPT is safe and efficacious, its provision remains low globally. The current study aimed at documenting IPT uptake, adherence, and completion rates, as well as the correlates of IPT uptake among HIV-infected children in Kenya. The study also assessed the knowledge, attitude, and practices of health-care workers (HCWs) with regard to IPT. Methods: A health facility-based cross-sectional study was conducted. Data were collected from caregivers of HIV-infected children as well as HCWs using an interviewer-administered questionnaire. Logistic regression was used to determine the factors associated with IPT uptake. Results: The study enrolled 111 child-caregiver dyads. Most of the caregivers were female (n=75, 77.3%) and HIV-positive (n=82, 85.4%). The majority of children were male (n=65, 58.6%) and on ART (n=106, 95.5%). Overall, 59 children were on IPT (uptake of 53.2%, 95% confidence interval [CI], 43.9% to 62.4%). Out of the 25 children who had been on IPT for more than 6 months, 22 (88.0%) successfully completed the 6-month course of treatment. Further, 27 of the 34 children (78.4%) who were on IPT at the time of the study demonstrated satisfactory adherence to the therapy (no doses missed). The caregivers’ attributes that were associated with IPT uptake included having a secondary school education (adjusted odds ratio [aOR] 0.13; 95% CI, 0.03 to 0.67) and having been on IPT (aOR 27.50; 95% CI, 5.39 to 140.28). The characteristics of children that were significantly associated with IPT uptake were higher median baseline CD4 count (P=.007) and higher median current CD4 count (P=.024). Conclusion: The study demonstrated suboptimal IPT uptake but favourable adherence and treatment completion rates. There was almost universal awareness of IPT within the study sample. Furthermore, the majority of the HCWs had a favourable attitude towards IPT. However, the attendant IPT practices were inadequate, with majority of HCWs reporting that they had never initiated IPT, prescribed IPT within the last 12 months, or renewed an isoniazid prescription.

Determinants of psychosocial disorders among caregivers of HIV-infected children in Enugu, Southeast Nigeria

Background: Human immunodeficiency virus (HIV) infection is a global pandemic. Nigeria has the highest burden of pediatric HIV worldwide. HIV-infected children and their caregivers are predisposed to significant psychosocial disorder. This disorder may be provoked by some risk factors. Aim: To determine the factors responsible for psychosocial disorders among the caregivers of HIV-infected children in Enugu, Southeast Nigeria. Materials and Methods: This was a hospital-based comparative study. Participants who met the inclusion criteria were enrolled consecutively. The HIV status and other sociodemographic variables of the caregivers were obtained. General Health Questionnaire (28-item version) was used to assess their psychosocial status. Thereafter, the association between psychosocial disorders and their sociodemographic variables was ascertained. Results: A total of 154 caregivers of HIV-infected children (subjects) and 154 caregivers of HIV-negative children (controls) were enrolled in this study. The prevalence of psychosocial disorders among the subjects was 39% compared to that of 2.6% among the controls. The determinants of psychosocial disorders among these subjects were the child’s age group of 2–4 years (P < 0.001, odds ratio [OR] = 3.60), caregiver’s gender (P < 0.001, OR = 13.48), lower socioeconomic class (P < 0.001, OR = 37.14), divorced caregiver (P = 0.03, OR = 10.33), death of a spouse (P < 0.001, OR = 8.84), additional HIV-infected family member (P = 0.015, OR = 2.56), and unsupportive spouse (P = 0.027, OR = 2.113). Conclusion: The determinants of psychosocial disorders among the caregivers of HIV-infected children were the age of the HIV-infected child, female caregivers, lower socioeconomic class, marital status, additional HIV-infected family member, and lack of spouse support.

Implementation of Isoniazid Preventive Therapy Among HIV-Infected Children at Health Facilities in Nairobi County, Kenya: A Cross-Sectional Study.

Background:HIV is the strongest risk factor for developing tuberculosis (TB) among people with latent or new Mycobacterium tuberculosis infection. Isoniazid preventive therapy (IPT) reduces the risk of active TB among people living with HIV by up to 62%. Despite evidence that IPT is safe and efficacious, its provision remains low globally. The current study aimed at documenting IPT uptake, adherence, and completion rates, as well as the correlates of IPT uptake among HIV-infected children in Kenya. The study also assessed the knowledge, attitude, and practices of health-care workers (HCWs) with regard to IPT.Methods:A health facility-based cross-sectional study was conducted. Data were collected from caregivers of HIV-infected children as well as HCWs using an interviewer-administered questionnaire. Logistic regression was used to determine the factors associated with IPT uptake.Results:The study enrolled 111 child-caregiver dyads. Most of the caregivers were female (n=75, 77.3%) and HIV-positive (n=82, 85.4%). The majority of children were male (n=65, 58.6%) and on ART (n=106, 95.5%). Overall, 59 children were on IPT (uptake of 53.2%, 95% confidence interval [CI], 43.9% to 62.4%). Out of the 25 children who had been on IPT for more than 6 months, 22 (88.0%) successfully completed the 6-month course of treatment. Further, 27 of the 34 children (78.4%) who were on IPT at the time of the study demonstrated satisfactory adherence to the therapy (no doses missed). The caregivers’ attributes that were associated with IPT uptake included having a secondary school education (adjusted odds ratio [aOR] 0.13; 95% CI, 0.03 to 0.67) and having been on IPT (aOR 27.50; 95% CI, 5.39 to 140.28). The characteristics of children that were significantly associated with IPT uptake were higher median baseline CD4 count (P=.007) and higher median current CD4 count (P=.024).Conclusion:The study demonstrated suboptimal IPT uptake but favourable adherence and treatment completion rates. There was almost universal awareness of IPT within the study sample. Furthermore, the majority of the HCWs had a favourable attitude towards IPT. However, the attendant IPT practices were inadequate, with majority of HCWs reporting that they had never initiated IPT, prescribed IPT within the last 12 months, or renewed an isoniazid prescription.

Prevalence and correlates of depression among caregivers of children living with HIV in Ghana: findings from the Sankofa pediatric disclosure study

ABSTRACTPrior 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.Trial registration: Uniform Trial Number identifier: NCT01701635.

Prevalence and Pattern of Psychosocial Disorders among Caregivers of HIV-infected Children in Enugu, South-Eastern Nigeria.

Nigeria has the highest burden of paediatric HIV in the world. HIV infection may result in significant life stressors, on both the infected children and their caregivers. This included a hospital-based cross-sectional and comparative study. Subjects and controls who met the inclusion criteria were enrolled consecutively. Their socio-demographic variables were obtained and GHQ-28 was used to assess their psychosocial status. A total of 154 caregivers of HIV-infected children (subjects) and 154 caregivers of HIV-negative children (controls) were enrolled into this study. In total, 42 (27.3%) and 112 (72.7%) of the subjects were males and females, respectively, compared with 37 (24.0%) and 117 (76.0%) of the controls, respectively. The prevalence of psychosocial disorders among the subjects and controls was 39 and 2.6%, respectively (p < 0.001; odds ratio: 23.936). The patterns of psychosocial disorders among the caregivers of HIV-infected children were somatic symptoms (85%), anxiety/insomnia (80%), social dysfunction (63.3%) and severe depression (48.3%). There is a high prevalence of psychosocial disorders among caregivers of HIV-infected children.

Psychological impact on caregivers of HIV-infected children in Udupi district, Karnataka

ABSTRACTCaregivers of children living with HIV/AIDS (CLWHA) face unique challenges due to disease-related stigma and discrimination, isolation from society, financial constraints, grief and mortality of loved one. A descriptive cross-sectional study was conducted at Udupi ART centre to assess the caregiver burden, psychological distress and their associated factors among the caregivers of CLWHA in Udupi District. The convenience sampling technique was used to collect the data from 171 caregivers and analysed with the help of SPSS version 15.0. Majority of caregivers were female (64.9%) with mean age of 38.1 ± 9.6 years. About 64.3% caregivers were HIV-positive and 63.2% were biological parents of CLWHA. Mild-to-severe caregiver burden on Zarit Burden Inventory (ZBI) was reported among 84.8% of caregivers, and mild-to-severe psychological distress on General Health Questionnaire (GHQ-12) was reported among 49.7% caregivers. Relationship with child was found to be a significant predictor of caregiver burden as compared to other relatives/foster (P < 0.001). Relationship with child (P 0.004), Alcohol use (P 0.008) and Schooling of children (P 0.049) were reported as significant predictors of psychological distress. Study concludes that caregiver burden and psychological distress were high among caregivers of CLWHA. Psychological problems of caregivers need to be addressed and integrated along with the clinical care of HIV-infected children at ART centres.

Undernutrition in ART-naïve Nigerian children.

Dear editor This letter is a response to the recent paper by Anigilaje and Olutola entitled “Prevalence and risk factors of undernutrition among antiretroviral-therapy-naive subjects aged under 5 years old in Makurdi, Nigeria: a retrospective study”, published in the International Journal of General Medicine.1 The relevance and importance of any sound research on undernutrition in HIV-infected children is high, and we strongly support publication of papers on this topic. However, while we appreciate the health awareness that could be generated by this paper, we have some concerns regarding this study. The title of the article and the labeling of its tables indicate that the study population included children aged younger than 5 years, but it is also stated that the selection criteria included HIV-infected children ≤15 years. Further, it mentioned in Table 1 that the total sample was 182, and only children with undernutrition were included. In the methods section, it is stated that upon enrollment into care, all parents or caregivers of HIV-infected children were required to provide written informed consent for use of their data for research purposes. Informed consent is voluntary for any research, and should not affect the care provided. It is not clear in the present study if the informed consent was voluntary. The results report the prevalence of undernutrition to be 12.1% (22/182), 33.5% (61/182), and 54.4% (99/182) for underweight, wasting, and stunting, respectively. What is actually being reported here is the proportions of underweight, wasting, and stunting among undernourished children, but to estimate the prevalence of undernutrition, the study sample should have included all HIV-infected children younger than 5 years irrespective of their nutritional status. In order to identify risk factors for undernutrition, comparisons should have been made between each of the three undernourished groups and children without undernutrition, and not between the undernourished groups themselves. The table captions appear to be mislabeled. Table 2 denotes the prevalence and risk factors for wasting and not for underweight (sample size is 61, not 22) and Table 3 shows the prevalence and risk factors for underweight and not for wasting (sample size is 22, not 61). This mislabeling has resulted in erroneous interpretation of the results and hence the discussion of the findings. In the tables, the crude odds ratios for some variables show a significant P-value, but the adjusted odds ratio and confidence interval for two variables are not included (see mode of HIV transmission and caregivers’ HIV status in Table 2 and caregivers’ HIV status in Tables 3 and 4). It is also observed that the odds ratio and confidence interval for some variables are missing, but the crude odds ratios have been mentioned with a P-value as 0.000 (modes of infant feeding in Tables 2–4). Some variables are significant risk factors based on the crude odds ratio, but are significant protective factors after multivariate analysis (caregiver on highly active antiretroviral therapy, marital status of caregiver, tuberculosis, and esophageal candidiasis in Table 2, and age and CD4 count in Table 3). The justification for this major difference is not stated in the article. The authors have included all variables achieving a significance of 0.1 in the multivariate analysis. It is advisable to include only those significant variables that could be confounding to the variable of interest. When interpreting the results, the authors state that “the trend was such that female subjects were 0.292 less likely to be underweight”. This result could be better reported as females being 71% less likely to be underweight than males. The authors attribute the lack of a significant association in multivariate analysis between “wasting” (corrected here to “underweight”) and the tested variables to the small sample size. It would be appropriate to mention if the sample size was estimated before the start of the study and whether the available size was adequate. The authors state that the lack of data on HIV-negative children in a similar setting limited their interpretation of the results. This is not a study limitation, because the authors did not intend to include HIV-negative children; however, this could be a recommendation for future research. Considering the public health importance of this issue, studies with more methodological rigor are recommended in order to draw concrete conclusions for clinical practice.

The changing pattern of adherence to antiretroviral therapy assessed at two time points, 12 months apart, in a cohort of HIV-infected children

Objective: In a previous multicentre study including 129 HIV-infected children, non-adherence to antiretroviral therapy was detected in 16% of patients and was mainly related to psychosocial rather than clinical or demographic features. The aim of this study was to explore the evolving pattern of adherence and its determinants in the same population of children. Methods: An observational, cross-sectional multicentre study was done through a structured interview to the caregivers of HIV-infected children. Adherence was quantitatively evaluated through a 4-day recall adherence instrument. Results: One hundred and twelve children were included. Nineteen (17%) omitted more than 5% of doses in the preceding 4 days and were considered non-adherent. Of these, 10 had been found non-adherent and nine adherent in the previous study. In parallel, nine of the originally non-adherent children had become adherent. Adherence rates were higher in children receiving therapy from foster parents than in children receiving therapy from biological parents. Dose number significantly correlated with adherence. Conclusions: Adherence to antiretroviral therapy is a dynamic phenomenon that changes with time. The evolving pattern shows a fairly constant distribution of adherence because a similar number of patients gain and lose adherence. Psychosocial rather than clinical features are major determinants of adherence.

Effects of Antiretroviral Drug Recall on Perception of Therapy Benefits and on Adherence to Antiretroviral Treatment in HIV-Infected Children

In June 2007, the European Medicines Agency announced the recall by Roche of nelfinavir from European Union markets because of contamination of tablets with ethyl mesylate. Based on this event, we investigated the effect of switching therapy because of nelfinavir recall or for other reasons on the perception of therapy benefits and adherence to treatment in HIV-infected children and their caregivers. Thirty-eight children (mean age 12.1+/-6.7 years) were enrolled. A 35-item questionnaire was administered to the caregivers of enrolled children. Adherence was evaluated through a 4-day recall adherence instrument. Enrolled children were divided into 3 groups: patients who were shifted because of nelfinavir recall (group A, 8 patients); patients who were shifted for other reasons (group B, 12 patients); patients who were not shifted in the last 6 months (group C, 18 patients). All caregivers considered antiretroviral therapy necessary and effective for their children. However, drug shifting generated anxiety in most of them, irrespective of the reason for shifting. At baseline, 74% patients adhered to therapy. Adherence rate was related to the type of caregivers being higher in children cared for by foster parents than in children cared for by biological parents or second-degree relatives. Adherence rates did not change significantly in groups A and B after switching. Drug-switching raises concern in caregivers of HIV-infected children and induces a negative feeling irrespective of the reason for switching. However, switching, including the shift due to nelfinavir recall, did not affect adherence rates.

The ART of HIV therapies: dopaminergic deficits and future treatments for HIV pediatric encephalopathy

The concerted efforts of clinicians, scientists and caregivers of HIV-infected children have led to tremendous advances in our understanding of pediatric HIV/AIDS. Antiretroviral therapy (ART; formerly known as highly active antiretroviral therapy [HAART]) has significantly extended the longevity of HIV-infected children, but there are limitations to improvements in quality of life that may persist despite therapy. ART has remarkably reduced the incidence of neurologic deficits for the majority of infected children, but some patients do not experience these benefits and children living in poorer nations, who may not have access to antiretrovirals, are particularly at risk for developing neurologic deficits. This article reviews the neurologic symptoms of pediatric HIV infection that manifest as dopaminergic disruptions and explores potential future adjuvant therapies for HIV-related neurologic disorders in children.

Parenting stress of caregivers of young children who are HIV Positive

Paediatric HIV remains a major challenge in Sub-Saharan Africa. Paediatric HIV is a multi-generational disorder with far-reaching implications for the whole family. Parenting stress in caregivers of HIV infected children has been studied in developed countries but never in South Africa. The aim of this study was to determine the extent of parenting stress in caregivers of children infected with HIV in South Africa. Further objectives were to monitor the levels of stress over one year after caregivers started attending a paediatric HIV clinic and to ascertain what factors were predictive of a decrease in parenting stress over that time. One hundred and twenty two caregiver and children dyads were recruited into this study. Caregivers completed the Parenting Stress Index/ Short form at baseline and after six and 12 months. Demographic information was collected and the children's heights, weights and CD4 counts were recorded at each visit. The families that participated in this study came from very poor socio-economic backgrounds. Eighty five percent of the children were still being cared for by their biological mothers. The parenting stress levels of the caregivers in this study were extremely high at baseline. Although the parenting stress levels did come down significantly over the study period (p< 0.001) they remained high and warrant further investigation and management. A better level of education, better housing facilities and fewer adults living in the household were the three most important factors predicting a decrease in parenting stress over a one year period. Parenting stress of caregivers of young children infected with HIV is extremely high and warrants further investigation and long term management.

HIV treatment-related knowledge and self-efficacy among caregivers of HIV-infected children

Objective Improvements in treatment-related knowledge and self-efficacy may improve clinical outcomes in HIV-infected populations. We examined whether caregivers’ knowledge and self-efficacy was associated with better clinical outcomes and anti-retroviral therapy (ART) adherence among HIV-infected children. Methods Caregivers of 77 perinatally HIV-infected children were administered a semi-structured interview which included scales of HIV treatment-related knowledge, adherence self-efficacy and caregiver reports of child medication adherence. Results While caregivers correctly answered 74% of the knowledge questions, specific misconceptions were noted. Caregivers rated themselves as having high adherence self-efficacy, but were least confident in their ability to adhere to ART if it caused side effects or might result in social disclosure. Higher caregiver treatment-related knowledge and self-efficacy were associated with better clinical outcomes, as measured by viral load and CD4+ count, but not with caregiver reports of ART adherence. Conclusion/discussion While additional factors may be important determinants of adherence to ART in this population, improving the HIV treatment-related knowledge and self-efficacy of caregivers may help to improve the clinical outcomes of HIV-infected children. Practice implications Care providers should address both misconceptions that might serve to undermine adherence as well as factors that limit patients’ self-efficacy in adhering to treatment, prior to the initiation of ART and throughout the course of treatment.

Adherence to antiretroviral therapy and its determinants in children with human immunodeficiency virus infection: a multicentre, national study.

To investigate rates and determinants of adherence to antiretroviral therapy in Italian children infected with the human immunodeficiency virus (HIV). An observational, cross-sectional multicentre study was performed through a structured interview with the caregivers of HIV-infected children. The interview included quantitative information on adherence in the 4 d before interview. Sociodemographic, clinical and psychosocial characteristics of children were recorded. 129 children (median age 96 mo) were enrolled, of whom 94 were on highly active antiretroviral therapy (HAART). Twenty-one (16%) omitted more than 5% of total doses in 4 d and were considered non-adherent. However, only 11% of caregivers reported that therapy had been administered at the correct times. No significant difference was found between age and the stage of HIV infection. Children aware of their HIV status were less adherent. Individual drugs showed a broad adherence pattern and children who received HAART were more adherent. Children receiving therapy from foster parents were more adherent than those receiving drugs from biological parents or relatives. Adherence is a major problem in children. Psychological rather than clinical or sociodemographic features and types of drug are major determinants of adherence.

Adherence to Combination Antiretroviral Treatment in Children

Purpose: To assess the level of nonadherence to combination antiretroviral therapy of HIV-infected children and to identify the main problems faced by caregivers when giving medicines to children. Method: A questionnaire was administered to the caregivers of HIV-infected children who were under combination antiretroviral treatment and were followed at our institution. Results: We evaluated 44 children (mean age, 9.4 years); 13 were treated with a two-drug regimen, 30 with a three-drug regimen, and 1 with a four-drug regimen. Each child received a mean of 8.1 pills and/or syrup doses. In 54.5% of treatments, food restrictions were necessary. The mother was the main person giving medicines to the child (56.8%). A complete written schedule of the child’s treatment was present in 50% of families. About 20.5% and 31.8% of children had missed at least one dose of antiretroviral drugs in the last 3 days before assessment and since last visit (1-2 months earlier), respectively. Main problems reported by caregivers were: (a) too many medicines/ pills (34%); (b) difficulty in swallowing pills (29.5%); (c) taking medicines at school or out of home (27.3%); (d) child resisting/refusing therapy/spitting out (25%); and (e) food interactions (22.7%). Conclusion: The observed high level of nonadherence was similar to what was reported by other pediatric studies. Specific interventions aimed at improving compliance in pediatric patients were identified: improvement of anti-HIV drug formulations, better counselling for children and their families, and tailoring of antiretroviral treatment. However, caution is necessary in generalizing our results due to the small sample size and to the heterogeneity of the cohort.

Psychosocial needs expressed by the natural caregivers of HIV infected children

The presence in a family of a young child with AIDS, with the exception of a small number of transfusion-infected children, implies almost necessarily the presence of an infected adult, usually the mother. The problem in such a situation is not that of a child with a fatal illness but that of an entire family. Our study included a sample of thirty natural caregivers. These were mostly mothers but others responsible for the care of a seropositive child, such as fathers, aunts and grandmothers, were also included. The aim of the project was to describe their perceptions of their own psycho-social needs. Our results reveal that these caregivers are economically disadvantaged. They need help in coping with stress and their life situation. Their need to confide in others is frequently not met. However, the need to learn how to protect themselves and other members of the family against both HIV and other infections and to know the course and the treatments associated with this disease are seen by them, both as being very important and as being well met, particularly by the health professionals who care for them.