Allocation of Family Responsibility for Illness Management in Pediatric HIV

Carman and Ann Adams Department of Pediatrics, Wayne State University, USA.
Journal of Pediatric Psychology (Impact Factor: 2.91). 07/2008; 34(2):187-94. DOI: 10.1093/jpepsy/jsn065
Source: PubMed


The purpose of the study is to describe allocation of responsibility for illness management in families of children and adolescents perinatally infected with HIV.
A total of 123 youth (ages 8-18) and caregivers completed family responsibility and medication adherence questionnaires as part of a substudy of Pediatric AIDS Clinical Trials Group protocol 219c.
Approximately one-fourth of the youth reported being fully responsible for taking medications. A smaller percentage of caregivers reported full youth responsibility. Older youth and caregivers of older youth reported higher degree of youth responsibility for medication-related tasks, though age was unrelated to adherence. Caregiver report of greater responsibility for medications was associated with better adherence.
Caregivers are likely to transition responsibility for HIV care to older youth but this transition was not always successful as evidenced by poor medication adherence. Interventions supporting successful transition may improve adherence and subsequently health outcomes in pediatric HIV.

6 Reads
  • Source
    • "Additional parameters were obtained, such as CDC stage [27], opportunistic and other infections, medication and dosing information, and adverse events attributable to ART. A previously published standardized adherence questionnaire (PACTG P1042S) was used at the time of cross-sectional analysis to systematically measure adherence based on information provided by parents and caregivers [28,29]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Background The impact of extended use of ART in developing countries has been enormous. A thorough understanding of all factors contributing to the success of antiretroviral therapy is required. The current study aims to investigate the value of cross-sectional drug resistance monitoring using DNA and RNA oligonucleotide ligation assays (OLA) in treatment cohorts in low-resource settings. The study was conducted in the first cohort of children gaining access to structured ART in Peru. Methods Between 2002–5, 46 eligible children started the standard regimen of AZT, 3TC and NFV Patients had a median age of 5.6 years (range: 0.7-14y), a median viral load of 1.7·105 RNA/ml (range: 2.1·103 – 1.2·106), and a median CD4-count of 232 cells/μL (range: 1–1591). Of these, 20 patients were classified as CDC clinical category C and 31/46 as CDC immune category 3. At the time of cross-sectional analysis in 2005, adherence questionnaires were administered. DNA OLAs and RNA OLAs were performed from frozen PBMC and plasma, RNA genotyping from dried blood spots. Results During the first year of ART, 44% of children experienced virologic failure, with an additional 9% failing by the end of the second year. Virologic failure was significantly associated with the number of resistance mutations detected by DNA-OLA (p < 0.001) during cross-sectional analysis, but also with low immunologic CDC-scores at baseline (p < 0.001). Children who had been exposed to unsupervised short-term antiretrovirals before starting structured ART showed significantly higher numbers of resistance mutations by DNA-OLA (p = 0.01). Detection of M184V (3TC resistance) by RNA-OLA and DNA-OLA demonstrated a sensitivity of 0.93 and 0.86 and specificity of 0.67 and 0.7, respectively, for the identification of virologic failure. The RT mutations N88D and L90M (NFV resistance) detected by DNA-OLA correlated with virologic failure, whereas mutations at RT position 215 (AZT resistance) were not associated with virologic failure. Conclusions Advanced immunosuppression at baseline and previous exposures to unsupervised brief cycles of ART significantly impaired treatment outcomes at a time when structured ART was finally introduced in his cohort. Brief maternal exposures to with AZT +/− NVP for the prevention of mother-to-child transmission did not affect treatment outcomes in this group of children. DNA-OLA from frozen PBMC provided a highly specific tool to detect archived drug resistance. RNA consensus genotyping from dried blood spots and RNA-OLA from plasma consistently detected drug resistance mutations, but merely in association with virologic failure.
    BMC Infectious Diseases 01/2013; 13(1):1. DOI:10.1186/1471-2334-13-1 · 2.61 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: To present the findings from a qualitative study that explored living with pediatric HIV from the children's perspectives. The researcher conducted face-to-face interviews with seven HIV-positive children in this nested, phenomenological study. The children's parents were enrolled at the same time in a longitudinal qualitative study, which focused on raising a child with HIV. The children, ages 9 to 13, were interviewed once in the context of their homes. The researcher identified themes based on interview transcriptions. Four major themes emerged: a positive self-perception; varying levels of understanding about HIV; a lack of concern and/or memory about the disclosure process; and an awareness to keep the diagnosis private. Nurses who counsel children living with HIV should be aware that the self-perception of these children varies and may not be focused on their chronic illness. The interpretation of the disclosure process and the understanding of the diagnosis itself may be impacted by memory and developmental changes over time.
    MCN. The American journal of maternal child nursing 11/2011; 36(6):368-72. DOI:10.1097/NMC.0b013e31822e59f9 · 0.90 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Objective: The introduction of HAART has led to increased life expectancy among youth with HIV, however, it poses challenges including complex drug regimens that require strict adherence by patients. Treatment adherence by youth with HIV is generally considered suboptimal, although adherence reports vary by the method of assessment used. Given the prevailing problem of treatment adherence in this population, research has focused on identifying factors contributing to nonadherence. Research on adults with HIV and children with other chronic illnesses suggests that posttraumatic stress disorder (PTSD), posttraumatic stress symptoms (PTSS), and health beliefs may be important factors relating to nonadherence. This study investigated the prevalence of PTSS in a sample of adolescents and young adults perinatally and behaviorally-infected with HIV. The relationship of PTSS with treatment adherence and the role of internal health locus of control (IHLC) were explored. Methods: Twenty-eight participants (M age = 17.14, SD = 3.05; range = 12-22) recruited from a pediatric immunology clinic completed measures of life events, posttraumatic stress symptoms, and health locus of control. Measures of treatment adherence used included: viral load count, CD4 count, and provider ratings of adherence. Results: Findings revealed relatively good adherence levels and low disease severity among the sample. Eighty-two percent of participants reported experiencing a least one HIV-related traumatic event and 75% of participants reported experiencing at least one non-HIV related traumatic event. Posttraumatic stress symptom severity scores fell in the moderate range of severity for both HIV-related and general traumas. No differences were found in trauma scores based on mode of transmission or developmental level (adolescents vs. young adults). Provider ratings of adherence and viral load were correlated with PTSS. IHLC did not demonstrate a significant indirect effect on the relationship between treatment adherence and PTSS. Discussion: Difficulties in recruitment for this study point to the many stressors facing youth with HIV and the barriers to successful recruitment of ethnic minority participants in research. Findings highlight the need to address psychosocial problems among youth with HIV, in particular posttraumatic stress, in order to improve treatment adherence and health outcomes. Further research is needed to clarify the role of health beliefs as they relate to health-promoting behaviors in this population. Additionally, future research is needed to establish standardized, valid, reliable, and cost-effective measures of adherence. Barriers to recruitment and retention of ethnic minority participants must also be addressed. Findings are limited by small sample size, low power, and restriction of range in data.
Show more


6 Reads
Available from