Article

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

ABSTRACT 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.

2 Followers
 · 
85 Views
  • 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 abstract] [Hide abstract]
    ABSTRACT: We investigated the incidence and impact of postoperative complications in children who underwent total thyroidectomy (TTx). The records of all pediatric patients undergoing TTx (2001-2011) at our institution were retrospectively reviewed for the occurrence of biochemical hypothyroidism (thyroid-stimulating hormone >10 mIU/mL), laboratory assessments, and medication nonadherence. The 74 patients (median age, 12.5 years) had thyroid cancer (differentiated, n = 39; medullary, n = 16) or benign pathology (n = 19; 16 with multiple endocrine neoplasia type 2A). The median postoperative follow-up was 3.2 years; 46 patients (62%) had ≥1 year follow-up. Forty-one percent had ≥1 period of medication nonadherence; this was not associated with age at TTx (P = .30). Non-treatment-related hypothyroidism occurred in 33% of patients during postoperative year (POY) 1. The number of POY1 laboratory assessments among the 30% of patients with parathyroid dysfunction was more than twice that among patients with normal parathyroid function (median assessments per year 8 vs 3; P < .0001). Forty-four percent of patients/families reported behavioral or physiologic changes; 40% were concomitant with abnormal thyroid function. More than 40% of pediatric patients were unable to fully adhere to postoperative medication regimens, and non-treatment-related hypothyroidism was common. Postoperative hypoparathyroidism doubled the number of laboratory assessments obtained. These data may help families better prepare for TTx sequelae.
    Surgery 12/2012; 152(6):1165-71. DOI:10.1016/j.surg.2012.08.056 · 3.11 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Every year, approximately 260,000 children are infected with HIV in low- and middle-income countries. The timely initiation and high level of maintenance of antiretroviral therapy (ART) are crucial to reducing the suffering of HIV-positive children. We need to develop a better understanding of the background of children's ART non-adherence because it is not well understood. The purpose of this study is to explore the background related to ART non-adherence, specifically in relation to the orphan status of children in Kigali, Rwanda. We conducted 19 focus group discussions with a total of 121 caregivers of HIV-positive children in Kigali. The primary data for analysis were verbatim transcripts and socio-demographic data. A content analysis was performed for qualitative data analysis and interpretation. The study found several contextual factors that influenced non-adherence: among double orphans, there was psychological distance between the caregivers and children, whereas economic burden was the primary issue among paternal orphans. The factors promoting adherence also were unique to each orphan status, such as the positive attitude about disclosing serostatus to the child by double orphans' caregivers, and feelings of guilt about the child's condition among non-orphaned caregivers. Knowledge of orphan status is essential to elucidate the factors influencing ART adherence among HIV-positive children. In this qualitative study, we identified the orphan-related contextual factors that influenced ART adherence. Understanding the social context is important in dealing with the challenges to ART adherence among HIV-positive children.
    Journal of the International AIDS Society 12/2014; 17(1):19310. DOI:10.7448/IAS.17.1.19310 · 4.21 Impact Factor

Preview

Download
1 Download
Available from