Family Experiences with Pediatric Antiretroviral Therapy: Responsibilities, Barriers, and Strategies for Remembering Medications

Abstract

This study examines the relationship between adherence to pediatric HIV regimens and three family experience factors: (1) regimen responsibility; (2) barriers to adherence; and (3) strategies for remembering to give medications. Caregivers of 127 children ages 2-15 years in the PACTS-HOPE multisite study were interviewed. Seventy-six percent of caregivers reported that their children were adherent (taking Ն 90% of prescribed doses within the prior 6 months). Most caregivers reported taking primary responsibility for medication-related activities (72%-95% across activities); caregivers with primary responsibility for calling to obtain refills (95%) were more likely to have adherent children. More than half of caregivers reported experiencing one or more adherence barriers (59%). Caregivers who reported more barriers were also more likely to report having non-adherent children. Individual barriers associated with nonadherence included forgetting, changes in routine, being too busy, and child refusal. Most reported using one or more memory strategies (86%). Strategy use was not associated with adherence. Using more strategies was associated with a greater likelihood of reporting that forgetting was a barrier. For some families with adherence-related organizational or motivational difficulties, using numerous memory strategies may be insufficient for mastering adherence. More intensive interventions, such as home-based nurse-administered dosing, may be necessary. 637

Antidepressant and Antipsychotic Use and Adherence Among Medicaid Youths: Differences by Race

“…Marhefka et al (2008) found that caregivers of children on anti-retroviral medications who reported more barriers to medication taking (e.g. forgetfulness, child refuses medications, too busy, change in routine) reported that their children were less adherent to their medication regimens.…”

Adherence to the Treatment of Children Living with HIV: A Conceptual Analysis

“…Por várias razões, ao se atribuir a responsabilidade de administração da terapia antirretroviral às próprias crianças, sem a supervisão dos pais ou responsáveis, torna-se praticamente improvável que elas completem o esquema com sucesso (23,46). Assim, estimular o envolvimento do cuidador no tratamento, tentando compreender o que o impede de realizar a tarefa de administração dos medicamentos à criança e o que o ajuda a ter sucesso, pode ser crucial para o desenvolvimento de intervenções passíveis de promover uma adesão eficaz (46).…”

“…Assim, estimular o envolvimento do cuidador no tratamento, tentando compreender o que o impede de realizar a tarefa de administração dos medicamentos à criança e o que o ajuda a ter sucesso, pode ser crucial para o desenvolvimento de intervenções passíveis de promover uma adesão eficaz (46).…”

Medication beliefs and perceived barriers in adolescent renal transplant patients and their parents

“…Children with chronic illnesses such as asthma, human immunodeficiency virus, inflammatory bowel disease, and organ transplantation, as well as their parents, have reported various barriers to medication adherence [12][13][14][15][16][17][18][19]. The most common barriers identified across pediatric chronic illnesses include cognitive factors (forgetting, difficulty with the complex regimen, time management) and life-style adaptation (being away from home, interference with an activity, changes in routine) [12][13][14][15][16][17][18][19].…”

“…The most common barriers identified across pediatric chronic illnesses include cognitive factors (forgetting, difficulty with the complex regimen, time management) and life-style adaptation (being away from home, interference with an activity, changes in routine) [12][13][14][15][16][17][18][19]. Additionally, psychological factors (lack of self-efficacy, denial, distrust, behavioral defiance), social factors (lack of social support, peer pressures), and family issues (conflict between parents and children) also play a major role in poor adherence [13][14][15]. Although barriers related to the disease and the prescribed medications (difficulty swallowing pills, disliking the taste) have been studied, they are not as commonly cited as barriers for nonadherence [13,15].…”