Introducción En años recientes, varias iniciativas globales para combatir la epidemia de sida han producido avances prometedores mediante el acceso a programas efectivos de tratamiento. Sin embargo, la falta de adhesión a la terapia antirretroviral es un problema en los pacientes pediátricos.

Objetivo Explorar la adhesión a la terapia antirretroviral de niños y adolescentes con VIH/SIDA en Cuba y examinar su relación con factores psicosociales, individuales y asociados al tratamiento.

Métodos Se efectuó un estudio cualitativo con 21 cuidadores de niños y adolescentes con VIH/SIDA. Mediante la revisión de documentos, se obtuvo información demográfica y del régimen de tratamiento. Se realizaron entrevistas minuciosas para evaluar la adhesión y examinar su relación con factores psicosociales, individuales y asociados al tratamiento. Las entrevistas se transcribieron y la información se agrupó según la categoría de los factores. La adhesión se analizó en relación con estos tres grupos de factores.

Resultados Los cuidadores entrevistados reportaron adhesión adecuada en 17 de los 21 niños. La falta de adhesión estuvo relacionada principalmente con factores psicosociales tales como responsabilidad adicional asumida por el cuidador mientras enfrentaba su propia enfermedad, la presencia de síntomas psicológicos no tratados en el cuidador, dificultades percibidas en el apoyo familiar, la edad del niño y la asignación de las responsabilidades en el tratamiento del niño sin tomar en cuenta su madurez psicológica.

Conclusiones El estudio reveló un alto nivel de adhesión a la terapia antirretroviral. Confirmó la importancia fundamental del cuidador y del apoyo familiar para el éxito terapéutico en niños y adolescentes que padecen VIH/SIDA. Estos resultados, así como los factores identificados en casos de no adhesión, ofrecen un marco para la evaluación y para intervenciones especializadas para optimizar la adhesión pediátrica a la terapia antirretroviral.

Palabras clave VIH, sida, terapia antirretroviral, adhesión del paciente, conformidad del paciente, adhesión a tratamiento, conformidad con tratamiento, no adhesión a tratamiento, Cuba

INTRODUCTION In recent years, global initiatives to address the AIDS epidemic have produced promising advances through access to effective treatment programs. However, lack of adherence to antiretroviral therapy is a problem for pediatric patients.

OBJECTIVE Explore antiretroviral therapy adherence in children and adolescents living with HIV/AIDS in Cuba and examine its relationship with psychosocial, individual and treatment factors.

METHODS A qualitative study was carried out of 21 caregivers of children and adolescents with HIV/AIDS. Demographics and information on treatment regimen were collected by chart review. In-depth interviews were conducted to assess adherence and examine its relationship with psychosocial, individual and treatment factors. Interviews were transcribed and the information was grouped by factor category. Adherence was analyzed in relation to these three sets of factors.

RESULTS Caregivers interviewed reported adequate adherence in 17 of the 21 children. Lack of adherence was linked primarily to psychosocial factors such as additional responsibility taken on by the caregiver while grappling with his or her own illness, the presence of untreated psychological symptoms in the caregiver, perceived difficulties with family support, the child’s age, and assigning treatment responsibilities to the child without taking into account his/her psychological maturity.

CONCLUSIONS The study revealed a high level of antiretroviral therapy adherence. It reconfirmed the fundamental importance of the caregiver and family support for therapeutic success in children and adolescents living with HIV/AIDS. These results, as well as the factors identified in cases of nonadherence, can contribute to a framework for assessment and specialized interventions to optimize pediatric antiretroviral adherence.

KEYWORDS HIV, AIDS, antiretroviral therapy, patient adherence, patient compliance, patient nonadherence, treatment adherence, treatment compliance, treatment nonadherence, Cuba

INTRODUCTION An HIV diagnosis, like that of any another chronic illness, alters family dynamics. Although the whole family is affected, usually only one member is the primary caregiver of the sick person. Children and adolescents with HIV/AIDS need care according to their physical, psychological and social needs, requiring responsible caregivers who maintain adequate physical and mental health.

OBJECTIVE To describe general mental health characteristics of primary caregivers of Cuban children and adolescents from across the country diagnosed with HIV/AIDS at the Pedro Kourí Tropical Medicine Institute.

METHODS A descriptive study was carried out from November 2009 through March 2010. Twenty-six caregivers met inclusion criteria and 13 participated. A psychological assessment was made of each caregiver’s mental health, including both externally evaluated and self reported factors associated with physical or psychological problems. Clinical interview and observation, psychiatric examination and various psychological tests were used. A simple descriptive analysis of caregiver characteristics, qualitative information and test results was made.

RESULTS Most caregivers were women, infected with HIV/AIDS themselves, unemployed and without a partner. They presented symptoms of anxiety but no clinical psychiatric diagnoses. The study group reported dissatisfaction with family functioning and partner relationships, as well as problems related to HIV and poor employment prospects.

CONCLUSIONS Caregivers studied described complex intra- and interpersonal life dynamics influenced by their HIV infection. Their mental health status, evaluated through a combination of objective and subjective factors reveals a complex reality, indicating the need for a more comprehensive and efficient approach to caregivers’ health care, integrating attention to both physical and mental health.

KEYWORDS Mental health, caregivers, family caregivers, HIV/AIDS, Cuba