Psychological characteristics of caregivers of pediatric patients with chronic rheumatic disease in relation to treatment adherence

Abstract

BackgroundAdherence to treatment for chronic diseases is lower in children than in adults, less extensively studied in children and is associated with multiple related factors. The aim of this study is to perform a descriptive analysis of psycho-cognitive aspects of primary caregivers of pediatric patients with chronic rheumatic diseases, as well as socioeconomic and clinical factors, family functioning and treatment satisfaction.MethodsPrimary caregivers of 90 patients were included. Pairs (caregiver plus patient) were grouped as presenting good adherence (n = 50) or poor adherence (n = 40) according to the Morisky Adherence Test. Psycho-cognitive aspects were evaluated by Adult Self-Report and Wechsler Adult Intelligence Scale tests. For statistical comparisons, quantitative variables with normal distribution were analyzed by Student’s t test, and those with non-Gaussian distribution with the Mann Whitney test. Categorical variables were analyzed by Chi square test. A multivariate logistic regression analysis was performed to estimate the contribution of the independent variables to adherence.ResultsCompared to caregivers in the good adherence group, caregivers in the poor adherence group were more likely to be classified as clinical on the scales for attention problems and externalizing problems, which include impulsiveness and aggressiveness. They also scored higher on the depressive problem scale. In addition, the average number of children per caregiver and the mean age of caregivers and patients were significantly higher in the poor adherence group, while the proportion of caregivers with higher education was lower. The poor adherence group also included a higher incidence of pediatric patients assuming sole responsibility for managing medications. Economic status, clinical factors, treatment satisfaction, family functioning and caregiver cognitive profile were not related to adherence, except for working memory index.ConclusionOlder patients, patients as the one solely responsible for medication management, and caregivers with externalizing problems, were observed to be the most strongly associated to poor adherence. Interventions aimed at adolescent patients are needed. Also, psychological programs and interventional studies to better determine caregivers’ behavioral/emotional status, and parent-child relationships are recommended.

El autocuidado de los adolescentes que están en diálisis

“…Haynes, 1979 la definió como "la medida en que el comportamiento de una persona coincide con el asesoramiento médico o de salud", siendo ésta la definición más aceptada (34) . Existe una fuerte evidencia de que los adolescentes con diversas condiciones crónicas de salud tienen mayor dificultad para adherirse a su régimen recomendado, por tal motivo la adherencia a los diferentes tratamientos resulta más desafiante en esta etapa de la vida (35,36) .…”

“…[94] sobre la mejor manera de optimizar la adherencia al tratamiento en este grupo de edad (36) . Los ensayos aleatorizados constituyen la principal metodología utilizada para este fin; Cukor et al (47) , teniendo en cuenta que la depresión en los pacientes con IRCT constituye una de las principales barreras para la adherencia al tratamiento, realizaron un ensayo aleatorizado con pacientes que asistían a dos centros de diálisis en la ciudad de Nueva York.…”

“…En coherencia con los anteriores autores, Keppeke et al (36) , en su revisión sistemática de ensayos controlados sobre intervenciones para mejorar la adherencia a la medicación en adolescentes, sugieren que las intervenciones educativas por sí solas son insuficientes para promover la adherencia en niños y adolescentes y, que la incorporación de un componente conductual a las intervenciones de adherencia puede aumentar la eficacia. Así mismo, un metaanálisis realizado por Pai y McGrady (49) mostró que las acciones tuvieron pocos efectos en la post-intervención y seguimiento.…”

Caregiver Experiences and Needs in Paediatric Rheumatic Disease: A Mixed-Methods Systematic Review Protocol

“…Frequent hospital visits, coupled with the nancial burdens of treatment and medication, impose signi cant strains on families. Indirect costs, such as the need for parents to take time away from work to care for their child during are-ups and disruptions in the child's education due to missed school days, compound the economic challenges faced by caregivers (2)(3)(4). Beyond nancial challenges, it is crucial to recognize that paediatric rheumatic diseases transcend the realm of physical symptoms.…”

Perfil Epidemiológico Das Internações De Crianças E Adolescentes Por Insuficiência Cardíaca No Brasil

“…Outra doença que acomete a população infantil e que pode evoluir com a IC, é a doença reumática crônica do coração, que apresenta maior incidência em locais de baixa renda, atingindo principalmente indivíduos que possuem dificuldade de acesso aos serviços de saúde e que apresentam vulnerabilidades socioambientais 15,16. Essa doença ocorre frequentemente nos países em desenvolvimento, podendo exigir semanas de hospitalizações para a realização de cirurgias cardíacas ou para promover estabilização clínica da criança ou do adolescente 16,18 . Segundo dados do DATASUS, a região Nordeste é responsável pela maior frequência de casos de hospitalizações por doença reumática crônica do coração em crianças e adolescentes, com relação ao período de julho de 2008 a julho de 2020 11 .…”