Parental information, motivation, and adherence behaviors among children with sickle cell disease

Abstract

Background Identification of psychosocial correlates of health care utilization has become an important strategy in improving clinical care. The objective of the study was to examine the fit of the Information-Motivation-Behavioral Skills (IMB) model, applied to health care utilization among children with sickle cell disease (SCD). Procedure Participants were parents of 150 children, ages 1 to 17 years, receiving care in a sickle cell center. Parents completed questionnaires assessing information, motivation, adherence behaviors, and other factors with respect to SCD management. Data regarding health care utilization in the previous 12 months were obtained from parent report and electronic medical records. Stepwise multiple regression analysis was conducted to determine associations between IMB factors and health care use. Results Parents rated highly in the domains of information, motivation, and adherence behaviors for managing their child’s SCD. Children of parents reporting higher satisfaction with social supports had higher odds (OR 1.49, 95% CI 1.03–2.15) of 2 or more routine hematology visits in the previous 12 months. Neither information nor adherence behavior was associated with urgent or routine care use. Among other variables measured, high parental illness-related stress and child health status reported as fair/poor were the strongest predictors of urgent care use while private insurance type was the strongest predictor of routine care use. Conclusions Among IMB factors, social support was associated with routine health care utilization. Social support and parental illness-related stress may serve as important, modifiable targets in interventions to allocate needed resources to families and reduce unnecessary medical care.

The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease

“…A supportive, united and loving family can make a child more determined to prevail over the more devastating aspects of SCD (Barakat, Patterson, Daniel, & Dampier, 2008;Raphael et al, 2013). In contrast, mothers who have difficulties adjusting to their child's illness can cause the child to feel nervous, humiliated, or guilty (Barbarin & Christian, 1999).…”

A criança com doença falciforme e a família: revisão integrativa

“…As questões que envolvem fatores de risco psicossociais foi outro ponto frequentemente encontrado nos estudos selecionados (12-13-14-15,21) , incluindo alterações emocionais em irmãos da criança afetada (14,17,21) .…”

“…constantes hospitalizações nos momentos de crises (22) , busca por dieta adequada (23) , restrições de atividades físicas (9,23) e outros cuidados que são necessários para o controle da morbidade (23) da DF. Essas modificações impostas pelo manejo da doença sobrecarregam os pais, que além de cuidarem do filho afetado pela doença, também precisam balancear os cuidados necessários aos outros filhos não doentes, o que pode gerar conflitos no ajustamento familiar (14,17,21) .…”

Manejo familiar da criança com doença falciforme

“…Ao considerarem a assistência em saúde e a necessidade de apoio para as famílias de crianças falciformes, os estudos internacionais de Gold et al (2011), Raphael et al (2013) e Hildenbrand et al (2015) afirmam que o suporte social é determinante para a aderência ao tratamento da doença.…”

“…Um estudo com 150 pais de crianças com DF, atendidas em um hospital de referência no Texas (EUA), verificou que o suporte social (família extensa, amigos, vizinhos e profissionais) aumenta a motivação desses pais no manejo da doença e que isto facilita o engajamento, sendo um efetivo mecanismo de enfrentamento durante os eventos estressores, e ainda melhora a rotina de cuidados em torno da criança (Raphael et al, 2013).…”