Parental Problem-Solving Abilities and the Association of Sickle Cell Disease Complications with Health-Related Quality of Life for School-Age Children

Abstract

Children with sickle cell disease (SCD) are at risk for poor health-related quality of life (HRQOL). The current analysis sought to explore parent problem-solving abilities/skills as a moderator between SCD complications and HRQOL to evaluate applicability to pediatric SCD. At baseline, 83 children ages 6–12 years and their primary caregiver completed measures of the child HRQOL. Primary caregivers also completed a measure of social problem-solving. A SCD complications score was computed from medical record review. Parent problem-solving abilities significantly moderated the association of SCD complications with child self-report psychosocial HRQOL (p = .006). SCD complications had a direct effect on parent proxy physical and psychosocial child HRQOL. Enhancing parent problem-solving abilities may be one approach to improve HRQOL for children with high SCD complications; however, modification of parent perceptions of HRQOL may require direct intervention to improve knowledge and skills involved in disease management.

Problem‐solving skills, parent–adolescent communication, dyadic functioning, and distress among adolescents with cancer

“…22 Better problem-solving may improve parent-adolescent relationships and communication, as demonstrated in other disease populations. 23,24 Problem-solving skills may be considered a type of primary control coping aimed at changing one’s environment, while other skills (e.g., cognitive restructuring, relaxation) may be considered secondary control coping skills aimed at changing one’s emotions. 25 The broader literature on coping among adolescents with cancer suggests that different types of coping strategies may be beneficial, and problem-solving skills represent one way in which to increase positive coping strategies and adjustment in adolescents with cancer.…”

Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability?

“…As far as the health concerns associated with CPCs such as asthma, diabetes, cystic fibrosis and sickle cell disease, many of these require daily treatment regimens that are complex and time‐consuming (Al Ghriwati, Winter, & Everhart, ; Barakat, Daniel, Smith, Robinson, & Patterson, ; Hullmann et al, ; Quittner, Saez‐Flores, & Barton, ). Additionally, these conditions cannot always be successfully treated or managed.…”

Aspectos psicosociales de la calidad de vida en supervivientes pediátricos de tumores en el sistema nervioso central

“…Dentro de las variables psicológicas debe tenerse en cuenta el posible papel del entorno familiar, pues se ha sugerido que el superviviente adolescente de TC en etapa infantil puede tener problemas para realizar su proceso hacia la independencia de los padres, lo cual vendría avalado por el hecho de que este grupo de supervivientes vive menos frecuentemente en pareja y tiene mayor incidencia de situación de desempleo (7) . Esta dependencia, debida a la presencia de efectos a largo plazo puede impactar física y emocionalmente a los progenitores o cuidadores principales (23) . En esta línea, los datos disponibles muestran que un 56% de progenitores reportan unos altos niveles de malestar emocional general (23) , y un 29% muestran niveles graves de sintomatología de estrés postraumático (24) , e incluso algunos autores describen un porcentaje del 42% de progenitores que cumplen criterios diagnósticos de estrés de tipo postraumático según criterios DSM-IV (24) .…”

“…Esta dependencia, debida a la presencia de efectos a largo plazo puede impactar física y emocionalmente a los progenitores o cuidadores principales (23) . En esta línea, los datos disponibles muestran que un 56% de progenitores reportan unos altos niveles de malestar emocional general (23) , y un 29% muestran niveles graves de sintomatología de estrés postraumático (24) , e incluso algunos autores describen un porcentaje del 42% de progenitores que cumplen criterios diagnósticos de estrés de tipo postraumático según criterios DSM-IV (24) . Además, el malestar emocional parental persiste también durante el período de supervivencia (26)(27)(28) .…”