Resumen de A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregivers: psychological aspects

Selene Valero Moreno, Inmaculada Montoya Castilla, Marián Pérez Marín

• español

  El objetivo fue realizar un estudio comparativo entre la fibrosis quística y la discinesia ciliar primaria entre adolescentes y sus cuidadores para comprender su adaptación a la enfermedad. Evaluando 39 díadas de adolescentes de entre 9 y 18 años y sus cuidadores, el 69,20% de los cuales tenían un diagnóstico de fibrosis quística. Para los adolescentes, se evaluó la sintomatología ansioso-depresiva mediante el HADS, la amenaza percibida de la enfermedad (B-IPQ) y la calidad de vida (CRQ-SAS). Para los cuidadores, se evaluó la sintomatología emocional (HADS) y los niveles de estrés percibido (PIP). Se realizaron comparaciones de medias según el diagnóstico y la sintomatología ansioso-depresiva, se estudiaron las relaciones entre variables y se realizaron modelos de análisis cualitativo comparativo. Se encontraron mayores niveles ansioso-depresivos en el cuidador que en el adolescente. Los adolescentes con discinesia ciliar primaria presentan un impacto emocional mayor que los adolescentes con fibrosis quística. No se encontraron diferencias en los cuidadores según el diagnóstico. El estado emocional, la calidad de vida y la percepción de amenaza de la enfermedad del adolescente estaban relacionados con el estado emocional del cuidador y se explicaban por él, y viceversa.

• English

  This work aimed to conduct a comparative study between cystic fibrosis and primary ciliary dyskinesia among adolescents and their caregivers to understand their emotional adaptation to the disease. Thirty-nine dyads of adolescents aged 9-18 years and their primary caregivers were assessed, 69.20 % of whom had a diagnosis of cystic fibrosis. For the adolescents, anxious-depressive symptomatology was assessed using the HADS, perceived threat of disease (B-IPQ) and quality of life (CRQ-SAS). For the caregivers, emotional symptomatology (HADS) and perceived stress levels (PIP) were assessed. Mean comparisons were made according to diagnosis and severity of anxious-depressive symptomatology, relationships between variables were studied, and qualitative comparative analysis models, QCA, were performed. Higher levels of anxiety and depression were found in the caregiver than in the adolescent. Adolescents with primary ciliary dyskinesia have a more significant emotional impact than adolescents with cystic fibrosis. However, no differences were found in caregivers according to diagnosis. The adolescent’s emotional state, quality of life and perceived threat of disease were related to and explained by the caregiver’s emotional state, and vice versa. Therefore, there appears to be a certain degree of emotional contagion between the dyad members. This is a preliminary study that has not been carried out before and can help to understand the psychological aspects associated with these diseases to favour the patient’s adjustment and thereby ensure more effective management of the disease and adherence to treatment.