A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregiverspsychological aspects

  1. Selene Valero-Moreno 1
  2. Inmaculada Montoya-Castilla 1
  3. Marián Pérez-Marín 1
  1. 1 Universitat de València
    info

    Universitat de València

    Valencia, España

    ROR https://ror.org/043nxc105

Revista:
Ansiedad y estrés

ISSN: 1134-7937

Año de publicación: 2024

Volumen: 30

Número: 1

Páginas: 8-16

Tipo: Artículo

DOI: 10.5093/ANYES2024A2 DIALNET GOOGLE SCHOLAR lock_openAcceso abierto editor

Otras publicaciones en: Ansiedad y estrés

Resumen

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.

Referencias bibliográficas

  • Broadbent, E., Petrie, K. J., Main, J., & Weinman, J. (2006). The Brief Illness Perception Questionnaire. Journal of Psychosomatic Research, 60(6), 631–637. https://doi.org/10.1016/j.jpsychores.2005.10.020
  • Carotenuto, M., Esposito, M., Pasquale, F. Di, & Stefano, S. De. (2013). Psychological, cognitive and maternal stress assessment in children with primary ciliary dyskinesia. World Journal of Pediatric, 9(4). https://doi.org/10.1007/s12519-013-0441-1
  • Casaña-Granell, S., Lacomba-Trejo, L., Montoya-Castilla, I., & Pérez-Marín, M. (2021). Factors associated with stress when caring for a child with a short stature. Current Psychology, 41, 7271–7279. https://doi.org/10.1007/s12144-020-01323-w
  • Casaña-Granell, S., Lacomba-Trejo, L., Valero-Moreno, S., Prado-Gasco, V., Montoya-Castilla, I., & Pérez-Marín, M. (2018). A Brief version of the pediatric inventory for parents (pip) in Spanish population: Stress of main family carers of chronic paediatric patients. PLoS ONE, 13(7), 1–16. https://doi.org/10.1371/journal.pone.0201390
  • Catastini, P., Marco, S. Di, Furriolo, M., Genovese, C., Grande, A., Iacinti, E., Iusco, D. R., Nobili, V., Pescini, R., Ragni, R., Randazzo, R., Risso, C., Tabarini, P., Braggion, C., De Masi, S., & McGreevy, K. (2016). The Prevalence of Anxiety and Depression in Italian Patients With Cystic Fibrosis and Their Caregivers. Pediatric Pulmonology, 51, 1311–1319. https://doi.org/10.1002/ppul.23566
  • Claude, R., & Christopher, R. (2014). Acq [Computer Programme] (Version 2.1.12.).
  • Continisio, G. I., Serra, N., Guillari, A., Civitella, M. T., Sepe, A., Simeone, S., Gargiulo, G., Toscano, S., Esposito, M. R., Raia, V., & Rea, T. (2020). An investigation on parenting stress of children with cystic fibrosis. Italian Journal of Pediatrics, 46(1), 33. https://doi.org/10.1186/s13052-020-0795-7
  • Copeland, W. E., Alaie, I., Jonsson, U., & Shanahan, L. (2021). Associations of Childhood and Adolescent Depression With Adult Psychiatric and Functional Outcomes. Journal of the American Academy of Child & Adolescent Psychiatry, 60(5), 604–611. https://doi.org/https://doi.org/10.1016/j.jaac.2020.07.895
  • Eng, S., & Woodside, A. G. (2012). Configural analysis of the drinking man: Fuzzy-set qualitative comparative analyses. Addictive Behaviors, 37(4), 541–543. https://doi.org/10.1016/j.addbeh.2011.11.034
  • Georgiopoulos, A. M. (2020). Starting early: An internacional focus on mental health in children living with cystic fibrosis. Pediatric Pulmonology, 55, 267–269. https://doi.org/10.1002/ppul.24560
  • Graziano, S., Spanò, B., Majo, F., Righelli, D., Vincenzina, L., Quittner, A., & Tabarini, P. (2020). Rates of depression and anxiety in Italian patients with cystic fibrosis and parent caregivers: Implementation of the Mental Health Guidelines. Respiratory Medicine, 172. https://doi.org/10.1016/j.rmed.2020.106147
  • Guta, M. T., Tekalign, T., Awoke, N., Fite, R. O., Dendir, G., & Lenjebo, T. L. (2021). Global Burden of Anxiety and Depression among Cystic Fibrosis Patient: Systematic Review and Meta-Analysis. International Journal of Chronic Diseases, 2021, 1–9. https://doi.org/10.1155/2021/6708865
  • Ibáñez, E., & Caro, I. (1992). La escala hospitalaria de ansiedad y depresión: su utilidad práctica en psicología de la salud. Boletín de Psicología, 36, 43–69. https://books.google.es/books?id=DM7qngEACAAJ
  • O’Hayer, C. V., O’Loughlin, C. M., Nurse, C. N., Smith, Patrick, J., & Stephen, M. J. (2021). ACT with CF: A telehealth and in-person feasibility study to address anxiety and depressive symptoms among people with cystic fibrosis. Journal of Cystic Fibrosis, 20, 133–139. https://doi.org/10.1016/j.jcf.2020.11.013
  • Pinquart, M. (2018). Parenting stress in caregivers of children with chronic physical condition—A meta-analysis. Stress and Health, 34(2), 197–207. https://doi.org/10.1002/smi.2780
  • Ragin, C. C. (2008). Redesigning Social Inquiry: Fuzzy sets and beyond. University of Chicago Press.
  • Shorey, S., Ng, E. D., & Wong, C. H. J. (2022). Global prevalence of depression and elevated depressive symptoms among adolescents: A systematic review and meta-analysis. British Journal of Clinical Psychology, 61(2), 287–305. https://doi.org/10.1111/bjc.12333
  • Smith, B. A., Georgiopoulos, A. M., & Quittner, A. L. (2016). Maintaining mental health and function for the long run in cystic fibrosis. Pediatric Pulmonology, 51(April), S71–S78. https://doi.org/10.1002/ppul.23522
  • Streisand, R., Braniecki, S., Tercyak, K. P., & Kazak, A. E. (2001). Childhood illness-related parenting stress: the pediatric inventory for parents. Journal of Pediatric Psychology, 26(3), 155–162. https://doi.org/10.1093/jpepsy/26.3.155
  • Tan, J.-Y., Molassiotis, A., Lloyd-Williams, M., & Yorke, J. (2018). Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study. European Journal of Cancer Care, 27(1). https://doi.org/10.1111/ecc.12691
  • Tickner, C., Holland, L., Wark, P., Hilton, J., Morrison, C., Kay-Lambkin, F., & Heinch, M. (2022). Mental health care needs in cystic fibrosis : A scoping review. Social Work In Health Care, 61(2), 1–11. https://doi.org/10.1080/00981389.2022.2060422
  • Author 1., Castillo-Corullón, S., Author 2, & Author 3. (2020). Primary ciliary dyskinesia and psychological well-being in adolescence. PLOS ONE, 15(1), e0227888. https://doi.org/10.1371/journal.pone.0227888
  • Author 1, Castillo-Corullón, S., Prado-Gascó, V.-J., Author 3 & Author 2 (2019). Chronic Respiratory Disease Questionnaire (CRQ-SAS): Analysis of psychometric properties. Archivos Argentinos de Pediatria, 117(3), 149–155. https://doi.org/10.5546/aap.2019.eng.149
  • Author 1., Lacomba-Trejo, L., Casaña-Granell, S., Prado-Gascó, V. J., Author 2 & Author 3 (2020). Psychometric properties of the questionnaire on threat perception of chronic illnesses in pediatric patients. Revista Latino-Americana de Enfermagem, 28. https://doi.org/10.1590/1518-8345.3144.3242
  • Author 1, Lacomba-Trejo, L., Casaña-Granell, S., Prado-Gascó, V., Author 2 & Author 3 (2019). Factor structure of the Hospital Anxiety and Depression Scale in adolescent patients with chronic disease. Archivos Argentinos de Pediatría, 117(4), 252–258. https://doi.org/http://dx.doi.org/10.5546/aap.2019.eng.252
  • Vigil, L., Güell, M. R., Morante, F., López De Santamaría, E., Sperati, F., Guyatt, G., & Schünemann, H. (2011). Validez y sensibilidad al cambio de la versión española autoadministrada del cuestionario de la enfermedad respiratoria crónica (CRQ-SAS). Archivos de Bronconeumologia, 47(7), 343–349. https://doi.org/10.1016/j.arbres.2011.02.016
  • Wood, B. L., Miller, B. D., & Lehman, H. K. (2015). Review of Family Relational Stress and Pediatric Asthma: The Value of Biopsychosocial Systemic Models. Family Process, 54(2), 376–389. https://doi.org/10.1111/famp.12139
  • World Health Organization, W. (2021). Adolescent mental health. https://www.who.int/news-room/fact-sheets/detail/adolescent-mental-health
  • Yuksekgonul, A., Aslan, A. T., Sismanlar Eyuboglu, T., Soysal, S., & Budakoglu, I. I. (2020). Evaluation of the psychological status of mothers of children with cystic fibrosis and the relationship between children’s clinical status. Journal of Paediatrics and Child Health, 56(10), 1537–1543. https://doi.org/10.1111/jpc.14983
  • Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370. https://doi.org/10.1111/j.1600-0447.1983.tb09716.