Albuquerque, S., Fonseca, A., Pereira, M., Nazaré, B., & Canavarro, M. C. (2011). Estudos psicométricos Da versão Portuguesa Da Escala de impacto familiar (EIF). Laboratório de Psicologia, 9, 173–187. https://doi.org/10.14417/lp.632
Berge, J. M., & Patterson, J. M. (2004). Cystic fibrosis and the family: A review and critique of the literature. Families, Systems, & Health, 22(1), 74–100. https://doi.org/10.1037/1091-7527.22.1.74
Carnahan, R. M., & Brown, G. D. (2024). The power and pitfalls of underpowered studies. Pharmacotherapy, 44, 698–700. https://doi.org/10.1002/phar.4605
Cook, R. D., & Weisberg, S. (1982). Criticism and influence analysis in regression. Sociological Methodology, 13, 3. https://doi.org/10.2307/270724
Crespo, C., Santos, S., Canavarro, M. C., Kielpikowski, M., Pryor, J., & Féres-Carneiro, T. (2013). Family routines and rituals in the context of chronic conditions: A review. International Journal of Psychology, 48, 729–746. https://doi.org/10.1080/00207594.2013.806811
Daly, C., Ruane, P., O’Reilly, K., Longworth, L., & Vega-Hernandez, G. (2022). Caregiver burden in cystic fibrosis: A systematic literature review. Therapeutic Advances in Respiratory Disease, 16, Article 17534666221086416. https://doi.org/10.1177/1753466622108641
Article PubMed PubMed Central Google Scholar
Doherty, W. J., & Mendenhall, T. J. (2019). Medical family therapy. In B. H. Fiese, M. Celano, K. Deater-Deckard, E. N. Jouriles, & M. A. Whisman (Eds.), APA handbook of contemporary family psychology: Family therapy and training (pp. 189–203). American Psychological Association. https://doi.org/10.1037/0000101-012
Findling, Y., Barnoy, S., & Itzhaki, M. (2023). Burden of treatment, emotion work, and parental burnout of mothers to children with or without special needs: A pilot study. Current Psychology, 42(22), 19273–19285. https://doi.org/10.1007/s12144-022-03074-2
Gérain, P., & Zech, E. (2018). Does informal caregiving lead to parental burnout? Comparing parents having (or not) children with mental and physical issues. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2018.00884
Article PubMed PubMed Central Google Scholar
Gonzalez, S., Steinglass, P., & Reiss, D. (1989). Putting the illness in its place: Discussion groups for families with chronic medical illnesses. Family Process, 28(1), 69–87. https://doi.org/10.1111/j.1545-5300.1989.00069.x
Graziano, S., Lucidi, V., & Tabarini, P. (2016). Screening of depression and anxiety symptoms in patients with cystic fibrosis and parent caregivers using international guidelines. Journal of Cystic Fibrosis, 15(Suppl. 1), S114–S115. https://doi.org/10.1016/S1569-1993(16)30484-2
Hayes, A. F. (2013). Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. Guilford Press. https://doi.org/10.1111/jedm.12050
IBM Corp.Released 2022. IBM SPSS Statistics for Windows, Version 29.0.0.0 Armonk, NY . IBM Corp.
Janicke, D. M., Mitchell, M. J., & Stark, L. J. (2005). Family functioning in school-age children with cystic fibrosis: An observational assessment of family interactions in the mealtime environment. Journal of Pediatric Psychology, 30(2), 179–186. https://doi.org/10.1093/jpepsy/jsi005
Janse, A. J., Sinnema, G., Uiterwaal, C. S. P. M., Kimpen, J. L. L., & Gemke, R. J. B. J. (2005). Quality of life in chronic illness: Perceptions of parents and paediatricians. Archives of Disease in Childhood, 90(5), 486–491. https://doi.org/10.1136/adc.2004.051722
Article PubMed PubMed Central Google Scholar
Jessup, M., & Parkinson, C. (2010). All at sea: The experience of living with cystic fibrosis. Qualitative Health Research, 20(3), 352–364. https://doi.org/10.1177/1049732309354277
Kalkan, R. B., Blanchard, M. A., Mikolajczak, M., Roskam, I., & Heeren, A. (2023). Emotional exhaustion and feeling fed up as the driving forces of parental burnout and its consequences on children: Insights from a network approach. Current Psychology, 42(26), 22278–22289. https://doi.org/10.1007/s12144-022-03311-8
Kazak, A. E. (1989). Families of chronically ill children: A systems and social-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57(1), 25. https://doi.org/10.1037/0022-006X.57.1.25
Kazak, A. E., Rourke, M. T., & Crump, T. A. (2003). Families and other systems in pediatric psychology. In M. C. Roberts (Ed.), Handbook of pediatric psychology (3rd ed., pp. 159–175). The Guilford Press.
Kimball, H., Douglas, T., Sanders, M., & Cobham, V. E. (2021). Anxiety in children with cystic fibrosis and their parents: A systematic review. Clinical Child and Family Psychology Review, 24, 370–390. https://doi.org/10.1007/s10567-021-00345-5
Lawoko, S. (2007). Factors influencing satisfaction and well-being among parents of congenital heart disease children: Development of a conceptual model based on the literature review. Scandinavian Journal of Caring Sciences, 21(1), 106–117. https://doi.org/10.1111/j.1471-6712.2007.00444.x
Lindström, C., Åman, J., & Norberg, A. L. (2010). Increased prevalence of burnout symptoms in parents of chronically ill children. Acta Paediatrica, 99(3), 427–432. https://doi.org/10.1111/j.1651-2227.2009.01586.x
Lindström, C., Åman, J., Anderzén-Carlsson, A., & Lindahl Norberg, A. (2016). Group intervention for burnout in parents of chronically ill children–a small‐scale study. Scandinavian Journal of Caring Sciences, 30(4), 678–686. https://doi.org/10.1111/scs.12287
Marcão, A., Barreto, C., Pereira, L., Vaz, L. G., Cavaco, J., Casimiro, A., Félix, M., Silva, T. R., Barbosa, T., Freitas, C., Nunes, S., Felício, V., Lopes, L., Amaral, M., & Vilarinho, L. (2018). Cystic Fibrosis newborn screening in Portugal: PAP value in populations with stringent rules for genetic studies. International Journal of Neonatal Screening, 4(3), Article 22. https://doi.org/10.3390/ijns4030022
Article PubMed PubMed Central Google Scholar
Matias, M., Aguiar, J., César, F., Braz, A. C., Barham, E. J., Leme, V., Elias, L., Gaspar, M. F., Mikolajczak, M., Roskam, I., & Fontaine, A. M. (2020). The Brazilian–Portuguese version of the Parental Burnout Assessment: Transcultural adaptation and initial validity evidence. New Directions for Child and Adolescent Development, 2020(174), 67–83. https://doi.org/10.1002/cad.20374
McBennett, K. A., Davis, P. B., & Konstan, M. W. (2022). Increasing life expectancy in cystic fibrosis: Advances and challenges. Pediatric Pulmonology, 57, S5–S12. https://doi.org/10.1002/ppul.25733
Mikolajczak, M., Brianda, M. E., Avalosse, H., & Roskam, I. (2018). Consequences of parental burnout: Its specific effect on child neglect and violence. Child Abuse & Neglect, 80, 134–145. https://doi.org/10.1016/j.chiabu.2018.03.025
Mikolajczak, M., Gross, J. J., & Roskam, I. (2019). Parental burnout: What is it, and why does it matter? Clinical Psychological Science, 7(6), 1319–1329. https://doi.org/10.1177/2167702619858430
Mikolajczak, M., Aunola, K., Sorkkila, M., & Roskam, I. (2023). 15 years of parental burnout research: Systematic review and agenda. Current Directions in Psychological Science, 32(4), 276–283. https://doi.org/10.1177/09637214221142777
Naranjo, D., Barley, R. C., Veeravalli, S., Hernandez, C., Adams, R., & Milla, C. (2017). Mental health screening feasibility and outcomes in a large pediatric CF center. Pediatric Pulmonology, 52(S47), 499–500. https://doi.org/10.1002/ppul.23840
Othman, A., Mohamad, N., Hussin, Z. A., & Blunden, S. (2011). Factors related to parental well-being in children with cancer. International Proceedings of Economics Development & Research, 5(1), 255–260.
Prieur, M. G., Christon, L. M., Mueller, A., Smith, B. A., Georgiopoulos, A. M., Boat, T. F., & Filigno, S. S. (2021). Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience. Pediatric Pulmonology, 56, S97–S106. https://doi.org/10.1002/ppul.24958
Quittner, A. L., Opipari, L. C., Regoli, M. J., Jacobsen, J., & Eigen, H. (1992). The impact of caregiving and role strain on family life: Comparisons between mothers of children with cystic fibrosis and matched controls. Rehabilitation Psychology, 37(4), 275–290. https://doi.org/10.1037/h0079107
Quittner, A. L., Abbott, J., Georgiopoulos, A. M., Goldbeck, L., Smith, B., Hempstead, S. E., Marshall, B., Sabadosa, K. A., & Elborn, S. (2016). International committee on mental health in cystic fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety. Thorax, 71(1), 26–34. https://doi.org/10.1136/thoraxjnl-2015-207488
Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., Wong, M., Walter, S. D., & Wood, E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics.
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