VIVER COM FIBROSE CÍSTICA: A VISÃO PESSOAL DO ADOLESCENTE BRASILEIRO

Katia CA Aguiar; Nely AG Nucci; Fernando AL Marson; Tais DR Hortencio; Antonio F Ribeiro; Jose D Ribeiro

doi:10.4025/psicolestud.v21i2.30494

Katia CA Aguiar State University of Campinas
Nely AG Nucci Pontifical Catholic Universit
Fernando AL Marson State University of Campinas
Tais DR Hortencio State University of Campinas
Antonio F Ribeiro State University of Campinas
Jose D Ribeiro State University of Campinas

DOI: https://doi.org/10.4025/psicolestud.v21i2.30494

Palavras-chave: Doenças crônicas, fibrose cística, emoções.

Resumo

O presente estudo examinou os desafios psicológicos de adolescentes com fibrose cística (FC) no Brasil, por meio de uma entrevista semiestruturada com perguntas abertas: [(i) Como é ter FC para você?; (ii) Você tem necessidades especiais por ter FC?; (iii) Como você vê o seu futuro?] Foi realizada a entrevista com 42 adolescentes com FC. Foi investigado como os adolescentes lidam com a FC, identificado suas necessidades, e como eles vislumbram o futuro. Os resultados mostram que as emoções dos adolescentes incluíam medo da morte, vergonha e raiva. Outras preocupações incluíam a perda da liberdade, ficando com atraso na escola, perda de amigos, da igualdade e aceitação, e as perspectivas futuras. Esses sentimentos e preocupações foram influenciados pela doença. Há poucos estudos que examinaram ajuste dos adolescentes ao convívio com a FC na América do Sul. Assim, buscamos compreender como é viver com uma doença crônica na adolescência; como isso pode contribuir para novas intervenções psicológicas para pacientes e familiares; estimular novas pesquisas, e auxiliar os profissionais de saúde nos cuidados específicos aos adolescentes com FC.

Downloads

Não há dados estatísticos.

Biografia do Autor

Katia CA Aguiar, State University of Campinas

Department of Pediatrics, Faculty of Medical Sciences, State University of Campinas, Tessalia Vieira de Camargo, 126, Campinas, Sao Paulo, Brazil, CEP: 13083-887. Researcher with focus in Psychology of the lung diseases.

Nely AG Nucci, Pontifical Catholic Universit

Department of Psychiatry, Pontifical Catholic University, Campinas, Sao Paulo, Brazil, CEP: 13086-900. Researcher with focus in Psicology.

Fernando AL Marson, State University of Campinas

Department of Pediatrics and Department of Medical Genetics, Faculty of Medical Sciences, State University of Campinas, Tessalia Vieira de Camargo, 126, Campinas, Sao Paulo, Brazil, CEP: 13083-887. Researcher with focus in Medical Genetics of the lung diseases.

Tais DR Hortencio, State University of Campinas

Department of Pediatrics, Faculty of Medical Sciences, State University of Campinas, Tessalia Vieira de Camargo, 126, Campinas, Sao Paulo, Brazil, CEP: 13083-887. Researcher with focus in Nutrition of the lung diseases.

Antonio F Ribeiro, State University of Campinas

Department of Pediatrics, Faculty of Medical Sciences, State University of Campinas, Tessalia Vieira de Camargo, 126, Campinas, Sao Paulo, Brazil, CEP: 13083-887. Researcher with focus in Gastroenterology of the Cystic Fibrosis.

Jose D Ribeiro, State University of Campinas

Department of Pediatrics, Faculty of Medical Sciences, State University of Campinas, Tessalia Vieira de Camargo, 126, Campinas, Sao Paulo, Brazil, CEP: 13083-887. Researcher with focus in Pneumology of the Cystic Fibrosis.

Referências

Bates, A. T. & Kearney, J. A. (2015). Understanding death with limited experience in life: dying children's and adolescents' understanding of their own terminal illness and death. Curr Opin Support Palliat Care, 9 (1), 40-45.

Bregnballe, V., Schiøtz, P. O. & Lomborg, K. (2010). Parenting adolescents with cystic fibrosis: the adolescents' and young adults' perspectives. Patient Preference and Adherence, 5, 563-570.

Conway, S. P., Pond, M. N., Watson, A. & Hamnett, T. (1996). Knowledge of adult patients with cystic fibrosis about their illness. Thorax, 51 (1), 34-38.

Coupey, S. M. & Cohen, M. I. (1984). Special considerations for the health care of adolescents with chronic illnesses. Pediatric Clinics of North America, 31 (1), 211-219.

Fonagy, P. & Allison, E. (2015). Psychic reality and the nature of consciousness. Int J Psychoanal [Epub ahead of print].

Higham, L., Ahmed, S., & Ahmed, M. (2013). Hoping to live a "normal" life whilst living with unpredictable health and fear of death: impact of cystic fibrosis on young adults. J Genet Couns, 22 (3), 374-383.

Hokkanen, H., Eriksson, E., Ahonen, O. & Salantera, S. (2004). Adolescents with cancer: experience of life and how it could be made easier. Cancer Nursing, 27 (4), 325-335.

Huus, K. & Enskär, K. (2007). Adolescents' experience of living with diabetes. Paediatric Nursing, 19 (3), 29–31.

Ktephenson, A. L., Tom, M., Berthiaume, Y., Singer L. G., Aaron, S. D., Whitmore, G. A. & Stanojevic, S. (2015). A contemporary survival analysis of individuals with cystic fibrosis: a cohort study. Eur Respir J, 45, 670-679.

Kuehn, B. M. (2014). Progress in treating cystic fibrosis means that many patients may now reach midlife and beyond. JAMA, 312 (12), 1182-1183.

Kyngäs, H. (2000). Compliance of adolescents with chronic disease. Journal of Clinical Nursing, 9 (4), 549-546.

Lannegrand-Willems L. & Barbot B. (2015). Challenges of adolescent psychology in the European identity context. New Dir Child Adolesc Dev, 2015 (147), 69-76.

MacKenzie, T., Gifford, A. H., Sabadosa, K. A., Quinton, H. B., Knapp, E. A., Goss, C. H. & Marshall, B. C. (2014). Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the cystic fibrosis foundation patient registry. Ann Intern Med, 161 (4), 233-241.

Mall, M. A. & Hartl, D. (2014). CFTR: cystic fibrosis and beyond. Eur Respir J, 44 (4), 1042-1054.

Marson, F. A. L., Bertuzzo, C. S. & Ribeiro, J. D. (2015). Personalized Drug Therapy in Cystic Fibrosis: From Fiction to Reality. Curr Drug Targets, 16 (9), 1007-1017.

McEwan, M. J., Espie, C. A., Metcalfe, J., Brodie, M. J. & Wilson, M. T. (2004). Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure, 13 (1), 15-31.

Modi, A. C. & Quittner, A. L. (2006). Barriers to treatment adherence for children with cystic fibrosis and asthma: What gets in the way. Journal of Pediatric Psychology, 31 (8), 846-858.

Nobili, R. M., Duff, A. J., Ullrich, G., Smrekar, U., Havermans, T., Bryon, M., Borawska-Kowalczyk U. & Malmborg M. S. (2011). Guiding principles on how to manage relevant psychological aspects within a CF team: interdisciplinary approaches. J Cyst Fibros, 10 (2), S45–52.

Quittner, A. L. & Slater, S. (2005). Parenting stress, depression, and caregiving for young children with cystic fibrosis. Pediatric Pulmonology, 28, 180-181.

Quittner, A. L., Goldbeck L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., Tibosch, M. M., Bergsten Brucefors, A., Yüksel, H., Catastini, P., Blackwell, L. & Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax, 69, 1090-7.

Rhee, H., Wenzel, J. & Steeves, R. H. (2007). Adolescents’ psychosocial experiences living with asthma: a focus group study. Journal of Pediatric Health Care, 21 (2), 99-107.

Santos, G. P., Domingos, M. T., Wittig, E. O., Riedi, C. A. & Rosário, N. A. (2005). Programa de triagem neonatal para fibrose cística no estado do Paraná: avaliação após 30 meses de sua implantação. Jornal de Pediatria (Rio J), 81 (3), 240-244.

Sestito, L. A. & Sica, L. S. (2014). Identity formation of Italian emerging adults living with parents: a narrative study. J Adolesc, 37 (8), 1435-1447.

Snethen, J. A., Broome, M. E., Bartels, J. & Warady, B. A. (2000). Adolescents' perception of living with end stage renal disease. Pediatric Nursing, 27 (2), 159-61.

Taylor, R. M., Gibson, F. & Franck, L. S. (2008). The experience of living with a chronic illness during adolescence: a critical review of the literature. Journal of Clinical Nursing, 17 (23), 3083-3091.

Tuchman, L. & Schwartz, M. (2013). Health outcomes associated with transition from pediatric to adult cystic fibrosis care. Pediatrics., 132 (5):847-853.

Williams, J. & de Maso, D .R. (2000). Pediatric team meetings: the mental health consultant’s role. Clinical Child Psychology and Psychiatry, 5 (1), 105-113.

Zindani, G. N., Streetman, D. D., Streetman, D. S. & Nasr, S. Z. (2006). Adherence to treatment in children and adolescent patients with cystic fibrosis. Journal of Adolescent Health, 38 (1), 13-17.

Zvereff, V. V., Faruki, H., Edwards, M. & Friedman, K.J. (2013). Cystic fibrosis screening in North America population.Genetics in Medicine, 16, 539-546.