Conceito de sobrecarga do cuidador da criança com câncer: uma revisão integrativa

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Sonia Patricia Carreño Moreno
Maira Alejandra Fonsca Salguero
Juan Carlos Rojas Vargas
Lina Juliana Moreno Ozuna
Resumo

Introdução: A sobrecarga do cuidador de crianças com câncer foi objetivada por instrumentos que foram projetados para cuidadores de adultos com doença de Alzheimer, no entanto, este conceito ainda não foi esclarecido no caso de câncer infantil. O objetivo desta revisão é identificar os atributos do conceito de sobrecarga do cuidador da criança com câncer. Materiais e métodos: Revisão integrativa qualitativa onde 21 artigos publicados entre 2012 e 2017 em espanhol, inglês e portugués, foram retirados das bases de dados Biblioteca Virtual en Salud, Scielo, Science Direct, Embase, Ovid e Scopus, utilizando os descritores Burden, Cancer, Children, Parents, Overload. Resultados: Cinco questões relacionadas à sobrecarga do cuidador da criança com câncer surgiram, o que constitui uma sobrecarga dimensional em um nível físico, psicológico, social, econômico e espiritual. Conclusão: Embora o conceito de sobrecarga tenha evoluído na ciência para ter instrumentos de medição, o fenômeno é experimentado de forma particular nos cuidadores de crianças com câncer desde o amor parental e a conotação social do câncer, apesar do excesso de esforço , cuidadores não querem abandonar o cuidado.

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Biografia do Autor ##ver##

Sonia Patricia Carreño Moreno, Universidad Nacional de Colombia. Bogotá, Colombia

Enfermera, magíster en Enfermería, doctora en Enfermería.  Profesora asistente de la Universidad Nacional de Colombia. Grupo de investigación Cuidado de Enfermería al Paciente Crónico. Bogotá, Colombia. Correo: spcarrenom@unal.edu.co

Maira Alejandra Fonsca Salguero, Universidad Nacional de Colombia. Bogotá, Colombia

Enfermera en formación. Universidad Nacional de Colombia. Bogotá Colombia. Correo: mafonsecas@unal.edu.co

Juan Carlos Rojas Vargas, Universidad Nacional de Colombia

Enfermero en formación. Universidad Nacional de Colombia. Bogotá Colombia. Correo: jcrojasv@unal.edu.co

Paola Andrea Cubillos Moreno

Enfermera en formación. Universidad Nacional de Colombia. Bogotá Colombia. Correo: pacubillosm@unal.edu.co

Lina Juliana Moreno Ozuna, Universidad Nacional de Colombia.

Enfermera en formación. Universidad Nacional de Colombia. Bogotá Colombia. Correo: ljmorenoo@unal.edu.co

##references##

Steliarova E, Colombet M, Ries L, Moreno F, Dolya A, Bray F, et al. International incidence of child-hood cancer, 2001–10: a population-based registry study. Lancet Oncol. 2017;18(6):719–731. DOI: https://doi.org/10.1016/S1470-2045(17)30186-9

Organización Mundial de la Salud. Preguntas frecuentes sobre el cáncer infantil. 2014 [Internet]. [cita-do el 21 de junio de 2017]. Disponible en: https://www.who.int/cancer/media/news/Childhood_can-cer_day/es/

Organización Panamericana de la Salud. Nueva publicación de la OPS/OMS busca contribuir a la detección temprana del cáncer infantil [Internet]. Washington DC: OPS; 2015. [citado el 21 de ju-nio de 2017]. Disponible en: https://www.paho.org/col/index.php?option=com_content&view=article&id=2313:nueva-publicacion-de-la-opsoms-busca-contribuir-a-la-deteccion-temprana-del-cancer-infantil&Itemid=487

González M. Protocolo de vigilancia en salud pública cancer en menores de 18 años. [Internet]. Bo-gotá; 2017. [citado el 21 de junio de 2017]. Disponible en: https://cuentadealtocosto.org/site/images/Publicaciones/guias%20cancer/INS%20Protocolo%20Vigilancia%20Cancer%20Infantil.pdf

Fondation Sanofi Espoir. My Child Matters. Fighting childhood cancer in countries with limited re-sources [Internet]. París; 2013 [citado el 21 de junio de 2017]. Disponible en: http://sanofi-espoir-foundation.publispeak.com/my-child-matters/com/ipedis/publispeak/client/contents/pdf/SanofiE-spoirFoundation-ChildMatters-EN.pdf

Carreño S, Arias M. Competencia para cuidar en el hogar y sobrecarga en el cuidador del niño con cáncer. Gac Mex Oncol [Internet]. 2016 [citado el 21 de junio de 2017]; 15(6):336–43. Disponible en: http://linkinghub.elsevier.com/retrieve/pii/S1665920116300864 DOI: https://doi.org/10.1016/j.gamo.2016.09.009

Carrillo M, Sánchez B, Barrera L. Habilidad de cuidado de cuidadores familiares de niños con cáncer. Rev Salud Publica. 2015; 17(3):394–403. DOI: https://doi.org/10.15446/rsap.v17n3.32408

Carrillo M, Ortiz B, Herrera B, Carreño S, Chaparro L. Efecto del programa de habilidad de cuidado para cuidadores familiares de niños con cáncer. Rev Colomb Cancerol. 2014;18(1):18–26. DOI: https://doi.org/10.1016/S0123-9015(14)70221-5

Ballestas H, López E, Meza R, Palencia K, Ramos D, Montalvo A. Cuidadores familiares de niños con cáncer y su funcionalidad. Rev Científica Salud Uninorte [Internet]. 2013 [Citado el 8 de julio de 2017]; 29(2): 249-259. Disponible en: http://rcientificas.uninorte.edu.co/index.php/salud/article/view/3969

Carrillo M, Barrero R, Arboleda L, Gutiérrez O, Melo B, Ortiz V. Competencia para cuidar en el hogar de personas con enfermedad crónica y sus cuidadores en Colombia. Rev Fac Med. 2015;63(4):665–75. DOI: https://doi.org/10.15446/revfacmed.v63.n4.50322

Carreño S. El cuidado transicional de enfermería aumenta la compentencia en el rol del cuidador del niño con cáncer. Psicooncología. 2016;13(2-3):321-332. DOI: https://doi.org/10.5209/PSIC.54439

Pozo C, Bretones B, Méndez M, Morillejo E, Cid N. Repercusiones psicosociales del cáncer infantil: apoyo social y salud en familias afectadas. Rev Latinoam Psicol. 2015;47(2):93–101. DOI: https://doi.org/10.1016/j.rlp.2014.07.002

Mader L, Roser K, Baenziger J, Tinner EM, Michel G, Scheinemann K, et al. Household income and risk-of-poverty of parents of long-term childhood cancer survivors. Pediatr Blood Cancer. 2017; 64(8):1–11. DOI: https://doi.org/10.1002/pbc.26456

Cabada E, Castillo V. Prevalencia del síndrome de sobrecarga y sintomatología ansiosa depresiva en el cuidador del adulto mayor. Psicol y Salud. 2017; 27(1):53–9.

Crespo M, Rivas M. La evaluación de la carga del cuidador: una revisión más allá de la escala de Zarit. Clínica y Salud. 2015; 2(1):9–15. DOI: https://doi.org/10.1016/j.clysa.2014.07.002

Santo E, Gaíva M, Espinosa M, Barbosa D, Belasco A. Cuidando del niño con cáncer: evaluación de la sobrecarga y calidad de vida de los cuidadores. Rev Lat Am Enfermagem. 2011; 19(3): 1-9

Martín M, Domínguez A, Muñoz P, González E, Ballesteros J. Instrumentos para medir la sobrecarga en el cuidador informal del paciente con demencia. Rev Esp Geriatr Gerontol. 2013; 48(6):276–84. DOI: https://doi.org/10.1016/j.regg.2013.06.002

Martínez A, Fernández F, Barragán A, Pérez M, Molero M, Gázquez J. Instrumentos para la evalu-ación de la sobrecarga del cuidador familiar de personas con demencia. Eur J Investig Heal. 2015; 5(2):281–92. DOI: https://doi.org/10.30552/ejihpe.v5i2.119

Delgado E, González M, Ballesteros A, Pérez J, Mediavilla M, Aragón R, et al. ¿Existen instrumentos válidos para medir el síndrome del cuidador familiar? Una revisión sistemática de la literatura. Evi-dentia. 2011; 8(33):1-16. 20. Albinsson L, Strang P. Differences in supporting families of dementia patients and cancer patients : a palliative perspective. Palliat Med. 2003; 17(1):359–67. DOI: https://doi.org/10.1191/0269216303pm669oa

Van Der Plas A, Oosterveld M, Pasman H, Onwuteaka B. Relating cause of death with place of care and healthcare costs in the last year of life for patients who died from cancer , chronic obstructive pulmonary disease, heart failure and dementia : A descriptive study using registry data. Palliat Med. 2017; 31(4):338-345. 22. Luengo R, Leal J, Gray A. UK research expenditure on dementia , heart disease , stroke and cancer : are levels of spending related to disease burden ? Eur J Neurol. 2012;19(1):149–54. DOI: https://doi.org/10.1177/0269216316685029

Carrillo M, Sánchez B, Barrera L. Habilidad de cuidado de cuidadores familiares. Index de Enfer-mería. 2014;23(3):129–33. DOI: https://doi.org/10.4321/S1132-12962014000200003

Burns N, Grove S. Investigación en enfermería. España: Elsevier Ltd; 2004. 554 p.

RAE. Definición de Sobrecarga [Internet]. 2017 [Citado el 8 de julio de 2017]. Disponible en: http://dle.rae.es/?id=Y6gdUsk

RAE. Definición de carga[Internet]. 2017 [Citado el 8 de julio de 2017]. Disponible en: http://dle.rae.es/?id=7Wnhao0

Govina O, Kotronoulas G, Mystakidou K, Katsaragakis S, Vlachou E, Patiraki E. Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece. Eur J Oncol Nurs. 2015;19(1):81–88. DOI: https://doi.org/10.1016/j.ejon.2014.06.009

Wajnberg A, Soones T, Smith K, Russell D, Ross J, Federman A. Identifying Sociodemographic Char-acteristics Associated With Burden Among Caregivers of the Urban Homebound. Gerontol Geriatr Med. 2016; 2: 1-7 DOI: https://doi.org/10.1177/2333721416667878

Chappell N, Dujela C, Smith A. Spouse and Adult Child Differences in Caregiving Burden. Can J Ag-ing. 2014; 33(04):462–472. DOI: https://doi.org/10.1017/S0714980814000336

Ångström C, Engvall G, Mullaney T, Nilsson K, Wickart G, Svärd A, et al. Children Undergoing Radio-therapy: Swedish Parents’ Experiences and Suggestions for Improvement. PLoS One. 2015;10(10):1-15. DOI: https://doi.org/10.1371/journal.pone.0141086

Williams L, Mccarthy M. Parent perceptions of managing child behavioural side-effects of cancer treatment: A qualitative study. Child Care Health Dev. 2015;41(4):611–619. 32. Jadidi R, Hekmatpou D, Eghbali A, Memari F, Anbari Z. “Parents a dead end life”: The main experi-ences of parents of children with leukemia. Iran J Nurs Midwifery Res. 2014;19(6):600–606. DOI: https://doi.org/10.1111/cch.12188

Kilicarslan E, Akgun E. European Journal of Oncology Nursing Information-seeking behaviours and decision-making process of parents of children with cancer. Eur J Oncol Nurs. 2017;17(2):176–83. DOI: https://doi.org/10.1016/j.ejon.2012.03.001

Andrade S, Melo M, Rodrigues M, Alves R. Qualidade de Vida e Sobrecarga de Cuidadores de Crian-ças com Câncer. Psicol Ciência e Profissão. 2014;34(4):1014–1031. DOI: https://doi.org/10.1590/1982-370002332013

Barrera M, Granek L, Shaheed J, Nicholas D, Beaune L, D’Agostino N, et al. The Tenacity and Tenu-ousness of Hope. Cancer Nurs. 2013;36(0):408–416. DOI: https://doi.org/10.1097/NCC.0b013e318291ba7d

Klassen A, Gulati S, Granek L, Rosenberg Z, Watt L, Sung L, et al. Understanding the health impact of caregiving: A qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res. 2012;21(9):1595–605. DOI: https://doi.org/10.1007/s11136-011-0072-8

Ljungman L, Boger M, Ander M, Ljótsson B, Cernvall M, Von Essen L, et al. Impressions that last: Particularly negative and positive experiences reported by parents five years after the end of a child’s successful cancer treatment or death. PLoS One. 2016;11(6):1–18. DOI: https://doi.org/10.1371/journal.pone.0157076

Williams L, McCarthy M, Eyles D, Drew S. Parenting a child with cancer: Perceptions of adolescents and parents of adolescents and younger children following completion of childhood cancer treatment. J Fam Stud. 2013;19(1):80–89. DOI: https://doi.org/10.5172/jfs.2013.19.1.80

Yildirim H, Yilmaz M, Ozsoy S, Kantar M, Cetingul N. Experiences of Parents With the Physical Care Needs at Home of Children With Cancer: A Qualitative Study. Cancer Nurs. 2013;36(5):385–393. DOI: https://doi.org/10.1097/NCC.0b013e3182a0e221

Wakefield C, McLoone J, Evans N, Ellis S, Cohn R. It’s More than Dollars and Cents: The Impact of Childhood Cancer on Parents Occupational and Financial Health. J Psychosoc Oncol. 2014;32(5):602–621. DOI: https://doi.org/10.1080/07347332.2014.936653

Nikfarid L, Rassouli M, Borimnejad L, Alavimajd H. Experience of chronic sorrow in mothers of children with cancer: A phenomenological study. Eur J Oncol Nurs. 2017;28:98–106. DOI: https://doi.org/10.1016/j.ejon.2017.02.003

Granek L, Rosenberg Z, Dix D, Klaassen R, Sung L, Cairney J, et al. Caregiving, single parents and cumulative stresses when caring for a child with cancer. Child Care Health Dev [Internet]. 2014 [Citado el 16 de julio de 2017];40(2):184–94. Disponible en: http://doi.wiley.com/10.1111/cch.12008 DOI: https://doi.org/10.1111/cch.12008

Aburn G, Gott M. Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: a narrative review. J Pediatr Oncol Nurs. 2011;28(5):300–305. DOI: https://doi.org/10.1177/1043454211409585

Frizzo S, Quintana M, Salvagni A. Significações Dadas pelos progenitores acerca do diagnóstico de cancer dos filhos. Psicol Ciência e Profissão. 2015;35(3):959–972. DOI: https://doi.org/10.1590/1982-3703001772013

Nyborn JA, Olcese M, Nickerson T, Mack JW. “Don’t Try to Cover the Sky with Your Hands”: Par-ents’ Experiences with Prognosis Communication About Their Children with Advanced Cancer. J Palliat Med. 2016;19(6):626–631. DOI: https://doi.org/10.1089/jpm.2015.0472

Benedetti G, Higarashi I, Sales C. Vivências de pais/mães de crianças e adolescentes com câncer: Uma abordagem fenomenológico-existencial heideggeriana. Texto e Context Enferm. 2015;24(2):554–562. DOI: https://doi.org/10.1590/0104-07072015002702014

Kelly P, Kelly D. Childhood cancer-parenting work for British Bangladeshi families during treatment : An ethnographic study. Int J Nurs Stud. 2013;50(7):933–944. DOI: https://doi.org/10.1016/j.ijnurstu.2012.11.004

Moules N, Laing C, Mccaffrey G, Tapp D, Strother D. Grandparents ’ Experiences of Childhood Can-cer , Part 1 : Doubled and Silenced. J Pediatr Oncol Nurs. 2012;29(3):119–132. DOI: https://doi.org/10.1177/1043454212439626

Salmon P, Hill J, Ward J, Gravenhorst K, Eden T, Young B. Faith and Protection: The Construction of Hope by Parents of Children with Leukemia and Their Oncologists. Oncologist. 2012;17(1):398–404. DOI: https://doi.org/10.1634/theoncologist.2011-0308

Renner L, McGill D. Exploring factors influencing health-seeking decisions and retention in childhood cancer treatment programmes: perspectives of parents in Ghana. Ghana Med J. 2016;50(3):149–156. DOI: https://doi.org/10.4314/gmj.v50i3.6

Harding R, Gao W, Jackson D, Pearson C, Murray J, Higginson I. Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury. J Pain Symptom Man-age. 2015;50(4):445–452. DOI: https://doi.org/10.1016/j.jpainsymman.2015.04.005

Costa G, Espinosa M, Cristòfol R. Caregiver burden in end-of-life care: Advanced cancer and final stage of dementia. Palliat Support Care. 2015;13(03):583–589. DOI: https://doi.org/10.1017/S1478951513001259

Williams A, McCorkle R. Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care. 2011;9(3):315–325. DOI: https://doi.org/10.1017/S1478951511000265

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