Duelo en el cuidador del niño fallecido por cáncer: revisión exploratoria
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Publicado:
feb. 15, 2019
Palabras clave:
pesar, cuidadores, padres, neoplasia, niño, muerte
Contenido principal del artículo
Resumen
El objetivo de esta revisión fue sintetizar el abordaje metodológico de estudio e integrar los hallazgos del proceso de duelo en cuidadores de niños fallecidos por cáncer. Se realizó una revisión exploratoria de literatura de 19 estudios publicados en revistas indexadas entre el 2010 y 2017. Los hallazgos fueron tratados con técnicas de codificación abierta inductiva. Los resultados evidenciaron un abordaje mayormente cualitativo, con participación de padre y madre, con un año entre la muerte del niño y el ingreso al estudio. Los resultados de los estudios revelaron que debido a que el duelo se vive como respuesta a la ruptura física del vínculo con el niño, es a través del trabajo sobre vínculos que el duelo puede superarse. Los vínculos clave son los que se tienen con el niño fallecido, con los hijos vivos, con el cónyuge, con la familia y el equipo de salud. Por lo que se requiere acompañamiento continuo y compasivo al cuidador desde el momento del diagnóstico del niño con cáncer, que permita construir vínculos asertivos. Posterior a la muerte del niño, es necesario mantener la continuidad del cuidado y propender por que el cuidador participe en grupos de apoyo.
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Cómo citar
Carreño-Moreno, S., Chaparro-Díaz, L., Carrillo, G. M., & Gómez-Ramírez, O. J. (2019). Duelo en el cuidador del niño fallecido por cáncer: revisión exploratoria. Duazary, 16(2), 281–294. https://doi.org/10.21676/2389783X.2755
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Artículo de revisión
No se permite un uso comercial de la obra original ni de las posibles obras derivadas, la distribución de las cuales se debe hacer con una licencia igual a la que regula la obra original.
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2. International Agence for Research on Cancer. International incidence of childhood cancer [Internet]. [citado 2018 Jun 1]. Disponible en: http://iicc.iarc.fr/about/iicc3_series.php
3. International Agence for Research on Cancer. GLOBOCAN 2012 [Internet]. [citado 2018 Jun 18]. Disponible en: http://globocan.iarc.fr/Pages/fact_sheets_cancer.aspx
4. Patel S, Fernandez N, Wong A, Mullins W, Turk A, Dekel N, et al. Changes in self-reported distress in end-of-life pediatric cancer patients and their parents using the pediatric distress thermometer. Psychooncology [Revista en la internet]. 2014 [Citado 2018 Jun 1]; 23(5): 592–596. Doi: http://doi.wiley.com/10.1002/pon.3469.
5. Nam G, Warner E, Morreall D, Kirchhoff A, Kinney A, Fluchel M. Understanding psychological distress among pediatric cancer caregivers. Support Care Cancer [Revista en la internet]. 2016 [citado 2018 Jul 16]; 24(7): 3147–3155. Doi: http://doi.org/10.1007/s00520-016-3136-z
6. Lau S, Lu X, Balsamo L, Devidas M, Winick N, Hunger S, et al. Family life events in the first year of acute lymphoblastic leukemia therapy: a children’s oncology group report. Pediatr Blood Cancer. 2014;61(12):2277–2284. Doi: http://dor.org/10.1002/pbc.25195.
7. Dokken D. Making Meaning after the Death Of a Child: Bereaved Parents Share Their Experiences. Pediatr Nurs. 2013; 39(3): 147–50.
8. Rosenberg A, Dussel V, Kang T, Geyer J, Gerhardt C, Feudtner C, et al. Psychological Distress in Parents of Children With Advanced Cancer. JAMA Pediatr [Revista en la internet]. 2013 [citado 2018 Jun 1]; 167(6): 537. Doi: http//doi.org/10.1001/jamapediatrics.2013.628
9. Yoshida S, Amano K, Ohta H, Kusuki S, Morita T, Ogata A, et al. A comprehensive study of the distressing experiences and support needs of parents of children with intractable cancer. Jpn J Clin Oncol [Revista en la internet]. 2014 [citado 2018 Jun 1]; 44(12):1181–1188.Doi: http://doi.org/10.1093/jjco/hyu140.
10. Friedrichsdorf S, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved Quality of Life at End of Life Related to Home-Based Palliative Care in Children with Cancer. J Palliat Med [Revista en la internet]. 2015 [citado 2018 Jun 1]; 18(2): 143–150. Doi: http://doi.org/10.1089/jpm.2014.0285.
11. Lützau P, Hechler M, Metzing S, Wolfe J. Children Dying from Cancer: Parents’ perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions. J Palliat Care. 2012; 28(4):274–281.
12. Robert R, Zhukovsky D, Mauricio R, Gilmore K, Morrison S, Palos G. Bereaved Parents’ Perspectives on Pediatric Palliative Care. J Soc Work End Life Palliat Care [Revista en la internet]. 2012 [citado 2018 Feb 5]; 8(4): 316–338. Doi: http://doi.org/10.1080/15524256.2012.732023.
13. Rogers C, Floyd F, Seltzer M, Greenberg J, Hong J. Long-term effects of the death of a child on parents’ adjustment in midlife. J Fam Psychol [Revista en la internet]. 2008 [citado 2018 Feb 5]; 22(2): 203–211. Doi: http://doi.org/10.1080/15524256.2012.732023.
14. Cacante C, Arias Valencia M. Asking for support: the case of families with children suffering cancer. Investig y Educ en Enfermería. 2009 jul; 27(2):170–180. Disponible en: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0120-53072009000200002
15. Zetumer S, Young I, Shear M, Skritskaya N, Lebowitz B, Simon N, et al. The impact of losing a child on the clinical presentation of complicated grief. J Affect Disord [Revista en la internet]. 2015 [citado 2018 Feb 5]; (170):15–21. Doi: http://doi.org/10.1016/j.jad.2014.08.021.
16. Buckley C. When Sorrow Never Stops. Chronic Sorrow After the Death of a Child. J Christ Nurs [Revista en la internet]. 2016 [citado 2018 Feb 5]; 33(1):22–25. Disponible en: http://www.ncbi.nlm.nih.gov/pubmed/26817366
17. Sandler I, Tein J, Cham H, Wolchik S, Ayers T. Long-term effects of the Family Bereavement Program on spousally bereaved parents: Grief, mental health problems, alcohol problems, and coping efficacy. Dev Psychopathol [Revista en la internet]. 2016 [citado 2018 Feb 5]; 28(3): 801–818. Doi: http://dpi.org/10.1017/S0954579416000328
18. Price J, Jones A. Living Through the Life-Altering Loss of a Child: A Narrative Review. Issues Compr Pediatr Nurs [Revista en la internet]. 2015 [citado 2018 Feb 5]; 38(3):222–240. Doi: http://dpi.org/10.3109/01460862.2015.1045102.
19. Joronen K, Kaunonen M, Aho A. Parental relationship satisfaction after the death of a child. Scand J Caring Sci [Revista en la internet]. 2016 [citado 2018 Feb 5]; 30(3):499–506. Doi: http://doi.org/10.1111/scs.12270.
20. DeCinque N, Monterosso L, Dadd G, Sidhu R, Macpherson R, Aoun S. Bereavement support for families following the death of a child from cancer: experience of bereaved parents. J Psychosoc Oncol. 2006; 24(2):65–83. Doi: http://doi.org/10.1300/J077v24n02_05
21. Lichtenthal W, Corner G, Sweeney C, Wiener L, Roberts K, Baser R, et al. Mental Health Services for Parents Who Lost a Child to Cancer: If We Build Them, Will They Come? J Clin Oncol [Revista en la internet]. 2015 [citado 2018 Jun 2]; 33(20):2246–2253. Doi: http://dpi.org/10.1200/JCO.2014.59.0406
22. Williams A, McCorkle R. Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care [Revista en la internet]. 2011[citado 2018 Jun 20]; 9(3):315–325. Doi: http://doi.org/10.1017/S1478951511000265
23. Rosenberg A, Baker K, Syrjala K, Wolfe J. Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer [Revista en la internet]. 2012 [citado 2018 Jun 2]; 58(4):503–512. Doi: http://doi.org/10.1002/pbc.23386
24. Grassi L. Bereavement in families with relatives dying of cancer. Curr Opin Support Palliat Care [Revista en la internet]. 2007 [citado 2018 Jun 20];1(1):43–49. Doi: http://doi.org/10.1097/SPC.0b013e32813a3276
25. Manchado R, Tamames S, López M, Mohedano L, D´Agostino M, Veiga de Cabo J. Revisiones Sistemáticas Exploratorias- Scoping review. Med Segur Trab (Madr) [Revista en la internet]. 2009 [citado 2018 Feb 5]; 55(216):12–19. Disponible en: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S0465-546X2009000300002
26. Sanz J, Veiga de Cabo J, Rojo C, D´Agostino M, Wanden C, Espulgues Pellicer J, et al. Los filtros metodológicos: aplicación a la búsqueda bibliográfica en la medicina del trabajo española. Med Segur Trab. 54(211):75–83. Disponible en: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S0465-546X2008000200009
27. Burns N, Grove S. Investigación en enfermería. Quinta edición. España: editorial Elsevier Ltd; 2012.
28. Cáceres P. Análisis cualitativo de contenido: una alternativa metodológica alcanzable. Psicoperspectivas [Revista en la internet]. 2003 [citado 2017 Dec 27]; 2:53–82. Disponible en: http://www.psicoperspectivas.cl/index.php/psicoperspectivas/article/viewFile/3/3
29. Congreso de Colombia. LEY 44 DE 1993 [Internet]. Congreso de Colombia. 1993 [citado 2015 Jul 14]. Disponible en: http://cdr.com.co/phocadownload/ley 44 de 1993.pdf
30. O’Connor K, Barrera M. Changes in parental self-identity following the death of a child to cancer. Death Stud [Revista en la internet]. 2014; 38(6):404–411. Disponible en: http://www.ncbi.nlm.nih.gov/pubmed/24666147. doi.org/10.1080/07481187.2013.801376
31. Thompson A, Miller K, Barrera M, Davies B, Foster T, Gilmer M, et al. A Qualitative Study of Advice From Bereaved Parents and Siblings. J Soc Work End Life Palliat Care [Revista en la internet]. 2011; 7(2–3):153–172. Doi: http://doi.org/10.1080/15524256.2011.593153
32. Alam R, Barrera M, D’Agostino N, Nicholas D, Schneiderman G. Bereavement Experiences of Mothers and Fathers Over Time After the Death of a Child Due to Cancer. Death Stud. 2012;36(1):1–22.
33. Van der Geest I, Van Den Heuvel M, Van Vliet L, Pluijm S, Streng I, Michiels E, et al. Talking about Death with Children with Incurable Cancer: Perspectives from Parents. J Pediatr [Revista en la internet]. 2014;167(6):1320–1326. Doi: http://doi.org/10.1016/j.jpeds.2015.08.066
34. Price J, Jordan J, Prior L, Parkes J. Living through the death of a child: A qualitative study of bereaved parents’ experiences. Int J Nurs Stud [Revista en la internet]. 2011; 48(11):1384–1392. Doi: http://dx.doi.org/10.1016/j.ijnurstu.2011.05.006.
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