Educación en el cuidador del niño con cáncerUna revisión

  1. Carreño-Moreno, Sonia
  2. Muñoz-Moreno, Laura
  3. Sastoque-Valenzuela, Katherine
  4. Torres-Pinto, Xiomara
Revista:
Revista Facultad Ciencias de la Salud: Universidad del Cauca

ISSN: 2538-9971,  0124-308X

Año de publicación: 2015

Título del ejemplar: Revista Facultad Ciencias de la Salud, Universidad del Cauca

Volumen: 17

Número: 2

Páginas: 16-22

Tipo: Artículo

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Otras publicaciones en: Revista Facultad Ciencias de la Salud: Universidad del Cauca

Resumen

Objetivo: Analizar estudios publicados acerca de la educación de los cuidadores de niños con cáncer. Métodos: Se realizó una revisión de 19 estudios publicados en revistas indexadas. La lectura e integración de los hallazgos se realizaron con el programa Atlas Ti. Versión 6.0. Resultados: Se encontró que además de la información de la patología, los cuidadores necesitan ser educados para la toma de decisiones y búsqueda de soporte social, en un contexto de interacción que permita una comunicación abierta, concreta, clara y acorde a las necesidades. Los cuidadores reclaman profesionales compasivos y dispuestos a escuchar, que no los abrumen con gran cantidad de información, sino que los acompañen en un proceso continuo. Conclusiones: Cada cuidador tiene necesidades particulares de educación y en la medida que estas sean atendidas se pueden mitigar los impactos negativos derivados de su rol. Esta revisión, constituye un insumo para orientar la educación en cuidadores de niños con cáncer, pues refleja una panorámica de sus necesidades y la forma como desean que sean atendidas.

Referencias bibliográficas

  • OPS. Nueva publicación de la OPS/OMS busca contribuir a la detección temprana del cáncer infantil. Disponible en: http://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. [Acceso 9 de mayo de 2015]
  • Sullivan R, Kowalczyk, Agarwal B, Ladenstein R, Fitzgerald E, Barr R, et al. New policies to address the global burden of childhood cancers. The Lancet Oncology. 2013; 14(3): 125-135.
  • Moorhead S, Johnson M, Maas M (eds.) Proyecto de Resultados de Iowa. Clasificación de Resultados de Enfermería (NOC).4 ed. Madrid: Elsevier. 2009.
  • McCarthy B. Family members of patients with cancer: What they know, how they know and what they want to know. Eur J Oncol Nurs. 2011; 15(5): 428-441.
  • Washington K, Meadows S, Elliott S, Koopman R. Information needs of informal caregivers of older adults with chronic health conditions. Patient Educ Couns. 2011; 83(1): 37-44.
  • Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: a systematic literature review. Patient Educ Couns.. 2009; 77(2):179-186.
  • Rutten L, Arora N, Bakos A, Aziz N, Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Educ Couns 2005; 57(3): 250–261.
  • Ewing LJ, Long K, Rotondi A, Howe C, Bill L, Marsland A. Brief report:A pilot study of a web-based resource for families of children with cancer. J Pediatr Psychol. 2009; 34(5):523-529.
  • Caliskan M, Ozsoy S. Effectiveness of a discharge-planning program and home visits for meeting the physical care needs of children with cancer. Support Care Cancer. 2010; 18(2):243-253.
  • Hoekstra-Weebers J, Heuvel F, Jaspers J, Kamps W, Klip E. Brief report: an intervention program for parents of pediatric cancer patients: a randomized controlled trial. J Pediatr Psychol. 1998;23(3):207-214.
  • Sahler O, Varni J, Fairclough D, Butler R, Noll R, Dolgin M, et al. Problem-solving skills training for mothers of children with newly diagnosed cancer: a randomized trial. J Dev Behav Pediatr. 2002; 23(2):77-86.
  • Stehl M, Kazak A, Alderfer M, Rodriguez A, Hwang W, Pai A, et al. Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. J Pediatr Psychol. 2009;34(8):803-816.
  • Othman A, Blunden S, Mohamad N, Mohd Hussin Z, Jamil Osman Z. Piloting a psycho-education program for parents of pediatric cancer patients in Malaysia. Psychooncology. 2010; 19(3):326-331.
  • Duncan E, Gidron Y, Rabin E, Gouchberg L, Moser A, Kapelushnik J. The effects of guided written disclosure on psychological symptoms among parents of children with cancer. Journal of Family Nursing. 2007;13(3):370-384.
  • Martino M, Freda M, Camera F. Effects of Guided Written Disclosure Protocol on mood states and psychological symptoms among parents of off-therapy acute lymphoblastic leukemia children. Journal Health Psychology. 2013; 18(6):727-736.
  • Dixon-Woods M, Agarwal S, Jones D, Young B, Sutton A. Synthesising qualitative and quantitative evidence: a review of possible methods.
  • Journal of Health Services Research & Policy. 2005; 10(1):45–53.
  • Astete B. Lectura crítica de artículos originales en salud. Medicina de Familia. 2001; 2(1): 81-90
  • Njuguna F, Mostert S, Seijffert A, Musimbi J, Langat S, van der Burgt R, et al. Parental experiences of childhood cancer treatment in Kenya. Support Care Cancer. 2015; 23(5):1251-1259.
  • Gibbins J, Steinhardt K, Beinart H. A systematic review of qualitative studies exploring the experience of parents whose child is diagnosed and treated for cancer. J Pediatr Oncol Nurs. 2012; 29(5):253-271.
  • Kerr L, Harrison M, Medves J, Tranmer J, Fitch M. Understanding the supportive care needs of parents of children with cancer: an approach to local needs assessment. J Pediatr Oncol Nurs. 2007; 24(5):279-293.
  • Aburn, Gott M. Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: a narrative review. J Pediatr Oncol Nurs. 2011 Sep-Oct; 28(5):300-305.
  • Mitchell W, Clarke S, Sloper P. Care and support needs of children and young people with cancer and their parents. Psychooncology. 2006; 15(9):805-816.
  • Clarke JN, Fletcher P. Communication issues faced by parents who have a child diagnosed with cancer. J Pediatr Oncol Nurs. 2003; 20(4):175-191.
  • Ringnér A, Jansson L, Graneheim U. Parental Experiences of Information with in Pediatric Oncology. J Pediatr Oncol Nurs. 2011; 28(4):244-251.
  • Maree J, Parker S, Kaplan L, Oosthuizen J. The Information Needs of South African Parents of Children with Cancer. J Pediatr Oncol Nurs. 2015; 1-9
  • Vetsch J, Rueegg C, Gianinazzi M, Bergsträsser E, von der Weid N, Michel G; Swiss Pediatric Oncology Group (SPOG). Information needs in parents of long-term childhood cancer survivors. Pediatric Blood Cancer. 2015; 62(5):859-866.
  • Sigurdardottir A, Svavarsdottir E, Rayens M, Gokun Y. The impact of a web-based educational and support intervention on parents’ perception of their children’s cancer quality of life: an exploratory study. J Pediatr Oncol Nurs. 2014; 31(3):154-165.
  • Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E. Experiences of parents with caring for their child after a cancer diagnosis. J Pediatr Oncol Nurs. 2011; 28(3):143-153.
  • Kilicarslan-Toruner E, Akgun-Citak E. Information-seeking behaviours and decision-making process of parents of children with cancer. Eur J Oncol Nurs. 2013; 17(2):176-183.
  • Wong M, Chan S. The qualitative experience of Chinese parents with children diagnosed of cancer. Journal Clinical Nursing. 2006;15(6):710-717.
  • Duarte D, Yumi L, Alves L, Regina S, Rivero M, Lopes E. The meaming of netropenia and homecare need according to caregivers of children with cáncer. Rev Latino-am Enfermagem. 2009; 17(6): 933-939.
  • Vinitha Jithoo. The Childhood Cancer Conundrum: Parental Communication and Information-Seeking. South African Journal of Psychology. 2010; 40(3): 351-360.
  • Kästel A, Enskär K, Björk O.Parents’ views on information in childhood cancer care. Eur J Oncol Nurs. 2011; 15(4):290-295.
  • Ringnér A, Jansson L, Graneheim UH. Professional caregivers’ perceptions of providing information to parents of children with cancer. J Pediatr Oncol Nurs. 2011 Jan-Feb; 28(1):34-42.
  • Ljungman G, McGrath P, Cooper E, Widger K, Ceccolini J, Fernandez C, et al. Psychosocial needs of families with a child with cancer. J Pediatr Hematol Oncol. 2003; 25(3):223-231.
  • Espín Andrade AM. Factores de riesgo de carga en cuidadores informales de adultos mayores con demencia. Rev Cuba Salud Pública. 1999, Editorial Ciencias Médicas; 2012;38(3):493–402.
  • Bañobre González A, Vázquez Rivera J, Outeiriño Novoa S, Rodríguez González M, González Pascual M, Graña Álvarez J, et al. Efectividad de la intervención educativa en cuidadores de pacientes dependientes en diálisis y valoración de la carga. Rev la Soc Española Enfermería Nefrológica. Sociedad Española de Enfermería Nefrológica; 8(2):156–65.
  • Linde JMM, Velasco M de los ÁI, Velasco BI. El apoyo social como modulador de la carga del cuidador de enfermos de Alzheimer. Psicol y Salud. 2014 Jan;15(1):33–43.
  • Rodríguez E, Dunn M, Zuckerman T, Vannatta K, Gerhart C, Compas B. Cancer-Related Sources of Stress for Children With Cancer and Their Parents. Journal of Pediatric Psychology.2012 37(2):185–197.
  • Eder M, Yamokoski A, Wittmann P, Kodish E. Improving informed consent: suggestions from parents of children with leukemia. Pediatrics. 2007; 119(4):849-859.
  • Goldsmith J, Wittenberg E, Platt C, Iannarino N, Reno J. Family caregiver communication in oncology: advancing a typology. Psychooncology. 2015.
  • Khoury M, Huijer H, Doumit M. Lebanese parents’ experiences with a child with cancer. Eur J Oncol Nurs.. 2013; 17(1):16-21.
  • Mazor K, Beard R, Alexander G, Arora N, Firneno C, Gaglio B, et al. Patients’ and family members’ views on patient-centered communication during cancer care. Psychooncology. 2013; 22(11):2487-2495.
  • Svavarsdottir EK, Sigurdardottir A. The feasibility of offering a family level intervention to parents of children with cancer. Scand J Caring Sci. 2005; 19(4):368–72.
  • Yilmaz MC, Ozsoy S. Effectiveness of a discharge-planning program and home visits for meeting the physical care needs of children with cancer. Support Care Cancer. 2010;18(2):243–53.
  • Mullins LL, Fedele D a, Chaffin M, Hullmann SE, Kenner C, Eddington a R, et al. A clinic-based interdisciplinary intervention for mothers of children newly diagnosed with cancer: a pilot study. J Pediatr Psychol. 2012; 37(10):1104–15.
  • Dragone MA, Bush PJ, Jones JK, Bearison DJ, Kamani S. Development and evaluation of an interactive CD-ROM for children with leukemia and their families. Patient Educ Couns. 2002; 46(4):297–307.
  • Hocking M, Kazak A, Schneider S, Barkman D, Barakat L, Deatrick J. Parent perspectives on family-based psychosocial interventions in pediatric cancer: a mixed-methods approach. Support Care Cancer. 2014;22(5):1287-94.
  • James K, Keegan-Wells D, Hinds P, Kelly K, Bond D, Hall B, et al. Perceptions of caregiving demands. J Pediatr Oncol Nurs. 2001; 19(6): 218-228.
  • Fletcher P, Schneider M, Harry R. How do I cope? Factors affecting mothers’ abilities to cope with pediatric cancer. J Pediatr Oncol Nurs. 2010; 27(5):285-98.
Fuente de los datos: Dialnet