Burden on family caregivers of children and adolescent in immediate post hematopoietic stem cell transplantation
Abstract
Objective: To evaluate the burden on family caregivers of children and adolescents in immediate post hematopoietic stem cell transplantation.
Method: Study of quantitative nature, of analytical and traverse type, accomplished in two institutions of health with 31 caregivers of children and adolescents in immediate post transplantation. The data collection was accomplished between October of 2018 and June of 2019. The caregivers' social-demographic profile was characterized, and the burden was evaluated by Caregiver Burden Scale. The descriptive statistics and the Spearman correlation were used.
Results: It was obtained a burden global score of 2.4/4; the domains with larger scores were: general stress and frustration, both with 2.8/4.
Conclusion: The understanding of how the family faces the challenges imposed by the immediate post hematopoietic stem cell transplantation guides the multiprofessional team a care centered in the family and to offer maximum support and guidance to the caregiver.
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References
Appelbaum FR. Transplante de células hematopoiéticas. In: Longo DL. Hematologia e oncologia de Harrison. 2. ed. Porto Alegre: Artmed; 2015.
Oliveira JS, Cunha DO, Santos CS, Morais RLGL. Repercussões na vida de cuidadores de crianças e adolescentes com doença oncológica. Cogitare Enferm. 2018 [citado 2019 abr 23];23(2):e51589. doi: http://dx.doi.org/10.5380/ce.v23i2.51589.
Jesus ITM, Orlandi AAS, Zazzetta MS. Sobrecarga, perfil e cuidado: cuidadores de idosos em vulnerabilidade social. Rev Bras Geriatr Gerontol. 2016 [citado 2019 out 28];21(2):199-209. Disponível em: http://www.scielo.br/pdf/rbgg/v21n2/pt_1809-9823-rbgg-21-02-00194.pdf.
Rezende G, Gomes CA, Rugno FC, Carvalho RC, De Carlo MMRP. Sobrecarga de cuidadores de pessoas em cuidados paliativos: revisão integrativa da literatura. Medicina (Ribeirão Preto). 2016 [citado 2019 abr 30];49(4):344-5. Disponível em: http://www.revistas.usp.br/rmrp/article/view/122726/119211.
Monteiro EA, Mazin SC, Dantas RAS. Questionário de avaliação da sobrecarga do cuidador informal: validação para o Brasil. Rev Bras Enferm. 2015 [citado 2019 nov 8]; 68(3):421-8. Disponível em: https://www.scielo.br/pdf/reben/v68n3/0034-7167-reben-68-03-0421.pdf.
Denzen EM, Thao V, Hahn T, Lee SJ, McCarthy PL, Rizzo DR et al. Financial impact of allogeneic hematopoietic cell transplantation on patients and families over 2-years: results from a multicenter pilot study. Bone Marrow Transplant. 2016;51(9):1233-40.
Abreu AISCS; Costa Júnior AL. Family caregiver workload with the oncologic patient and nursing. Rev Enferm UFPE. 2018 [citado 2019 set 6];12(4):976-86. doi: https://doi.org/10.5205/1981-8963-v12i4a234371p976-986-2018.
Vale EG, Pagluica LMF. Construção de um conceito de cuidado em enfermagem: contribuição para o ensino de graduação. Rev Bras Enferm. 2011 [citado 2019 nov 15]; 64(1):106-13. Disponível em: http://www.scielo.br/pdf/reben/v64n1/v64n1a16.pdf.
Fife BL, Von Ah DM, Spath ML, Weaver MT, Yang Z, Stump T et al. Preliminary efficacy of a brief family intervention to prevent declining quality of life secondary to parental bone marrow transplantation. Bone Marrow Transplant. 2017 [citado 2019 nov 15];52(2):285-91. doi:10.1038/bmt.2016.267.
Schnepper RA, Kalinke LP, Sarquis LMM, Mantovani MF, Proença SFFS. Qualidade de vida dos cuidadores principais de pacientes pós-transplante de células-tronco hematopoéticas. Texto Contexto Enferm. 2018 [citado 2019 nov 11];27(3):e2850016. Disponível em: http://www.scielo.br/pdf/tce/v27n3/0104-0707-tce-27-03-e2850016.pdf.
Elmstahl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil. 1996 [cited 2019 Nov 15];77(2):177-82. doi:10.1016/s0003-9993(96)90164-1.
Medeiros MMC, Ferraz MB, Quaresma MR. The caregiver burden scale: a Brazilian cultural adaptation and validation. Br J Rheumatol. 1998;38:193-9.
Nascimento JD, Lacerda MR, Girardon-Perlini NMO, Camargo TB, Gomes IG, Zatonil DCP. A vivência do cuidado familiar em casas transitórias de apoio. Rev Bras Enferm. 2016 [citado 2019 out 8];69(3):538-45. Disponível em: https://www.scielo.br/pdf/reben/v69n3/0034-7167-reben-69-03-0538.pdf.
Brandão FSR, Costa BGS, Cavalcanti ZR, Bezerra MR, Alencar LCA, Leal MCC. Overload of elderly people caregivers assisted by a home care service. Rev Enferm UFPE. 2017 [citado 2019 nov 10];11(1):272-9. Disponível em: https://periodicos.ufpe.br/revistas/ revistaenfermagem/article/viewFile/11905/14385.
Dias BC, Ichisato SMT, Marchetti MA, Neves ET, Higarashi IH, Marcon SS. Desafios de cuidadores familiares de crianças com necessidades de cuidados múltiplos, complexos e contínuos em domicílio. Esc Anna Nery. 2019 [citado 2019 nov 9];23(1):e20180127. Disponível em: http://www.scielo.br/pdf/ean/v23n1/pt_1414-8145-ean-23-01-e20180127.pdf.
Rezende TCB, Coimbra AMV, Costallat LTV, Coimbra IB. Factors of high impacts on the life of caregivers of disabled elderly. Arch Gerontol Geriatr. 2010 [cited 2019 Nov 15];51:76-80. doi: https://doi.org/10.1016/j.archger.2009.08.003.
Lemos DN, Gazzola MJ, Ramos RL. Cuidando do paciente com Alzheimer: o impacto da doença no cuidador. Saúde Soc. 2006 [citado 2019 nov 10];5(3):170-9. Disponível em: https://www.scielo.br/pdf/sausoc/v15n3/14.pdf.
Rezende G, Gomes CA, Rugno FC, Eva G, Lima NKC, De Carlo MMRP. Burden on family caregivers of the elderly in oncologic palliative care. Eur Geriatr Med. 2017 [cited 2019 Nov 10];8(4):337-41. doi: http://dx.doi.org/10.1016/j.eurger.2017.06.001.
Gomes IM, Lacerda MR, Hermann AP, Rodrigues JAP, Zatoni DCP, Tonin L. Cuidados realizados pelo familiar cuidador da criança em pós-transplante de células-tronco hematopoiéticas. Rev Lat Am Enfermagem. 2019 [citado 2020 jan 25];27:e3120. Disponível em: http://www.scielo.br/pdf/rlae/v27/pt_0104-1169-rlae-27-e3120.pdf.
Almico T, Faro A. Enfrentamento de cuidadores de crianças com câncer em processo de quimioterapia. Psicol Saúde Doenças. 2014 [citado 2020 jan 24];15(3):723-37. Disponível em: http://www.scielo.mec.pt/pdf/psd/v15n3/v15n3a13.pdf.
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