Overburden of the caregiver of cancer patients in palliative care

Rafael Augusto Paes Lima Rocha, Elisângela de Moraes Rocha, Marli Elisabete Machado, Andressa de Souza, Felipe Barreto Schuch

Abstract


Objective: to correlate the impact of caregiver burden on the quality of life of cancer patients in palliative care. Method: this is a quantitative, descriptive, observational, cross-sectional study with 50 cancer patients in palliative care and 50 caregivers. A sociodemographic questionnaire was applied for caregivers and family members, the Zarit Burden Interview Scale, the EORT QLQ –C15-PAL Questionnaire, the Wagnild & Young Adapted Resilience Scale and the Catastrophic Pain Thinking Scale, using the t Test, Spearman's correlation, Pearson's correlation and linear regression. The SPSS program, version 20.0, was used for data analysis. Results: it is reported that the domains of quality of life that showed an independent association with caregiver burden were fatigue, lack of appetite, constipation and the global impact. An independent association was maintained due to the catastrophism of the patient's pain with the burden of the caregiver, there was no association between the patient's resilience and the burden of the caregiver and 40% of the caregivers presented severe burden. Conclusion: it is noted that the increase in caregiver burden reduces the quality of life of cancer patients in palliative care. Descriptors: Caregivers Burden; Quality of Life; Palliative Care; Oncology; Cancer Pain; Resiliencia.

Resumo

Objetivo: correlacionar o impacto da sobrecarga do cuidador na qualidade de vida do paciente oncológico em cuidados paliativos Método: trata-se de um estudo quantitativo, descritivo, observacional, transversal, com 50 pacientes oncológicos em cuidados paliativos e 50 cuidadores. Aplicou-se um questionário sociodemográfico para os cuidadores e familiares, a Escala Zarit Burden Interview, o Questionário EORT QLQ –C15-PAL, a Escala de Resiliência Adaptada de Wagnild & Young e a Escala de Pensamento Catastrófico da Dor, uso do Teste t, Correlação de Spearman, Correlação de Pearson e regressão linear. Utilizou-se o Programa SPSS, versão 20.0 para a análise dos dados. Resultados: informa-se que os domínios da qualidade de vida que mostraram associação independente com a sobrecarga do cuidador foram a fatiga, a falta de apetite, a constipação e o impacto global. Manteve-se associação independente pelo catastrofismo da dor do paciente com a sobrecarga do cuidador, não houve associação entre a resiliência do paciente e a sobrecarga do cuidador e 40% dos cuidadores apresentaram sobrecarga severa. Conclusão: nota-se que o aumento da sobrecarga do cuidador diminui a qualidade de vida do paciente oncológico em cuidados paliativos. Descritores: Sobrecarga de Cuidadores; Qualidade de Vida; Cuidados Paliativos; Oncologia; Dor do Câncer, Resiliência.

Resumen

Objetivo: correlacionar el impacto de la carga del cuidador en la calidad de vida de los pacientes oncológicos en cuidados paliativos Método: este es un estudio cuantitativo, descriptivo, observacional, transversal con 50 pacientes oncológicos en cuidados paliativos y 50 cuidadores. Se aplicó un cuestionario sociodemográfico para cuidadores y miembros de la familia, la Escala Zarit Burden Interview, el Cuestionario EORT QLQ-C15-PAL, la Escala de Resiliencia Adaptada Wagnild& Young y la Escala de Pensamiento de Dolor Catastrófico, usando la Prueba t, Correlación de Spearman, la Correlación de Pearson y regresión lineal. El programa SPSS, versión 20.0, se utilizó para el análisis de datos. Resultados: se informa que los dominios de calidad de vida que mostraron una asociación independiente con la carga del cuidador fueron fatiga, falta de apetito, estreñimiento y el impacto global. Se mantuvo una asociación independiente debido al catastrofismo del dolor del paciente con la sobrecarga del cuidador, no hubo asociación entre la resistencia del paciente y la sobrecarga del cuidador y el 40% de los cuidadores presentaron una sobrecarga severa. Conclusión: se observa que el aumento de la sobrecarga del cuidador reduce la calidad de vida de los pacientes oncológicos en cuidados paliativos. Descriptores: Carga del Cuidador; Calidad de Vida; Cuidados Paliativos; Oncología; Dolor de Cáncer, Resiliencia.


Keywords


Caregivers Burden; Quality of Life; Palliative Care; Oncology; Cancer Pain; Resiliencia.

References


De Marchi, B. Risk and governance. J Hazard Mater. 2001; 86(Spe):1-251.

Kaasa S, Knudsen AK, Lundeby T, Loje JH. Author’s reply to: Integration between oncology and palliative care: a plan for the next decade? Tumori. 2017 Dec; 103(3):24. DOI: 10.5301/tj.5000631

World Health Organization. Palliative care for older people: better practices [Internet]. Geneva: WHO; 2011 [cited 2019 Aug 10]. Available from: http://www.euro.who.int/__data/assets/pdf_file/0017/143153/e95052.pdf

Kohler LB, Cerchiaro ACB, Levites MR. Cuidados paliativos ambulatoriais e qualidade de vida em pacientes oncológicos. Diagn Tratamento [Internet]. 2016 July/Sept [cited 2019 Aug 10]; 21(3):101-5. Available from: http://docs.bvsalud.org/biblioref/2016/08/1361/rdt_v21n3_101-105.pdf

Soratto MT, Silva DM, Zugno PI, Daniel R. Spiritualit y and resilience in patients suffering from cancer. Rev Saúde Pesqui [Internet]. 2016 Jan/Apr [cited 2019 Aug 10]; 9(1):53-63. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/biblio-831994

Tan JY, Lim HA, Kuek NM, Kua EH, Mahendran R. Caring for the caregiver while caring for the patient: exploring the dyadic relationship between patient spirituality and caregiver quality of life. Support Care Cancer. 2015 Dec; 23(12):3403-6. DOI: 10.1007/s00520-015-2920-5

Prata HM. Cuidados paliativos e direito do paciente terminal. Barueri: Manole; 2017.

World Health Organization. Palliative care for older people: better practices [Internet]. Geneva: WHO; 2011 [cited 2019 Aug 10]. Available from: https://apps.who.int/iris/bitstream/handle/10665/107290/e95052.pdf?sequence=1&isAllowed=y

Duarte ÍV, Fernandes KF, Freitas SC. Palliative home care: considerations on the role of family caregiver. Rev SBPH [Internet]. 2013 July/Dec [cited 2019 Aug 10]; 16(2):73–88. Available from: http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1516-08582013000200006

Sequeira CAC. Adaptation and validation of Zarit Burden Interview Scale. Referência [Internet]. 2010 Mar [cited 2019 Aug 10]; 12:9-16. Available from: http://www.index-f.com/referencia/2010pdf/12-0916.pdf

Borges EL, Franceschini J, Costa LHD, Fernandes ALG, Jamnik S, Santoro IL. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life. J Bras Pneumol. 2017 Jan/Feb; 43(1):18-23. DOI: 10.1590/s1806-37562016000000177

Delalibera M, Presa J, Barbosa A, Leal I. Burden of caregiving and its repercussions on caregivers of end-of-life patients: a systematic review of the literature. Ciênc Saúde Colet. 2015 Sept; 20(9):2731-47. DOI: 10.1590/1413-81232015209.09562014

Lambert SD, Girgis A. Unmet supportive care needs among informal caregives of patientes with cancer: opportunnities and challenges in informing the developmente of interventions. Asia Pac J Oncol Nurse. 2017 Apr/June; 4(2):136-9. DOI: 10.4103/2347-5625.204485

Rezende G. Sobrecarga de cuidadores familiares de idosos em cuidados paliativos [dissertation][Internet]. Ribeirão Preto: Universidade de São Paulo; 2016 [cited 2019 Aug 10]. DOI: 10.11606/D.22.2016.tde-06062016-205214

Vale JMM, Marques Neto AC, Santos LMS, Santana ME. Self-care of the caregiver of the sick in adequate palliative oncological home care. J Nurs UFPE on line. 2019; 13:e235923. DOI: 10.5205/1981-8963.2019.235923

Gomes ALZ, Othero MB. Cuidados Paliativos. Estud Av. 2016 Sept/Dec; 30(88):155-66. DOI: 10.1590/s0103-40142016.30880011

Sehn F, Chachamovich E, Vidor LP, Dall-Agnol L, Souza IC, Torres IL, et al. Cross-cultural adaptation and validation of the Brazilian Portuguese version of the pain catastrophizing scale. Pain Med. 2012 Nov; 13(11):1425-35. DOI: 10.1111/j.1526-4637.2012.01492.x

Harding R, Higginson IJ, Donaldson N. The relationship between patient characteristics and carer psychological status in home palliative cancer care. Support Care Cancer. 2003 Oct; 11(10): 638-43. DOI: 10.1007/s00520-003-0500-6

Giacomelli IP, Steidle LJM, Giacomelli IL, Nesi WM, Moral JAG, Pincelli MP. Lung cancer: three years of data hospital cancer registry of a Brazil south hospital. Arq Catarin Med [Internet]. 2017 July-Sept [cited 2019 Aug 10]; 46(3):129-46. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/biblio-849474

Hatano Y, Moroni M, Wilcock A, Quinn S, Csikós A, Allan SG, et al. Pharmacovigilance in hospice/palliative care: the net immediate and short-term effects of dexamethasone for anorexia. BMJ Support Palliat Care. 2016 Sept; 6(3):331-7. DOI: 10.1136/bmjspcare-2015-001037

Andrea C, Strömberg A, Arestedt, K. Prevalence and associated factors for decreased appetite among patients with stable heart failure. J Clin Nurs. 2016 June; 25(11-12):1703-12. DOI: 10.1111/jocn.13220

Efi P, Fani K, Eleni T, Sylianos K, Vassilios K, Konstantinos B, et al. Quality of life and psychological distress of caregivers' of stroke people. Acta Neurol Taiwan. 2017 Dec; 26(4):154-66. PMID: 30315561

Vatter S, McDonald KR, Stanmore E, Clare L, Leroi I. Multidimensional care burden in parkinson-related dementia. J Geriatr Psychiatry Neurol. 2018 Nov; 31(6):319-28. DOI: 10.1177/0891988718802104

Whitney CA, Dorfman CS, Shelby RA, Keefe FJ, Gandhi V, Somers TJ. Reminders of cancer risk and pain catastrophizing: relationships with cancer worry and perceived risk in women with a first-degree relative with breast cancer. Fam Cancer. 2019 Jan; 18(1):09-18. DOI: 10.1007/s10689-018-0082-6

Turk DC, Wilson HD. Fear of pain as a prognostic factor in chronic pain: conceptual models, assessment, and treatment implications. Curr Pain Headache Rep. 2010 Apr; 14(2):88-95. DOI: 10.1007/s11916-010-0094-x

Collins NL, Ford MB, Guichard AC, Kane HS, Feeney BC. Responding to need in intimate relationships: social support and caregiving processes in couples. In: Mikulincer M, Shaver PR. Prosocial motives, emotions, and behavior. Washington: APA; 2010. p. 367-89.

Mohammadi S, Dehghani M, Sanderman R, Hagedoorn M. The role of pain behavior and family caregiver responses in the link between pain catastrophising and pain intensity: a moderated mediation model. Psychol Health. 2017 Apr; 32(4):422-38. DOI: 10.1080/08870446.2016.1275628




DOI: https://doi.org/10.5205/1981-8963.2020.244165



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