As experiências de cuidadores informais de pacientes em tratamento oncológico paliativo: uma revisão integrativa
Resumo
Objetivo: agrupar, sintetizar e integrar a literatura acerca das experiências de cuidadores informais que prestam cuidados a pacientes oncológicos em tratamento paliativo. Método: revisão integrativa de literatura usando a metodologia proposta por Ganong. As buscas foram realizadas nas bases de dados Medical Literature Analysis and Retrieval System Online (MEDLINE) e Cumulative Index to Nursing and Allied Health Literature (CINAHL). A estratégia de busca foi composta por termos do Medical Subject Headings (MeSH) e suas versões em inglês e português. Após formulada a estratégia de busca, a mesma foi revisada por uma especialista em revisões sistemáticas para garantir rigorosidade. Resultados: vinte e quatro artigos foram selecionados, e abordavam aspectos referentes a importância de cuidar do ente querido, desafios enfrentados, e recursos utilizados durante o processo morte e morrer. Conclusão: esta revisão traz evidência da falta de suporte e recursos enfrentados por cuidadores informais de pacientes oncológicos paliativos. Assim como, demonstra a necessidade de novas pesquisas sobre esse tópico já que todos os estudos mencionaram a falta de pesquisa nessa área.
Downloads
Referências
World Health Organization. Palliative care [on-line]. 2018 [citado em 2020 ago 14]. Disponível em: https://www.who.int/news-room/fact-sheets/detail/palliative-care
Instituto Nacional de Câncer José Alencar Gomes da Silva. Estimativa 2020: incidência de câncer no Brasil [on-line]. 2019 [citado em 2020 ago 14]. Disponível em: https://www.inca.gov.br/sites/ufu.sti.inca.local/files/media/document/estimativa-2020-incidencia-de-cancer-no-brasil.pdf
Global Cancer Observatory. Cancer tomorrow. Global Cancer Observatory [on-line]. 2018 [citado em 2020 ago 14]. Disponível em: from https://gco.iarc.fr/tomorrow/home
Haun MW, Estel S, Ruecker G, Friederich HC, Villalobos M, Thomas M et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst. Rev. 2017; 6(6):CD011129. Doi: http://dx.doi.org/10.1002/14651858.CD011129.pub2.
World Health Organization. National cancer control programmes: policies and managerial guidelines [on-line]. 2002 [citado em 2021 fev 28]. Disponível em: https://www.who.int/cancer/publications/nccp2002/en/
Vorvick LJ. What is palliative care? US National Library of Medicine [on-line]. 2020[citado em 2020 ago 14]. Disponivel em: https://medlineplus.gov/ency/patientinstructions/000536.htm
Kent EE, Rowland JH, Northouse L, Litzelman K, Chou WYS, Shelburne N et al. Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. 2016; 122(13):1987-95. Doi: http://dx.doi.org/10.1002/cncr.29939.
Mehta KK, Leng TL. Experiences of Formal and Informal Caregivers of Older Persons in Singapore. J Cross Cult Gerontol. 2017; 32(3):373-85. Doi: http://dx.doi.org/10.1007/s10823-017-9329-1.
Benedetti GMS, Wakiuchi J, Costa JR, Prado E, Sampaio JN, Sales CA. The emotional burden of family members of cancer patients: ambiguity of feelings in the moment of care. Cienc Cuid Saude, 2015; 14(3): 1220-28. Doi: https://doi.org/10.4025/cienccuidsaude.v14i3.23590.
Nachtigall MCB, Muniz RM, Cagliari R, Viegas AC, Duarte DEA, Habekost DC. The repercussion of the colorectal cancer diagnosis for the person and his/her family. Cienc Cuid Saude. 2021; 20: 1-9. Doi: https://doi.org/10.4025/cienccuidsaude.v20i0.57576
Corrêa ARS, Santana ME, Mendes CP, Costa EG, Ximenes WL. Health condition of patient caregiver on oncological palliative care. Rev Enferm UFPI [on-line]. 2019 [citado em 2021 fev 20]; 8(3):36-42. Disponível em: https://revistas.ufpi.br/index.php/reufpi/article/view/8142/pdf
Muñoz I. Avaliação das Necessidades e Potencialidades dos Cuidadores Informais do doente Paliativo através da Escala General Comfort Questionnaire (GCQ). 2018. [Especialização]. Portalegre (Portugal). Escola Superior de Educação e Ciências Sociais. Instituto Politécnico de Portalegre. Disponível em: https://comum.rcaap.pt/bitstream/10400.26/25261/1/ProvasPublicasIsabelMunoz.pdf
Cunha AS, Pitombeira JS, Panzetti TMN. Oncological palliative care: perception of caregivers. J. Health Biol Sci. 2018; 6(4): 383-90. Doi: http://dx.doi.org/10.12662/2317-3076jhbs.v6i4.2191.p383-390.2018.
Waldenfels B. Fenomenología de la experiencia en Edmund Husserl. Areté, 2017; 29(2):409-26. Doi: http://dx.doi.org/10.18800/arete.201702.008.
Ganong LH. Integrative review of nursing research. Res Nurs Health. 1987; 10(1): 1-11. Doi: http://dx.doi.org/10.1002/nur.4770100103.
Stern C, Joardan Z, McArthur A. Developing the review question and inclusion criteria. Am J Nurs. 2014; 114(4), 53-6. Doi: http://dx.doi.org/10.1097/01.NAJ.0000445689.67800.86.
World Health Organization. Cuidados paliativos [on-line]. 2020 [citado em 2021 fev 28). Disponível em: https://www.who.int/es/news-room/fact-sheets/detail/palliative-care
Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med. 2009; 6(7): e1000097. Doi: http://dx.doi.org/10.1371/journal.pmed1000097.
Joanna Briggs Institute. New JBI levels of evidence. The Joanna Briggs Institute Levels of Evidence and Grades of Recommendation Working Party [on-line]. 2013 [citado em 2020 ago 14]. Disponível em: https://joannabriggs.org/sites/default/files/2019-05/JBI-Levels-of-evidence_2014_0.pdf
Sherman DW, McGuire DB, Free D, Cheon JY. A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach. J Pain Symptom Manage. 2014. 48(3): 385-99. Doi: http://dx.doi.org/10.1016/j.jpainsymman.2013.09.006.
Applebaum AJ, Kulikowski JR, Breitbart W. Meaning-centered psychotherapy for Cancer caregivers (MCP-C): Rationale and overview. Palliat Support Care. 2015; 13(6): 1631-41. Doi: http://dx.doi.org/10.1017/S1478951515000450.
Levy K, Grant PC, Tenzek KE, Depner RM, Pailler ME, Beaupin LK. The experience of pediatric palliative caregiving: A qualitative analysis from the photographs of meaning program. Am J Hosp Palliat Care. 2020; 37(5): 364-70. Doi: http://dx.doi.org/10.1177/1049909119879413.
Robinson CA, Bottorff JL, McFee E, Bissell LJ, Fyles G. Caring at home until death: Enabled determination. Support Care Cancer. 2017; 25(4): 1229-36. Doi: http://dx.doi.org/10.1007/s00520-016-3515-5.
Wijnhoven MN, Terpstra WE, Van Rossem R, Haazer C, Gunnink-Boonstra N, Sonke GS et al. Bereaved relatives' experiences during the incurable phase of cancer: a qualitative interview study. BMJ Open. 2015; 5(11): e009009. Doi: http://dx.doi.org/10.1136/bmjopen-2015-009009.
Harrop E, Byrne A, Nelson A. "It's alright to ask for help": Findings from a qualitative study exploring the information and support needs of family carers at the end of life. BMC Palliative Care. 2014; 13:22. Doi: http://dx.doi.org/10.1186/1472-684X-13-22.
Kristanti MS, Engels Y, Effendy C, Astuti, Utarini A, Vernooij-Dassen M. Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia. Int Psychogeriatr. 2018; 30(6):903-14. Doi: http://dx.doi.org/10.1017/S1041610217001508.
Mosher CE, Ott MA, Hanna N, Jalal SI, Champion VL. Coping with physical and psychological symptoms: A qualitative study of advanced lung cancer patients and their family caregivers. Support Care Cancer. 2015; 23(7): 2053-2060. Doi: http://dx.doi.org/10.1007/s00520-014-2566-8.
Selman LE, Beynon T, Radcliffe E, Whittaker S, Orlowska D, Child F et al. 'We're all carrying a burden that we're not sharing': A qualitative study of the impact of cutaneous T-cell lymphoma on the family. Br J Dermatol. 2015; 172(6): 1581-92. Doi: http://dx.doi.org/10.1111/bjd.13583.
Kristanti MS, Effendy C, Utarini A, Vernooij-Dassen M, Engels Y. The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach. Palliat Med. 2019; 33(6): 676-84. Doi: http://dx.doi.org/10.1177/0269216319833260.
Quinoa-Salanova C, Porta-Sales J, Monforte-Royo C, Edo-Gual M. The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis. Palliat Med. 2019; 33(5): 500-9. Doi: http://dx.doi.org/10.1177/0269216319830017.
Hannon B, Swami N, Rodin G, Pope A, Zimmermann C. Experiences of patients and caregivers with early palliative care: A qualitative study. Palliat Med. 2017; 31(1): 72-81. Doi: http://dx.doi.org/10.1177/0269216316649126.
Lee HT, Melia KM, Yao CA, Lin CJ, Chiu TY, Hu WY. Providing hospice home care to the terminally ill elderly people with cancer in Taiwan: family experiences and needs. Am J Hosp Palliat Care. 2014; 31(6): 628-35. Doi: http://dx.doi.org/10.1177/1049909113499603.
Male DA, Fergus KD, Stephen JE. The continuous confrontation of caregiving as described in real-time online group chat. J Palliat Care. 2015; 31(1):36-43. Doi: http://dx.doi.org/10.1177/082585971503100106.
Norton SA, Wittink MN, Duberstein PR, Prigerson HG, Stanek S, Epstein RM. Family caregiver descriptions of stopping chemotherapy and end-of-life transitions. Support Care Cancer. 2019; 27(2): 669-75. Doi: http://dx.doi.org/10.1007/s00520-018-4365-0
Rocio L, Rojas EA, Gonzalez MC, Carreno S, Diana C, Gomez O. Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process. Int J Palliat Nurs. 2017; 23(7): 332-9. Doi: http://dx.doi.org/10.12968/ijpn.2017.23.7.332.
Lima LES, Santana ME, Correa Júnior AJS, Vasconcelos EV. Together we resist, separated we fall out: experiences of family caregivers of cancer patients in palliative care. Rev Fun Care Online. 2019; 11(4):931-6. Doi: http://dx.doi.org/10.9789/2175-5361.2019.v11i4.931-936.
Cacciatore J, Thieleman K, Lieber AS, Blood C, Goldman R. The long road to farewell: The needs of families with dying children. Omega. Omega (Westport). 2019; 78(4): 404-20. Doi: http://dx.doi.org/10.1177/0030222817697418.
Francis LE, Kypriotakis G, O'Toole EE, Rose JH. Cancer patient age and family caregiver bereavement outcomes. Support Care Cancer. 2016; 24(9): 3987-96. Doi: http://dx.doi.org/10.1007/s00520-016-3219-x.
Meeker MA, Waldrop DP, Schneider J, Case AA. Contending with advanced illness: patient and caregiver perspectives. J Pain Symptom Manage. 2014; 47(5): 887-95. Doi: http://dx.doi.org/10.1016/j.jpainsymman.2013.06.009.
Robinson JE, Huskey D, Schwartz J, Weaver MS. The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors. Children. 2019; 6: 1-12. Doi: http://dx.doi.org/10.3390/children6100113.
Borland R, Glackin M, Jordan J. How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer. Eur J Cancer Care. 2014; 23(5): 701-11. Doi: http://dx.doi.org/10.1111/ecc.12183.
Vale JMM, Neto ACM, Santos LMS, Santana E. Educação em saúde ao familiar cuidador de adoecidos em cuidados paliativos oncológicos domiciliares. Enferm. Foco. 2019; 10(2): 52-7. Doi: https://doi.org/10.21675/2357-707X.2019.v10.n2.1684
Leroy T, Fournier E, Penel N, Christophe V. Crossed views of burden and emotional distress of cancer patients and family caregivers during palliative care. Psychooncology. 2016; 25(11): 1278-85. Doi: http://dx.doi.org/10.1002/pon.4056.
McPherson CJ, Hadjistavropoulos T, Devereaux A, Lobchuk MM. A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home. BMC Palliative Care. 2014; 13: 39. Doi: http://dx.doi.org/10.1186/1472-684X-13-39.
Copyright (c) 2021 Ciência, Cuidado e Saúde
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
