Abstract
Objective: to verify the relationship between the time spent in providing care and the main needs of the family caregiver of hospitalized elderly people in palliative care.
Method: this was a descriptive, cross-sectional study with a quantitative approach. It was carried out with 205 family caregivers of elderly people undergoing palliative care in a large hospital in a Northeast of Brazil capital. The data collection took place between August and October 2019 using a validated questionnaire that included sociodemographic data, care time, and 21 questions related to basic human needs. A chi-square test was used to verify the relationship between the aspects of each dimension (physical, emotional, social and spiritual) and the length of care; a p-value of ≤ 0.05 was considered to be statistically significant.
Results: family caregivers had high percentages of needs related to emotional control, conflict resolution with themselves, difficulty leaving home, making plans and being able to carry them out, and suppressing their economic and financial demands related with the longer time spent in monitoring their beloved one.
Conclusion: the results of this study provide a profile of the main needs for family caregiver. This makes evident that caregivers need support from the health team in order to develop strategies for their emotional control, minimize their conflicts with themselves, review their personal demands, and maintain a routine of leisure activities while also feeling good to perform future plans.
References
Espíndola AV, Quintana AM, Farias CM, Munchen MAB. Family relationships in the context of palliative care. Rev. bioét. (Impr.). 2018 [cited 2021 Jul 27];26 (3): 371-7. doi: https://doi.org/10.1590/1983-80422018263256
Whitney G, Dixon A. Understanding thepresence of Gerotranscendence among older adults. Adulspan Journal. 2018 [cited 2022 Feb 11];17 (1): 27-40. doi: https://doi.org/10.1002/adsp.12051
Frossard A, Aguiar AB. Social worker intervention strategies in palliative care in the brazilian context. International Journal of Current Advanced Research. 2020 [cited 2020 Jun 25]; 9(1): 21012-16. doi: http://dx.doi.org/10.24327/ijcar.2020.21016.4117
World Health Organization (WHO). Definition of Palliative Care. 2002 [cited 2020 Jun 25]. Disponible en: https://www.who.int/cancer/palliative/definition/en/
Lima KMA, Maia AHN, Nascimento IRC. Communication of bad news in palliative care within pediatric oncology. Rev. Bioét. 2019 [cited 2020 June 25]; 27(4):719-727. doi: https://doi.org/10.1590/1983-80422019274355
Matos EBT, Oliveira JP, Noveli MMPC. As demandas de cuidado e autocuidado na perspectiva do cuidador familiar da pessoa idosa com demência. Rev. Bras. Geriatr. Gerontol. 2020 [cited 2021 Jul 27] 23(3): 3-10. doi: https://doi.org/10.1590/1981-22562020023.200189
Scott P. Mulher, mãe e filha cuidadora: imaginários coletivos sobre relações intergeracionais. Psic. Clin.2020 [cited 2021 Jul 27]; 32(2): 213-30. doi: http://dx.doi.org/10.33208/PC1980-5438v0032n02A0
Peres PAT, Buchalla CM, Silva SM. Aspectos da sobrecarga e qualidade de vida de cuidadores de pacientes hospitalizados: uma análise baseada na Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). Rev Bras Saude Ocup. 2018 [cited 2021 Jul 28]; 43(1): 2-7. doi: https://doi.org/10.1590/2317-6369000013617
Queiroz AC, Silva MP, Dantas MCS, Fonseca AC, Brito DTF, Agra G. Cuidados voltados aos familiares de pessoas em finitude humana. Research, Society and Development. 2021 [cited 2021 Oct 04]; 10(2): e7310212151. doi: http://dx.doi.org/10.33448/rsd-v10i2.12151
Kristanti MS, Effendy C, Utarini A, Vernooij-Dassen M, Engels Y. The experience of family caregiversof patients with cancer in an Asian country: A grounded theory approach. Palliative Medicine. 2019 [cited 2021 Oct 04]; 33(6): 676–84. doi: https://doi.org/10.1177/0269216319833260
Pinkert C, Holtgräwe M, Remmers H. Needs of relatives of breast cancer patients: the perspectives of families and nurses. Eur J Oncol Nurs. 2013 [cited 2021 Oct 04]; 17(1):81-7. doi: 10.1016/j.ejon.2011.10.006
Cui J, Song LJ, Zhou LJ, Meng H, Zhao JJ. Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China. Eur J Cancer Care (Engl).2014 [cited 2021 Oct 04]; 23(4):562-9. doi: 10.1111/ecc.12174
Schur S, Neubauer M, Amering M, Ebert-Vogel A, Masel EK, Sibitz I, et al. Validation of the Family Inventory of Needs (FIN) for family caregivers in palliative care. Palliat Support Care. 2015 [cited 2021 Oct 04]; 13(3):485-91. doi: 10.1017/S1478951514000261
Marques JBV, Freitas D. Método DELPHI: caracterização e potencialidades na pesquisa em Educação. Pro-Posições. 2018 [cited 2022 Feb 11]; 29(2): 389-415. doi: https://doi.org/10.1590/1980-6248-2015-0140.
Souza AC, Alexandre NMC, GuirardelloEB. Psychometric properties in instruments evaluation of reliability and validity. Epidemiologia e Serviços de Saúde. 2017 [cited 2022 Mar 12]; 26(3): 649-659. doi: https://doi.org/10.5123/S1679-49742017000300022.
Dantas MNP, Aiquoc KM, Santos EGO, Silva MFS, Souza DLB, Medeiros NBM, et al. Prevalence and factors associated with perceived racial discrimination in health services in Brazil. Rev Bras Promoç Saúde. 2019; 32:9764. doi: https://doi.org/10.5020/18061230.2019.9764
Pavarini SCL, Neri AL, Brígola AG, Ottaviani AC, Souza ÉN, Rossetti ES et al. Elderly caregivers living in urban, rural and high social vulnerability contexts. Rev. esc. enferm. USP. 2017 [cited 2020 June 25]; 51: e03254. doi: https://doi.org/10.1590/S1980-220X2016040103254
Kamakura W, Mazzon JA. Critérios de estratificação e comparação de classificadores socioeconômicos no Brasil. Rev. adm. empres. 2016 [cited 2020 June 25]; 56(1):55-70. Doi: https://doi.org/10.1590/S0034-759020160106
Vale J, Neto A, Santos L, Santana M. Self-care of the caregiver of the sick in adequate palliative oncological home care. J Nursing UFPE online. 2019 [Cited 2020 Jul 21]; 13: e235923. doi: https://doi.org/10.5205/1981-8963.2019.235923
Delalibera M, Barbosa A, Leal I. Circunstâncias e consequências do cuidar: caracterização do cuidador familiar em cuidados paliativos. Ciênc. Saúde coletiva. 2018 [cited 2020 July 21]; 23(4): 1105-1117. doi: https://doi.org/10.1590/1413-81232018234.12902016
Cardoso ACC, Noguez PT, Oliveira SG, Porto AR, Perboli JS, Farias TA. Rede de apoio e sustentação dos cuidadores familiares de pacientes em cuidados paliativos no domicílio. Enferm. Foco. 2019 [cited 2021 July 28]; 10 (3): 70-75. doi: https://doi.org/10.21675/2357-707X.2019.v10.n3.1792
Jesus ITM, Orlandi AAS, Zazzetta MS. Burden, profile and care: caregivers of socially vulnerable elderly persons. Rev. bras. geriatr. Gerontol. 2018 [cited 2021 July 28]; 21 (2): 194-204. doi: https://doi.org/10.1590/1981-22562018021.170155
Gayoso MV, Avila MAG, Silva TA, Alencar RA. Comfort level of caregivers of cancer patients receiving palliative care. Rev. Latino-Am. Enfermagem. 2018 [cited 2021 July 28]; 26: (e3029). doi: https://doi.org/10.1590/1518-8345.2521.3029
Zimmermann C. et al. Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ Open. 2016 [cited 2021 July 28]; 188(10): 17-27. doi: https://doi.org/10.1503/cmaj.151171
Valer, DB. et al. Adaptation and validation of the Caregiver Burden Inventory for use with caregivers of elderly individuals. Rev. Latino-Am. Enfermagem. 2020 [cited 2021 July 28]; 23(1): 130-8. doi: https://doi.org/10.1590/0104-1169.3357.2534
Diniz, MAA. et al. Estudo comparativo entre cuidadores formais e informais de idosos. Cien. Saude. Colet. 2018 [cited 2021 July 28]. 23(11). doi: https://doi.org/10.1590/1413-812320182311.1693201
Silva DVA, Carmo JR, Cruz MEA, Rodrigues CAO, Santana ET, Araújo DD. Caracterização clínica e epidemiológica de pacientes atendidos por um programa público de atenção domiciliar. Enferm. Foco. 2019 [cited 2021 July 28]; 10 (3): 112-8. doi: https://doi.org/10.21675/2357-707X.2019.v10.n3.1905
Araújo MGO, Dutra MOM, Freitas CCSL, Guedes TG, Souza FS, Baptista RS. Caring for the carer: quality of life and burden of female caregivers. Rev Bras Enferm. 2019. [Cited 2021 July 15]; 72(3):763-71. doi: https://doi.org/10.1590/0034-7167-2018-0334
Arrieira ICO, Thoferhn MB, Schaefer OM, Fonseca AD, Kantorski LP, Cardoso DH. The sense of spiritualcare in the integrality of attention in palliative care. Rev. Gaúcha Enferm. 2017. [Cited 2021 July 15]; 38(3):1-9. doi: https://doi.org/10.1590/1983-1447.2017.03.5873
Rezende G, Gomes CA, Rugno FC, Eva G, Lima NKC, Carlo MMRP. Burden on family caregivers of the elderly in oncologic palliative care. European Geriatric Medicine. 2017. [Cited 2021 July 15]; 8(4):337-41. doi: https://doi.org/10.1016/j.eurger.2017.06.001
Ringer T, Hazzan AA, Agarwal A, Mutsaers A, Papaiaonnou A. Relationship between family caregiver burden and physical frailty in older adults without dementia: a systematic review. Syst Rev. 2017. [Cited 2021 July 15]; 6(1):1-16. doi: https://doi.org/10.1186/s13643-017-0447-124
Trindade I, Almeida D, Romão M, Rocha S, Fernandes S, Varela V, Braga M. Caracterização do grau de sobrecarga dos cuidadores de utentes dependentes da Unidade de Saúde Familiar USF Descobertas. Rev Port Med Geral Fam. 2017. [Cited 2021 July 15]; 33(3):178-86. doi: http://dx.doi.org/10.32385/rpmgf.v33i3.12160
Santos-Orlandi AA, Brito TRP, Ottaviani AC, Rossetti ES, Zazzetta MS, Gratão ACM, et al. Profile of older adults caring for other older adults in contexts of high social vulnerability. Esc Anna Nery. 2017. [Cited 2021 July 15]; 21(1):1-8. doi: https://doi.org/10.5935/1414-8145.20170013
Comments
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
Copyright (c) 2022 Jacilene Santiago do Nascimento Trindade dos Santos, MSc, Manuela Bastos Alves, MSc, Simone Conceição Oliveira Baptista1, Enfa, Magna dos Santos Andrade, Dra, Richardson Augusto Rosendo da Silva, Dr, Rudval Souza da Silva