Work burden and quality of life of informal caregivers of palliative care patients*

Authors

Keywords:

Nursing Care, Caregivers, Quality of Life, Family, Work

Abstract

Objective: To investigate the correlation between burden and quality of life of informal caregivers of palliative care patients.

Method: Quantitative, analytical study with 70 caregivers of patients admitted to a hospital in northwestern São Paulo State who completed a sociodemographic questionnaire, the World Health Organization Quality of Life - Bref, and the Informal Caregiver Burden Assessment Questionnaire, from October 2023 to March 2024. Data were analyzed using descriptive statistics, the Shapiro-Wilk normality test, and Spearman's correlation.

Results:  28 (40%) were children, 54 (77.1%) were women, who devoted more than 18 hours a day to care, with moderate burden for 38 (54%) of participants. Overall quality of life perception was good, despite weaknesses in specific domains such as the social domain. A significant negative correlation (p<0.05) was found between burden and quality of life across the different dimensions analyzed.

Conclusion: These findings suggest the need to strengthen public policies aimed at preventing illness in informal caregivers in palliative care.

Author Biographies

Bianca Nascimento Almeida Pinheiro, Faculty of Medicine of São José do Rio Preto, São José do Rio Preto, São Paulo, Brazil.

Nurse. Master's degree in Nursing. Faculty of Medicine of São José do Rio Preto, São José do Rio Preto, São Paulo, Brazil.

Maria Helena Pinto, Faculty of Medicine of São José do Rio Preto, São José do Rio Preto, São Paulo, Brazil.

Nurse. PhD in Nursing. Professor at the Faculty of Medicine of São José do Rio Preto, São José do Rio Preto, São Paulo, Brazil.

Estéfani de Almeida Alves, Faculty of Medicine of São José do Rio Preto, São Paulo, Brazil.

Resident Nurse in the Cancer Care Program at Hospital de Base. Faculty of Medicine of São José do Rio Preto, São Paulo, Brazil.

Rafaela Moreira da Silva Canille, Hospital de Base, São José do Rio Preto, São Paulo, Brazil.

Nurse. Master's degree in Nursing. Hospital de Base, São José do Rio Preto, São Paulo, Brazil.

References

1. Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, et al. Redefining palliative care-a new consensus-based definition. J Pain Symptom Manage [Internet]. 2020 [cited 2026 Apr 23];60(4):754-64. Available from: https://doi.org/10.1016/j.jpainsymman.2020.04.027

2. Messias AA, de Castro ACP, Maiello APMV, de Oliveira CF, Conrado CM, Rolo DF, et al. Manual de cuidados paliativos. [Internet]. São Paulo: Ministério da Saúde; 2023 [cited 2025 May 30]. 421 p. Available from:https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/guias-e-manuais/2023/manual-de-cuidados-paliativos-2a-edicao/view

3. Yan Q, Zhu C, Li L, Li Y, Chen Y, Hun X. The effect of targeted palliative care interventions on depression, quality of life and caregiver burden in informal caregivers of advanced cancer patients: A systematic review and meta-analysis of randomized controlled trials. Int J Nurs Stud [Internet]. 2024 [cited 2026 Apr 22];160:104895. Available from: https://doi.org/10.1016/j.ijnurstu.2024.104895

4. Rocha RAPL, Rocha EM, Machado ME, de Souza A, Schuch FB. Overburdenon the caregivers of oncological patients in palliative. Rev Enferm UFPE Online [Internet]. 2020 [cited 2025 Aug 22];14:e244165. Available from: http://doi.org/10.5205/1981-8963.2020.244165

5. Gulino V, Brunasso L, Avallone C, Costa V, Adorno AA, Lombardo MC, et al. Caregivers' perspective and burden of the end-of-life phase of patients with glioblastoma: A Multicenter Retrospective Study. World Neurosurg [Internet]. 2024 [cited 2025 May 29];192:e49-e55. Available from: https://doi.org/10.1016/j.wneu.2024.08.114

6. Caldeira H, Carrondo E, Paulino M, Mendes R. A sobrecarga do cuidador informal seu estado de humor. Egitania Sciencia [Internet]. 2022 [cited 2025 May 30];1(30):67-84. Available from: https://doi.org/10.46691/es.v1i30.38

7. Utz RL, Warner EL. Caregiver burden among diverse caregivers. Cancer. [Internet]. 2022 [cited 2026 May 4];128(10):1904-06. Available from: https://doi.org/10.1002/cncr.34171

8. World Health Organization (WHO). WHOQOL: measuring quality of life [Internet]. Geneva: World Health Organization; [cited 2020 Dec 20]. Available from: https://www.who.int/tools/whoqol

9. Batista IB, Marinho JS, Brito TRP, Guimarães MSA, da Silva Neto LS, Pagotto V, et al. Quality of life of family caregivers of bedridden older adults. Acta Paul Enferm [Internet]. 2023 [cited 2025 Jun 1];36:eAPE00361. Available from: https://doi.org/10.37689/acta-ape/2023AO00361

10. Minayo MCS. Caring for those who care for dependent older adults: for a necessary and urgent policy. Ciênc Saúde Colet [Internet]. 2021 [cited 2025 Jul 30];26(01):7-15. Available from: http://doi.org/10.1590/1413-81232020261.30872020

11. Bahrami M, Sebzari AR, Nasiri A. Caregivers' demands: caring atmosphere expected by cancer patients' caregivers-a qualitative content analysis. Support Care Cancer [Internet]. 2024 [cited 2026 Apr 30];32:389. Available from: https://doi.org/10.1007/s00520-024-08575-3

12. Fleck MPA, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, et al. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida "WHOQOL-bref". Rev. Saúde Pública [Internet]. 2000 [cited 2025 May 30];34(2):178-83. Available from: https://doi.org/10.1590/S0034-89102000000200012

13. Correia ET, Rêgo AS, da Silva M, Sanches RCN, Silva ES, Milani D, et al. Validation of the informal caregiver burden assessment questionnaire for Brazil - short version. Rev Bras Enferm [Internet]. 2022 [cited 2025 May 30];75(4):e20210862. Available from: https://doi.org/10.1590/0034-7167-2021-0862

14. Monteiro EA, Mazin SC, Dantas RAS. The Informal Caregiver Burden Assessment Questionnaire: validation for Brazil. Rev Bras Enferm [Internet]. 2015 [cited 2024 Dec 10];68(3):364-70. Available from: http://dx.doi.org/10.1590/0034-7167.2015680307i

15. Cohen J. Statistical power analysis for the behavioral sciences. Londres, Routledge; 1988. 567p.

16. Bonett DG, Wright TA. Sample size requirements for estimating Pearson, kendall and spearman correlations. Psychometrika [Internet]. 2000 [cited 2024 Jun 10];65:23-28. Available from: https://link.springer.com/article/10.1007/BF02294183

17. Bishara AJ, Hittner JB. Confidence intervals for correlations when data are not normal. Behav Res Methods [Internet]. 2017 [cited 2025 May 30];49:294-309. Available from: https://doi.org/10.3758/s13428-016-0702-8

18. Gonçalves I, Ramos RS, Gomes AMT, de Oliveira LAF, Bernardes MMR, Dib RV. Palliative Care and social representations for caregivers of oncological patients in exclusive palliative care: an exploratory analysis. Rev Bras Cancerol [Internet]. 2024 [cited 2025 May 30];70(2):e-214640. Available from: https://doi.org/10.32635/2176-9745.RBC.2024v70n2.4640

19.Renk VE, Buziquia SP, Bordini ASJ. Mulheres cuidadoras em ambiente familiar: a internalização da ética do cuidado. Cad Saúde Colet [Internet]. 2022 [cited 2025 Aug 15];30(3):416-423. Available from: https://doi.org/10.1590/1414-462X202230030228

20. Capelo MRTF, Brasil CCP, Silva RMLP, Capelo JAF, Quintal AJOM, Ribeiro LJM, et al. Perceptions of informal caregivers about motivations, needs, and benefits of care for dependent older adults. Ciênc Saúde Colet [Internet]. 2024 [cited 2025 Mar 12];29(8):1-9. Available from: https://doi.org/10.1590/1413-81232024298.05612024

21. Nunes FBBF, da Costa RM, da Silva EL, dos Santos FKL, Aquino ACR, Bastos AB, et al. Capacidade de cuidado familiar em paliação na atenção domiciliar. J Nurs Health [Internet]. 2024 [cited 2025 May 30];14(1):e1424268. Available from: https://periodicos.ufpel.edu.br/index.php/enfermagem/article/view/24268

22. Aughinbaugh A, Woods RA. Patterns of caregiving and work: evidence from two surveys. Monthly Labor Review.U.S. Bureau of Labor Statistics [Internet]. 2021 [cited 2025 May 30]:1-19. Available from: https://www.jstor.org/stable/27009462

23. Ribeiro LEO, Garcia JBS, Machado GS, Bacelar M. Cuidadores de pacientes com câncer em final de vida: sofrimento psicológico e redução do bem-estar. SciELO Preprint [Internet]. 2023 [cited 2025 Jun 15];5753. Available from: https://doi.org/10.1590/SciELOPreprints.5753

24. Schulz R. The intersection of family caregiving and work: labor force participation, productivity, and caregiver well-being. In: Czaja SJ, Sharit J, James JB, editors. Current and Emerging Trends in Aging and Work [Internet]. Cham: Springer; 2020 [cited 2026 Apr 4]. p. 399-413. Available from: https://doi.org/10.1007/978-3-030-24135-3_20

25.Vieira P, Ribeiro F, Shiraishi J, Fernandes C. Envelhecimento, cuidado e raça. Cebrap [Internet]. 2024 [cited 22 Mar 2025]. 117 p. Available from: https://cebrap.org.br/envelhecimento-cuidado-e-raca/

26. Patterson SE, Freedman VA,Cornman JC, Wolff JL. Work as Overload or Enhancement for Family Caregivers of Older Adults: Assessment of Experienced Well-Being Over the Day. J Marriage Fam [Internet]. 2023 [cited 2025 May 30];85(3):760-81. Available from: https://doi.org/10.1111/jomf.12909

27. Zhang Y, Zhang S, Liu C, Chen X, Ding Y, Guan C, et al. Caregiver burden among family caregivers of patients with advanced cancer in a palliative context: A mixed-method study. J Clin Nurs [Internet]. 2023 [cited 2026 May 30];32(21-22):7751-64. Available from: https://doi.org/10.1111/jocn.16872

28. Cheng Z, Jepsen DM, Wang BZ. A dynamic analysis of informal Elder caregiving and employee well-being. J Bus Psychol [Internet]. 2020 [cited 2026 Apr 23];35(1):85-98. Available from: https://doi.org/10.1007/s10869-018-9603-4

29. de Oliveira AS, Sardinha AHL, Corrêa RGCF, Coutinho NPS, de Vasconcelos EMR, Rolim NCOP, et al. Evaluation of the Burden of Family Caregivers of Patients in Chemotherapy. Rev Contexto & Saúde [Internet]. 2024 [cited 2025 May 30];24(49):e14985. Available from: https://doi.org/10.21527/2176-7114.2024.49.14985

30. da Silva EC, Luiz JM, do Canto MAVM, Rissetti J, Eidt NJF, Ovando AC. Quality of life and burden of informal caregivers of post-stroke individuals. Cad Bras Ter Ocup [Internet]. 2022 [cited 2026 May 4];30:e3169. Available from: https://doi.org/10.1590/2526-8910.ctoAO243631692

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Published

2026-08-03

How to Cite

Pinheiro, B. N. A., Pinto, M. H., de Almeida Alves, E., & Canille, R. M. da S. (2026). Work burden and quality of life of informal caregivers of palliative care patients*. Cogitare Enfermagem, 31. Retrieved from https://revistas.ufpr.br/cogitare/article/view/102017

Issue

Vol. 31 (2026)

Section

Original Articles

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Copyright (c) 2026 Bianca Nascimento Almeida Pinheiro, Maria Helena Pinto, Estéfani de Almeida Alves, Rafaela Moreira da Silva Canille

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