Burden and quality of life of informal caregivers of elderly people with chronic diseases

Authors

  • Ana Maria Ferreira Rondina Fundação Faculdade de Medicina de São José do Rio Preto, Serviço Social, Programa de Pós-graduação em Enfermagem. https://orcid.org/0000-0001-7976-5353
  • Maria de Lourdes Sperli Geraldes Santos Faculdade de Medicina de São José do Rio Preto, Enfermagem, Programa de Pós-graduação em Enfermagem. São José do Rio Preto, Brasil. https://orcid.org/0000-0001-6110-619X
  • Natalia Sperli Geraldes Marin dos Santos Sasaki Faculdade de Medicina de São José do Rio Preto, Enfermagem, Programa de Pós-graduação em Enfermagem. São José do Rio Preto, Brasil. https://orcid.org/0000-0002-8627-9713
  • João Marcelo Rondina Faculdade de Medicina de São José do Rio Preto, Núcleo de Informática, Programa de Pós-graduação em Psicologia. São José do Rio Preto, Brasil. https://orcid.org/0000-0002-9316-8157
  • Margarete Ártico Baptista Faculdade de Medicina de São José do Rio Preto, Enfermagem, Programa de Pós-graduação em Enfermagem. São José do Rio Preto, Brasil. https://orcid.org/0000-0002-6125-8158
  • Luciano Garcia Lourenção Universidade Federal do Rio Grande: Enfermagem, Programa de Pós-graduação em Enfermagem. Rio Grande do Sul, Brasil https://orcid.org/0000-0002-1240-4702

DOI:

https://doi.org/10.17765/2176-9206.2026v19e13306

Keywords:

Aged, Caregivers, Chronic Disease, Stress Psychological

Abstract

The objective was to evaluate the burden and quality of life of caregivers of older adults with chronic diseases. This was a cross-sectional study that used the Zarit Burden Interview Scale and the WHOQOL-Bref. A total of 299 caregivers participated, predominantly women, over 40 years old, without a partner, with low educational level, income of one minimum wage, having a family bond with the older person, and providing care for more than one year. Caregiver burden was classified as moderate to severe, and quality of life scores ranged from 59.4 to 70.8. There was a significant negative correlation between burden and the Social Relationships domain (r = -0.234; p < 0.001), Physical domain (r = -0.465; p < 0.001), Psychological domain (r = -0.538; p < 0.001), and Environment domain (r = -0.379; p < 0.001). It is concluded that the caregiver role generates substantial burden, which negatively impacts quality of life.

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Author Biographies

Ana Maria Ferreira Rondina, Fundação Faculdade de Medicina de São José do Rio Preto, Serviço Social, Programa de Pós-graduação em Enfermagem.

Holds a degree in Social Work from União das Faculdades dos Grandes Lagos (1996) and a master's degree in Nursing from the Faculty of Medicine of São José do Rio Preto (2020). Currently, she is a Sector Coordinator at the Fundação Faculdade Regional de Medicina de São José do Rio Preto. She has experience in the field of Social Work in Health. She has experience in the area of ​​Social Work, primarily working on topics related to professional practices in Social Work.

Maria de Lourdes Sperli Geraldes Santos, Faculdade de Medicina de São José do Rio Preto, Enfermagem, Programa de Pós-graduação em Enfermagem. São José do Rio Preto, Brasil.

She holds a Bachelor's degree in Nursing from the State University of Londrina (1980), a Master's degree in Health Sciences with a focus on Medicine and Related Sciences from the Faculty of Medicine of São José do Rio Preto-FAMERP (2002), and a PhD from the Inter-units Doctoral Program in Nursing at the Ribeirão Preto School of Nursing, University of São Paulo. She is currently an Associate Professor at FAMERP, in the area of Collective Health Nursing and Professional Guidance. She is the Head of the Department of Collective Health Nursing, Head of the Nursing Management in Collective Health course, a member of the REDETB, and registered in the Research Group Directory as a researcher of GEOTB. She is the Coordinator of the Specialization Course in Nursing in Primary Care with an emphasis on Family Health and Management, and the Assistant Coordinator of the Specialization Course in Teaching in Health and the Specialization Course for Family Health Teams. She mainly works on the following topics: neglected diseases, epidemiology, collective health and family health, care and health management, quality of life, health education, health service evaluation, and healthcare across the life cycle and elderly health.

Natalia Sperli Geraldes Marin dos Santos Sasaki, Faculdade de Medicina de São José do Rio Preto, Enfermagem, Programa de Pós-graduação em Enfermagem. São José do Rio Preto, Brasil.

She holds a bachelor's degree in Nursing (2007), with specializations in Nursing in Primary Care with an Emphasis on Family Health and Management, and Obstetric Nursing from FAMERP. She also completed specializations in Preceptorship in the SUS at Hospital Sírio-Libanês and Health Management and Economics at FAMERP. She earned her PhD in Health Sciences from the Faculty of Medicine of São José do Rio Preto - SP (FAMERP). Currently, she is the Coordinator of the Nursing Program and a faculty member of the Medicine Program at União das Faculdades dos Grandes Lagos - UNILAGO. She also teaches in the Nursing Master's Program at FAMERP. She is the leader of the Research Center on Reported Morbidity, Health Management, and Education (NEMOREGES) and a Senior Researcher for the São José do Rio Preto Project: Age-Friendly City. Additionally, she is an associate professor in the Department of Specialized Nursing at FAMERP.

João Marcelo Rondina, Faculdade de Medicina de São José do Rio Preto, Núcleo de Informática, Programa de Pós-graduação em Psicologia. São José do Rio Preto, Brasil.

PhD in Health Sciences from FAMERP, master’s degree in Electrical Engineering from Unesp/Campus of Ilha Solteira, specialization in Business Administration with an emphasis on Marketing from FAAP, and bachelor’s degree in Computer Science from Unesp/Campus of São José do Rio Preto. Currently the Director of the Information Technology Center at FAMERP, he also serves as a guest professor in the undergraduate courses of Medicine and Psychology and participates in the Lato Sensu and Stricto Sensu graduate programs in Psychology. He is a reviewer for several academic journals, contributing to the evaluation and dissemination of scientific knowledge on social media. As a member of ABRACD and SBIS, he also takes part in the technical management of the São José do Rio Preto Technology Park and the Research Council at FAMERP. His areas of interest and expertise include Digital Health and Artificial Intelligence, exploring their innovative applications in healthcare and scientific research.

Margarete Ártico Baptista, Faculdade de Medicina de São José do Rio Preto, Enfermagem, Programa de Pós-graduação em Enfermagem. São José do Rio Preto, Brasil.

She holds a Bachelor's degree in Nursing from the Pontifical Catholic University of Campinas (1984), a Bachelor's degree in Specialization from the Faculty of Medicine of São José do Rio Preto (2003), a Master's degree in Health Sciences from the Faculty of Medicine of São José do Rio Preto (2006), and a PhD in Health Sciences from the Faculty of Medicine of São José do Rio Preto (2011). She is currently an associate professor at the Faculty of Medicine of São José do Rio Preto. Head of the Department of Collective Health and Professional Guidance, DESCOP, FAMERP.

Luciano Garcia Lourenção, Universidade Federal do Rio Grande: Enfermagem, Programa de Pós-graduação em Enfermagem. Rio Grande do Sul, Brasil

 Bachelor of Nursing from the Faculty of Medicine of São José do Rio Preto (Famerp, 2002), currently pursuing a degree in Public Management (Senac, 2024–present). Holds a Master’s degree (Famerp, 2006) and a PhD (Famerp, 2009) in Health Sciences, with a focus on Medicine and Related Sciences. He has completed the following specializations: Public Management at the Federal University of São Carlos (UFSCar, 2015), Epidemiology at the Federal University of Espírito Santo (UFES, 2017), Planning, Implementation, and Management of Distance Education at the Fluminense Federal University (UFF, 2017), Health Informatics at the Federal University of São Paulo (UNIFESP, 2014), Pedagogical Training in Professional Education in the Health Area: Nursing at the Oswaldo Cruz Foundation (Fiocruz, 2005), Occupational Health Nursing at the Faculty of Medicine of São José do Rio Preto (Famerp, 2004), Management of Primary Healthcare Units in the Unified Health System (SUS) at the Faculty of Medicine of São José do Rio Preto (Famerp, 2004). He completed a postdoctoral fellowship at the Epidemiology Laboratory of the School of Medicine at the Federal University of Ouro Preto (UFOP, 2020/2021). Currently, he is a Federal Public Servant in the role of Full Professor of Higher Education. He has extensive experience in teaching, research, and public management. He currently serves as an Advisor to the Minister of State at the Ministry of Social Security (Brasília/DF). He is the Scientific Editor of the journal Revista Enfermagem em Foco, published by the Federal Nursing Council (COFEN).

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Published

2026-03-02

How to Cite

Rondina, A. M. F., Santos, M. de L. S. G., Sasaki, N. S. G. M. dos S., Rondina, J. M., Baptista, M. Ártico, & Lourenção, L. G. (2026). Burden and quality of life of informal caregivers of elderly people with chronic diseases. Saúde E Pesquisa, 19, e13306. https://doi.org/10.17765/2176-9206.2026v19e13306

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Vol. 19 (2026)

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