5th International Conference on Heart and Cardiovascular Diseases

Bianca Pinheiro is a registered nurse, graduated from the Faculty of Medicine of São José do Rio Preto-SP (FAMERP 2003). Currently working at Unimed in São José do Rio Preto, SP, in the Infusion Center, an outpatient sector where elective medications such as antibiotic therapy, vitamins, and biological drugs are administered safely and humanely, prioritizing standardization, science, technology, care, and respect for the patient and their loved ones. Master's degree in Nursing from the Faculty of Medicine of São José do Rio Preto (FAMERP 2025) with a dissertation on: Quality of Life and Workload of Caregivers of Patients in Palliative Care (Stricto Sensu Postgraduate Program).Specialization in Oncological Nursing and Bone Marrow Transplantation from Universidade Cidade de São Paulo-SP (2007-04-09 to 2008-12-12) . Monograph Title: Autotransplantation of Hematopoietic Stem Cells in Children Diagnosed with Neuroblastoma from a Nursing Perspective. Advanced Training Course in Oncology Nursing at the Hospital das Clínicas of the Faculty of Medicine of the University of São Paulo: São Paulo

Key Concepts

• Palliative care: an active, holistic approach delivered by a multidisciplinary team. It aims to improve the quality of life of people with serious illness, and of their families. It prevents and relieves physical, psychosocial and spiritual suffering.
• Informal caregiver: a person who gives care without pay and without a professional bond. In palliative care, this is usually a close relative, such as a spouse, child, parent or sibling. • Caregiver burden: the physical, emotional, social and financial strain that continuous caregiving creates.
• Quality of life (WHO definition): a person's perception of their position in life. It depends on their culture, values, goals, expectations and concerns. It has several dimensions: physical, psychological, social and environmental.

Problem and Objective

Demand for palliative care is growing. Population aging and chronic disease drive this growth. The authors cite an estimate of 56.8 million people per year who need this care worldwide. Families carry much of this care. Yet Brazilian practice, especially in the public health system (SUS), still focuses on the patient. Services do not systematically assess caregivers' needs. The study asks one question: how are caregiver burden and caregiver quality of life correlated?

Method

• Design: quantitative, analytical, cross-sectional study, reported following the STROBE guidelines.
• Setting and period: a large teaching hospital in the interior of São Paulo State, Brazil, from October 2023 to March 2024.
• Sample: 70 informal caregivers, chosen by convenience sampling. Each had cared for the patient for at least six months.
• Instruments: a sociodemographic questionnaire; the WHOQOL-bref (quality of life in four domains, scored 0 to 100, higher is better); and the QASCI-short version (14 items, seven burden dimensions, total 14 to 70, higher means greater burden).
• Analysis: descriptive statistics, Shapiro-Wilk normality test and Spearman's correlation, at a 5% significance level, using R.
• Ethics: approved by a research ethics committee through Plataforma Brasil.

Main Results

Profile of caregivers

• 77.1% were women. Mean age was 53.
• • 82.8% were relatives of the patient. The largest group, 40%, were children.
• • 68.6% spent more than 18 hours a day on care. • 64.3% had no work activity.
• • 51.4% earned R$1,000 to R$3,000 per month.

Burden

• • Most caregivers had moderate burden (54.3%).
• • 32.8% had low burden and 12.8% had high burden. No caregiver had severe burden.

Quality of life

• Perception was generally good.
• The social domain varied most between caregivers.
• Mean domain scores: physical 60.75, psychological 67.08, social 60.36, environmental 67.67.

Other findings

• • Financial burden was moderate on average, but varied widely.
• • Satisfaction with the caregiving role was very high (mean 4.64 out of 5).
• • Perceived family support was moderate to high.

Correlations between burden and quality of life

• • Emotional burden correlated negatively with the psychological, social and environmental domains.
• • Personal life implications correlated negatively with all domains, according to the authors.
• • Financial burden correlated negatively with the physical, psychological and environmental domains.
• • Family support correlated positively with the social and environmental domains.
• • "Reactions to demands" and satisfaction with the role showed no significant correlation.

Conclusion

Higher burden tends to go with lower quality of life. Family support goes with better quality of life. Caregivers feel strain, yet most are satisfied with their role. The authors argue that this calls for stronger public policies that prevent illness in caregivers and monitor them. Nurses and multidisciplinary teams should offer education and support groups.

Limitations

The study is cross-sectional, so it shows association, not causation. It took place in one hospital, with a small convenience sample. Caregiver profiles may therefore be over- or under-represented. The authors call for larger, longitudinal, multi-site studies.

Relevance to Cardiology

This study did not measure cardiovascular outcomes. Its patients received palliative care in a general hospital, not in cardiology. Its relevance to cardiology lies in the clinical setting. Palliative care also serves patients with advanced heart disease, such as advanced heart failure, and their relatives often provide most of the daily care. The findings show that a heavier emotional, financial and personal burden goes with lower caregiver quality of life. Family support goes with better quality of life. Cardiology teams can use this evidence to screen caregivers early and to include them in care plans for patients with advanced heart disease. Future studies should test these associations in cardiac populations.