Decrease in Primary Caregivers’ Quality of Life During the Care of a Relative with Palliative Care Needs: A Prospective Longitudinal Study

Abstract

Background/Objectives: The quality of life is a complex concept that is insufficiently assessed in clinical practice. It is influenced by different factors, as follows: the individual’s characteristics, personal values and beliefs, physical and mental state, and relationship to other members of their community. The quality of life of the primary caregiver influences their health and the quality of their care interventions. This study aims to investigate how the quality of life of caregivers changes during palliative patients’ care. Methods: This is a prospective longitudinal study that assesses the different aspects of the quality of life of primary caregivers who care for patients with palliative needs. The tool used in this study was the Medical Outcomes Scale-Short Form 36 (MOS-SF36). Results: This study included 140 caregivers, of which 63 were involved in the care of patients with cancer and 77 were involved in the care of patients with non-oncological diseases. Almost 9 out of 10 caregivers were a family member of the patient and over two-thirds of these were women. The caregivers of patients with non-malignant diseases had a decreased quality of life in the following aspects: limitations in their usual role due to emotional problems, social functioning, energy, and their perception of their general health. In the group of oncological patients, the caregivers displayed limitations in their daily role due to physical health, emotional problems, and social functioning. Conclusions: The large number of responsibilities, the long time spent caring, and the uncertainty about the evolution of the disease as well as the marginalization and lack of time for oneself are some of the elements that increase caregiver burden. Along with this, the quality of life of caregivers decreases significantly in different aspects, such as physical, psycho-emotional, and social, with the perception of deteriorating general health.