The burden on primary caregivers of patients with palliative needs: A multidimensional entity The burden on the primary caregivers

Abstract BackgroundThe primary caregiver is a person found in the close vicinity of the patient, who is voluntarily and actively involved in the caregiving process. The aim of this study is to measure the burden of the caregivers of palliative care patients with malignant and non-malignant diseases, over three months of follow-up and to compare the burden of caring for both groups. Method This is a prospective longitudinal study that assesses the burden of caring for patients with palliative needs, comparatively between two groups: the group of primary caregivers of patients with non-cancer diseases (PrC1) and the group of primary caregivers of cancer patients (PrC2). The tool used in the study was the Burden Scale for Family Caregivers (BSFC).Results The study contained 140 caregivers of which 77 were included in PrC1 group and 63 in the PrC2 group. The comparison of the non-oncological patients (PrC1) caregivers’ burden between the initial time (T0) and the final time (T3) showed a higher value, with statistical significance, in terms of physical exhaustion (p = 0.04) and the desire to escape from the created situation (p = 0.03). In the PrC2 group, the results comparison between T0 and T3 time showed a statistically significant increase in burden for physical exhaustion (p = 0.02), the perception of the caregiver's health care process (p = 0.03), the desire to get rid of responsibilities (p = 0.04), the relationship with the patient or other people (p = 0.03), the period of time for oneself (p = 0.045) and giving-up future plans (p = 0.03). The comparison of the burden between the two evaluated groups shows that at T0 the burden is higher in non-oncological diseases than oncological diseases, with statistical significance. ConclusionsConcerning the patients with palliative needs, it has been shown that the caregiver’s burden increases whilst the illness progresses and that there are statistically significant differences between the initial moment to the last one evaluated, therefore showing an enhancement regarding the needs and demands of the patient.