Supervisors info:
Πατηράκη-Κουρμπάνη Ελισάβετ, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ, Επιβλέπουσα
Γιαννακοπούλου Μαργαρίτα, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Κατσαραγάκης Στυλιανός, Επίκουρος Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Summary:
Introduction: Palliative Care emphasizes in maintaining patient quality of life and aims at improving symptoms. Because their incidence varies, their assessment is necessary.
Purpose: The comparison of perceptions of oncological patients and caregivers on the problems of palliative care and the need for professional assistance in managing them, for patients receiving palliative care at home.
Method: The sample of the study was 30 patients and the corresponding 30 caregivers (response rate 54.5%), which were designated by the patients during their integration into the home care program of the "GALILEA" Palliative Care Unit (P.C.U.G.) for the period 01/07/2015 to 01/08/2016. Special permission to conduct the study was provided by the Ethics Committee of the P.C.U.G. A patient and a caregiver each completed the Problems and Needs in the Palliative Care Questionnaire short version (PCNC-sv) when they were introduced to the service and one month later. PCNC-sv is a tool for assessing 32 palliative care problems and their needs for professional assistance in managing them. Questions are categorized in the following areas: Daily Living, Physical Symptoms, Autonomy, Social, Psychological, Spiritual and Financial Issues, as well as the Need for Information. Responses are provided using a Likert-type three-step scale (0-2). Additional demographic characteristics of patients and caregivers as well as clinical characteristics of patients were collected.
Results: Most patients were female (56.7%) and the mean age of the patient was 68 years. The most common cancer diagnosis was breast (26.7%) followed by urinary (23.3%) and digestive system (16%). The mean PPS functional capacity of the patients was 64 ± 13.54. Most of the caregivers were male (53.3%) and their mean age was 56 years. Patients in the first and second measurements faced more difficulty to deal with autonomy issues (1.4 ± 0.7 and 1.4 ± 0.54 respectively) and psychological issues (1.2 ± 0.6 and 1 ± 0.53 respectively). Correspondingly, in the first and the second measurement, caregivers considered psychological problems as the most important problem of the patients (1,4 ± 0,59 and 1,4 ± 0,65 respectively) and the issues of autonomy (1,3 ± 0,65 and 1.1 ± 0.54 respectively).
In the first and second measurements of patients' responses, the highest rate of avoidance of care was in light housework (50%) and in extra costs due to illness (50%). Respectively, most of the caregivers' responses to avoidance of care were for light housework (46.7%) and additional costs due to illness (43.3%).
In the first and second measurement, the highest rates of unsatisfied needs of patients were related to sleep disorders (100%), stinging / numbness (100%) and fatigue (92.6%). Correspondingly, caregivers’ responses to the most unsatisfied patient needs were related to sleep disorders (91.7%) and pain (86.4%) in the first measurement, and in the second measurement, sleep disturbances (61.9%), poverty (61.9%) and social issues and the main difficulty was finding someone trusted to speak (100%).
In the first measurement, comparing patient-caregiver responses, caregivers answered that patients needed more professional help to manage with psychological issues and information from patients themselves (p = 0.01). In the second measurement, caregivers answered that patients had more physical problems and financial issues (p = 0.01) than what patients answered for themselves.
In addition, comparing patient responses between the two measurements, a statistically significant improvement was found in psychological problems (p=0.00), and no more professional assistance was needed (p>0.001). Comparing the responses of the caregivers, a statistically significant improvement of the patients' physical problems was found (p=0.0001).
From the correlations of demographic and clinical features, it was only found that the number of children was associated with improved responses to psychological and spiritual issues (N = 30, rho = 0.54, p = 0.003). Patients with a male caregiver (0.51 ± 0.39) had less need for professional help for psychological problems in the second measurement than those who had female caregivers (0.11 ± 0.38) (z = -2.7, p = 0.008). Patients and caregivers who described poor economic status (0.72 ± 0.44) improved their responses as to the need for professional help (x(2)²=12.8, p=0.002). Moreover, the educational level of caregivers, particularly those with higher education, improved their responses as to patients' financial problems (0.67 ± 0.75).
Conclusions: Patients and caregivers in this study described unsatisfied needs mainly related to physical problems, while problems for which they avoided assistance mainly concerned financial problems and problems of daily activities and autonomy. In addition, patients and caregivers who received palliative care agreed on their answers to the problems and needs for professional help to the patients during the study. Further study with a larger research sample will investigate the effect of patient and care demographics on patients' clinical characteristics in their responses to problems and palliative care needs.
Keywords:
Palliative care, Cancer, Cancer patient needs, Caregivers of cancer patients, Interdisciplinary team
