JULJANA XHINDOLI

Dottoressa di ricerca

ciclo: XXXIII



Titolo della tesi: PALLIATIVE CARE IN PRIMARY HEALTH CARE: CHALLNGES AND PERSPECTIVES IN CANCER PATIENTS IN VLORA REGION

Introduction: studying the needs of cancer patients is fundamental in order to develop models where the service is offered by being adopted to patients` needs and being accessible for all. Management of these patients needs multidisciplinary approach closer to the patients and their needs based on the law for palliative care in primary health care. The aim of the study is to evaluate the parameters of the palliative care services in Vlora region and the potential to develop this service in the future. Methodology: this is a cross sectional quantitative study, comprised of three study groups. The first group “Patient experiences” was systematically selected and included 122 patients and 42 staff completed questionnaires, out of 210 cancer diagnosed patients in the region of Vlora, selected according to the medical records during the time period of November 2018-February 2020. The second group was a voluntary sample of 92 family members and family friends of the patients in the first group; the third sample included 61 nurses out of 140 nurses of primary health care services in the region of Vlora and Novosele. For each group we used three different instruments, according to the characteristics of each group as below: • Patient/client experiences – patient questionnaire & staff- completed questionnaire(Hearn J and Higginson IJ 1999) • Community Awareness of Palliative Care- CHSD • Palliative Care providers-(Weissman et al 1998) Data were analyzed in the IBM SPSS 23.0. Significance levels were bilateral, and the statistical significance was defined at level of 0.05. Chi-square test was used to conclude if there was a relationship between the different related factors. Ethical permission: the study data was collected after getting the ethical permission from the Regional Directory of Vlora Health no. 158/2018. Results: from 122 patients we noticed that 67% of them had severe pain experience, 61% severely experienced other symptoms, 43% have felt totally anxious and 55% have felt depressed, 84% of their family members were very concerned about the situation, 42% of the patients did not have any information and 52% had unresolved issues. Lack of specialized home treatment is reported by 58% of patients and increased consultation with a physician is required by 57% of patients. Lack of certain medications and reimbursement is a problem for 74% of patients. Meanwhile, 92 family members and friends responded to “Community Awareness of Palliative Care” questionnaire, mean age 41 years. 35% of them never heard of palliative care, 50% do not have any knowledge on palliative care. About 73% responded that this service does not fulfil the needs of the community, 74% did not have the necessary support, 36% need basic care at home, 26% need daily care for their family members, 24% need voluntary help. As for the needs of community they ask for home care(25%), qualified staff (9%), specialized centers and the presence of a psychologist. The responses of 61 nurses of primary health care, with mean age 38.5 years, show that 36% never had training in palliative care, 50% learned to offer this care through work experience. The state that they need more basic instructions on: death process(53%), effects of certain medications(31%), pain management(23%), terminal delirium(39%), terminal dyspnea(31%), nausea/vomiting(16%), constipation(20%). Conclusions: the data of the study indicate that palliative care in primary health services still does not function, patients and community present many unresolved issues in many areas, the staff needs training in palliative care area. It is needed to develop a program for education of the nurses and increasing their practical skills. Key words: palliative care, primary health services, challenges, barriers, Albania

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