Community engagement and -education are proposed to foster equity in access to care and to ensure dignity of migrant patients in the last phase of life, but evidence is lacking. We evaluated nine community educational interactive meetings about palliative care (136 participants totally)- co-created with educators from our target groups of Moroccan, Surinamese and Turkish migrants-with a mixed methods approach, including 114 questionnaires, nine observations, nine interviews with educators, and 18 pre- and post- group- and individual interviews with participants. Descriptive and thematic analysis was used. 88% of the participants experienced the meetings as good or excellent. Educators bridged an initial resistance toward talking about this sensitive topic with vivid real-life situations. The added value of the educational meetings were: (1) increased knowledge and awareness about palliative care and its services (2) increased comprehensiveness of participant's wishes and needs regarding dignity in the last phase; (3) sharing experiences for relief and becoming aware of real-life situations. Community engagement and -education about palliative care for migrants effectively increases knowledge about palliative care and is a first step towards improved access to palliative care services, capacity building and a dignified last phase of life among migrants.
BACKGROUND: Palliative care is one of the necessary elements in the treatment of children with cancer. Adaptation of country-specific palliative care practices to universal standards can provide valuable information for health care stakeholders.
AIM: This study proposed to evaluate the global compliance of palliative care for children with cancer among select Middle Eastern countries.
METHODS: In this comparative study, information about palliative care principles in Iran, Jordan, Saudi Arabia, Lebanon and Turkey was extracted from the literature. Data were collected using a checklist based on the conceptual framework of palliative care inspired by Wolff and Browne's (2011) standards. Then the extracted information was compared and analysed.
FINDINGS: The palliative care standards in the selected countries did not show full compliance with global standards. In all selected countires, the child's and family's needs were considered, and a comprehensive care approach was followed. However, in none of the selected countries was the child's agreement to discharge from the hospital obtained, and neither was it ensured that the needs of the child and family were met.
CONCLUSIONS: Palliative care principles in the selected Middle Eastern countries are far from meeting universal standards. Accordingly, planning and training are recommended in different domains of nursing education as well as clinical nursing in the care of children. Healthcare authorities and politicians must provide the appropriate conditions for better provision of palliative care for children with cancer.
A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients.
Nursing students may feel unprepared to manage the care of dying individuals and may experience anxiety and fear related to death and dying. Preparing nursing students for this situation can help them provide quality care to dying patients. This study aimed to examine the end-of-life care values and behaviors and death attitudes of senior nursing students. In examining these variables, the Values and Behaviors of Intensive Care Nurses for End-of-Life Instrument and the Death Attitude Profile-Revised Scale were used. It was found that the students developed positive attitudes and behavior towards end-of-life care, and that they believed death to be a natural part of life and there is life after death. Students who felt that the information they received during their education was partially sufficient were more likely to have negative death attitudes. It can be recommended that teaching strategies in the education of the nursing students be developed.
BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries.
AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients.
DESIGN: Qualitative thematic analysis of semi-structured interviews.
PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed.
RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses.
CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.
INTRODUCTION: Palliative care (PC) is a holistic philosophy of care that can only be obtained through the awareness of public and healthcare professionals, PC training and good integration into the health system. Depending on health system structures, there are differences in PC models and organisations in various countries. This study is designed to evaluate the current status of PC services in Turkey, which is strongly supported by national health policies.
METHODS: The data were collected through official correspondence with the Ministry of Health, Provincial Directorate of Health and hospital authorities. Numbers of patients who received inpatient PC, the number of hospital beds, diagnosis of disease, duration of hospitalisation, the first three symptoms as the cause of hospitalisation, opioid use, place of discharge and mortality rates were evaluated.
RESULTS: A total of 48,953 patients received inpatient PC support in 199 PC centres with 2,429 beds over a 26-month period. The most frequent diagnosis for hospitalisation was cancer (35%), and the most common symptom was pain (25%). Opioids were used in 26.7% of patients.
CONCLUSION: Steps should be taken for PC training and providing continuity through organisations outside the hospital and home care.
THEORY: Empathy has a potentially complicated relationship with dealing with death and dying. Having clinical empathy can improve interactions with dying, but educational interventions aimed at fostering empathy may cause medical students to connect emotionally with dying patients and behave unprofessionally out of self-defense. Cognitively-based clinical empathy should lead to positive attitudes toward death and dying by adhering to the principles of detached concern and professionalism. Hypotheses: The main components of cognitively-based clinical empathy are negatively correlated with (1) difficulty communicating with dying patients and their relatives, and (2) avoidance of death and dying.
Method: This cross-sectional study included 372 medical students from two universities in Konya, Turkey. Data were collected via a survey consisting of three parts: socio-demographic information, the Turkish version of Jefferson Scale of Empathy-Student Version (JSE-S), and the Turkish Approach to Death and Dying Patients Attitude Scale. Independent samples t-test and one-way analysis of variance were used for comparative analysis. Bivariate and partial correlation analyses were used to assess the associations between variables.
Results: Perspective-taking and compassionate care were significantly and moderately positively correlated with difficulty communicating with the dying and their relatives. Perspective-taking and compassionate care had significant, but weak positive correlations with avoiding death and dying. There was no significant correlation between standing in the patient's shoes and either communication or avoidance.
Conclusions: Both hypotheses were rejected. The present findings raise questions regarding whether the JSE-S is an effective operationalization of cognitively-based clinical empathy. Perspective-taking and compassionate care as measured by the JSE-S may reflect a propensity to engaging emotionally that leads to negative attitudes toward death and dying in medical students. If so, reducing the negative effects of emotional engagement seems crucial for developing positive attitudes toward death and dying in medical students.
BACKGROUND: COVID-19 pandemic could create a collateral damage to cancer care denoting disruptions in care due to a significant burden on healthcare and resource allocations. Herein, we evaluate the early changes in the inpatient and outpatient oncology clinics to take a snapshot of this collateral damage at Hacettepe University Cancer Institute.
METHODS: Patients applying the outpatient clinic and outpatient palliative care (OPC) clinic for the first time and patients admitted to inpatient wards in the first 30 days after the first case of COVID-19 in Turkey were evaluated. These data were compared with data from the same time frame in the previous 3 years.
RESULTS: The mean number of daily new patient applications to the outpatient clinic (9.87±3.87 vs 6.43±4.03, p<0.001) and OPC clinic (3.87±1.49 vs 1.13±1.46, p<0.001) was significantly reduced compared with the previous years. While the number of inpatient admissions was similar for a month frame, the median duration of hospitalisation was significantly reduced. The frequency of hospitalisations for chemotherapy was higher than in previous years (p<0.001). By comparison, the rate of hospitalisations for palliative care (p=0.028) or elective interventional procedures (p=0.001) was significantly reduced.
CONCLUSION: In our experience, almost all domains of care were affected during the pandemic other than patients' systemic treatments. There were significant drops in the numbers of newly diagnosed patients, patients having interventional procedures and palliative care services, and these problems should be the focus points for the risk mitigation efforts for prevention of care disruptions.
The aim of the research was to conduct the Turkish validity and reliability study of the Frommelt Attitude toward Care of the Dying Scale. The study used a cross-sectional research design. The sample of the study consists of 236 intensive care nurses. The data were analyzed using SPSS 22.0 and SPSS AMOS 22.0 programs. Descriptive statistical methods, reliability analysis, exploratory and confirmatory factor analyses were used in the analysis of the data. According to the findings of the exploratory factor analysis, the scale was divided into six factors as in its original. According to results of the confirmatory factor analysis showed that the goodness of fit of the scale was acceptable level. Cronbach’s alpha coefficients of the Frommelt Attitude toward Care of the Dying and subdimensions were found to be between 0.606 and 0.800. These results showed that the Turkish form of scale was valid and reliable and it had the necessary conditions for using Turkish form.
The descriptive study was conducted to investigate the knowledge, opinions, behaviors of senior nursing students regarding euthanasia and factors in Islam influencing these. Almost all students (97.7%) knew about euthanasia. Their knowledge, opinions and behaviors were affected by their beliefs about death, religious beliefs and the idea of being subject to euthanasia themselves. Religion influenced whether they wanted euthanasia to be legalized or would carry it out secretly. Students who would be willing for their relatives to undergo euthanasia would not want to participate in this. Knowledge about the concept of euthanasia should be increased and the subject further investigated in many dimensions.
This study aims to investigate the relationship between death anxiety of the Turkish nurses and their attitudes toward the dying patient. This study involved 203 nurses who were working at a university hospital. The data were collected using “Nurse Information Form” (which was prepared by the authors of this research), “Thorson-Powell Death Anxiety Scale,” and “Attitude Scale about Euthanasia, Death, and Dying Patient.” There was a positive correlation between death anxiety and dying patient avoidance behavior and euthanasia score (p < .05). The findings showed that nurses, death anxiety, and death scores were high in the loss of a close relatives (p < .05). Our findings suggest that the situation of the dying patients and their families and also nurses should be improved. Thus, special psychological education/training should be given to the nurses to deal with death anxiety and their attitude to the dying patient.
This study has been conducted with the purpose of identifying the perceptions of palliative nurses about death and determining palliative care practices. We conducted qualitative interviews with 23 palliative care nurses in Turkey. Content analysis was used in the evaluation of the data. Three themes have been identified about perception of death. Furthermore, three themes have been identified about palliative care practices. It was concluded that the palliative nurses perceive death as a natural and inevitable process and that as long as their working period increases, they become desensitized. It was identified that the participants generally perform the following procedures in palliative care practices.
The aim of this research is to investigate death anxiety of the people who live in Turkey and Denmark and have the same cultural background. Cross-cultural studies about death anxiety have been conducted within two different cultures. The goal is to fill the gap in the literature. In this context, participants’ self-esteem and personality traits were also investigated. Death Anxiety Scale, Rosenberg Self-Esteem Scale, and The Big Five Inventory were used in this study. Seventy-four people from Turkey and 67 from Denmark participated in this research. According to the results, people who live in Turkey have more death anxiety. There is negative correlation between self-esteem and death anxiety. Neuroticism of the personality traits has positive correlation with death anxiety.
The new technologies have changed the rituals related to death: Creation of memorial webpages and of virtual tombs, celebration of death anniversaries are now common currency on the Internet. In spite of their disappearance among the living, the deceased continue to exist on the Web. They still receive messages from their relatives but also from strangers and are at the heart of discussions, prolonging their presence. New technologies have led to a new concept of time and of “where life ends.” Through the analysis of Facebook’s accounts devoted to Turkish martyrs, this article aimed to describe the new funeral rituals seen on the Internet.
The purpose of the study was to investigate the relationship between death anxiety and depressive and anxiety symptoms among Norwegian and Turkish female psychology students. For this purpose, 304 participants were recruited, of whom 127 were Norwegian and 177 were Turkish. Participants’ ages ranged from 18 to 35 years. The Beck Depression Inventory, the trait anxiety subscale of the State-Trait Anxiety Inventory, and the Death Anxiety Scale were used to examine these relationships. The findings showed that death anxiety was significantly related to depressive and anxiety symptoms in both countries. Furthermore, Turkish participants scored higher on both death anxiety and depressive and anxiety symptoms than their Norwegian counterparts. The findings encourage researchers to focus more on the relationship between death anxiety and depressive and anxiety symptoms in a cross-cultural frame.
This study aims to examine perceptions and attitudes toward euthanasia among university students who are pursuing bachelor’s degrees. Although the legalization and application of euthanasia are discussed commonly by health-care professionals and partially by lawyers, the ideas of other segments of society, especially university students, are taken place very rarely. The research was conducted descriptively to determine the ideas of 1,170 students at Kastamonu University from six different departments: arts and sciences, theology, tourism, nursing, school of physical education, and sports with using a questionnaire. Findings demonstrated that 73.2% of the students do not approve euthanasia. Also, it was found that there are significant differences depending on age, gender, department of study, income level, place of living, and the loss of kinsmen. This study serves as a resource for future research to understand the effects of sociodemographic characteristics on the decision of euthanasia.
Background/aim: Validated measures in palliative cancer patients are very important in the evaluation and management of the disease. The Karnofsky Performance Scale (KPS) has been used for many years to assess the performance status of cancer patients. The aim of this study is to determine the validity and reliability of the KPS in cancer patients receiving palliative care in Turkey.
Materials and methods: Eighty patients with a cancer diagnosis who were admitted to Gaziosmanpasa University Medical Faculty Hospital Palliative Care Unit between 01.03.2016 and 01.03.2017 were included in the study. KPS, measurements from the Katz Activi-ties of Daily Living (ADL) scale, and Basic Activities of Daily Living (BADL) scale were recorded. The alpha coefficient (Cronbach) was calculated by using SPSS version 20.0. The P-value was accepted as P < 0.05 in the analysis of the data.
Results: There was a positive and strong correlation between Katz ADL scale total score and KPS score (r = 0.895; P < 0.001). In addition, there was a strong negative correlation between the total score of BADL scale and KPS score (r = –0.894; P < 0.001). As for the reliability of the scale scores, Cronbach’s alpha coefficient found to be 0.720.
Conclusion: KPS is a reliable scale for Turkish cancer patients in palliative care settings.
BACKGROUND: Three different models are commonly used to provide palliative care services to cancer patients in Turkey: comprehensive palliative care center (CPCC), hospital inpatient services (HIS) and home healthcare (HHC).
OBJECTIVES: The purpose of this study was to evaluate the cost-effectiveness of three alternative palliative care models for cancer patients.
METHODS: The study included a total of 160 patients diagnosed with cancer (CPCC:60, HIS:59, HHC:41). The patients' quality of life and their levels of satisfaction were used as the indicators of effectiveness, while direct and indirect costs incurred by service providers, patients and relatives were considered in estimating the costs of alternative models. The cost and effectiveness of the alternatives compared the "patient perspective" and "societal perspective" separately.
RESULTS: From a societal perspective, palliative care services provided the HIS model was found to be more cost-effective than the CPCC model. From a patient perspective, HHC was found to be more cost-effective compared to the other two models.
CONCLUSIONS: This study has the potential to provide substantial evidence to health managers and decision-makers with respect to health planning and the formulation of social security policies in Turkey.
Grief following a death loss is a common experience that all individuals face at some point in life. There, however, are only a few in-depth studies regarding grief in cultures around the world and specific roles that rituals and beliefs related to death may have in the grieving process. Results of interview data from eight grieving Turkish women revealed three themes: (a) metaphors of loss, (b) funeral rituals, and (c) rituals in relation to control and personal factors. Overall, participants' sense of control appeared to influence their grief experiences and perceptions of rituals.
BACKGROUND: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.
OBJECTIVE: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.
METHODS: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.
RESULTS: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.
CONCLUSION: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.