Pub Date : 2021-12-31DOI: 10.1080/09699260.2021.1988311
Madelena Arnone, Lynn Grandmaison Dumond, N. Yazdani, Rayan El-Baroudi, Annie Pouliot, S. Modanloo
Abstract This study aimed to explore grandparents’ experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group was implemented, followed by a cross-sectional survey with open-ended questions. The death happened mostly in the last 2 years (26, 90%). The findings revealed the presence of grief (mean score of 67, SD 13) and existing perception of socially supportive behaviors (mean score of 79, SD 23) after participation in the bereavement group. The thematic analysis showed three themes of ‘We are feeling it; There are ways to heal and return to a different normal; We want to help our family’. This study adds to the existing literature about the experience of grandparents coping with grief, explores some of their challenges, and needs after the death of a grandchild.
{"title":"Evaluation of a grandparent bereavement support group in a Pediatric Palliative Care Hospice","authors":"Madelena Arnone, Lynn Grandmaison Dumond, N. Yazdani, Rayan El-Baroudi, Annie Pouliot, S. Modanloo","doi":"10.1080/09699260.2021.1988311","DOIUrl":"https://doi.org/10.1080/09699260.2021.1988311","url":null,"abstract":"Abstract This study aimed to explore grandparents’ experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group was implemented, followed by a cross-sectional survey with open-ended questions. The death happened mostly in the last 2 years (26, 90%). The findings revealed the presence of grief (mean score of 67, SD 13) and existing perception of socially supportive behaviors (mean score of 79, SD 23) after participation in the bereavement group. The thematic analysis showed three themes of ‘We are feeling it; There are ways to heal and return to a different normal; We want to help our family’. This study adds to the existing literature about the experience of grandparents coping with grief, explores some of their challenges, and needs after the death of a grandchild.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47830427","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-12-08DOI: 10.1080/09699260.2021.2005756
Abbey Frame, J. B. Grant, E. Layard, Brett Scholz, E. Law, K. Ranse, I. Mitchell, M. Chapman
End-of-life care involves treatment and support offered to terminally ill individuals and their caregivers. Effective communication and decision-making, illness and symptom management, relationship with doctors, characteristics of the health care team, and the involvement and needs of caregivers have all been proposed to contribute to the quality of the end-of-life experience. This study sought to establish bereaved caregivers’ experiences of the quality of the elements of end-of-life care delivered to their loved ones. Bereaved caregivers who had lost a loved one who was cared for in an acute care University-affiliated hospital, with 670 beds, located in the Australian Capital Territory during the previous 6−12 months (N=91), were surveyed using a modified version of the Canadian Health Care Evaluation Project questionnaire. The findings indicated that the bereaved caregivers were generally very satisfied with their loved one’s end-of-life care. The age of the caregiver, the preferred location of death for both patient and caregiver, if death was expected, and religious affiliation were associated with satisfaction of the end-of-life care delivered. Key areas for improvement of end-of-life care included factors related to the relationships between doctors and those receiving care, characteristics of the health care team, illness management, communication and decision-making, and the involvement of caregivers. These findings have significant implications for this hospital and those seeking to improve outcomes in end-of-life care settings more widely, by providing baseline data on caregiver-evaluated care quality and identifying high-priority areas for targeted intervention.
{"title":"Bereaved caregivers’ satisfaction with end-of-life care","authors":"Abbey Frame, J. B. Grant, E. Layard, Brett Scholz, E. Law, K. Ranse, I. Mitchell, M. Chapman","doi":"10.1080/09699260.2021.2005756","DOIUrl":"https://doi.org/10.1080/09699260.2021.2005756","url":null,"abstract":"End-of-life care involves treatment and support offered to terminally ill individuals and their caregivers. Effective communication and decision-making, illness and symptom management, relationship with doctors, characteristics of the health care team, and the involvement and needs of caregivers have all been proposed to contribute to the quality of the end-of-life experience. This study sought to establish bereaved caregivers’ experiences of the quality of the elements of end-of-life care delivered to their loved ones. Bereaved caregivers who had lost a loved one who was cared for in an acute care University-affiliated hospital, with 670 beds, located in the Australian Capital Territory during the previous 6−12 months (N=91), were surveyed using a modified version of the Canadian Health Care Evaluation Project questionnaire. The findings indicated that the bereaved caregivers were generally very satisfied with their loved one’s end-of-life care. The age of the caregiver, the preferred location of death for both patient and caregiver, if death was expected, and religious affiliation were associated with satisfaction of the end-of-life care delivered. Key areas for improvement of end-of-life care included factors related to the relationships between doctors and those receiving care, characteristics of the health care team, illness management, communication and decision-making, and the involvement of caregivers. These findings have significant implications for this hospital and those seeking to improve outcomes in end-of-life care settings more widely, by providing baseline data on caregiver-evaluated care quality and identifying high-priority areas for targeted intervention.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43193745","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-11-22DOI: 10.1080/09699260.2021.2000807
S. Karacsony, J. Martyn, J. Rosenberg, S. Andrews
Background and Aim The long-term care workforce is a significant provider of palliative care. The majority of older people being admitted to long-term care have palliative care needs and many are approaching end of life. The long-term care workforce comprises both registered health care professionals and unlicensed health care workers (UHCW) who provide most direct care. Studies that have examined palliative care competence in long-term care have focused on staff knowledge. However, it is also important to understand staff attitudes, beliefs, and values towards palliative care because these attributes influence behaviours related to care provision. The aim of the qualitative evidence synthesis is to identify and appraise the best available qualitative evidence on the attitudes, beliefs, and values of the long-term care workforce towards palliative care. Inclusion criteria The review will consider original research that reports qualitative findings of long-term care staff and their attitudes, beliefs, and values regarding palliative care for residents of long-term care facilities. Methods The following databases will be searched for eligible papers: CINAHL, EMBASE, PubMed, PsychINFO, and Scopus. Studies that meet the inclusion criteria by addressing all of the phenomena of interest will be reviewed using the Joanna Briggs Institute (JBI) methodology for systematic reviews of qualitative evidence. Two reviewers will independently assess the studies for methodological quality. The data will be extracted using the standardized JBI SUMARI extraction tool. Specific details about authors and publication date, study design, aims, context, population, cultural and linguistic background, location, main findings, limitations, and conclusions will be extracted and a level of credibility assigned. Categories will be developed from the findings. The findings will be presented diagrammatically and accompanied by a narrative to explain categories and synthesised findings. Discussion The review of the literature will synthesis key findings pertaining to the attitudes, beliefs, and values of the workforce providing palliative care to older people in long-term care, beyond what is known about palliative care knowledge in this workforce.
{"title":"Exploring the attitudes, beliefs, and values of the long-term care workforce towards palliative care: A qualitative evidence synthesis protocol","authors":"S. Karacsony, J. Martyn, J. Rosenberg, S. Andrews","doi":"10.1080/09699260.2021.2000807","DOIUrl":"https://doi.org/10.1080/09699260.2021.2000807","url":null,"abstract":"Background and Aim The long-term care workforce is a significant provider of palliative care. The majority of older people being admitted to long-term care have palliative care needs and many are approaching end of life. The long-term care workforce comprises both registered health care professionals and unlicensed health care workers (UHCW) who provide most direct care. Studies that have examined palliative care competence in long-term care have focused on staff knowledge. However, it is also important to understand staff attitudes, beliefs, and values towards palliative care because these attributes influence behaviours related to care provision. The aim of the qualitative evidence synthesis is to identify and appraise the best available qualitative evidence on the attitudes, beliefs, and values of the long-term care workforce towards palliative care. Inclusion criteria The review will consider original research that reports qualitative findings of long-term care staff and their attitudes, beliefs, and values regarding palliative care for residents of long-term care facilities. Methods The following databases will be searched for eligible papers: CINAHL, EMBASE, PubMed, PsychINFO, and Scopus. Studies that meet the inclusion criteria by addressing all of the phenomena of interest will be reviewed using the Joanna Briggs Institute (JBI) methodology for systematic reviews of qualitative evidence. Two reviewers will independently assess the studies for methodological quality. The data will be extracted using the standardized JBI SUMARI extraction tool. Specific details about authors and publication date, study design, aims, context, population, cultural and linguistic background, location, main findings, limitations, and conclusions will be extracted and a level of credibility assigned. Categories will be developed from the findings. The findings will be presented diagrammatically and accompanied by a narrative to explain categories and synthesised findings. Discussion The review of the literature will synthesis key findings pertaining to the attitudes, beliefs, and values of the workforce providing palliative care to older people in long-term care, beyond what is known about palliative care knowledge in this workforce.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47097398","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-11-02DOI: 10.1080/09699260.2021.1992088
Julia Panascia
Dear Editor, I read with great interest the article ‘Medical students do not feel confident in managing palliative care as future doctors’ by Melgaard and Neergaard [1] in Progress in Palliative Care. I wanted to offer my perspective on the article as a medical student with an interest in palliative care as well as a student who has faced many interruptions to my undergraduate medical education due to the COVID-19 pandemic. I am not surprised that the results of the study by Melgaard and Neergaard [1] found that medical students do not feel confident in managing palliative care. The literature recognises that medical students are often shielded from seeing really sick patients and undergraduate medical training is centred around fixing people [2]. I have often observed amongst my peers the harmful ideology that a dying patient is a failure. We fail our patients when we cannot see beyond ‘fixing their ailment’ and as a result, neglect to bring comfort and dignity to their lives. I am concerned that the lack of confidence and negative attitudes towards palliative care in medical students may stem from lack of exposure to patients in palliative care. It is interesting that a study by Hammel et al. [3] found that the British palliative care curriculum lead to medical students with ‘more confidence and more supportive attitudes towards PC (palliative care)’ compared to students from the United States. Medical education has had to face huge disruptions, challenges and changes due to the COVID-19 pandemic. I read an article by Boland et al. [4] that highlighted, as junior doctors we will inexorably have to face caring for a dying patient throughout our career. However, by the time I graduate, I will have only encountered palliative care via online teaching. It concerns me that I will not have had first-hand experience with the complex interplay of symptom management, psychological, social and spiritual support seen in palliative care. How I am supposed to forge empathic connections with patients with incurable illnesses, if I have never witnessed the profound difficulties of their experience? I agree with the author’s narrative that it very important to evaluate student confidence and knowledge, in particular when implementing new, elaborate curriculum changes in palliative care. This article is even more pertinent to the undergraduate medical curriculum now. I believe it raises questions as to whether my own medical school and potentially other British medical schools have done enough to evaluate confidence and attitudes towards palliative care. I think it is crucial that more studies are conducted to ascertain the impacts of the COVID-19 pandemic on undergraduate palliative care teaching. Yours sincerely,
{"title":"Comment on: ‘Medical students do not feel confident in managing palliative care as future doctors’","authors":"Julia Panascia","doi":"10.1080/09699260.2021.1992088","DOIUrl":"https://doi.org/10.1080/09699260.2021.1992088","url":null,"abstract":"Dear Editor, I read with great interest the article ‘Medical students do not feel confident in managing palliative care as future doctors’ by Melgaard and Neergaard [1] in Progress in Palliative Care. I wanted to offer my perspective on the article as a medical student with an interest in palliative care as well as a student who has faced many interruptions to my undergraduate medical education due to the COVID-19 pandemic. I am not surprised that the results of the study by Melgaard and Neergaard [1] found that medical students do not feel confident in managing palliative care. The literature recognises that medical students are often shielded from seeing really sick patients and undergraduate medical training is centred around fixing people [2]. I have often observed amongst my peers the harmful ideology that a dying patient is a failure. We fail our patients when we cannot see beyond ‘fixing their ailment’ and as a result, neglect to bring comfort and dignity to their lives. I am concerned that the lack of confidence and negative attitudes towards palliative care in medical students may stem from lack of exposure to patients in palliative care. It is interesting that a study by Hammel et al. [3] found that the British palliative care curriculum lead to medical students with ‘more confidence and more supportive attitudes towards PC (palliative care)’ compared to students from the United States. Medical education has had to face huge disruptions, challenges and changes due to the COVID-19 pandemic. I read an article by Boland et al. [4] that highlighted, as junior doctors we will inexorably have to face caring for a dying patient throughout our career. However, by the time I graduate, I will have only encountered palliative care via online teaching. It concerns me that I will not have had first-hand experience with the complex interplay of symptom management, psychological, social and spiritual support seen in palliative care. How I am supposed to forge empathic connections with patients with incurable illnesses, if I have never witnessed the profound difficulties of their experience? I agree with the author’s narrative that it very important to evaluate student confidence and knowledge, in particular when implementing new, elaborate curriculum changes in palliative care. This article is even more pertinent to the undergraduate medical curriculum now. I believe it raises questions as to whether my own medical school and potentially other British medical schools have done enough to evaluate confidence and attitudes towards palliative care. I think it is crucial that more studies are conducted to ascertain the impacts of the COVID-19 pandemic on undergraduate palliative care teaching. Yours sincerely,","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41750437","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-10DOI: 10.1080/09699260.2021.1975397
Amanda Fischer, Annabelle May, Matthew Lancaster, Kim Alexander, P. Good
Abstract In Australia, despite the growing need for palliative care, there is a shortage of palliative care professionals. The literature suggests that nurse practitioners (NPs) are well positioned to innovate the current model of palliative medicine. This prospective study evaluates the implementation of a new NP role within an established multidisciplinary palliative care service. In this study, patients under the care of the NP had fewer admissions to an acute hospital compared to the rest of the service (17.0% vs. 27.2%), as well as no acute admissions for terminal care and a greater number of patients who achieved their preferred place of death (87.2% vs. 72.2%). A survey of the multidisciplinary team revealed that the majority of responders (93.3%) felt that the NP role had a positive impact on patient care and was holistic, safe, and met patients’ needs. Neutral or negative survey responses highlighted the need for further education or refinement of the role in areas such as prescribing and ability to refer patients directly to medical specialists. Overall, study results were positive and support the introduction of the NP role into a specialist palliative care service but more research is required to assess the effectiveness of the role.
{"title":"Evaluation of a nurse practitioner role within a specialist palliative care service in Australia","authors":"Amanda Fischer, Annabelle May, Matthew Lancaster, Kim Alexander, P. Good","doi":"10.1080/09699260.2021.1975397","DOIUrl":"https://doi.org/10.1080/09699260.2021.1975397","url":null,"abstract":"Abstract In Australia, despite the growing need for palliative care, there is a shortage of palliative care professionals. The literature suggests that nurse practitioners (NPs) are well positioned to innovate the current model of palliative medicine. This prospective study evaluates the implementation of a new NP role within an established multidisciplinary palliative care service. In this study, patients under the care of the NP had fewer admissions to an acute hospital compared to the rest of the service (17.0% vs. 27.2%), as well as no acute admissions for terminal care and a greater number of patients who achieved their preferred place of death (87.2% vs. 72.2%). A survey of the multidisciplinary team revealed that the majority of responders (93.3%) felt that the NP role had a positive impact on patient care and was holistic, safe, and met patients’ needs. Neutral or negative survey responses highlighted the need for further education or refinement of the role in areas such as prescribing and ability to refer patients directly to medical specialists. Overall, study results were positive and support the introduction of the NP role into a specialist palliative care service but more research is required to assess the effectiveness of the role.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42000010","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-03DOI: 10.1080/09699260.2021.1980649
Anica Pless Kaiser, Kelly O'Malley, Jennifer Moye, Anna G Etchin, Lynn Korsun, Rachel Weiskittle, Hannah Bashian, Katherine Kemp, Zachary S Sager
At the end of life, individuals may re-engage with earlier life trauma as they reflect on life experiences and confront their mortality. As such, posttraumatic stress disorder (PTSD) symptoms at the end of life may worsen the quality of death experience. This is a concern for military veterans, who tend to have more trauma exposures and higher rates of PTSD, and particularly for veterans receiving care in rural areas where access to PTSD specialty services is limited. To better understand this issue, we conducted 10 focus groups with clinicians serving veterans in rural communities across five U.S. states. The aims of this project were to evaluate: (1) do hospice and palliative care providers/staff observe PTSD symptoms in veterans at the end of life? (2) if so, how are symptoms similar to and different from existing DSM-5 criteria for PTSD? We used qualitative content analysis with mixed deductive and inductive approaches to code 151 anonymized statements. Analyses found descriptions of PTSD symptoms aligned broadly with existing diagnostic nomenclature, but descriptions revealed specific presentations relevant to the end of life setting such as resistance to care, agitation, restlessness, and effects of delirium. In addition, some veterans expressed pride in service and openness to discussing military experiences. Further, clinicians noted that PTSD symptoms were relevant to family dynamics. Future research should further characterize these symptom differences through direct patient assessment and develop resources to improve quality of death experience for veterans with PTSD symptoms.
{"title":"Hospice and palliative care clinicians' perceptions of posttraumatic stress disorder at end-of-life in military veterans.","authors":"Anica Pless Kaiser, Kelly O'Malley, Jennifer Moye, Anna G Etchin, Lynn Korsun, Rachel Weiskittle, Hannah Bashian, Katherine Kemp, Zachary S Sager","doi":"10.1080/09699260.2021.1980649","DOIUrl":"10.1080/09699260.2021.1980649","url":null,"abstract":"<p><p>At the end of life, individuals may re-engage with earlier life trauma as they reflect on life experiences and confront their mortality. As such, posttraumatic stress disorder (PTSD) symptoms at the end of life may worsen the quality of death experience. This is a concern for military veterans, who tend to have more trauma exposures and higher rates of PTSD, and particularly for veterans receiving care in rural areas where access to PTSD specialty services is limited. To better understand this issue, we conducted 10 focus groups with clinicians serving veterans in rural communities across five U.S. states. The aims of this project were to evaluate: (1) do hospice and palliative care providers/staff observe PTSD symptoms in veterans at the end of life? (2) if so, how are symptoms similar to and different from existing DSM-5 criteria for PTSD? We used qualitative content analysis with mixed deductive and inductive approaches to code 151 anonymized statements. Analyses found descriptions of PTSD symptoms aligned broadly with existing diagnostic nomenclature, but descriptions revealed specific presentations relevant to the end of life setting such as resistance to care, agitation, restlessness, and effects of delirium. In addition, some veterans expressed pride in service and openness to discussing military experiences. Further, clinicians noted that PTSD symptoms were relevant to family dynamics. Future research should further characterize these symptom differences through direct patient assessment and develop resources to improve quality of death experience for veterans with PTSD symptoms.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9047186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48627008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-03DOI: 10.1080/09699260.2021.1981566
Mu'taz Dreidi, Intima Alrimawi, Maha Atout
Background Cancer is the second most fatal disease in the world, following cardiac diseases. Throughout the cancer trajectory, patients experience symptom clusters and malnutrition. Both affect the quality of life for these patients. Limited studies had focused on these issues in Palestine. Purpose This study aims to assess and evaluate the relationships between multiple symptoms, altered nutritional status, and their effects on the quality of life of patients diagnosed with cancer in Palestine. Methods An explorative cross-sectional study was conducted to collect data from 120 patients with cancer. Results Fatigue, dry mouth, and pain were the most prevalent symptoms experienced by participants with mean scores of 5.5, 4.9, and 4.5 respectively. For the quality of life, general activity and work were the worst variables experienced by patients. More than half of the patients were malnourished (53%). Nutritional status was significantly correlated and predicted most of the symptoms and quality of life dimensions (P < 0.05). Conclusion The current study highlighted the importance of symptom clusters in cancer, quality of life, and nutritional status. It also focused on nutritional status as an essential factor and critical predictor that may affect and correlate with the worst symptom clusters and low quality of life. Implication Symptom clusters and malnutrition predict the poor quality of life among Palestinian oncology patients. Therefore, symptom clusters and nutritional status should be taken into consideration at an earlier stage in the nursing care plan, and in the oncology assessment guidelines in Palestine.
{"title":"Evaluating the relationships between multiple symptoms; altered nutritional status, and their effects on the quality of life of patients diagnosed with cancer in Palestine: an explorative study","authors":"Mu'taz Dreidi, Intima Alrimawi, Maha Atout","doi":"10.1080/09699260.2021.1981566","DOIUrl":"https://doi.org/10.1080/09699260.2021.1981566","url":null,"abstract":"Background Cancer is the second most fatal disease in the world, following cardiac diseases. Throughout the cancer trajectory, patients experience symptom clusters and malnutrition. Both affect the quality of life for these patients. Limited studies had focused on these issues in Palestine. Purpose This study aims to assess and evaluate the relationships between multiple symptoms, altered nutritional status, and their effects on the quality of life of patients diagnosed with cancer in Palestine. Methods An explorative cross-sectional study was conducted to collect data from 120 patients with cancer. Results Fatigue, dry mouth, and pain were the most prevalent symptoms experienced by participants with mean scores of 5.5, 4.9, and 4.5 respectively. For the quality of life, general activity and work were the worst variables experienced by patients. More than half of the patients were malnourished (53%). Nutritional status was significantly correlated and predicted most of the symptoms and quality of life dimensions (P < 0.05). Conclusion The current study highlighted the importance of symptom clusters in cancer, quality of life, and nutritional status. It also focused on nutritional status as an essential factor and critical predictor that may affect and correlate with the worst symptom clusters and low quality of life. Implication Symptom clusters and malnutrition predict the poor quality of life among Palestinian oncology patients. Therefore, symptom clusters and nutritional status should be taken into consideration at an earlier stage in the nursing care plan, and in the oncology assessment guidelines in Palestine.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46133953","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-24DOI: 10.1080/09699260.2021.1961985
Rana Yamout, Janane Hanna, R. El Asmar, Hanadi Beydoun, Mira Rahm, H. Osman
The preferred place of death of patients with terminal illness is a universal topic. Numerous international studies exist. The present narrative literature review aims to examine the preferred place of death for patients with terminal illness and to highlight the factors that play a role in their decision. The search for studies was conducted through PubMed, EBSCO, Ovid, and Cochrane Library databases. Results revealed the home as the preferred place of death of most patients, followed by the hospital and the hospice or nursing homes or the palliative care units. Among the factors affecting the preference for place of death were the support of the family caregiver, the feeling of being a burden to others, and the quality of the relationship with healthcare providers. Discrepancies emerged between the preferred place of death and the actual place of death. Further research is needed to explain this discrepancy.
{"title":"Preferred place of death for patients with terminal illness: A literature review","authors":"Rana Yamout, Janane Hanna, R. El Asmar, Hanadi Beydoun, Mira Rahm, H. Osman","doi":"10.1080/09699260.2021.1961985","DOIUrl":"https://doi.org/10.1080/09699260.2021.1961985","url":null,"abstract":"The preferred place of death of patients with terminal illness is a universal topic. Numerous international studies exist. The present narrative literature review aims to examine the preferred place of death for patients with terminal illness and to highlight the factors that play a role in their decision. The search for studies was conducted through PubMed, EBSCO, Ovid, and Cochrane Library databases. Results revealed the home as the preferred place of death of most patients, followed by the hospital and the hospice or nursing homes or the palliative care units. Among the factors affecting the preference for place of death were the support of the family caregiver, the feeling of being a burden to others, and the quality of the relationship with healthcare providers. Discrepancies emerged between the preferred place of death and the actual place of death. Further research is needed to explain this discrepancy.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44936966","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-19DOI: 10.1080/09699260.2021.1972722
Kate Diggory, A. Reeves
Background Informal carers of someone with a life-limiting or terminal illness often experience marked levels of depression, anxiety and stress. Carers have limited free time to devote to lengthy, well-being interventions. Carers also struggle to prioritize their self-care, a factor which may help buffer some of the negative impacts of being a carer. The aim of this study was to gain insight into carers’ views and perceptions of a brief, four session face to face self-compassion intervention for carers (iCare) which was created to improve well-being, increase self-compassion and develop self-care among carers. In so doing, this qualitative research addresses gaps in the literature relating to self-compassion interventions for carers and targeted self-care initiatives for carers. Method Semi-structured interviews with nine participants of iCare were conducted and data subjected to a reflexive thematic analysis within a critical realist framework. Findings A number of themes and sub-themes were identified. Carers discovered a kinder, less judgemental way of seeing themselves allowing themselves to recognize that they had their own individual needs. In turn this led to an intentional practise of self-care activities. Benefits from conscious self-care and self-kindness included experiencing a greater sense of calm or relaxation and the development of a more positive outlook. Conclusion The findings highlight that a brief self-compassion intervention can have a positive impact on carers reported well-being through developing a kindlier internal orientation and locating a permission to allow themselves to practise an intentional self-care.
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Pub Date : 2021-09-03DOI: 10.1080/09699260.2021.1976951
Jason Mills, Sun-Hyun Kim, H. Chan, Mu-Hsing Ho, J. Montayre, Megan F. Liu, Chia-chin Lin
While access to palliative care is recognized internationally as a human right, from a global health perspective, there are many gaps within the professional services that provide palliative care together with corresponding health inequities for people needing to access palliative care. Palliative care development, or the building and expansion of palliative care services, represents a key strategy in addressing those gaps and health inequities. The development of palliative care depends on various factors including healthcare services and their provision of clinical care, as well as education, research and ongoing professional development activities in accordance with guidelines and policies across different countries and regions. As is the case with many regions across the globe, there is a need to further develop and promote access to quality hospice and palliative care in the Asia Pacific – reaching out to work in partnership together with communities and ensuring that their needs are met in a way that is equitable. One of the key components of palliative care development is the education of healthcare professionals, policymakers, and the public. A past survey of member countries from the Asia Pacific Hospice Network found that although care services were generally well developed in Australia, New Zealand, Singapore, Malaysia, Hong Kong, Japan, South Korea, and Taiwan, there was a need to strengthen palliative care education for healthcare providers. In this context and following the publication of the second Global Atlas of Palliative Care, the University of Hong Kong together with the Health Promotion Administration, Ministry of Health and Welfare in Taiwan and Taipei Medical University, collaborated to host an online symposium with a broad focus on the Transition of Palliative Care Development in the Asia Pacific Region. In May 2021, a virtual gathering of international palliative care experts from the Asia Pacific came together via webinar to discuss, more specifically, palliative care education as an important component of palliative care development in the Asia Pacific Region. After a formal introduction from Prof. Chia-Chin Lin at the University of Hong Kong, expert contributions and interactive discussion with other participants were facilitated by Assoc. Prof. Megan F. Liu. from Taipei Medical University. Experiences of and perspectives on palliative care education were shared by contributors from Australia, Hong Kong, South Korea and Japan. In Australia, the National Palliative Care Strategy has, since its inception as a policy framework in 2000, delivered significant funding for national projects such as the Palliative Care Curriculum for Undergraduates that has provided an online palliative care education resource for multidisciplinary healthcare students and educators. However, the extent to which its palliative care content is integrated within curricula is largely unknown and likely to be inconsistent across the higher educatio
虽然获得姑息治疗在国际上被公认为一项人权，但从全球健康的角度来看，提供姑息治疗的专业服务存在许多差距，同时也存在着对需要获得姑息治疗的人的相应健康不平等。姑息治疗发展，或建立和扩大姑息治疗服务，是解决这些差距和健康不平等问题的一项关键战略。姑息治疗的发展取决于各种因素，包括医疗服务及其临床护理的提供，以及根据不同国家和地区的指导方针和政策进行的教育、研究和持续的专业发展活动。与全球许多地区的情况一样，有必要在亚太地区进一步发展和促进获得优质临终关怀和姑息治疗的机会——与社区合作，确保以公平的方式满足他们的需求。姑息治疗发展的关键组成部分之一是对医疗专业人员、政策制定者和公众的教育。亚太临终关怀网络过去对成员国进行的一项调查发现，尽管澳大利亚、新西兰、新加坡、马来西亚、香港、日本、韩国和台湾的护理服务普遍发展良好，但仍有必要加强医疗保健提供者的姑息治疗教育。在这方面，在第二本全球姑息治疗地图集出版后，香港大学与台湾卫生福利部和台北医科大学合作举办了一次网上研讨会，广泛关注亚太地区姑息治疗发展的转型。2021年5月，来自亚太地区的国际姑息治疗专家通过网络研讨会举行了一次虚拟聚会，更具体地讨论了姑息治疗教育作为亚太地区姑息治疗发展的重要组成部分。在香港大学林嘉钦教授的正式介绍下，刘副教授促成了专家的贡献和与其他参与者的互动讨论。来自台北医科大学。来自澳大利亚、香港、韩国和日本的贡献者分享了姑息治疗教育的经验和观点。在澳大利亚，国家姑息治疗战略自2000年作为一个政策框架成立以来，为国家项目提供了大量资金，如本科生姑息治疗课程，该课程为多学科医疗保健学生和教育工作者提供了在线姑息治疗教育资源。然而，它的姑息治疗内容在多大程度上被纳入课程中，这在很大程度上是未知的，而且可能在选择实施它的高等教育提供者中不一致。虽然一些大学在护理学士课程中提供姑息治疗教育作为选修科目，大多数都不提供任何离散的研究单位和专注于姑息治疗的正式评估。其他大学，如澳大利亚托伦斯大学，通过合作创新率先开发了一门为期12周的强制性姑息治疗和生命限制条件课程；阳光海岸大学（University of the Sunshine Coast）也走上了类似的道路，为护理专业的学生开设了为期8周的临终关怀必修课程。随着时间的推移，本科医学教育的姑息治疗内容不断发展和加强，澳大利亚皇家医学院澳大利亚姑息医学分会通过其姑息医学高级培训课程或姑息医学临床文凭课程提供了全面的研究生专业培训选项。姑息治疗研究生奖学金
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