Pub Date : 2021-05-04DOI: 10.1080/09699260.2021.1917798
Jennifer Smith
{"title":"Re-framing self-care: Deepening the quality of our own care","authors":"Jennifer Smith","doi":"10.1080/09699260.2021.1917798","DOIUrl":"https://doi.org/10.1080/09699260.2021.1917798","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1917798","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47515124","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 : 2021-05-04DOI: 10.1080/09699260.2021.1919856
D. Gundersen, Charlotta, Lindvall
The purpose of the scoping review was to synthesize peer-reviewed literature of daughters’ experiences of maternal bereavement. The search was conducted across eight databases and included peer-reviewed, qualitative research that reported on daughters’ experiences of the death of their mother. The review identified 21 studies. Experiences included recurrent grief including secondary losses, difficulties establishing and maintaining relationships, and intrapersonal and daily lifestyle changes. Implications for maternal loss during adolescence, and recommendations for those supporting women whose mothers have passed away have been provided. Further research is needed to identify the experiences of loss at different developmental stages.
{"title":"Bibliography","authors":"D. Gundersen, Charlotta, Lindvall","doi":"10.1080/09699260.2021.1919856","DOIUrl":"https://doi.org/10.1080/09699260.2021.1919856","url":null,"abstract":"The purpose of the scoping review was to synthesize peer-reviewed literature of daughters’ experiences of maternal bereavement. The search was conducted across eight databases and included peer-reviewed, qualitative research that reported on daughters’ experiences of the death of their mother. The review identified 21 studies. Experiences included recurrent grief including secondary losses, difficulties establishing and maintaining relationships, and intrapersonal and daily lifestyle changes. Implications for maternal loss during adolescence, and recommendations for those supporting women whose mothers have passed away have been provided. Further research is needed to identify the experiences of loss at different developmental stages.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1919856","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43590643","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 : 2021-05-03DOI: 10.1080/09699260.2021.1919045
Rana Yamout, M. Viallard, Samer Hoteit, H. Abou-Zeid, F. Shebbo, N. Naccache
Morphine is the first line drug for moderate to severe pain; however, due to side effects it may contribute to discomfort. Dexmedetomidine has both sedative and analgesic actions with a morphine sparing effect and can be used in metastatic cancer patients with intractable pain. This pilot project primarily aims to evaluate the effect of dexmedetomidine on pain treatment in patients with metastatic cancer. In addition, the work aims to determine its impact on anxiety and quality of communication of patients with their family members. Patients between 18 and 75 years, with metastatic cancer, who failed multiple pain treatments at home and admitted to the hospital for pain management were included. Patients were allocated randomly to Group A (who received morphine plus normal saline solution) or Group B (who received morphine plus dexmedetomidine) for pain management. The Visual Analogue Score (VAS) was used to assess pain intensity, a 5-point sedation scale was used to assess sedation level, and the Hamilton scale was used to assess anxiety. Results have shown that morphine consumption was reduced at different time points up to 48 h, p < 0.005 in both groups. There was a trend in decreasing pain scores after 36 h in both groups. All patients in Group A required rescue pain treatment; however, in Group B, this percentage was lower (67%). Communication was better in patients allocated to Group B than patients in Group A. To conclude, dexmedetomidine was safe and has exerted an opioid-sparing effect in patients with metastatic cancer with keeping their anxiety levels within an acceptable range.
{"title":"Does the addition of dexmedetomidine to morphine have any clinical benefit on the treatment of pain in patients with metastatic cancer? A pilot study","authors":"Rana Yamout, M. Viallard, Samer Hoteit, H. Abou-Zeid, F. Shebbo, N. Naccache","doi":"10.1080/09699260.2021.1919045","DOIUrl":"https://doi.org/10.1080/09699260.2021.1919045","url":null,"abstract":"Morphine is the first line drug for moderate to severe pain; however, due to side effects it may contribute to discomfort. Dexmedetomidine has both sedative and analgesic actions with a morphine sparing effect and can be used in metastatic cancer patients with intractable pain. This pilot project primarily aims to evaluate the effect of dexmedetomidine on pain treatment in patients with metastatic cancer. In addition, the work aims to determine its impact on anxiety and quality of communication of patients with their family members. Patients between 18 and 75 years, with metastatic cancer, who failed multiple pain treatments at home and admitted to the hospital for pain management were included. Patients were allocated randomly to Group A (who received morphine plus normal saline solution) or Group B (who received morphine plus dexmedetomidine) for pain management. The Visual Analogue Score (VAS) was used to assess pain intensity, a 5-point sedation scale was used to assess sedation level, and the Hamilton scale was used to assess anxiety. Results have shown that morphine consumption was reduced at different time points up to 48 h, p < 0.005 in both groups. There was a trend in decreasing pain scores after 36 h in both groups. All patients in Group A required rescue pain treatment; however, in Group B, this percentage was lower (67%). Communication was better in patients allocated to Group B than patients in Group A. To conclude, dexmedetomidine was safe and has exerted an opioid-sparing effect in patients with metastatic cancer with keeping their anxiety levels within an acceptable range.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1919045","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47228704","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 : 2021-04-29DOI: 10.1080/09699260.2021.1905146
G. Mitchell, Megdelawit Melaku, A. Moss, Glenda Chaille, Blessing Makoni, Lannette Lewis, Allyson Mutch
Residential aged care facilities (RACFs) face severe challenges in the provision of high-quality end of life care. A pilot of a nurse-led end-of-life palliative care consultative service (CiMaS) supporting RACFs was conducted in three RACFs in the West Moreton Region of Queensland, Australia, from May 2018. We conducted a mixed method evaluation comprising: a chart audit of deaths in the 12 months before and after the intervention; focus groups with RACF staff; and interviews with facility directors, primary family members and GPs. Quantitative and Qualitative data were assessed separately with statistical and thematic analyses respectively. The RACFs cared for 277 residents. There were 24 pre-intervention deaths and 44 in the intervention period (28 (64%) referred to CiMaS). There was widespread support for the service. Families felt supported and knowledgeable about what was happening. Care plans were almost always recorded in health records. Patients’ symptoms appeared to be better recognised and managed. Staff and Facility managers felt more support than previously, with more responsive and reliable out of hours support. There were significant care improvements in patients not referred to CiMaS, suggesting a learning effect. GPs observed improvements in nursing staff confidence and support to families. Transfers to hospitals fell by two-thirds for both referred and non-referred patients compared with the year before implementation. The program was both efficient and effective.
{"title":"Evaluation of a commissioned end-of-life care service in Australian aged care facilities","authors":"G. Mitchell, Megdelawit Melaku, A. Moss, Glenda Chaille, Blessing Makoni, Lannette Lewis, Allyson Mutch","doi":"10.1080/09699260.2021.1905146","DOIUrl":"https://doi.org/10.1080/09699260.2021.1905146","url":null,"abstract":"Residential aged care facilities (RACFs) face severe challenges in the provision of high-quality end of life care. A pilot of a nurse-led end-of-life palliative care consultative service (CiMaS) supporting RACFs was conducted in three RACFs in the West Moreton Region of Queensland, Australia, from May 2018. We conducted a mixed method evaluation comprising: a chart audit of deaths in the 12 months before and after the intervention; focus groups with RACF staff; and interviews with facility directors, primary family members and GPs. Quantitative and Qualitative data were assessed separately with statistical and thematic analyses respectively. The RACFs cared for 277 residents. There were 24 pre-intervention deaths and 44 in the intervention period (28 (64%) referred to CiMaS). There was widespread support for the service. Families felt supported and knowledgeable about what was happening. Care plans were almost always recorded in health records. Patients’ symptoms appeared to be better recognised and managed. Staff and Facility managers felt more support than previously, with more responsive and reliable out of hours support. There were significant care improvements in patients not referred to CiMaS, suggesting a learning effect. GPs observed improvements in nursing staff confidence and support to families. Transfers to hospitals fell by two-thirds for both referred and non-referred patients compared with the year before implementation. The program was both efficient and effective.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1905146","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48546285","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 : 2021-04-23DOI: 10.1080/09699260.2021.1912690
A. Rosa, M. Dissanayake, D. Carter, S. Sibbald
Objective This commentary describes community paramedicine (CP) and the potentiality of an expanded scope of practice to provide home-based palliative care. Background The prevalence of individuals desiring palliative care within their home is growing, requiring the provision of high-quality care. CP is a novel approach to delivering care, allowing paramedics to provide community-based, non-urgent care as well as crisis and symptom management within the home. The need for home-based palliative care at earlier stages of the disease trajectory will be essential for the growing older adult population. Community-based models of care are essential in alleviating health systems burden by reducing emergency department visits and over-reliance on primary care. Methods A rapid review was conducted to determine current scope of practice and geographical coverage of CP programming, as well as a broader literature search describing current roles. Discussion An expanded scope of CP practice that provides palliative care has immense potential in alleviating health system burden while simultaneously improving patient health outcomes. Pilot CP palliative care programs in Alberta, Nova Scotia and Prince Edward Island have demonstrated the benefits of community paramedics providing palliative care through reduced emergency department visits and improved patient satisfaction. Community paramedics are well equipped to provide high-quality palliative care earlier within the patient’s disease trajectory and support the patient and caregiver through remote patient monitoring.
{"title":"Community paramedicine to support palliative care","authors":"A. Rosa, M. Dissanayake, D. Carter, S. Sibbald","doi":"10.1080/09699260.2021.1912690","DOIUrl":"https://doi.org/10.1080/09699260.2021.1912690","url":null,"abstract":"Objective This commentary describes community paramedicine (CP) and the potentiality of an expanded scope of practice to provide home-based palliative care. Background The prevalence of individuals desiring palliative care within their home is growing, requiring the provision of high-quality care. CP is a novel approach to delivering care, allowing paramedics to provide community-based, non-urgent care as well as crisis and symptom management within the home. The need for home-based palliative care at earlier stages of the disease trajectory will be essential for the growing older adult population. Community-based models of care are essential in alleviating health systems burden by reducing emergency department visits and over-reliance on primary care. Methods A rapid review was conducted to determine current scope of practice and geographical coverage of CP programming, as well as a broader literature search describing current roles. Discussion An expanded scope of CP practice that provides palliative care has immense potential in alleviating health system burden while simultaneously improving patient health outcomes. Pilot CP palliative care programs in Alberta, Nova Scotia and Prince Edward Island have demonstrated the benefits of community paramedics providing palliative care through reduced emergency department visits and improved patient satisfaction. Community paramedics are well equipped to provide high-quality palliative care earlier within the patient’s disease trajectory and support the patient and caregiver through remote patient monitoring.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1912690","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42795275","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 : 2021-04-23DOI: 10.1080/09699260.2021.1905145
B. Gunawan, K. Foster, J. Hardy, P. Good
Background and Aims Malignant ureteric obstruction (MUO) is a life-threatening complication of advanced cancer associated with short survival. Percutaneous nephrostomy (PCN) is a commonly employed technique to decompress MUO. Prognostic models have been developed to identify patients with poor outcomes. This study aimed to validate and update the recent model by Alawneh et al. [Alawneh A, Tuqan W, Innabi A, et al. Clinical Factors Associated With a Short Survival Time After Percutaneous Nephrostomy for Ureteric Obstruction in Cancer Patients: An Updated Model. J Pain Symptom Manag 2016;51(2):255–261]. Methods A retrospective analysis was performed on patients who received PCN for MUO over a 10-year period. Clinical and demographic details were recorded. Patients were stratified into prognostic groups and survival was described using the Kaplan-Meier method. Association between prognostic group, individual variables and mortality was investigated. Results 29 patients had received PCN for MUO. When stratified by Alawneh prognostic group, survival was 0.9 months (0 risk factors), 8.4 months (1 factor), 3.4 months (2 factors) and 4.1 months (3 factors). No statistical association was identified between prognostic group and mortality risk (Hazard Ratio [HR] 0.92; p = 0.72). The only variable associated with increased mortality was pre-nephrostomy haemoglobin <100 g/L (HR 2.6; p = 0.037). Conclusion Survival with MUO remains short, despite advances in supportive care and PCN. This study was unable to either validate or update the prognostic model, due to limited numbers. Further research with prospective studies is recommended.
{"title":"Survival following palliative percutaneous nephrostomy tube insertion in patients with malignant ureteric obstruction: Validating a prognostic model","authors":"B. Gunawan, K. Foster, J. Hardy, P. Good","doi":"10.1080/09699260.2021.1905145","DOIUrl":"https://doi.org/10.1080/09699260.2021.1905145","url":null,"abstract":"Background and Aims Malignant ureteric obstruction (MUO) is a life-threatening complication of advanced cancer associated with short survival. Percutaneous nephrostomy (PCN) is a commonly employed technique to decompress MUO. Prognostic models have been developed to identify patients with poor outcomes. This study aimed to validate and update the recent model by Alawneh et al. [Alawneh A, Tuqan W, Innabi A, et al. Clinical Factors Associated With a Short Survival Time After Percutaneous Nephrostomy for Ureteric Obstruction in Cancer Patients: An Updated Model. J Pain Symptom Manag 2016;51(2):255–261]. Methods A retrospective analysis was performed on patients who received PCN for MUO over a 10-year period. Clinical and demographic details were recorded. Patients were stratified into prognostic groups and survival was described using the Kaplan-Meier method. Association between prognostic group, individual variables and mortality was investigated. Results 29 patients had received PCN for MUO. When stratified by Alawneh prognostic group, survival was 0.9 months (0 risk factors), 8.4 months (1 factor), 3.4 months (2 factors) and 4.1 months (3 factors). No statistical association was identified between prognostic group and mortality risk (Hazard Ratio [HR] 0.92; p = 0.72). The only variable associated with increased mortality was pre-nephrostomy haemoglobin <100 g/L (HR 2.6; p = 0.037). Conclusion Survival with MUO remains short, despite advances in supportive care and PCN. This study was unable to either validate or update the prognostic model, due to limited numbers. Further research with prospective studies is recommended.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1905145","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49150918","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 : 2021-03-31DOI: 10.1080/09699260.2022.2152989
Arron Veltre, A. Broadbent, J. Sanmugarajah, Amy Marshall, M. Hamiduzzaman
Objectives: In Australia participation rate in Advance Care Directives is 14%, and research is limited on Advance Care Planning (ACP) invitations and uptake among the patients with advanced cancer (PwAC). This study identifies the prevalence and types of documented ACP discussions in PwAC who died within two or four weeks of receiving chemotherapy. Design: A retrospective audit was conducted. Statistical analysis was calculated in SPSS. Difference in ACP invitation and utilization between three groups [control, <2-weeks, and –4 weeks] was measured by Kruskal–Wallis and Chi-square (or Fisher-Exact) tests. Post-hoc follow-up pair-wise comparisons were performed. Adjusted prevalence ratios were estimated using two logistic regression models. Setting: This study was conducted in XXX Coast University Hospital, Australia. Participants: The records of 339 patients were examined and 320 patients were found eligible. Results: Of the 320 PwAC [male: 55%; median age: 65 years], 227 (71%) received ACP invitation, and among the invited patients, 89% used Acute Resuscitation Plan; 54% used Enduring Power-of-Attorney; and 20% completed Advance Health Directives. From 7.5% [n = 24] of the patients who received chemotherapy in their last 2-weeks of life, 42% had not received an ACP invitation, 29% didn’t have Acute Resuscitation Plan and only 4% completed Advance Health Directives. There were significant differences among Control, <2-weeks, and 2–4 weeks groups in completing Acute Resuscitation Plan (P = 0.003) and Advance Health Directives (P = 0.045). A significant difference was also observed between control and <2-weeks groups in number of days since Acute Resuscitation Plan used. Completing an Acute Resuscitation Plan was associated with a lower risk of dying within two-weeks of chemotherapy (OR = 0.246; P = 0.008). Conclusions: Low rates of ACP invitation and use in PwAC, especially who received chemotherapy in 2-weeks of dying confirm a need for embedding and regularly revisiting ACP framework in cancer care and educating staff, patients, and their family caregivers to increase uptake.
{"title":"The prevalence and types of advance care planning use in patients with advanced cancer: A retrospective single-centre perspective, Australia","authors":"Arron Veltre, A. Broadbent, J. Sanmugarajah, Amy Marshall, M. Hamiduzzaman","doi":"10.1080/09699260.2022.2152989","DOIUrl":"https://doi.org/10.1080/09699260.2022.2152989","url":null,"abstract":"Objectives: In Australia participation rate in Advance Care Directives is 14%, and research is limited on Advance Care Planning (ACP) invitations and uptake among the patients with advanced cancer (PwAC). This study identifies the prevalence and types of documented ACP discussions in PwAC who died within two or four weeks of receiving chemotherapy. Design: A retrospective audit was conducted. Statistical analysis was calculated in SPSS. Difference in ACP invitation and utilization between three groups [control, <2-weeks, and –4 weeks] was measured by Kruskal–Wallis and Chi-square (or Fisher-Exact) tests. Post-hoc follow-up pair-wise comparisons were performed. Adjusted prevalence ratios were estimated using two logistic regression models. Setting: This study was conducted in XXX Coast University Hospital, Australia. Participants: The records of 339 patients were examined and 320 patients were found eligible. Results: Of the 320 PwAC [male: 55%; median age: 65 years], 227 (71%) received ACP invitation, and among the invited patients, 89% used Acute Resuscitation Plan; 54% used Enduring Power-of-Attorney; and 20% completed Advance Health Directives. From 7.5% [n = 24] of the patients who received chemotherapy in their last 2-weeks of life, 42% had not received an ACP invitation, 29% didn’t have Acute Resuscitation Plan and only 4% completed Advance Health Directives. There were significant differences among Control, <2-weeks, and 2–4 weeks groups in completing Acute Resuscitation Plan (P = 0.003) and Advance Health Directives (P = 0.045). A significant difference was also observed between control and <2-weeks groups in number of days since Acute Resuscitation Plan used. Completing an Acute Resuscitation Plan was associated with a lower risk of dying within two-weeks of chemotherapy (OR = 0.246; P = 0.008). Conclusions: Low rates of ACP invitation and use in PwAC, especially who received chemotherapy in 2-weeks of dying confirm a need for embedding and regularly revisiting ACP framework in cancer care and educating staff, patients, and their family caregivers to increase uptake.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42309858","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 : 2021-03-29DOI: 10.1080/09699260.2021.1890927
M. Moorhouse, M. O’Connor
The grief associated with bereavement, while a natural response to loss, is usually a traumatic life event. The bereavement experience for a primary caregiver with the experience of caring for a loved one is complex, especially if this role has required them to relinquish aspects of their own life. The healing trajectory for the bereaved carer is often more complex than for many other bereavements, given the pre-death experience of caregiving. This paper describes the development of a bereavement model which arose from significant clinical experience of working with bereaved carers in a community palliative care environment. The model assists the bereaved carer in gaining insight into their experience and a focus for their psychological and emotional expression, thereby promoting adaptation to the transition and promoting a healthier grief trajectory.
{"title":"The rollercoaster model of the bereaved caregiver","authors":"M. Moorhouse, M. O’Connor","doi":"10.1080/09699260.2021.1890927","DOIUrl":"https://doi.org/10.1080/09699260.2021.1890927","url":null,"abstract":"The grief associated with bereavement, while a natural response to loss, is usually a traumatic life event. The bereavement experience for a primary caregiver with the experience of caring for a loved one is complex, especially if this role has required them to relinquish aspects of their own life. The healing trajectory for the bereaved carer is often more complex than for many other bereavements, given the pre-death experience of caregiving. This paper describes the development of a bereavement model which arose from significant clinical experience of working with bereaved carers in a community palliative care environment. The model assists the bereaved carer in gaining insight into their experience and a focus for their psychological and emotional expression, thereby promoting adaptation to the transition and promoting a healthier grief trajectory.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1890927","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43632689","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 : 2021-03-19DOI: 10.1080/09699260.2021.1887589
J. Jerwood, G. Ward, D. Phimister, N. Holliday, J. Coad
Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved. Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken. Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back. Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations.
{"title":"Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care","authors":"J. Jerwood, G. Ward, D. Phimister, N. Holliday, J. Coad","doi":"10.1080/09699260.2021.1887589","DOIUrl":"https://doi.org/10.1080/09699260.2021.1887589","url":null,"abstract":"Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved. Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken. Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back. Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1887589","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45593522","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 : 2021-03-04DOI: 10.1080/09699260.2020.1852657
H. S. James, A. Smith, E. Thomas, C. Snoswell, L. Caffery, H. Haydon
A large proportion of expected deaths do not occur at home, despite often being the dying person’s preference. Paramedics play an integral role in hospital admissions when someone is close to death. As illness worsens, paramedics are often called and ascertain whether hospitalisation is appropriate. In a 12-month period, Ambulance Victoria (Australia) recorded 4348 palliative related callouts, 70% resulting in hospitalisation. Paramedics throughout the world recognise the need for extra palliative care training or support. One solution is a specialist palliative care support telehealth service from palliative specialists (usually in tertiary hospitals) to paramedics on call-outs to people with life-limiting illnesses. However, to maximise uptake and sustainability, it is prudent to examine factors that influence acceptance of such a service. In the current study, 112 paramedics employed by the Queensland Ambulance Service completed an online survey examining their Intention to Use the Specialist Palliative Care telehealth service as a function of the Technology Acceptance Model constructs (Perceived Usefulness, Perceived Ease of Use and Attitudes toward technology) and Palliative Care Self-Efficacy. After controlling for age, a hierarchical multiple regression analysis demonstrated the predictive utility of Perceived Usefulness and Attitudes. Palliative Care Self-efficacy did not add any significant variance to the model. This research highlights the importance of addressing paramedics’ perceptions regarding the telehealth service and its usefulness when implementing a similar service model.
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