Pub Date : 2022-12-30DOI: 10.1080/09699260.2022.2158287
Prarthna Jayaseelan, J. Deodhar, A. Ashok, S. Jiwnani, Jyothsna Kuriakose, Shamali Poojary
Background Palliative care plays an important role in improving symptom burden and quality of life for patients with incurable oesophageal cancers. There is a dearth of studies regarding palliative care needs in advanced oesophageal cancer patients. Aim To understand the unmet palliative care needs and the associated factors in advanced oesophageal cancer patients. Design We conducted a cross-sectional observational study. Study/Participants We recruited 50 patients in the Thoracic Oncology OPD in a tertiary cancer centre in Mumbai, India, who were newly diagnosed with locally advanced, unresectable, or metastatic Oesophageal Cancer. The recruited patients’ concerns were assessed using Needs Assessment Tool-Progressive Disease Cancer (NAT-PDC) and symptom burden was assessed using Edmonton Symptom Assessment Score (ESAS). A Chi-square test was performed for correlating different factors with some or significant concerns, considering p ≤ 0.05 as statistically significant. Results Oesophageal cancer patients had concerns in physical (94%), financial (94%), psychological (82%), sociocultural (76%), activities of daily living (70%) and spiritual (58%) domains. They had a high symptom burden, most common symptoms being dysphagia, pain and tiredness. Anxiety and depression were associated with higher psychological and spiritual concerns. Older age, female gender and low financial income were associated with higher levels of concerns. Caregivers were most concerned about their patients’ physical symptoms (94%) and financial issues (92%). Conclusion Patients with advanced oesophageal cancer have significant burden of unmet palliative care needs. This should trigger referrals to specialist palliative care for comprehensive care of patients and their caregivers.
{"title":"Palliative care needs assessment in patients with metastatic and locally advanced oesophageal cancer","authors":"Prarthna Jayaseelan, J. Deodhar, A. Ashok, S. Jiwnani, Jyothsna Kuriakose, Shamali Poojary","doi":"10.1080/09699260.2022.2158287","DOIUrl":"https://doi.org/10.1080/09699260.2022.2158287","url":null,"abstract":"Background Palliative care plays an important role in improving symptom burden and quality of life for patients with incurable oesophageal cancers. There is a dearth of studies regarding palliative care needs in advanced oesophageal cancer patients. Aim To understand the unmet palliative care needs and the associated factors in advanced oesophageal cancer patients. Design We conducted a cross-sectional observational study. Study/Participants We recruited 50 patients in the Thoracic Oncology OPD in a tertiary cancer centre in Mumbai, India, who were newly diagnosed with locally advanced, unresectable, or metastatic Oesophageal Cancer. The recruited patients’ concerns were assessed using Needs Assessment Tool-Progressive Disease Cancer (NAT-PDC) and symptom burden was assessed using Edmonton Symptom Assessment Score (ESAS). A Chi-square test was performed for correlating different factors with some or significant concerns, considering p ≤ 0.05 as statistically significant. Results Oesophageal cancer patients had concerns in physical (94%), financial (94%), psychological (82%), sociocultural (76%), activities of daily living (70%) and spiritual (58%) domains. They had a high symptom burden, most common symptoms being dysphagia, pain and tiredness. Anxiety and depression were associated with higher psychological and spiritual concerns. Older age, female gender and low financial income were associated with higher levels of concerns. Caregivers were most concerned about their patients’ physical symptoms (94%) and financial issues (92%). Conclusion Patients with advanced oesophageal cancer have significant burden of unmet palliative care needs. This should trigger referrals to specialist palliative care for comprehensive care of patients and their caregivers.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"145 - 153"},"PeriodicalIF":1.7,"publicationDate":"2022-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42117390","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 : 2022-12-30DOI: 10.1080/09699260.2022.2152987
Matthew Bzura, H. Kubba, Steve West, Lori Schramm, A. Clay, Solveig Nilson
Advance care plans (ACPs) increase patient-centered care, reduce caregiver burden and healthcare costs. However, only about 25% of Canadians over 50 years of age have completed an ACP. An anonymous, cross-sectional survey was distributed to those ≥70 years attending a primary care clinic-based COVID-19 vaccination event in Regina, SK in April 2021. The survey included questions about demographics, attitudes, engagement in ACPs according to the Stage of Change model, and patient-reported influence of COVID-19 on ACP thoughts or actions. One hundred thirty-four surveys were completed (96% response rate). Twenty-seven percent of respondents were at the precontemplation stage, 21% at contemplation stage, 16% at planning stage, 26% at action stage, and 10% at maintenance stage. Thirty-three percent of respondents had thought more about ACPs during the pandemic, but few updated or created plans. Most respondents felt comfortable talking with their physician and partners. There is a need for physicians to initiate ACP conversations with patients.
{"title":"Engagement and attitudes towards advanced care planning in primary care during COVID-19: A cross-sectional survey of older adults","authors":"Matthew Bzura, H. Kubba, Steve West, Lori Schramm, A. Clay, Solveig Nilson","doi":"10.1080/09699260.2022.2152987","DOIUrl":"https://doi.org/10.1080/09699260.2022.2152987","url":null,"abstract":"Advance care plans (ACPs) increase patient-centered care, reduce caregiver burden and healthcare costs. However, only about 25% of Canadians over 50 years of age have completed an ACP. An anonymous, cross-sectional survey was distributed to those ≥70 years attending a primary care clinic-based COVID-19 vaccination event in Regina, SK in April 2021. The survey included questions about demographics, attitudes, engagement in ACPs according to the Stage of Change model, and patient-reported influence of COVID-19 on ACP thoughts or actions. One hundred thirty-four surveys were completed (96% response rate). Twenty-seven percent of respondents were at the precontemplation stage, 21% at contemplation stage, 16% at planning stage, 26% at action stage, and 10% at maintenance stage. Thirty-three percent of respondents had thought more about ACPs during the pandemic, but few updated or created plans. Most respondents felt comfortable talking with their physician and partners. There is a need for physicians to initiate ACP conversations with patients.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"89 - 94"},"PeriodicalIF":1.7,"publicationDate":"2022-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47087279","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 : 2022-12-28DOI: 10.1080/09699260.2022.2152169
A. Ghoshal, M. Muckaden, C. Garg, J. Iyengar, K. Ganpathy, A. Damani, J. Deodhar, T. Vora, G. Chinnaswamy
Prognostic information in advanced cancers is distressing. We surveyed 30 parents of children with advanced cancer from a tertiary cancer center in India to understand parental preferences for prognostic information. We found that 17/20 (85%) parents desired as much information about prognosis as possible and wanted it expressed numerically. All parents found information about the prognosis to be upsetting but still wanted additional information about the prognosis, except, 2/20 (10%). Parents who found information ‘somewhat’ or ‘extremely’ upsetting 8/20 (40%) were no less likely to say that knowing prognosis was important, or that it helped in decision-making. Thus, although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents’ desire for such information or their sense of hope.
{"title":"Parents’ experiences with prognosis communication in advanced pediatric cancers","authors":"A. Ghoshal, M. Muckaden, C. Garg, J. Iyengar, K. Ganpathy, A. Damani, J. Deodhar, T. Vora, G. Chinnaswamy","doi":"10.1080/09699260.2022.2152169","DOIUrl":"https://doi.org/10.1080/09699260.2022.2152169","url":null,"abstract":"Prognostic information in advanced cancers is distressing. We surveyed 30 parents of children with advanced cancer from a tertiary cancer center in India to understand parental preferences for prognostic information. We found that 17/20 (85%) parents desired as much information about prognosis as possible and wanted it expressed numerically. All parents found information about the prognosis to be upsetting but still wanted additional information about the prognosis, except, 2/20 (10%). Parents who found information ‘somewhat’ or ‘extremely’ upsetting 8/20 (40%) were no less likely to say that knowing prognosis was important, or that it helped in decision-making. Thus, although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents’ desire for such information or their sense of hope.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"154 - 160"},"PeriodicalIF":1.7,"publicationDate":"2022-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44293345","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 : 2022-12-05DOI: 10.1080/09699260.2022.2148196
C. Effendy, M. S. Kristanti
Purpose Although the concept of ‘cancer-related problems’ is complex, few studies compare nurses’ and caregivers’ perspectives on cancer-related problems, particularly in eastern cultures. The study aimed to identify the perceptions of patients and nurses concerning to what extent the problems of patients with cancer were assessed and addressed during hospitalization in Indonesia. Method A descriptive correlational study with cross-sectional comparisons was conducted in three major cities in Indonesia. With a convenience sample of 119 patients (response rate = 79.3%) with cancer and 147 nurses (response rate = 71%). The domains of validated Problems and Needs of Palliative Care – short version were used to measure the perceptions of the patients and nurses regarding the assessing and addressing of patients’ problems. Results The patients stated that their physical and psychological problems were very often assessed (>84%) and addressed (>90%). Patients who reported difficulties spontaneously had a lower prevalence of problems than patients who reported problems to a professional, except for the psychological subscale (P-value 0.05). The open assessment reported that the problems exhibited lower frequency than structure assessment, while nurses addressed all sub-scale problems (P-value < 0.005). Patients’ educational status, age, gender, and time of diagnosis had positive correlations with their perceptions of cancer-related problems, which they voluntarily stated. Conclusion These findings indicate essential similarities and incongruities between patients with cancer and nurses perceive cancer-related problems. The results highlight the complex technical directions of cancer nursing care in Indonesia.
{"title":"Open and structured assessment in addressing hospitalized cancer-related problems: The perception of patients and nurses in Indonesia","authors":"C. Effendy, M. S. Kristanti","doi":"10.1080/09699260.2022.2148196","DOIUrl":"https://doi.org/10.1080/09699260.2022.2148196","url":null,"abstract":"Purpose\u0000 Although the concept of ‘cancer-related problems’ is complex, few studies compare nurses’ and caregivers’ perspectives on cancer-related problems, particularly in eastern cultures. The study aimed to identify the perceptions of patients and nurses concerning to what extent the problems of patients with cancer were assessed and addressed during hospitalization in Indonesia. \u0000 Method\u0000 A descriptive correlational study with cross-sectional comparisons was conducted in three major cities in Indonesia. With a convenience sample of 119 patients (response rate = 79.3%) with cancer and 147 nurses (response rate = 71%). The domains of validated Problems and Needs of Palliative Care – short version were used to measure the perceptions of the patients and nurses regarding the assessing and addressing of patients’ problems. \u0000 Results\u0000 The patients stated that their physical and psychological problems were very often assessed (>84%) and addressed (>90%). Patients who reported difficulties spontaneously had a lower prevalence of problems than patients who reported problems to a professional, except for the psychological subscale (P-value 0.05). The open assessment reported that the problems exhibited lower frequency than structure assessment, while nurses addressed all sub-scale problems (P-value < 0.005). Patients’ educational status, age, gender, and time of diagnosis had positive correlations with their perceptions of cancer-related problems, which they voluntarily stated. \u0000 Conclusion\u0000 These findings indicate essential similarities and incongruities between patients with cancer and nurses perceive cancer-related problems. The results highlight the complex technical directions of cancer nursing care in Indonesia.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"161 - 168"},"PeriodicalIF":1.7,"publicationDate":"2022-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47841472","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 : 2022-10-20DOI: 10.1080/09699260.2022.2122316
Jiyoung Chun, Ye-Jean Kim, Kyung-Ah Kang
Aims and Objectives: This study aimed to validate a silencing response scale (SRS) for the initial screening of compassion fatigue in hospice palliative care teams (HPCT) members. Background: The silencing response is a defense mechanism that diverts caregivers’ attention from painful and difficult situations. This is an early stage of compassion fatigue. During the silencing response stage, the ability of HPCTs to listen to patients’ requests for assistance decreases, and their professional performance related to tasks and care provision weakens. Design: This study with psychometric evaluation was designed to validate the SRS for the initial screening of compassion fatigue among HPCTs. Methods: After translation-back translation and content validity indexing, 236 HPCT members working in hospice agencies designated by the Korean Ministry of Health and Welfare participated in this survey. The data were analyzed using SPSS and AMOS software. Results: The SRS developed in this study is a self-evaluation tool that employs a five-point Likert scale with 16 items: eight for disinterest, four for situation avoidance, and four for fear. The SRS met the criteria for construct, convergent, and criterion validity. The Cronbach's α for the full SRS was .87. Conclusions: To ensure HPCT well-being, prevention rather than burnout recovery should be prioritized. The SRS developed in this study can be used to screen for compassion fatigue at an early stage to prevent burnout and severe compassion fatigue among HPCT members.
{"title":"Initial screening of compassion fatigue in a hospice palliative care team: validation of the silencing response scale","authors":"Jiyoung Chun, Ye-Jean Kim, Kyung-Ah Kang","doi":"10.1080/09699260.2022.2122316","DOIUrl":"https://doi.org/10.1080/09699260.2022.2122316","url":null,"abstract":"Aims and Objectives: This study aimed to validate a silencing response scale (SRS) for the initial screening of compassion fatigue in hospice palliative care teams (HPCT) members. Background: The silencing response is a defense mechanism that diverts caregivers’ attention from painful and difficult situations. This is an early stage of compassion fatigue. During the silencing response stage, the ability of HPCTs to listen to patients’ requests for assistance decreases, and their professional performance related to tasks and care provision weakens. Design: This study with psychometric evaluation was designed to validate the SRS for the initial screening of compassion fatigue among HPCTs. Methods: After translation-back translation and content validity indexing, 236 HPCT members working in hospice agencies designated by the Korean Ministry of Health and Welfare participated in this survey. The data were analyzed using SPSS and AMOS software. Results: The SRS developed in this study is a self-evaluation tool that employs a five-point Likert scale with 16 items: eight for disinterest, four for situation avoidance, and four for fear. The SRS met the criteria for construct, convergent, and criterion validity. The Cronbach's α for the full SRS was .87. Conclusions: To ensure HPCT well-being, prevention rather than burnout recovery should be prioritized. The SRS developed in this study can be used to screen for compassion fatigue at an early stage to prevent burnout and severe compassion fatigue among HPCT members.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"37 - 44"},"PeriodicalIF":1.7,"publicationDate":"2022-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42322106","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 : 2022-10-04DOI: 10.1080/09699260.2022.2124144
L. Graven, L. Abbott, G. Schluck
Background A major focus of HF palliative care is to reduce symptom burden, yet managing HF symptoms is complex and requires adequate problem-solving skills. Telehealth interventions that provide support and problem-solving training may enhance symptom management and reduce symptom distress. Purpose The purpose of this study was to examine the preliminary effectiveness of the Coping in Heart Failure (COPE-HF) Partnership telehealth intervention (ClinicalTrials.gov Identifier: NCT05337293) on HF symptom frequency, severity, and symptom-related degree of interference with physical activity and enjoyment of life. Methods This was a three-group randomized controlled pilot study. The intervention group received one home visit and weekly (first month), then biweekly (months 2, 3) telephone calls. The attention group received a sham intervention on a similar schedule. The control group received usual care. The Heart Failure Symptom Survey was administered at baseline, 5, 9, and 13 weeks. Linear mixed modeling with restricted maximum likelihood estimation examined intervention effects on study outcomes. Results Of 107 enrolled participants, 66 completed the study. Participants were 61 years old; 56% non-Caucasian; and 54.2% male. Significant improvement in total HF symptoms and all sub-scales from baseline to 13 weeks were noted in the intervention group, with the largest improvement seen in HF symptom severity (md = −2.59, <0.001, 95% CI [−3.65, −1.53]). Conclusion Providing support and tailored problem-solving training as a component of palliative care may empower patients to develop strategies to manage bothersome symptoms, thereby decreasing symptom severity. However, more research is needed to examine this intervention in a larger sample. Trial registration: ClinicalTrials.gov identifier: NCT05337293.
{"title":"The coping in heart failure (COPE-HF) partnership intervention for heart failure symptoms: Implications for palliative care","authors":"L. Graven, L. Abbott, G. Schluck","doi":"10.1080/09699260.2022.2124144","DOIUrl":"https://doi.org/10.1080/09699260.2022.2124144","url":null,"abstract":"Background A major focus of HF palliative care is to reduce symptom burden, yet managing HF symptoms is complex and requires adequate problem-solving skills. Telehealth interventions that provide support and problem-solving training may enhance symptom management and reduce symptom distress. Purpose The purpose of this study was to examine the preliminary effectiveness of the Coping in Heart Failure (COPE-HF) Partnership telehealth intervention (ClinicalTrials.gov Identifier: NCT05337293) on HF symptom frequency, severity, and symptom-related degree of interference with physical activity and enjoyment of life. Methods This was a three-group randomized controlled pilot study. The intervention group received one home visit and weekly (first month), then biweekly (months 2, 3) telephone calls. The attention group received a sham intervention on a similar schedule. The control group received usual care. The Heart Failure Symptom Survey was administered at baseline, 5, 9, and 13 weeks. Linear mixed modeling with restricted maximum likelihood estimation examined intervention effects on study outcomes. Results Of 107 enrolled participants, 66 completed the study. Participants were 61 years old; 56% non-Caucasian; and 54.2% male. Significant improvement in total HF symptoms and all sub-scales from baseline to 13 weeks were noted in the intervention group, with the largest improvement seen in HF symptom severity (md = −2.59, <0.001, 95% CI [−3.65, −1.53]). Conclusion Providing support and tailored problem-solving training as a component of palliative care may empower patients to develop strategies to manage bothersome symptoms, thereby decreasing symptom severity. However, more research is needed to examine this intervention in a larger sample. Trial registration: ClinicalTrials.gov identifier: NCT05337293.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"169 - 178"},"PeriodicalIF":1.7,"publicationDate":"2022-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47554181","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 : 2022-09-19DOI: 10.1080/09699260.2022.2120725
Siu-Wai Chan, D. Wilson, A. Santos Salas
Palliative care (PC) focuses on optimizing the quality of life for people of all ages with life-limiting illnesses. To date, Nurse Practitioner (NP)-led PC services are not common in Canada and other countries. This scoping review examined published research literature to determine the potential value and roles of NPs in relation to planning and providing PC. Medline, Embase, PsychINFO, CINAHL, and SCOPUS databases were searched (all years, to an end date of January 2022) to reveal peer-reviewed, English-language research and review articles. A total of 18 published research and review articles were identified. These described the PC NP role as unique with high-level, advanced assessment and diagnostic skills, and with PC NPs having the potential to optimize PC provision in numerous settings. These articles also revealed NPs can enhance the quality of PC and improve access to PC services at a reduced cost. Moreover, NPs were more likely and able to address PC psychosocial needs and improve care coordination. The review findings indicate PC education for all NPs and education about NP roles for other health disciplines should be explored to expand PC NP positions as NP-led PC services could potentially improve access to PC services and also raise the quality of PC services.
{"title":"Examining the value and roles of palliative care nurse practitioners: A scoping review","authors":"Siu-Wai Chan, D. Wilson, A. Santos Salas","doi":"10.1080/09699260.2022.2120725","DOIUrl":"https://doi.org/10.1080/09699260.2022.2120725","url":null,"abstract":"Palliative care (PC) focuses on optimizing the quality of life for people of all ages with life-limiting illnesses. To date, Nurse Practitioner (NP)-led PC services are not common in Canada and other countries. This scoping review examined published research literature to determine the potential value and roles of NPs in relation to planning and providing PC. Medline, Embase, PsychINFO, CINAHL, and SCOPUS databases were searched (all years, to an end date of January 2022) to reveal peer-reviewed, English-language research and review articles. A total of 18 published research and review articles were identified. These described the PC NP role as unique with high-level, advanced assessment and diagnostic skills, and with PC NPs having the potential to optimize PC provision in numerous settings. These articles also revealed NPs can enhance the quality of PC and improve access to PC services at a reduced cost. Moreover, NPs were more likely and able to address PC psychosocial needs and improve care coordination. The review findings indicate PC education for all NPs and education about NP roles for other health disciplines should be explored to expand PC NP positions as NP-led PC services could potentially improve access to PC services and also raise the quality of PC services.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"211 - 218"},"PeriodicalIF":1.7,"publicationDate":"2022-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48779262","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 : 2022-09-12DOI: 10.1080/09699260.2022.2119326
Elisabeth S. Noerup, M. H. Skorstengaard, A. Jensen, Mai-Britt Guldin, M. Neergaard
Background Relatives of terminally ill patients most often experience distress. Advance Care Planning (ACP) has been developed to plan end-of-life care and support patients and relatives. ACP has been shown to have a positive impact on relatives of terminally ill patients and may affect their healthcare-seeking behaviour. The aim of the study was to investigate associations between ACP and relatives’ contacts with general practitioners (GPs) and hospital admissions. Methods Based on a prior randomized controlled trial we conducted a prospective longitudinal study. Relatives of patients formerly randomized into one ACP conversation or control group were included. Information regarding relatives’ GP and hospital contacts was achieved through healthcare registries using personal Civil Registration numbers. The content, distribution, and median number of GP and hospital contacts were analyzed in two time windows: the caregiving period (from randomization until loss) and the bereavement period (from loss until six months after). Results No significant difference in the median number of GP or hospital contacts between the two groups was found. However, in the caregiving period, we found a significant difference in the distribution of GP contacts (p = 0.022); More relatives in the control group had no contact with their GP. Conclusion The prior ACP conversation did not affect the median number of GP or hospital contacts among relatives, but statistically significantly more relatives in the ACP group had a least one GP contact in the caregiving period. The study emphasizes the importance of performing ACP trials with outcomes in relation to relatives and patients.
{"title":"Does advance care planning affect relatives’ healthcare-seeking behaviour?","authors":"Elisabeth S. Noerup, M. H. Skorstengaard, A. Jensen, Mai-Britt Guldin, M. Neergaard","doi":"10.1080/09699260.2022.2119326","DOIUrl":"https://doi.org/10.1080/09699260.2022.2119326","url":null,"abstract":"Background Relatives of terminally ill patients most often experience distress. Advance Care Planning (ACP) has been developed to plan end-of-life care and support patients and relatives. ACP has been shown to have a positive impact on relatives of terminally ill patients and may affect their healthcare-seeking behaviour. The aim of the study was to investigate associations between ACP and relatives’ contacts with general practitioners (GPs) and hospital admissions. Methods Based on a prior randomized controlled trial we conducted a prospective longitudinal study. Relatives of patients formerly randomized into one ACP conversation or control group were included. Information regarding relatives’ GP and hospital contacts was achieved through healthcare registries using personal Civil Registration numbers. The content, distribution, and median number of GP and hospital contacts were analyzed in two time windows: the caregiving period (from randomization until loss) and the bereavement period (from loss until six months after). Results No significant difference in the median number of GP or hospital contacts between the two groups was found. However, in the caregiving period, we found a significant difference in the distribution of GP contacts (p = 0.022); More relatives in the control group had no contact with their GP. Conclusion The prior ACP conversation did not affect the median number of GP or hospital contacts among relatives, but statistically significantly more relatives in the ACP group had a least one GP contact in the caregiving period. The study emphasizes the importance of performing ACP trials with outcomes in relation to relatives and patients.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"356 - 363"},"PeriodicalIF":1.7,"publicationDate":"2022-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47236783","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 : 2022-07-21DOI: 10.1080/09699260.2022.2090052
Hannah Douglass-Molloy, Mandy M. Law, B. Le, Naomi T Katz
The dialysis cohort in Australia, as in other parts of the world, is becoming increasingly elderly and frail. The incidence of dialysis withdrawal prior to death is also increasing, often driven by clinical deterioration and/or psychosocial factors. Despite expertise in the biomedical aspects of dialysis, nephrologists may feel less equipped to explore the existential and spiritual aspects influencing a patient’s decision-making. We present the case of an elderly woman for whom dialysis became increasingly challenging and burdensome as her global condition deteriorated. Despite multiple discussions being held regarding elective cessation of dialysis the treating team was unable to progress to a decision to withdraw. Shortly before her death the patient revealed, for the first time, the key influences of her religious beliefs to the community-based palliative care team. She described a strong Catholic faith and although unafraid of death itself, she was fearful that her decision to stop dialysis would be akin to suicide and therefore a mortal sin. Her condition deteriorated before these concerns could be further explored and she died in the intensive care setting with a high level of intervention. All people have a spiritual dimension that may influence their attitudes towards death and medical decision-making. If not elucidated, it can create barriers to appropriate care, as in this patient. There are many approaches to exploring these domains including validated tools to support clinicians who have not received dedicated training.
{"title":"Spiritual distress in dialysis: A case report","authors":"Hannah Douglass-Molloy, Mandy M. Law, B. Le, Naomi T Katz","doi":"10.1080/09699260.2022.2090052","DOIUrl":"https://doi.org/10.1080/09699260.2022.2090052","url":null,"abstract":"The dialysis cohort in Australia, as in other parts of the world, is becoming increasingly elderly and frail. The incidence of dialysis withdrawal prior to death is also increasing, often driven by clinical deterioration and/or psychosocial factors. Despite expertise in the biomedical aspects of dialysis, nephrologists may feel less equipped to explore the existential and spiritual aspects influencing a patient’s decision-making. We present the case of an elderly woman for whom dialysis became increasingly challenging and burdensome as her global condition deteriorated. Despite multiple discussions being held regarding elective cessation of dialysis the treating team was unable to progress to a decision to withdraw. Shortly before her death the patient revealed, for the first time, the key influences of her religious beliefs to the community-based palliative care team. She described a strong Catholic faith and although unafraid of death itself, she was fearful that her decision to stop dialysis would be akin to suicide and therefore a mortal sin. Her condition deteriorated before these concerns could be further explored and she died in the intensive care setting with a high level of intervention. All people have a spiritual dimension that may influence their attitudes towards death and medical decision-making. If not elucidated, it can create barriers to appropriate care, as in this patient. There are many approaches to exploring these domains including validated tools to support clinicians who have not received dedicated training.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"219 - 222"},"PeriodicalIF":1.7,"publicationDate":"2022-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44738294","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 : 2022-07-17DOI: 10.1080/09699260.2022.2090051
Kerrie Noonan, Bruce Rumbold, S. Aoun
Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a ‘compassionate communities’ approach that focuses on building care networks and developing community members’ capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This study describes the motivations, experiences and characteristics of volunteers participating in a program called compassionate connectors in Western Australia. Twenty volunteers with a variety of caregiving experiences participated in the pilot study through submitting an expression of interest for recruitment. Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional supports families may need for end-of-life care. They articulated some key differences with the hospice/palliative care volunteers and how they wish to engage in fresh ways with their community and move beyond traditional volunteering to exercise more autonomy in providing care. This article argues that clarifying these characteristics will benefit new compassionate community initiatives and provide important information for hospice and palliative care services that may be considering undertaking compassionate community projects. Conceptual clarity about these differing roles will be helpful for all collaborations and partnerships that involve volunteer recruitment and management.
{"title":"Compassionate community connectors: a distinct form of end-of-life volunteering","authors":"Kerrie Noonan, Bruce Rumbold, S. Aoun","doi":"10.1080/09699260.2022.2090051","DOIUrl":"https://doi.org/10.1080/09699260.2022.2090051","url":null,"abstract":"Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a ‘compassionate communities’ approach that focuses on building care networks and developing community members’ capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This study describes the motivations, experiences and characteristics of volunteers participating in a program called compassionate connectors in Western Australia. Twenty volunteers with a variety of caregiving experiences participated in the pilot study through submitting an expression of interest for recruitment. Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional supports families may need for end-of-life care. They articulated some key differences with the hospice/palliative care volunteers and how they wish to engage in fresh ways with their community and move beyond traditional volunteering to exercise more autonomy in providing care. This article argues that clarifying these characteristics will benefit new compassionate community initiatives and provide important information for hospice and palliative care services that may be considering undertaking compassionate community projects. Conceptual clarity about these differing roles will be helpful for all collaborations and partnerships that involve volunteer recruitment and management.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"1 - 10"},"PeriodicalIF":1.7,"publicationDate":"2022-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44479196","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}
京公网安备 11010802042870号
京ICP备2023020795号-1
扫码关注我们
求助内容：
应助结果提醒方式：