Pub Date : 2024-04-26eCollection Date: 2024-01-01DOI: 10.1080/09699260.2024.2339106
Hüsna Sarıca Çevik, Catharina Muente, Felix Muehlensiepen, Jacqueline Birtwistle, Alexander Pachanov, Dawid Pieper, Matthew J Allsop
Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (https://osf.io/xnrg3). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.
{"title":"Systems for electronic documentation and sharing of advance care planning preferences: a scoping review.","authors":"Hüsna Sarıca Çevik, Catharina Muente, Felix Muehlensiepen, Jacqueline Birtwistle, Alexander Pachanov, Dawid Pieper, Matthew J Allsop","doi":"10.1080/09699260.2024.2339106","DOIUrl":"10.1080/09699260.2024.2339106","url":null,"abstract":"<p><p>Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (https://osf.io/xnrg3). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (<i>n</i> = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (<i>n</i> = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"32 3","pages":"149-159"},"PeriodicalIF":0.9,"publicationDate":"2024-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11145469/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141238343","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 : 2024-01-05DOI: 10.1080/09699260.2023.2300544
Geovanna Maria Isidoro, Eliza Mara das Chagas Paiva, Fábio de Souza Terra, Ana Cláudia Mesquita Garcia
{"title":"Palliative sedation in the treatment of existential suffering in end-of-life patients: protocol for an integrative review","authors":"Geovanna Maria Isidoro, Eliza Mara das Chagas Paiva, Fábio de Souza Terra, Ana Cláudia Mesquita Garcia","doi":"10.1080/09699260.2023.2300544","DOIUrl":"https://doi.org/10.1080/09699260.2023.2300544","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"58 17","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-01-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139382000","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 : 2023-12-09DOI: 10.1080/09699260.2023.2286417
L. Cavalcante-Santos, A. M. de Oliveira, Emília Vitória da Silva, J. P. V. Rodrigues, Leonardo Régis Leira Pereira, F. Varallo
{"title":"What types of clinical interventions do pharmacists carry out in hospitals for patients receiving palliative care?","authors":"L. Cavalcante-Santos, A. M. de Oliveira, Emília Vitória da Silva, J. P. V. Rodrigues, Leonardo Régis Leira Pereira, F. Varallo","doi":"10.1080/09699260.2023.2286417","DOIUrl":"https://doi.org/10.1080/09699260.2023.2286417","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"372 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138983176","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 : 2023-11-29DOI: 10.1080/09699260.2023.2286418
Carole A. Paley, Vishal Keshwala, Michael Farfan Arango, Emily Hodgson, E. Chapman, Jaqueline Birtwistle
{"title":"Evaluating provision of psychological assessment and support in palliative care: A national survey of hospices in England","authors":"Carole A. Paley, Vishal Keshwala, Michael Farfan Arango, Emily Hodgson, E. Chapman, Jaqueline Birtwistle","doi":"10.1080/09699260.2023.2286418","DOIUrl":"https://doi.org/10.1080/09699260.2023.2286418","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"76 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139214485","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 : 2023-11-26DOI: 10.1080/09699260.2023.2281113
D. Rawlings, Jenifer Tieman, L. Miller-Lewis
{"title":"‘I’m very interested in learning more’: What health care professionals in the Dying2Learn Massive Open Online Course think of the death doula role","authors":"D. Rawlings, Jenifer Tieman, L. Miller-Lewis","doi":"10.1080/09699260.2023.2281113","DOIUrl":"https://doi.org/10.1080/09699260.2023.2281113","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"14 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139235784","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 : 2023-10-23DOI: 10.1080/09699260.2023.2256176
Manjula Patel, Gillian Lewando Hundt, Anne Slowther
This article argues that a compassionate communities approach towards the end of life is a type of therapeutic landscape with particular characteristics. The emergence of public health approaches within palliative and end-of-life care has gained momentum internationally, with the concept of compassionate communities as one of its components. This qualitative case study explored the lived experiences of compassionate communities towards the end of life from the perspective of key actors at three different research sites providing palliative care, two of which were hospice settings and one a community organisation. The data collection methods included semi-structured interviews, focus groups, and contact diaries of people living towards the end of life (primary participants), their family members, friends, as well as volunteer befrienders and health professionals. Although there were differences in the compassionate communities approach across all three sites this study identified shared characteristics. First, home as the preferred place of care with physical, social, and psychological symbolic meanings; second, formal and informal care interfacing within and across inner and outer circles of care; third, the essential role of volunteer befrienders within the inner circle of care which strengthened the interface between the formal and informal care. The relational aspect between formal and informal care was considered to be significantly important. The characteristics of compassionate communities approaches within a home-based setting, meet the criteria for a type of therapeutic landscape, a place of maintaining well-being towards the end of life.
{"title":"End-of-life care at home as a therapeutic landscape within a compassionate communities approach","authors":"Manjula Patel, Gillian Lewando Hundt, Anne Slowther","doi":"10.1080/09699260.2023.2256176","DOIUrl":"https://doi.org/10.1080/09699260.2023.2256176","url":null,"abstract":"This article argues that a compassionate communities approach towards the end of life is a type of therapeutic landscape with particular characteristics. The emergence of public health approaches within palliative and end-of-life care has gained momentum internationally, with the concept of compassionate communities as one of its components. This qualitative case study explored the lived experiences of compassionate communities towards the end of life from the perspective of key actors at three different research sites providing palliative care, two of which were hospice settings and one a community organisation. The data collection methods included semi-structured interviews, focus groups, and contact diaries of people living towards the end of life (primary participants), their family members, friends, as well as volunteer befrienders and health professionals. Although there were differences in the compassionate communities approach across all three sites this study identified shared characteristics. First, home as the preferred place of care with physical, social, and psychological symbolic meanings; second, formal and informal care interfacing within and across inner and outer circles of care; third, the essential role of volunteer befrienders within the inner circle of care which strengthened the interface between the formal and informal care. The relational aspect between formal and informal care was considered to be significantly important. The characteristics of compassionate communities approaches within a home-based setting, meet the criteria for a type of therapeutic landscape, a place of maintaining well-being towards the end of life.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"12 9","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135368634","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 : 2023-09-30DOI: 10.1080/09699260.2023.2256177
Fiona Wilson, E. Wardani, T. Ryan, C. Gardiner, A. Talpur
The aim of this study was to identify barriers and mechanisms in the development of palliative care in the province of Aceh, North West Indonesia. Several factors, including an ageing population, have increased palliative care needs in the region; however, as with many low to middle income countries (LMICs), palliative care is not well established or integrated into mainstream health care services. Consequently, many people may experience serious health-related suffering (SHRS) at the end-of-life. Qualitative semi-structured interviews and focus groups were conducted with key stakeholders in Aceh, Indonesia and a semi-structured interview guide prompted an exploration of palliative care provision, including barriers and enablers. Interviews were digitally recorded, transcribed, and analysed using the principles of thematic analysis. Eight interviews and two focus groups were conducted with medics (n = 6), nurses (n = 7), hospital management (n = 1) and religious/cultural leaders (n = 2). The findings indicate that all participants recognise a need to reduce SHRS and a growing impetus to embed a culturally salient and sustainable model of palliative care within the Aceh healthcare system. The following four themes indicate key areas for further focus: (1) Local vision and leadership, (2) Prioritisation of palliative care policy and funding, (3) Access to palliative care in community and public services, and (4) supporting palliative care in the cultural context of Sharia law, family, and faith. Future expansion requires the identification of a culturally and socioeconomically salient package of palliative care which operates across rural community and acute care settings and is informed by further evaluation and evidence.
{"title":"Barriers and mechanisms to the development of palliative care in Aceh, Indonesia","authors":"Fiona Wilson, E. Wardani, T. Ryan, C. Gardiner, A. Talpur","doi":"10.1080/09699260.2023.2256177","DOIUrl":"https://doi.org/10.1080/09699260.2023.2256177","url":null,"abstract":"The aim of this study was to identify barriers and mechanisms in the development of palliative care in the province of Aceh, North West Indonesia. Several factors, including an ageing population, have increased palliative care needs in the region; however, as with many low to middle income countries (LMICs), palliative care is not well established or integrated into mainstream health care services. Consequently, many people may experience serious health-related suffering (SHRS) at the end-of-life. Qualitative semi-structured interviews and focus groups were conducted with key stakeholders in Aceh, Indonesia and a semi-structured interview guide prompted an exploration of palliative care provision, including barriers and enablers. Interviews were digitally recorded, transcribed, and analysed using the principles of thematic analysis. Eight interviews and two focus groups were conducted with medics (n = 6), nurses (n = 7), hospital management (n = 1) and religious/cultural leaders (n = 2). The findings indicate that all participants recognise a need to reduce SHRS and a growing impetus to embed a culturally salient and sustainable model of palliative care within the Aceh healthcare system. The following four themes indicate key areas for further focus: (1) Local vision and leadership, (2) Prioritisation of palliative care policy and funding, (3) Access to palliative care in community and public services, and (4) supporting palliative care in the cultural context of Sharia law, family, and faith. Future expansion requires the identification of a culturally and socioeconomically salient package of palliative care which operates across rural community and acute care settings and is informed by further evaluation and evidence.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"24 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136342348","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 : 2023-09-12DOI: 10.1080/09699260.2023.2256175
J. Abel, A. Kellehear, M. Garrido, E. Hodges, J. Sawyer, C. Peterson
Background Most international definitions of palliative care in the worlds of policy and practice emphasize the ‘holistic’ dimensions of end-of-life experience and its care.Aim To discover whether the definitions of palliative care are reflected in the field’s research priorities.Design and Setting A content analysis of two research journals, one British and the other American, is described to provide a simple indicative answer to this question. The abstracts of 609 research papers drawn from these two journals between the years 2021–22 were examined thematically.Results The categories of physical alone, physical, and psychological, and psychological alone, when combined accounted for 69% of all research reports. The broader social aspects of care, outside of communication and advance care planning, were largely unaddressed. The social domain accounted for 29%, but 78% of this figure was about advance care planning and communication. Likewise, the role of spirituality, present in most of the definitions, was under researched and under reported. Even within this context, the results were disappointing. Spiritual care accounted for only 2% of reports.Conclusion Examination of research publications of two major palliative care research journals showed a significant overemphasis on symptom management and health service delivery assessments. This significant dearth of investigation in the major areas of social and spiritual domains is a call to action for researchers, grant making bodies, researchers, ethics committees, and journal editorial teams.
{"title":"Do palliative care research priorities match those for its care? A journals content analysis 2021–22","authors":"J. Abel, A. Kellehear, M. Garrido, E. Hodges, J. Sawyer, C. Peterson","doi":"10.1080/09699260.2023.2256175","DOIUrl":"https://doi.org/10.1080/09699260.2023.2256175","url":null,"abstract":"Background Most international definitions of palliative care in the worlds of policy and practice emphasize the ‘holistic’ dimensions of end-of-life experience and its care.Aim To discover whether the definitions of palliative care are reflected in the field’s research priorities.Design and Setting A content analysis of two research journals, one British and the other American, is described to provide a simple indicative answer to this question. The abstracts of 609 research papers drawn from these two journals between the years 2021–22 were examined thematically.Results The categories of physical alone, physical, and psychological, and psychological alone, when combined accounted for 69% of all research reports. The broader social aspects of care, outside of communication and advance care planning, were largely unaddressed. The social domain accounted for 29%, but 78% of this figure was about advance care planning and communication. Likewise, the role of spirituality, present in most of the definitions, was under researched and under reported. Even within this context, the results were disappointing. Spiritual care accounted for only 2% of reports.Conclusion Examination of research publications of two major palliative care research journals showed a significant overemphasis on symptom management and health service delivery assessments. This significant dearth of investigation in the major areas of social and spiritual domains is a call to action for researchers, grant making bodies, researchers, ethics committees, and journal editorial teams.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"150 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135824681","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 : 2023-09-06DOI: 10.1080/09699260.2023.2249667
J. Ferraz-Gonçalves, Iolanda Vieira, Lígia Santos, Camila Oliveira
Ureteric obstruction is common in cancer patients, representing an unfavorable prognostic factor in this population. Percutaneous nephrostomy (PCN) is often performed in these patients to prevent renal dysfunction and potentially increase survival. However, this procedure may negatively affect patients’ quality of life, and its survival benefit is not established. The objective is to characterize the population of cancer patients undergoing PCN, assess complications related to PCN, and identify potential prognostic factors in this population. Ninety-two patients were included; the median age was 70 years (range: 26–85), and 55 (60%) were males. Most patients had metastatic disease (n = 51; 55%). Bladder (n = 24; 26%), prostate (n = 15; 16%), and rectum (n = 10; 11%) were the most frequent primary tumor topographies. Twenty-seven patients (29%) had NPC-related complications, 16 (17%) had more than one complication, and 20 (22%) required hospitalization. The most frequent complications were infection (n = 23; 25%) and obstruction (n = 14; 15%). In the multivariate analysis, malignant obstructive uropathy was the only independent prognostic factor post-PCN. After three years of follow-up, 70 patients (76%) had died, mainly from cancer progression, and 2 (2%) due to PCN-related complications. Given the potential benefits and burdens, patients and, in some cases, family members should be involved in the decision. The problem is not the efficacy of PCN but the adequacy of the decision in the face of a limited life expectancy.
{"title":"Role of percutaneous nephrostomy in cancer patients","authors":"J. Ferraz-Gonçalves, Iolanda Vieira, Lígia Santos, Camila Oliveira","doi":"10.1080/09699260.2023.2249667","DOIUrl":"https://doi.org/10.1080/09699260.2023.2249667","url":null,"abstract":"Ureteric obstruction is common in cancer patients, representing an unfavorable prognostic factor in this population. Percutaneous nephrostomy (PCN) is often performed in these patients to prevent renal dysfunction and potentially increase survival. However, this procedure may negatively affect patients’ quality of life, and its survival benefit is not established. The objective is to characterize the population of cancer patients undergoing PCN, assess complications related to PCN, and identify potential prognostic factors in this population. Ninety-two patients were included; the median age was 70 years (range: 26–85), and 55 (60%) were males. Most patients had metastatic disease (n = 51; 55%). Bladder (n = 24; 26%), prostate (n = 15; 16%), and rectum (n = 10; 11%) were the most frequent primary tumor topographies. Twenty-seven patients (29%) had NPC-related complications, 16 (17%) had more than one complication, and 20 (22%) required hospitalization. The most frequent complications were infection (n = 23; 25%) and obstruction (n = 14; 15%). In the multivariate analysis, malignant obstructive uropathy was the only independent prognostic factor post-PCN. After three years of follow-up, 70 patients (76%) had died, mainly from cancer progression, and 2 (2%) due to PCN-related complications. Given the potential benefits and burdens, patients and, in some cases, family members should be involved in the decision. The problem is not the efficacy of PCN but the adequacy of the decision in the face of a limited life expectancy.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"1 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"59535327","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 : 2023-09-02DOI: 10.1080/09699260.2023.2241786
Matthew Cooper, Amanda Fischer, Natalie Dubrowin, Carol Kilkenny, Phillip Good
Background The palliative care sector currently faces cumulative challenges and finite resources to meet population needs. To optimise the effectiveness and efficiency of palliative care services, it is necessary to understand care needs and aspects prioritised by patients and families. Deepening our understanding of their experience and preferences will direct the sector’s limited resources toward achieving optimal care in the place of choice. Aim To assesses patient and carer satisfaction of a community palliative care service and to identify common themes that impact the experience of care, and the aspects of care that are important to them. Method A single-centre, prospective study exploring patient and carer satisfaction of two cohorts (patients receiving standard palliative care, or additional and intensive care support) via the Bupa Palliative Care Choices (BPCC) programme. A tool specifically designed to measure satisfaction with palliative care was utilised. Survey comments in the BPCC cohort were analysed thematically. Results Survey response rate was 35% and satisfaction results across all domains were high in both cohorts (very satisfied/satisfied >90%). Thematic analysis of comments identified priorities of care being emotional support for the patient and family, availability of the palliative care team, a focus on patient dignity, and provision of information relating to the patient’s condition and illness trajectory. Conclusion This study provides insights into patient and family priorities of care and identifies areas of need as emotional support, availability of and access to 24-hour care, respecting patient’s dignity, and transparent discussions regarding the patient’s condition and illness trajectory.
{"title":"Understanding priorities of care: An assessment of FAMCARE-2 satisfaction surveys and thematic analysis in community palliative care","authors":"Matthew Cooper, Amanda Fischer, Natalie Dubrowin, Carol Kilkenny, Phillip Good","doi":"10.1080/09699260.2023.2241786","DOIUrl":"https://doi.org/10.1080/09699260.2023.2241786","url":null,"abstract":"Background The palliative care sector currently faces cumulative challenges and finite resources to meet population needs. To optimise the effectiveness and efficiency of palliative care services, it is necessary to understand care needs and aspects prioritised by patients and families. Deepening our understanding of their experience and preferences will direct the sector’s limited resources toward achieving optimal care in the place of choice. Aim To assesses patient and carer satisfaction of a community palliative care service and to identify common themes that impact the experience of care, and the aspects of care that are important to them. Method A single-centre, prospective study exploring patient and carer satisfaction of two cohorts (patients receiving standard palliative care, or additional and intensive care support) via the Bupa Palliative Care Choices (BPCC) programme. A tool specifically designed to measure satisfaction with palliative care was utilised. Survey comments in the BPCC cohort were analysed thematically. Results Survey response rate was 35% and satisfaction results across all domains were high in both cohorts (very satisfied/satisfied >90%). Thematic analysis of comments identified priorities of care being emotional support for the patient and family, availability of the palliative care team, a focus on patient dignity, and provision of information relating to the patient’s condition and illness trajectory. Conclusion This study provides insights into patient and family priorities of care and identifies areas of need as emotional support, availability of and access to 24-hour care, respecting patient’s dignity, and transparent discussions regarding the patient’s condition and illness trajectory.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"269 - 281"},"PeriodicalIF":1.7,"publicationDate":"2023-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46679829","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}
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