Pub Date : 2025-01-01Epub Date: 2024-10-16DOI: 10.1177/02692163241287650
Philip D Austin, Wei Lee, Robyn Keall, Melanie R Lovell
Background: Spiritual care is increasingly recognised as an essential component of care in palliative settings. Given this growing body of literature on spiritual interventions, there is a need to systematically evaluate and synthesis findings from previous systematic reviews.
Aim: To systematically synthesise the available evidence from systematic reviews concerning (a) the efficacy of spiritual care interventions and (b) the extent and nature of spiritual care interventions used in specialist palliative care settings.
Methods: An umbrella review of systematic reviews was conducted in accordance with PROSPERO (CRD42024455147) and followed the Joanna Briggs Institute methodology for umbrella reviews.
Data sources: Electronic databases (Ovid Medline, Embase, APA PsycINFO, Cochrane Database of Systematic Reviews, CINAHL and Web of Science) and references of accepted systematic reviews were searched for systematic reviews from inception to 2024. The AMSTAR-2 criteria was used to assess risk of bias within systematic reviews.
Results: A toal of 27 reviews met the eligibility criteria and reported the effects of 14 different spiritual care interventions across 431 studies including 55,759 participants. Findings show that spiritual care interventions especially dignity therapy and life-review may be effective for improving outcomes including spiritual wellbeing, emotional symptoms, quality-of-life and physical symptoms in people receiving specialist palliative care. Under half of included reviews report follow-up data where only emotional symptoms and quality-of-life are reported at more than one time-point.
Conclusion: Overall, spiritual care interventions have positive effects on spiritual wellbeing, quality of life and mood, compared to control conditions. Increased methodological rigour is needed to capture effect and duration of effect with spiritual care interventions at different phases of palliative care.
{"title":"Efficacy of spiritual interventions in palliative care: An umbrella review of systematic reviews.","authors":"Philip D Austin, Wei Lee, Robyn Keall, Melanie R Lovell","doi":"10.1177/02692163241287650","DOIUrl":"10.1177/02692163241287650","url":null,"abstract":"<p><strong>Background: </strong>Spiritual care is increasingly recognised as an essential component of care in palliative settings. Given this growing body of literature on spiritual interventions, there is a need to systematically evaluate and synthesis findings from previous systematic reviews.</p><p><strong>Aim: </strong>To systematically synthesise the available evidence from systematic reviews concerning (a) the efficacy of spiritual care interventions and (b) the extent and nature of spiritual care interventions used in specialist palliative care settings.</p><p><strong>Methods: </strong>An umbrella review of systematic reviews was conducted in accordance with PROSPERO (CRD42024455147) and followed the Joanna Briggs Institute methodology for umbrella reviews.</p><p><strong>Data sources: </strong>Electronic databases (Ovid Medline, Embase, APA PsycINFO, Cochrane Database of Systematic Reviews, CINAHL and Web of Science) and references of accepted systematic reviews were searched for systematic reviews from inception to 2024. The AMSTAR-2 criteria was used to assess risk of bias within systematic reviews.</p><p><strong>Results: </strong>A toal of 27 reviews met the eligibility criteria and reported the effects of 14 different spiritual care interventions across 431 studies including 55,759 participants. Findings show that spiritual care interventions especially dignity therapy and life-review may be effective for improving outcomes including spiritual wellbeing, emotional symptoms, quality-of-life and physical symptoms in people receiving specialist palliative care. Under half of included reviews report follow-up data where only emotional symptoms and quality-of-life are reported at more than one time-point.</p><p><strong>Conclusion: </strong>Overall, spiritual care interventions have positive effects on spiritual wellbeing, quality of life and mood, compared to control conditions. Increased methodological rigour is needed to capture effect and duration of effect with spiritual care interventions at different phases of palliative care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"70-85"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673315/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142472102","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01Epub Date: 2024-10-15DOI: 10.1177/02692163241286652
Joni Gilissen, Annelien Wendrich-Van Dael, Chris Gastmans, Luc Deliens, Robert Vander Stichele, Lara Pivodic, Lieve Van Den Block
Background: We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning.
Aim: To describe the level of implementation, mechanisms of impact, and contextual factors.
Design: Process evaluation embedded in a cluster randomized controlled trial in nursing homes (NCT03521206). Throughout and immediately following the 8-month ACP+ implementation, we collected weekly diaries, post-training surveys, attendance records, facility data, and conducted interviews (n = 32). We applied descriptive statistics and thematic analysis.
Setting and participants: Management, staff, and ACP+ trainers in seven intervention homes.
Results: Although most participants reported they valued ACP+, 33% of eligible staff across nursing homes attended training (range: 6%-69%) and only a few reported they felt ready to engage in actual care planning conversations. Half of all nursing homes adapted parts of the intervention (e.g., more/fewer/shortened training; assigning a coordinating role for practical management). Enough time to consolidate skills, and management support were key for staff engagement in advance care planning, and limited time and staff shortages were significant barriers. Staff reported increased awareness of the importance of advance care planning and felt there was a more systematic way of organizing advance care planning.
Conclusions: There was limited staff engagement. Management ownership, clear roles, and collaborative practices may enhance nursing home advance care planning. Accessible and ongoing training for all staff, and ample practical learning opportunities are needed.
{"title":"Mixed methods process evaluation of an advance care planning intervention among nursing home staff.","authors":"Joni Gilissen, Annelien Wendrich-Van Dael, Chris Gastmans, Luc Deliens, Robert Vander Stichele, Lara Pivodic, Lieve Van Den Block","doi":"10.1177/02692163241286652","DOIUrl":"10.1177/02692163241286652","url":null,"abstract":"<p><strong>Background: </strong>We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning.</p><p><strong>Aim: </strong>To describe the level of implementation, mechanisms of impact, and contextual factors.</p><p><strong>Design: </strong>Process evaluation embedded in a cluster randomized controlled trial in nursing homes (NCT03521206). Throughout and immediately following the 8-month ACP+ implementation, we collected weekly diaries, post-training surveys, attendance records, facility data, and conducted interviews (<i>n</i> = 32). We applied descriptive statistics and thematic analysis.</p><p><strong>Setting and participants: </strong>Management, staff, and ACP+ trainers in seven intervention homes.</p><p><strong>Results: </strong>Although most participants reported they valued ACP+, 33% of eligible staff across nursing homes attended training (range: 6%-69%) and only a few reported they felt ready to engage in actual care planning conversations. Half of all nursing homes adapted parts of the intervention (e.g., more/fewer/shortened training; assigning a coordinating role for practical management). Enough time to consolidate skills, and management support were key for staff engagement in advance care planning, and limited time and staff shortages were significant barriers. Staff reported increased awareness of the importance of advance care planning and felt there was a more systematic way of organizing advance care planning.</p><p><strong>Conclusions: </strong>There was limited staff engagement. Management ownership, clear roles, and collaborative practices may enhance nursing home advance care planning. Accessible and ongoing training for all staff, and ample practical learning opportunities are needed.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"113-125"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142472104","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01Epub Date: 2024-12-04DOI: 10.1177/02692163241300867
Sofia C Zambrano, Martina Egloff, Valentina Gonzalez-Jaramillo, Andri Christen-Cevallos Rosero, Simon Allan, Pilar Barnestein-Fonseca, John Ellershaw, Claudia Fischer, Dagny Faksvåg Haugen, Urška Lunder, Marisa Martin-Rosello, Stephen Mason, Birgit Rasmussen, Valgerdur Sigurðardóttir, Judt Simon, Vilma A Tripodoro, Agnes van der Heide, Lia van Zuylen, Raymond Voltz, Carl Johan Fürst, Paula R Williamson, Steffen Eychmüller
Background: Outcome measurement is essential to progress clinical practice and improve patient care.
Aim: To develop a Core Outcome Set for best care for the dying person.
Design: We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the "iLIVE" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.
Setting/participants: Clinicians, researchers, family members, and patient representatives from 20 countries participated in the Delphi Rounds 1 (n = 462) and 2 (n = 355). Thirty-two participants attended the consensus meeting.
Results: From the systematic review and the cohort study we identified 256 and 238 outcomes respectively, from which we extracted a 52-outcome list covering areas related to the patients' physical, psychosocial, and spiritual dimensions, family support, place of care and care delivery, relational aspects of care, and general concepts. A preliminary 13-outcome list reached consensus during the Delphi. At the consensus meeting, a 14-item Core Outcome Set was ratified by the participants.
Conclusions: This study involved a large and diverse sample of key stakeholders in defining the core outcome set for best care for the dying person, focusing on the last days of life. By actively integrating the perspectives of family carers and patient representatives from various cultural backgrounds this Core Outcome Set enriches our understanding of essential elements of care for the dying and provides a solid foundation for advancing quality of end-of-life care.
{"title":"A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting.","authors":"Sofia C Zambrano, Martina Egloff, Valentina Gonzalez-Jaramillo, Andri Christen-Cevallos Rosero, Simon Allan, Pilar Barnestein-Fonseca, John Ellershaw, Claudia Fischer, Dagny Faksvåg Haugen, Urška Lunder, Marisa Martin-Rosello, Stephen Mason, Birgit Rasmussen, Valgerdur Sigurðardóttir, Judt Simon, Vilma A Tripodoro, Agnes van der Heide, Lia van Zuylen, Raymond Voltz, Carl Johan Fürst, Paula R Williamson, Steffen Eychmüller","doi":"10.1177/02692163241300867","DOIUrl":"10.1177/02692163241300867","url":null,"abstract":"<p><strong>Background: </strong>Outcome measurement is essential to progress clinical practice and improve patient care.</p><p><strong>Aim: </strong>To develop a Core Outcome Set for best care for the dying person.</p><p><strong>Design: </strong>We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the \"iLIVE\" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.</p><p><strong>Setting/participants: </strong>Clinicians, researchers, family members, and patient representatives from 20 countries participated in the Delphi Rounds 1 (n = 462) and 2 (n = 355). Thirty-two participants attended the consensus meeting.</p><p><strong>Results: </strong>From the systematic review and the cohort study we identified 256 and 238 outcomes respectively, from which we extracted a 52-outcome list covering areas related to the patients' physical, psychosocial, and spiritual dimensions, family support, place of care and care delivery, relational aspects of care, and general concepts. A preliminary 13-outcome list reached consensus during the Delphi. At the consensus meeting, a 14-item Core Outcome Set was ratified by the participants.</p><p><strong>Conclusions: </strong>This study involved a large and diverse sample of key stakeholders in defining the core outcome set for best care for the dying person, focusing on the last days of life. By actively integrating the perspectives of family carers and patient representatives from various cultural backgrounds this Core Outcome Set enriches our understanding of essential elements of care for the dying and provides a solid foundation for advancing quality of end-of-life care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"163-175"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673312/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142771324","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01Epub Date: 2024-12-08DOI: 10.1177/02692163241306667
Aileen Collier
{"title":"What can patient safety science do for palliative care? Bridging the gap.","authors":"Aileen Collier","doi":"10.1177/02692163241306667","DOIUrl":"10.1177/02692163241306667","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"4-6"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142795011","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01Epub Date: 2024-10-23DOI: 10.1177/02692163241287639
Amy Brown, Sarah Yardley, Ben Bowers, Sally-Anne Francis, Lucy Bemand-Qureshi, Stuart Hellard, Antony Chuter, Andrew Carson-Stevens
Background: About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Detailed analysis of how this safety-critical care can be improved has not been undertaken. Understanding context, contributory factors and events leading to incidents is essential.
Aims: (1) Understand continuous subcutaneous infusion safety incidents and their impact on patients and families; (2) Identify targets for system improvements by learning from recurrent events and contributory factors.
Design: Following systematic identification and stratification by degree of harm, a mixed methods analysis of palliative medication incidents involving continuous subcutaneous infusions comprising quantitative descriptive analysis using the PatIent SAfety (PISA) classification system and qualitative narrative analysis of free-text reports.
Setting/participants: Palliative medication incidents (n = 7506) reported to the National Reporting and Learning System, England and Wales (2016-2021).
Results: About 1317/7506 incidents involved continuous subcutaneous infusions with 943 (72%) detailing harms. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%). Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified.
Conclusions: System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care. Training is needed to improve incident descriptions so these pinpoint precise targets for safer care.
{"title":"Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysis.","authors":"Amy Brown, Sarah Yardley, Ben Bowers, Sally-Anne Francis, Lucy Bemand-Qureshi, Stuart Hellard, Antony Chuter, Andrew Carson-Stevens","doi":"10.1177/02692163241287639","DOIUrl":"10.1177/02692163241287639","url":null,"abstract":"<p><strong>Background: </strong>About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Detailed analysis of how this safety-critical care can be improved has not been undertaken. Understanding context, contributory factors and events leading to incidents is essential.</p><p><strong>Aims: </strong>(1) Understand continuous subcutaneous infusion safety incidents and their impact on patients and families; (2) Identify targets for system improvements by learning from recurrent events and contributory factors.</p><p><strong>Design: </strong>Following systematic identification and stratification by degree of harm, a mixed methods analysis of palliative medication incidents involving continuous subcutaneous infusions comprising quantitative descriptive analysis using the <b>P</b>at<b>I</b>ent <b>SA</b>fety (PISA) classification system and qualitative narrative analysis of free-text reports.</p><p><strong>Setting/participants: </strong>Palliative medication incidents (<i>n</i> = 7506) reported to the National Reporting and Learning System, England and Wales (2016-2021).</p><p><strong>Results: </strong>About 1317/7506 incidents involved continuous subcutaneous infusions with 943 (72%) detailing harms. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%). Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified.</p><p><strong>Conclusions: </strong>System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care. Training is needed to improve incident descriptions so these pinpoint precise targets for safer care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"7-21"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673304/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142505532","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01Epub Date: 2024-11-08DOI: 10.1177/02692163241291343
Claudia Virdun, Elise Button, Jane L Phillips, Catherine H Saunders, Patsy Yates, Tim Luckett
Background: Supporting clinical teams to improve care for inpatients with palliative care needs and their carers is a known priority. Patient reported experience measures (PREMs) may assist in improvement work. Evidence about how to collect and feedback PREM data for this population and context is required.
Aim: To determine the feasibility of implementing a brief, validated PREM, consideRATE and appraise its acceptability as perceived by inpatients with palliative care needs, their carers and clinicians.
Design: A prospective study using: 1) PREM administration, screening log and field note completion; and; 2) a focus group with clinicians.
Setting/participants: Eligible participants recruited from three wards (cancer care and internal medicine) of an Australian tertiary metropolitan hospital. Participants included patients screened to have palliative care needs (using the SPICTTM criteria), their carers and multidisciplinary clinicians (including clinical managers).
Results: Feasibility: A 71% response rate was achieved (n = 80 from 112 eligible patients approached). Mean screening time to inform eligible patients for PREM completion was 7.5 min. More than half of eligible participants (n = 47, 59%) opted for electronic completion of consideRATE and mean completion time was 6.12 min. A third of participants required assistance for PREM completion (n = 27, 34%). Score distribution varied across response options, albeit with a positive skew towards 'very good' and 'good'. Two thirds of respondents (n = 50, 62.5%) provided ⩾1 free-text response. Acceptability: Clinicians valued consideRATE data noting feedback needed to be: accessible, supported by free-text and responsive to local contexts.
Conclusions: It is feasible to implement consideRATE for inpatients with palliative care needs. Clinicians note consideRATE data is acceptable in informing improvement foci.
{"title":"Feasibility and acceptability of the brief patient-reported experience measure consideRATE within the hospital setting for patients with palliative care needs, their families/carers and clinicians.","authors":"Claudia Virdun, Elise Button, Jane L Phillips, Catherine H Saunders, Patsy Yates, Tim Luckett","doi":"10.1177/02692163241291343","DOIUrl":"10.1177/02692163241291343","url":null,"abstract":"<p><strong>Background: </strong>Supporting clinical teams to improve care for inpatients with palliative care needs and their carers is a known priority. Patient reported experience measures (PREMs) may assist in improvement work. Evidence about how to collect and feedback PREM data for this population and context is required.</p><p><strong>Aim: </strong>To determine the feasibility of implementing a brief, validated PREM, consideRATE and appraise its acceptability as perceived by inpatients with palliative care needs, their carers and clinicians.</p><p><strong>Design: </strong>A prospective study using: 1) PREM administration, screening log and field note completion; and; 2) a focus group with clinicians.</p><p><strong>Setting/participants: </strong>Eligible participants recruited from three wards (cancer care and internal medicine) of an Australian tertiary metropolitan hospital. Participants included patients screened to have palliative care needs (using the SPICT<sup>TM</sup> criteria), their carers and multidisciplinary clinicians (including clinical managers).</p><p><strong>Results: </strong><i>Feasibility</i>: A 71% response rate was achieved (<i>n</i> = 80 from 112 eligible patients approached). Mean screening time to inform eligible patients for PREM completion was 7.5 min. More than half of eligible participants (<i>n</i> = 47, 59%) opted for electronic completion of consideRATE and mean completion time was 6.12 min. A third of participants required assistance for PREM completion (<i>n</i> = 27, 34%). Score distribution varied across response options, albeit with a positive skew towards 'very good' and 'good'. Two thirds of respondents (<i>n</i> = 50, 62.5%) provided ⩾1 free-text response. <i>Acceptability</i>: Clinicians valued consideRATE data noting feedback needed to be: accessible, supported by free-text and responsive to local contexts.</p><p><strong>Conclusions: </strong>It is feasible to implement consideRATE for inpatients with palliative care needs. Clinicians note consideRATE data is acceptable in informing improvement foci.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"151-162"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625266","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01Epub Date: 2024-12-08DOI: 10.1177/02692163241302678
Oliver Clabburn, Tracey Stone, Naheed Anwar, Taskin Saleem, Salim Khan, Verena Hewat, Usha Grieve, Lesel Dawson, Michelle Farr, Sabi Redwood, Lucy E Selman
Background: Advance care planning can improve patient and family outcomes; however, minoritised ethnic communities experience access barriers. Co-production offers a way to design culturally appropriate information and support, but evidence is needed to understand its implementation in palliative care.
Aim: To explore and describe how two charities used co-production to develop and deliver community-based advance care planning workshops for South Asian elders.
Design: Workshops were co-produced by two charities. In parallel, a multi-component qualitative study was conducted comprising workshop observations, semi-structured interviews with charity staff and focus groups with workshop participants, facilitated by community co-researchers in English, Hindi, Urdu and Punjabi. Data were analysed using thematic analysis.
Setting/participants: Four workshops were held in a London (UK) community setting (each with 5-30 participants); four interviews were conducted with charity staff members, and three focus groups with 16 workshop participants.
Results: We describe three main themes: Co-production in action: organic origins and trusted foundations; Co-production processes embedded in equal partnership; and Impact of the workshops. Fundamental to co-production processes was the community-led approach of the local charity, the trust of the local South Asian community and the relationship between the charities, including transparent communication and mutual respect. The workshops were reported to be useful and enjoyable, engendering a sense of agency and connection and helped disseminate awareness and knowledge through the community, benefitting the wider system.
Conclusions: Co-production can help widen access to advance care planning. Findings offer an in-depth example of co-production-in-action to inform intervention development and research.
{"title":"Co-production in practice: A qualitative study of the development of advance care planning workshops for South Asian elders.","authors":"Oliver Clabburn, Tracey Stone, Naheed Anwar, Taskin Saleem, Salim Khan, Verena Hewat, Usha Grieve, Lesel Dawson, Michelle Farr, Sabi Redwood, Lucy E Selman","doi":"10.1177/02692163241302678","DOIUrl":"10.1177/02692163241302678","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning can improve patient and family outcomes; however, minoritised ethnic communities experience access barriers. Co-production offers a way to design culturally appropriate information and support, but evidence is needed to understand its implementation in palliative care.</p><p><strong>Aim: </strong>To explore and describe how two charities used co-production to develop and deliver community-based advance care planning workshops for South Asian elders.</p><p><strong>Design: </strong>Workshops were co-produced by two charities. In parallel, a multi-component qualitative study was conducted comprising workshop observations, semi-structured interviews with charity staff and focus groups with workshop participants, facilitated by community co-researchers in English, Hindi, Urdu and Punjabi. Data were analysed using thematic analysis.</p><p><strong>Setting/participants: </strong>Four workshops were held in a London (UK) community setting (each with 5-30 participants); four interviews were conducted with charity staff members, and three focus groups with 16 workshop participants.</p><p><strong>Results: </strong>We describe three main themes: Co-production in action: organic origins and trusted foundations; Co-production processes embedded in equal partnership; and Impact of the workshops. Fundamental to co-production processes was the community-led approach of the local charity, the trust of the local South Asian community and the relationship between the charities, including transparent communication and mutual respect. The workshops were reported to be useful and enjoyable, engendering a sense of agency and connection and helped disseminate awareness and knowledge through the community, benefitting the wider system.</p><p><strong>Conclusions: </strong>Co-production can help widen access to advance care planning. Findings offer an in-depth example of co-production-in-action to inform intervention development and research.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"126-138"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673291/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142795010","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-24DOI: 10.1177/02692163241306242
Joran Geeraerts, Lara Pivodic, Kim de Nooijer, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block
Background: Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited.
Aims: To introduce experience sampling methods to the field of palliative care as a valuable tool for studying the everyday experiences of people with advanced illness, and to present the findings of an experience sampling methods pilot study with people with advanced breast or advanced lung cancer.
Evidence used to support the information presented: We draw on published health research using experience sampling methods. We present a newly developed experience sampling methods questionnaire (ESM-AC) and report pilot study findings on the feasibility and acceptability of experience sampling methods among people with advanced breast or lung cancer.
Key learning points: Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer.
{"title":"The potential of experience sampling methods in palliative care.","authors":"Joran Geeraerts, Lara Pivodic, Kim de Nooijer, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block","doi":"10.1177/02692163241306242","DOIUrl":"https://doi.org/10.1177/02692163241306242","url":null,"abstract":"<p><strong>Background: </strong>Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited.</p><p><strong>Aims: </strong>To introduce experience sampling methods to the field of palliative care as a valuable tool for studying the everyday experiences of people with advanced illness, and to present the findings of an experience sampling methods pilot study with people with advanced breast or advanced lung cancer.</p><p><strong>Evidence used to support the information presented: </strong>We draw on published health research using experience sampling methods. We present a newly developed experience sampling methods questionnaire (ESM-AC) and report pilot study findings on the feasibility and acceptability of experience sampling methods among people with advanced breast or lung cancer.</p><p><strong>Key learning points: </strong>Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241306242"},"PeriodicalIF":3.6,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background: Xerostomia is a common and difficult symptom experienced by patients with cancer. Pilocarpine is a cholinergic agent that stimulates salivation.
Aim: To assess the feasibility of conducting a N-of-1 trial to determine the efficacy of pilocarpine orally dissolving tablets in patients with xerostomia.
Design: Double-blind, crossover, placebo-controlled N-of-1 trials of 5 mg pilocarpine tablets vs placebo. Each trial consisted of three 6-day cycles containing pilocarpine (3 days) and placebo (3 days) in random order.
Setting/participants: Participants with advanced cancer and xerostomia (scoring >3 on an 11-point numerical rating scale) from any cause, were recruited from an inpatient and outpatient palliative care unit in Brisbane, Australia.
Results: Eighteen people were recruited in 17 months. Nine withdrew, seven before or during the first 4 days. Three withdrew due to unacceptable side effects. Two participants met the definition of response (⩾2 point reduction in mean scores active vs placebo cycles). When assessing individual cycles, 15 out of 27 cycles (56%) met the definition of response. More people reported at least one mild episode during pilocarpine than placebo of nausea (6 vs 3), vomiting (3 vs 0) and sweating (3 vs 2). About 48% of adverse event classifications were reported in placebo cycles only.
Conclusion: Recruitment to an N-of-1 trial for xerostomia is feasible but attrition was high (50%). Early dropout may have been due to the trial length, complexity, appropriateness or number of questionnaires. Adverse events were generally mild. Two of 10 participants were considered to have benefited from pilocarpine warranting ongoing treatment.
背景:口干是癌症患者常见且困难的症状。匹罗卡品是一种能刺激唾液分泌的胆碱类药物。目的:评价采用N-of-1试验确定匹罗卡品口腔溶片治疗口干症疗效的可行性。设计:5mg匹罗卡品片与安慰剂的双盲、交叉、安慰剂对照n / 1试验。每个试验包括三个6天的周期,随机顺序包括匹罗卡品(3天)和安慰剂(3天)。环境/参与者:从澳大利亚布里斯班的住院和门诊姑息治疗单位招募了来自任何原因的晚期癌症和口干症(在11分的数值评定量表中得分为bbbb3)的参与者。结果:17个月共招募18人。9人退出,7人在前4天之前或期间退出。其中三人因副作用退出。两名参与者符合反应的定义(与安慰剂周期相比,平均得分减少2分)。在评估单个周期时,27个周期中有15个(56%)符合反应定义。服用匹罗卡品期间至少有一次轻度恶心(6 vs 3)、呕吐(3 vs 0)和出汗(3 vs 2)的患者多于安慰剂组。仅在安慰剂组中报告了约48%的不良事件分类。结论:招募到N-of-1试验治疗口干是可行的,但损失率很高(50%)。早期退出可能是由于试验的长度、复杂性、适当性或问卷的数量。不良事件一般轻微。10名参与者中有2名被认为受益于匹罗卡品,需要持续治疗。
{"title":"Orally dissolving pilocarpine tablets for xerostomia in advanced cancer: A pilot N-of-1 feasibility study.","authors":"Karyn Foster, Geoff Mitchell, Evan Richard, Kathryn J Steadman, Hugh Senior, Rose Estafanos, Janet Hardy","doi":"10.1177/02692163241306269","DOIUrl":"https://doi.org/10.1177/02692163241306269","url":null,"abstract":"<p><strong>Background: </strong>Xerostomia is a common and difficult symptom experienced by patients with cancer. Pilocarpine is a cholinergic agent that stimulates salivation.</p><p><strong>Aim: </strong>To assess the feasibility of conducting a N-of-1 trial to determine the efficacy of pilocarpine orally dissolving tablets in patients with xerostomia.</p><p><strong>Design: </strong>Double-blind, crossover, placebo-controlled N-of-1 trials of 5 mg pilocarpine tablets vs placebo. Each trial consisted of three 6-day cycles containing pilocarpine (3 days) and placebo (3 days) in random order.</p><p><strong>Setting/participants: </strong>Participants with advanced cancer and xerostomia (scoring >3 on an 11-point numerical rating scale) from any cause, were recruited from an inpatient and outpatient palliative care unit in Brisbane, Australia.</p><p><strong>Results: </strong>Eighteen people were recruited in 17 months. Nine withdrew, seven before or during the first 4 days. Three withdrew due to unacceptable side effects. Two participants met the definition of response (⩾2 point reduction in mean scores active vs placebo cycles). When assessing individual cycles, 15 out of 27 cycles (56%) met the definition of response. More people reported at least one mild episode during pilocarpine than placebo of nausea (6 vs 3), vomiting (3 vs 0) and sweating (3 vs 2). About 48% of adverse event classifications were reported in placebo cycles only.</p><p><strong>Conclusion: </strong>Recruitment to an N-of-1 trial for xerostomia is feasible but attrition was high (50%). Early dropout may have been due to the trial length, complexity, appropriateness or number of questionnaires. Adverse events were generally mild. Two of 10 participants were considered to have benefited from pilocarpine warranting ongoing treatment.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241306269"},"PeriodicalIF":3.6,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882709","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-17DOI: 10.1177/02692163241302454
Donna Wakefield, Tom Ward, Hannah Edge, Catriona R Mayland, Clare Gardiner
Background: Pleural mesothelioma is a rare and incurable cancer, with complex physical and psychological symptoms. Despite recent advances in treatment, prognosis remains poor (average 8-15 months) with a lack of research on palliative and end-of-life care.
Aim: To examine markers suggestive of quality palliative and end-of-life care, including receipt of specialist palliative care, advance care planning, fewer unplanned hospital admissions at end-of-life. To compare variables with socio-economic position to identify if inequalities exist.
Design: A cohort study, retrospectively reviewing the medical notes from diagnosis to death for all patients diagnosed with pleural mesothelioma between 01/01/2016 and 31/12/2021.
Setting/participants: Over 5 years, n = 181 patients were diagnosed with pleural mesothelioma across Teesside (north-east England), n = 30 were alive at study commencement and excluded. For the 151-patient cohort, demographics were as follows: 92% male, 79% aged 70-89 years and 26% in the lowest socio-economic quintile (based on area-level deprivation).
Results: Median survival was 246 days. Within the final 90 days of life, 69% of patients had at least 1 unplanned hospital admission, with 20% having 3+ (range 0-7). Those with the highest socio-economic position had less admissions on average. Specialist palliative care was received by patients, at home 34%, in hospital 26%, in hospice 11%. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, were in the final 24 h of life for 18% of patients (median 7 days). Disease specific findings included police attendance for expected deaths and lack of signposting.
Conclusion: Patients with pleural mesothelioma have unplanned admissions to hospital towards the end of life, with possible inequalities; they receive late advance care planning and face challenges unique to their disease. It is important that patients receive high quality palliative end-of-life care through accessing specialist palliative care or have guidance/signposting to other potential sources of support.
{"title":"Palliative and end-of-life care for patients with pleural mesothelioma: A cohort study.","authors":"Donna Wakefield, Tom Ward, Hannah Edge, Catriona R Mayland, Clare Gardiner","doi":"10.1177/02692163241302454","DOIUrl":"https://doi.org/10.1177/02692163241302454","url":null,"abstract":"<p><strong>Background: </strong>Pleural mesothelioma is a rare and incurable cancer, with complex physical and psychological symptoms. Despite recent advances in treatment, prognosis remains poor (average 8-15 months) with a lack of research on palliative and end-of-life care.</p><p><strong>Aim: </strong>To examine markers suggestive of quality palliative and end-of-life care, including receipt of specialist palliative care, advance care planning, fewer unplanned hospital admissions at end-of-life. To compare variables with socio-economic position to identify if inequalities exist.</p><p><strong>Design: </strong>A cohort study, retrospectively reviewing the medical notes from diagnosis to death for all patients diagnosed with pleural mesothelioma between 01/01/2016 and 31/12/2021.</p><p><strong>Setting/participants: </strong>Over 5 years, <i>n</i> = 181 patients were diagnosed with pleural mesothelioma across Teesside (north-east England), <i>n</i> = 30 were alive at study commencement and excluded. For the 151-patient cohort, demographics were as follows: 92% male, 79% aged 70-89 years and 26% in the lowest socio-economic quintile (based on area-level deprivation).</p><p><strong>Results: </strong>Median survival was 246 days. Within the final 90 days of life, 69% of patients had at least 1 unplanned hospital admission, with 20% having 3+ (range 0-7). Those with the highest socio-economic position had less admissions on average. Specialist palliative care was received by patients, at home 34%, in hospital 26%, in hospice 11%. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, were in the final 24 h of life for 18% of patients (median 7 days). Disease specific findings included police attendance for expected deaths and lack of signposting.</p><p><strong>Conclusion: </strong>Patients with pleural mesothelioma have unplanned admissions to hospital towards the end of life, with possible inequalities; they receive late advance care planning and face challenges unique to their disease. It is important that patients receive high quality palliative end-of-life care through accessing specialist palliative care or have guidance/signposting to other potential sources of support.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241302454"},"PeriodicalIF":3.6,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142838690","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}