Background: Clinical hypnosis appears to hold some promising effects for patients at end-of-life. Patients and health care professionals (HPs) are inclined to adopt the practice. Yet, the experience of hypnosis in this context remains under-researched. Objectives: To understand the process of integrating hypnosis into conventional care and the needs of palliative care patients and their relatives. Design: A qualitative study based on semi-structured interviews conducted between February 2022 and January 2023 in Switzerland. Interviews were transcribed verbatim and analyzed using thematic analysis. Setting/Subjects: The total sample was composed of 44 participants, including 30 service users who received hypnosis (20 palliative care patients and 10 relatives) and 14 palliative care HPs, among whom 5 were hypnosis practitioners. Results: Based on the feedback of HPs, we mapped various practices of offering and integrating hypnosis in palliative care. Then, we identified five sub-themes relating to the participants' experience of hypnosis and self-hypnosis: (1) factors influencing the choice to engage in hypnosis; (2) reasons for not recommending hypnosis; (3) effects and meaning of hypnosis; (4) difficulties and drawbacks; and (5) the perception of the practice of self-hypnosis. Conclusions: The practice of hypnosis is very diverse and constrained by resources and limitations in institutional support. Patients and relatives identified that hypnosis had a positive impact to enable them to recognize and mobilize their personal resources toward greater self-empowerment. Our findings suggest that hypnosis might hold a real potential for patients and their relatives, thus warranting further study of its effects in palliative care.
{"title":"A Thematic Analysis of Perceptions and Experiences Regarding Clinical Hypnosis from Palliative Care Health Professionals, Patients, and Their Relatives.","authors":"Anca-Cristina Sterie, Philip Larkin, Corine Guyaz, Chantal Berna, Fabienne Teike Lüthi","doi":"10.1089/jpm.2024.0085","DOIUrl":"10.1089/jpm.2024.0085","url":null,"abstract":"<p><p><b><i>Background:</i></b> Clinical hypnosis appears to hold some promising effects for patients at end-of-life. Patients and health care professionals (HPs) are inclined to adopt the practice. Yet, the experience of hypnosis in this context remains under-researched. <b><i>Objectives:</i></b> To understand the process of integrating hypnosis into conventional care and the needs of palliative care patients and their relatives. <b><i>Design:</i></b> A qualitative study based on semi-structured interviews conducted between February 2022 and January 2023 in Switzerland. Interviews were transcribed verbatim and analyzed using thematic analysis. <b><i>Setting/Subjects:</i></b> The total sample was composed of 44 participants, including 30 service users who received hypnosis (20 palliative care patients and 10 relatives) and 14 palliative care HPs, among whom 5 were hypnosis practitioners. <b><i>Results:</i></b> Based on the feedback of HPs, we mapped various practices of offering and integrating hypnosis in palliative care. Then, we identified five sub-themes relating to the participants' experience of hypnosis and self-hypnosis: (1) factors influencing the choice to engage in hypnosis; (2) reasons for not recommending hypnosis; (3) effects and meaning of hypnosis; (4) difficulties and drawbacks; and (5) the perception of the practice of self-hypnosis. <b><i>Conclusions:</i></b> The practice of hypnosis is very diverse and constrained by resources and limitations in institutional support. Patients and relatives identified that hypnosis had a positive impact to enable them to recognize and mobilize their personal resources toward greater self-empowerment. Our findings suggest that hypnosis might hold a real potential for patients and their relatives, thus warranting further study of its effects in palliative care.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1497-1511"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142133028","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-11-01Epub Date: 2024-07-24DOI: 10.1089/jpm.2024.0220
Ryan Joseph, Sheri M Kittelson, Raed Al Yacoub, Margaret C Lo
{"title":"One Institution's Response to Milestone Change in Palliative Education.","authors":"Ryan Joseph, Sheri M Kittelson, Raed Al Yacoub, Margaret C Lo","doi":"10.1089/jpm.2024.0220","DOIUrl":"10.1089/jpm.2024.0220","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1435-1436"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141751945","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background: Malignant ascites (MA) represents 10% of all causes of ascites and is associated with a poor prognosis. The PleurX tunneled peritoneal catheter is a device that allows the management of MA at home in a palliative care context (renamed AscitX catheter for this work). The objective of this study was to analyze real-world data of AscitX use for cancer patients with MA, to describe complications associated with the insertion of this device, and to identify factors influencing patient outcomes. Methods: Fifty-six patients with AscitX catheter insertion between October 2018 and October 2022 in our comprehensive cancer center were retrospectively analyzed. Computed tomography (CT) scans were reviewed by two radiologists to determine the presence of liver and peritoneal metastases and to identify portal hypertension. Results: The majority of patients were followed for pancreatic cancer (39%), followed by ovarian cancer (18%). We identified four cases of severe infections post-insertion and two moderate infections. The median survival time after AscitX insertion was 18 days. A Kaplan-Meier analysis did not identify differences in survival time between patients with peritoneal metastases and those with liver metastases. In contrast, CT-diagnosed portal hypertension and the absence of diuretic treatment were independently associated with a better prognosis. Regarding post-catheter end-of-life management, 41% of the patients died at home. Conclusions: AscitX catheter safety appears to be acceptable and most of the palliative care patients included in our study died at home. We identified CT-diagnosed portal hypertension as associated with better prognosis, as well as the absence of diuretic treatment.
{"title":"Safety and Prognostic Factor for Survival in Patients with PleurX Drain for Malignant Ascites: AscitX Study.","authors":"Aurélien Proux, Yanis Dahel, Alexandre de Nonneville, Géraldine Capodano, Nathalie Ramirez, Anne-Deborah Bouhnik, Vanessa Collin, Michaël Dassa, Nassima Daidj","doi":"10.1089/jpm.2024.0217","DOIUrl":"https://doi.org/10.1089/jpm.2024.0217","url":null,"abstract":"<p><p><b><i>Background:</i></b> Malignant ascites (MA) represents 10% of all causes of ascites and is associated with a poor prognosis. The PleurX tunneled peritoneal catheter is a device that allows the management of MA at home in a palliative care context (renamed AscitX catheter for this work). The objective of this study was to analyze real-world data of AscitX use for cancer patients with MA, to describe complications associated with the insertion of this device, and to identify factors influencing patient outcomes. <b><i>Methods:</i></b> Fifty-six patients with AscitX catheter insertion between October 2018 and October 2022 in our comprehensive cancer center were retrospectively analyzed. Computed tomography (CT) scans were reviewed by two radiologists to determine the presence of liver and peritoneal metastases and to identify portal hypertension. <b><i>Results:</i></b> The majority of patients were followed for pancreatic cancer (39%), followed by ovarian cancer (18%). We identified four cases of severe infections post-insertion and two moderate infections. The median survival time after AscitX insertion was 18 days. A Kaplan-Meier analysis did not identify differences in survival time between patients with peritoneal metastases and those with liver metastases. In contrast, CT-diagnosed portal hypertension and the absence of diuretic treatment were independently associated with a better prognosis. Regarding post-catheter end-of-life management, 41% of the patients died at home. <b><i>Conclusions:</i></b> AscitX catheter safety appears to be acceptable and most of the palliative care patients included in our study died at home. We identified CT-diagnosed portal hypertension as associated with better prognosis, as well as the absence of diuretic treatment.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142522189","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Leara Glinzak, Melissa Palmer, Jeniffer Dickman Portz, Ashley Dixon-Anderson, Darcy Campbell, Jean Youngwerth, Ian Kwok
This case discussion describes the use of an expanded interdisciplinary palliative care team structure that integrated art therapy and narrative therapy to meet the needs of a woman with a history of chronic pain and Burkitt lymphoma, who had received quadruple amputation due to complications of treatment. The concurrent interventions of art therapy, narrative therapy, and traditional palliative care consultation services resulted in high-quality, trauma-informed care, contributing to effective psychosocial coping and enhanced total pain management. The addition of expressive therapeutic modalities to inpatient palliative care consultation requires close collaboration and may be particularly valuable when addressing complex needs in the setting of prolonged hospitalizations.
{"title":"Art Therapy and Narrative Therapy Interventions for Pain Management: A Case Study with a Post-Quadruple Amputation Oncology Patient.","authors":"Leara Glinzak, Melissa Palmer, Jeniffer Dickman Portz, Ashley Dixon-Anderson, Darcy Campbell, Jean Youngwerth, Ian Kwok","doi":"10.1089/jpm.2024.0280","DOIUrl":"https://doi.org/10.1089/jpm.2024.0280","url":null,"abstract":"<p><p>This case discussion describes the use of an expanded interdisciplinary palliative care team structure that integrated art therapy and narrative therapy to meet the needs of a woman with a history of chronic pain and Burkitt lymphoma, who had received quadruple amputation due to complications of treatment. The concurrent interventions of art therapy, narrative therapy, and traditional palliative care consultation services resulted in high-quality, trauma-informed care, contributing to effective psychosocial coping and enhanced total pain management. The addition of expressive therapeutic modalities to inpatient palliative care consultation requires close collaboration and may be particularly valuable when addressing complex needs in the setting of prolonged hospitalizations.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142522188","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The CMO Curtain.","authors":"Jennifer A Carolan","doi":"10.1089/jpm.2024.0438","DOIUrl":"https://doi.org/10.1089/jpm.2024.0438","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sandy Christiansen, Marissa Mayeda, Jacob Mazzola, Shauna Rakshe
Objectives: While epidural anesthesia is an established technique for labor and perioperative pain, its use in the hospice setting remains limited, resulting in a reliance on oral opioids. We describe patients with intractable pain who pursued hospice enrollment with tunneled epidural analgesia for pain management. Methods: All patients who received a tunneled epidural prior to hospice enrollment between January 1, 2017, and September 20, 2023, were included. The medication infused, adverse effects, as well as changes in oral morphine equivalents (OME), pain scores, blood pressure, and heart rate were extracted from the medical record. Results: Seven patients underwent tunneled epidural placement for pain management. The average change in OME was -122.73 mg. Conclusions: Overall, tunneled epidural analgesia may be an underutilized method of pain management for patients at end-of-life with intractable pain. Further high-quality research on the subject is necessary to establish effectiveness, safety, and barriers to implementation.
{"title":"Epidural Analgesia for End-of-Life Pain.","authors":"Sandy Christiansen, Marissa Mayeda, Jacob Mazzola, Shauna Rakshe","doi":"10.1089/jpm.2024.0211","DOIUrl":"https://doi.org/10.1089/jpm.2024.0211","url":null,"abstract":"<p><p><b><i>Objectives:</i></b> While epidural anesthesia is an established technique for labor and perioperative pain, its use in the hospice setting remains limited, resulting in a reliance on oral opioids. We describe patients with intractable pain who pursued hospice enrollment with tunneled epidural analgesia for pain management. <b><i>Methods:</i></b> All patients who received a tunneled epidural prior to hospice enrollment between January 1, 2017, and September 20, 2023, were included. The medication infused, adverse effects, as well as changes in oral morphine equivalents (OME), pain scores, blood pressure, and heart rate were extracted from the medical record. <b><i>Results:</i></b> Seven patients underwent tunneled epidural placement for pain management. The average change in OME was -122.73 mg. <b><i>Conclusions:</i></b> Overall, tunneled epidural analgesia may be an underutilized method of pain management for patients at end-of-life with intractable pain. Further high-quality research on the subject is necessary to establish effectiveness, safety, and barriers to implementation.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502396","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Daniel David, Laura T Moreines, Jonelle Boafo, Patricia Kim, Emily Franzosa, Dena Schulman-Green, Abraham A Brody, Melissa D Aldridge
Context: Social determinants of health (SDOH) impacted the quality of home hospice care provided during the COVID-19 pandemic. Perspectives from professionals who provided care identify challenges and lessons learned from their experience. Objective: To examine hospice professionals' perspectives of how SDOH affected the delivery of high-quality home hospice care in New York City (NYC) during the COVID-19 pandemic. Methods: We conducted semistructured interviews with 30 hospice professionals who delivered care to home hospice patients during the COVID-19 pandemic in NYC using a qualitative descriptive design. Purposive sampling was used to recruit professionals from a range of disciplines including physicians, advanced practice providers, nurses, social workers, chaplains, and hospice administration and management. Participants worked for one of two large NYC metro hospices and one outpatient palliative care practice serving the five boroughs of NYC and the surrounding suburbs. Rapid qualitative analysis was used to identify themes. Results: Thirty hospice professionals were interviewed, spanning a variety of clinical and administrative roles. Most (21 out of 30) reported that social determinants affected access and/or delivery of equitable hospice care. Two key themes emerged from interviews: (1) SDOH exist and affect the delivery of high-quality care and (2) disparities were exacerbated during the COVID-19 pandemic resulting in barriers to care. Subthemes outline barriers described by hospice professionals: decreased hospice enrollment, telehealth challenges, resulting in deficient patient/family education, shortages of nursing assistants in some neighborhoods, and diminished overall quality of hospice care for some patients. SDOH created barriers to hospice care through neighborhood factors, resource barriers, and system challenges. Conclusion: SDOH provide a context to understand disparity in the provision of hospice care. COVID-19 exacerbated these conditions. Addressing multidimensional barriers created by SDOH is key in creating high-quality and equitable hospice care, particularly during a crisis.
{"title":"\"Who You Are and Where You Live Matters\": Hospice Care in New York City During COVID-19 Perspectives on Hospice and Social Determinants: A Rapid Qualitative Analysis.","authors":"Daniel David, Laura T Moreines, Jonelle Boafo, Patricia Kim, Emily Franzosa, Dena Schulman-Green, Abraham A Brody, Melissa D Aldridge","doi":"10.1089/jpm.2024.0124","DOIUrl":"https://doi.org/10.1089/jpm.2024.0124","url":null,"abstract":"<p><p><b><i>Context:</i></b> Social determinants of health (SDOH) impacted the quality of home hospice care provided during the COVID-19 pandemic. Perspectives from professionals who provided care identify challenges and lessons learned from their experience. <b><i>Objective:</i></b> To examine hospice professionals' perspectives of how SDOH affected the delivery of high-quality home hospice care in New York City (NYC) during the COVID-19 pandemic. <b><i>Methods:</i></b> We conducted semistructured interviews with 30 hospice professionals who delivered care to home hospice patients during the COVID-19 pandemic in NYC using a qualitative descriptive design. Purposive sampling was used to recruit professionals from a range of disciplines including physicians, advanced practice providers, nurses, social workers, chaplains, and hospice administration and management. Participants worked for one of two large NYC metro hospices and one outpatient palliative care practice serving the five boroughs of NYC and the surrounding suburbs. Rapid qualitative analysis was used to identify themes. <b><i>Results:</i></b> Thirty hospice professionals were interviewed, spanning a variety of clinical and administrative roles. Most (21 out of 30) reported that social determinants affected access and/or delivery of equitable hospice care. Two key themes emerged from interviews: (1) SDOH exist and affect the delivery of high-quality care and (2) disparities were exacerbated during the COVID-19 pandemic resulting in barriers to care. Subthemes outline barriers described by hospice professionals: decreased hospice enrollment, telehealth challenges, resulting in deficient patient/family education, shortages of nursing assistants in some neighborhoods, and diminished overall quality of hospice care for some patients. SDOH created barriers to hospice care through neighborhood factors, resource barriers, and system challenges. <b><i>Conclusion:</i></b> SDOH provide a context to understand disparity in the provision of hospice care. COVID-19 exacerbated these conditions. Addressing multidimensional barriers created by SDOH is key in creating high-quality and equitable hospice care, particularly during a crisis.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502393","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Johan Fridegren, Linda Björkhem-Bergman, Torbjörn Schultz, Peter Strang
Background: Ascites in malignancies is usually associated with poor prognosis, but the predictive value may vary between different cancer types. Objectives: The aim was to map the frequency and temporal pattern of paracentesis in patients with malignancies in relation to time to death and to evaluate the occurrence of ascites as a predictive factor in different cancer types, with a limitation to the last year of life. Design: A retrospective study based on registry data covering all care visits in the Stockholm Region, Sweden, for seven years was performed. All deceased subjects that had at least one registered paracentesis in the last year of life were included. Results: Of 23,056 subjects dying from cancer, 1863 had undergone paracentesis in the last year of life (8.0%). Ascites requiring paracentesis was most frequently seen in appendiceal cancer (38%), ovarian cancer (35%), cholangiocarcinoma (26%), hepatocellular carcinoma (19%), and pancreatic cancer (17%). The median time for the first paracentesis in all cancer types varied between 248 and 20 days before death. For ovarian cancer, the median time for first paracentesis differed significantly compared with upper gastro-intestinal (GI) cancers, 81 days compared with 30 days (p < 0.0001). Ascites in prostate cancer was rare,1.9%, but when present, a pronounced increase in the frequency of paracentesis was observed in the last three months of life. Conclusion: The occurrence of paracentesis in patients with advanced cancer is generally a sign that death is approaching within the coming months, especially in upper GI cancer. For ovarian and appendiceal cancers, ascites is less useful as a predictive tool.
{"title":"Ascites as a Predictive Factor in Malignancies in the Last Year of Life-Comparison Between Different Cancer Types.","authors":"Johan Fridegren, Linda Björkhem-Bergman, Torbjörn Schultz, Peter Strang","doi":"10.1089/jpm.2024.0140","DOIUrl":"https://doi.org/10.1089/jpm.2024.0140","url":null,"abstract":"<p><p><b><i>Background:</i></b> Ascites in malignancies is usually associated with poor prognosis, but the predictive value may vary between different cancer types. <b><i>Objectives:</i></b> The aim was to map the frequency and temporal pattern of paracentesis in patients with malignancies in relation to time to death and to evaluate the occurrence of ascites as a predictive factor in different cancer types, with a limitation to the last year of life. <b><i>Design:</i></b> A retrospective study based on registry data covering all care visits in the Stockholm Region, Sweden, for seven years was performed. All deceased subjects that had at least one registered paracentesis in the last year of life were included. <b><i>Results:</i></b> Of 23,056 subjects dying from cancer, 1863 had undergone paracentesis in the last year of life (8.0%). Ascites requiring paracentesis was most frequently seen in appendiceal cancer (38%), ovarian cancer (35%), cholangiocarcinoma (26%), hepatocellular carcinoma (19%), and pancreatic cancer (17%). The median time for the first paracentesis in all cancer types varied between 248 and 20 days before death. For ovarian cancer, the median time for first paracentesis differed significantly compared with upper gastro-intestinal (GI) cancers, 81 days compared with 30 days (<i>p</i> < 0.0001). Ascites in prostate cancer was rare,1.9%, but when present, a pronounced increase in the frequency of paracentesis was observed in the last three months of life. <b><i>Conclusion:</i></b> The occurrence of paracentesis in patients with advanced cancer is generally a sign that death is approaching within the coming months, especially in upper GI cancer. For ovarian and appendiceal cancers, ascites is less useful as a predictive tool.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502395","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kathleen A Young, Natalie K Field, Nikhita Nanduri, Hannah C Glass, Kathryn I Pollak, Simran Bansal, Blyth Lord, Monica E Lemmon
Objective: We aimed to characterize parents' perspectives on the value of and opportunities to improve conferences between parents of critically ill infants and the health care team. Background: The parent perspective on the value of family conferences in the intensive care unit is not well characterized. Methods: In this descriptive qualitative study, parents of infants with neurological conditions in the intensive care unit at a U.S. academic medical center completed longitudinal semi-structured interviews about their experiences making decisions and communicating with clinicians. Parents were included if they had an upcoming family conference to discuss goals of care or neurological prognosis. This secondary data analysis targets interview content about family conferences. Parent responses were characterized using a conventional content analysis approach. Results: Fifty-two parents of 37 infants completed 123 interviews. Parents described valuing when clinicians (1) provided space to process emotions, (2) prioritized "big picture" discussions about serious decisions, (3) dedicated time to parent questions, and (4) responded to parent concerns and made an effort to foster consensus. Parent-identified opportunities for improvement included: (1) having the team assume responsibility for calling regular meetings, (2) prioritizing attendance of consistent and supportive team members, and (3) summarizing meeting content for parents and documenting discussions for clinicians. Conclusions: These findings demonstrate that parents of infants with neurological conditions value family conferences as an important venue for communicating with the health care team. Future studies should explore the feasibility and impact of regularly scheduled family conferences, attendees dedicated to parent support, and accessible meeting summaries on therapeutic alliance, parent well-being, and communication quality.
{"title":"A Seat at the Table: Family Conferences for Infants with Neurological Conditions.","authors":"Kathleen A Young, Natalie K Field, Nikhita Nanduri, Hannah C Glass, Kathryn I Pollak, Simran Bansal, Blyth Lord, Monica E Lemmon","doi":"10.1089/jpm.2024.0272","DOIUrl":"https://doi.org/10.1089/jpm.2024.0272","url":null,"abstract":"<p><p><b><i>Objective:</i></b> We aimed to characterize parents' perspectives on the value of and opportunities to improve conferences between parents of critically ill infants and the health care team. <b><i>Background:</i></b> The parent perspective on the value of family conferences in the intensive care unit is not well characterized. <b><i>Methods:</i></b> In this descriptive qualitative study, parents of infants with neurological conditions in the intensive care unit at a U.S. academic medical center completed longitudinal semi-structured interviews about their experiences making decisions and communicating with clinicians. Parents were included if they had an upcoming family conference to discuss goals of care or neurological prognosis. This secondary data analysis targets interview content about family conferences. Parent responses were characterized using a conventional content analysis approach. <b><i>Results:</i></b> Fifty-two parents of 37 infants completed 123 interviews. Parents described valuing when clinicians (1) provided space to process emotions, (2) prioritized \"big picture\" discussions about serious decisions, (3) dedicated time to parent questions, and (4) responded to parent concerns and made an effort to foster consensus. Parent-identified opportunities for improvement included: (1) having the team assume responsibility for calling regular meetings, (2) prioritizing attendance of consistent and supportive team members, and (3) summarizing meeting content for parents and documenting discussions for clinicians. <b><i>Conclusions:</i></b> These findings demonstrate that parents of infants with neurological conditions value family conferences as an important venue for communicating with the health care team. Future studies should explore the feasibility and impact of regularly scheduled family conferences, attendees dedicated to parent support, and accessible meeting summaries on therapeutic alliance, parent well-being, and communication quality.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502394","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}