Palliative Medicine最新文献

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Memory-making interventions for children with life-threatening or life-limiting conditions and their families: A systematic review of evidence and implications for practice. 对有生命威胁或生命限制条件的儿童及其家庭的记忆干预:对实践的证据和影响的系统回顾。
IF 3.9 2区 医学
Palliative Medicine Pub Date : 2025-09-01 Epub Date: 2025-07-25 DOI: 10.1177/02692163251353006
Razieh Safarifard, Gemma Kiernan, Yvonne Corcoran, Eileen Courtney, John Mitchell, Terrah Akard, Veronica Lambert
{"title":"Memory-making interventions for children with life-threatening or life-limiting conditions and their families: A systematic review of evidence and implications for practice.","authors":"Razieh Safarifard, Gemma Kiernan, Yvonne Corcoran, Eileen Courtney, John Mitchell, Terrah Akard, Veronica Lambert","doi":"10.1177/02692163251353006","DOIUrl":"10.1177/02692163251353006","url":null,"abstract":"<p><strong>Background: </strong>Emotional and psychosocial support is vital for children with life-limiting or life-threatening conditions and their families. Memory-making interventions, which create lasting memories, are gaining recognition, yet a comprehensive synthesis of their efficacy and scope is lacking.</p><p><strong>Aim: </strong>To systematically review and synthesize evidence on memory-making interventions for children and young people aged 0-19 years with life-threatening or life-limiting conditions and their families in paediatric palliative and bereavement contexts.</p><p><strong>Design: </strong>A systematic review conducted in accordance with Joanna Briggs Institute guidance for mixed-methods reviews and reported using PRISMA guidelines. Narrative synthesis was used to identify key themes related to the effectiveness, implementation and family experiences of these interventions.</p><p><strong>Data sources: </strong>PubMed, EMBASE, CINAHL, PsycINFO, Web of Science, Cochrane Library and Scopus.</p><p><strong>Results: </strong>Eleven articles met the inclusion criteria, identifying three categories of memory-making interventions: storytelling-based, art-based legacy and physical keepsake creations. While statistical significance was limited, studies suggested small to moderate psychosocial benefits. Narrative synthesis identified four key themes: emotional expression and comfort; family connection and communication; memory preservation and personalization; and grieving support and continued bonds. Digital storytelling was the most common intervention. Families emphasized the need for personalized and culturally sensitive approaches to improve engagement and relevance.</p><p><strong>Conclusions: </strong>Memory-making interventions provide valuable emotional and psychosocial benefits for children and young people and their families in paediatric palliative and bereavement contexts. Tailored, well-supported interventions can strengthen resilience and well-being. Addressing challenges like technological barriers and cultural sensitivities may optimize these interventions and improve care quality.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"871-883"},"PeriodicalIF":3.9,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12405643/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144708357","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}
引用次数: 0
Surveying the quality of bereavement support within a service setting: A pilot study using cognitive interviewing with bereaved people. 在服务环境中调查丧亲支持的质量:一项对丧亲者使用认知访谈的试点研究。
IF 3.9 2区 医学
Palliative Medicine Pub Date : 2025-09-01 Epub Date: 2025-07-28 DOI: 10.1177/02692163251353012
Maja Furlan de Brito, Lucy E Selman, Alexandra Coelho, Barbara Gomes
{"title":"Surveying the quality of bereavement support within a service setting: A pilot study using cognitive interviewing with bereaved people.","authors":"Maja Furlan de Brito, Lucy E Selman, Alexandra Coelho, Barbara Gomes","doi":"10.1177/02692163251353012","DOIUrl":"10.1177/02692163251353012","url":null,"abstract":"<p><strong>Background: </strong>Provision of bereavement care is not standard practice in palliative care, meaning routinely collected data to understand support quality at a service level is scarce. Survey research can fill this gap.</p><p><strong>Aim: </strong>To pilot and refine a survey and the survey method to measure the quality and variations in bereavement support at a service level.</p><p><strong>Design: </strong>Cognitive interview study. In analysis we used a combination of reparative and descriptive cognitive interview approaches to ascertain measurement errors and any participation distress.</p><p><strong>Setting/participants: </strong>People bereaved due to cancer (13-19 months post death) were consecutively recruited via a hospital-based palliative care service.</p><p><strong>Results: </strong>Twenty bereaved people participated (parental bereavement 8/20, partner 7/20, sibling 3/20, adult child 2/20); median age 59 (range 28-76), 6 men. Cancer deaths occurred 16-19 months before the interview. Identified measurement errors, mostly related to comprehension, were fixed. We refined the definition of bereavement support in the context of the survey and reordered the sections to reduce emotional burden and improve time completion. Participating in the survey was considered distressing yet personally valuable, relevant and important for improving bereavement support.</p><p><strong>Conclusions: </strong>We developed, piloted and refined a survey to assess quality and variations in bereavement support which can be used by palliative care services in clinical practice for quality improvement. Survey participation, while potentially distressing, was acceptable to and valued by bereaved people.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"884-896"},"PeriodicalIF":3.9,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12405657/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144732677","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}
引用次数: 0
Evaluating outcomes of advance care planning interventions for adults living with advanced illness and people close to them: A systematic meta-review. 评估成人晚期疾病患者及其亲近者的预先护理计划干预措施的结果:一项系统的荟萃综述。
IF 3.9 2区 医学
Palliative Medicine Pub Date : 2025-09-01 Epub Date: 2025-06-19 DOI: 10.1177/02692163251344428
Jodie Crooks, Noura Rizk, Charlotte Simpson-Greene, Gina Hopwood, Owen Smith, Kathy Seddon, Briony Hudson
{"title":"Evaluating outcomes of advance care planning interventions for adults living with advanced illness and people close to them: A systematic meta-review.","authors":"Jodie Crooks, Noura Rizk, Charlotte Simpson-Greene, Gina Hopwood, Owen Smith, Kathy Seddon, Briony Hudson","doi":"10.1177/02692163251344428","DOIUrl":"10.1177/02692163251344428","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning enables individuals to define goals and preferences for future medical care. Despite advances in research and the production of tools and methods for advance care planning, uncertainty remains regarding whether and which interventions support intended outcomes for patients. This lack of clarity is occurring despite high financial investment into advance care planning research through grant funding, relative to other palliative care areas.</p><p><strong>Aim: </strong>To utilise published reviews to explore the efficacy of current advance care planning interventions, including how they are evaluated, and whether they achieve their intended outcomes for adults living with an advanced illness.</p><p><strong>Design: </strong>Meta-review of reviews.</p><p><strong>Data sources: </strong>Five electronic databases (PubMed, CINAHL, EMBASE, Medline and PsychINFO) were searched for reviews published between 2015 and 2025. Quality of reviews was assessed by the AMSTAR-2 tool.</p><p><strong>Results: </strong>Thirty-nine reviews were included. Fifteen reviews evidenced significantly decreased hospital utilisation in line with patient's preferences following advance care planning. Fourteen reviews evidenced significant increases in patients receiving care consistent with their goals, and 12 evidenced significant increases in patients documenting their preferences. Evidence on the impact of advance care planning on decisional conflict was mixed.</p><p><strong>Conclusions: </strong>This review highlights where advance care planning interventions significantly impact outcomes defining successful advance care planning. The existence of a range of interventions can accommodate preferences of patients or families regarding how to receive and engage with their options. This heterogeneity is, however, a challenge for synthesising research data to understand the impact of interventions and inform practice.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"833-848"},"PeriodicalIF":3.9,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12405694/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144333651","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}
引用次数: 0
A qualitative study exploring the perceptions and understandings of advance care planning by people with treatable but not curable cancer. 一项质性研究,探讨可治疗但不可治愈的癌症患者对预先护理计划的看法和理解。
IF 3.9 2区 医学
Palliative Medicine Pub Date : 2025-08-31 DOI: 10.1177/02692163251363752
Ruth Board, Sean Hughes, Katherine Stewart, Tomoko Lewis, Sheila Payne
{"title":"A qualitative study exploring the perceptions and understandings of advance care planning by people with treatable but not curable cancer.","authors":"Ruth Board, Sean Hughes, Katherine Stewart, Tomoko Lewis, Sheila Payne","doi":"10.1177/02692163251363752","DOIUrl":"https://doi.org/10.1177/02692163251363752","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning for those with treatable but not curable cancer is considered good practice because innovations in treatment options make prognostication much more uncertain. Little is known about how such patients approach future planning.</p><p><strong>Aim: </strong>To elicit the perceptions and understandings of advance care planning by patients with treatable but not curable cancer.</p><p><strong>Design: </strong>Qualitative, in-depth interviews with patients were analysed using a reflexive thematic approach within a social constructivist paradigm.</p><p><strong>Setting/participants: </strong>Twenty patients with treatable but not curable cancer were recruited to the study from a cancer care centre. Nine patients choose to be accompanied by family members.</p><p><strong>Results: </strong>Four integrated themes highlighted that increasing availability of on-going and novel treatments, with survival beyond initial prognosis, impeded advance care planning and contributed to a sense of uncertainty. Participants described the existential difficulty of holding contradictory thoughts about living with cancer while simultaneously contemplating end of life preferences. Most participants did not recognise conversations with clinicians as advance care planning, including 'do not resuscitate' decisions. Most participants preferred to discuss future care, social and funeral arrangements with family. A few, with caring responsibilities, proactively undertook advance care planning.</p><p><strong>Conclusions: </strong>This study highlights challenges in advance care planning for those with treatable but not curable cancer, especially when uncertain about disease progression. Data suggest that a separation between conversations about medical planning and that of a more social and personal nature may be needed. Further research should investigate the impact of uncertainty of survival on advance care planning practice.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251363752"},"PeriodicalIF":3.9,"publicationDate":"2025-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144964240","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}
引用次数: 0
Lived experiences of family caregivers of those with advanced illnesses: A secondary qualitative data analysis. 晚期疾病患者家庭照护者的生活经历:二次定性数据分析。
IF 3.9 2区 医学
Palliative Medicine Pub Date : 2025-08-22 DOI: 10.1177/02692163251359864
Tan Zhi Ai Linette, Lee Jing Yi, Liaw Khai Loon Karen, Lee Onn Kei Angel, Oh Hong Choon, Koh Lip Hoe, Ng Foong Ling, Milawaty Nurjono
{"title":"Lived experiences of family caregivers of those with advanced illnesses: A secondary qualitative data analysis.","authors":"Tan Zhi Ai Linette, Lee Jing Yi, Liaw Khai Loon Karen, Lee Onn Kei Angel, Oh Hong Choon, Koh Lip Hoe, Ng Foong Ling, Milawaty Nurjono","doi":"10.1177/02692163251359864","DOIUrl":"10.1177/02692163251359864","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers play a crucial role in providing home palliative care for non-cancer patients with advanced illnesses. Given the complexity and heterogeneity of end-of-life caregiving experiences, there is a need to understand factors influencing caregiver outcomes for different profiles of caregivers. It is also crucial to consider the influence of cultural values on caregiving experiences, particularly in Asian settings.</p><p><strong>Aim: </strong>To explore the lived experiences of caregivers of non-cancer patients with advanced illnesses in Singapore.</p><p><strong>Design: </strong>A secondary qualitative analysis of transcripts from interviews conducted as part of a realist evaluation of a non-cancer home-based palliative care programme. Framework analysis was carried out using a combined theoretical framework to identify determinants, mediators and outcomes of caregiving. Analysis was stratified according to five caregiver profiles characterised based on the perceived burdens and benefits of caregiving.</p><p><strong>Setting/participants: </strong>Twenty interview transcripts of family caregivers of non-cancer patients with advanced illnesses were analysed.</p><p><strong>Results: </strong>Two, eight, three and seven family caregivers were profiled to have 'Intensive', 'Balanced', 'Relationship' and 'Satisfied' caregiving experiences respectively. Across all profiles, caregivers' psychological outcomes were found to be more prominent than physical outcomes. Caregivers with 'Intensive'' and 'Balanced' profiles experienced greater caregiving intensity and poorer psychological well-being, as compared to caregivers with 'Relationship' and 'Satisfied' profiles. Caregiver appraisal and quality of relationship with others were found as key mitigating factors impacting caregiving demands on well-being.</p><p><strong>Conclusions: </strong>Insights gleaned from this study can be used to develop resources for home palliative providers, tailored to the different caregiving profiles.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251359864"},"PeriodicalIF":3.9,"publicationDate":"2025-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12476457/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144964225","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}
引用次数: 0
Telehealth in palliative care settings: A systematic review of argument-based ethics literature. 在姑息治疗设置远程医疗:基于论证的伦理文献的系统回顾。
IF 3.9 2区 医学
Palliative Medicine Pub Date : 2025-08-22 DOI: 10.1177/02692163251360115
Leen Krieckemans, Alice Cavolo, Michael Casaer, Chris Gastmans
{"title":"Telehealth in palliative care settings: A systematic review of argument-based ethics literature.","authors":"Leen Krieckemans, Alice Cavolo, Michael Casaer, Chris Gastmans","doi":"10.1177/02692163251360115","DOIUrl":"https://doi.org/10.1177/02692163251360115","url":null,"abstract":"<p><strong>Background: </strong>The need for palliative care is rising rapidly, but meeting global demand is falling behind. Telepalliative care offers a potential solution, though its implementation requires careful ethical evaluation.</p><p><strong>Aim: </strong>To provide an overview of the ethical concepts and arguments related to telepalliative care as presented in the argument-based literature.</p><p><strong>Design: </strong>We conducted a systematic review of argument-based literature following PRISMA-guidelines (PROSPERO: CRD42024533732). Data extraction and synthesis followed the Qualitative Analysis Guide of Leuven.</p><p><strong>Data sources: </strong>We searched 12 databases covering medical, ethical, and technological disciplines using broad, unfiltered terms. Publications in English, French, German, or Dutch on telehealth, palliative care, and ethics were considered. Two researchers independently screened publications, using peer review as a quality proxy due to the lack of standards for argument-based literature.</p><p><strong>Results: </strong>Twenty-six publications were included. Two main ethical approaches emerged: one related to the four principles of biomedical ethics and the other to care. Regarding respect for autonomy, telepalliative care may both promote and limit autonomy, with concerns raised about informed consent, privacy, and confidentiality. Regarding beneficence, potential improvements in symptom management and quality of life were identified. Regarding non-maleficence, risks such as replacing in-person care and medicalizing the home environment were highlighted. Regarding justice, issues of access, equity, distributive justice, and environmental issues were addressed. Concerns about the patient-provider relationship and holistic care were central to care-related arguments.</p><p><strong>Conclusions: </strong>Telehealth's benefits challenge its incompatibility with palliative care, however, significant risks threaten core palliative care values. Thus, careful implementation must prioritize ethical considerations.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251360115"},"PeriodicalIF":3.9,"publicationDate":"2025-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144964269","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}
引用次数: 0
Enhancing the wellbeing of refugees living with advanced life-limiting illness in high-income resettlement countries: A systematic review. 提高高收入安置国患有晚期限制生命疾病的难民的福祉:一项系统综述。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-07-01 Epub Date: 2025-06-14 DOI: 10.1177/02692163251338583
Merrington H, Mahimbo A, DiGiacomo M, Roxas-Harris B, Agar Mr, Nathan S, Hayen A, Heywood Ae, Dawson A
{"title":"Enhancing the wellbeing of refugees living with advanced life-limiting illness in high-income resettlement countries: A systematic review.","authors":"Merrington H, Mahimbo A, DiGiacomo M, Roxas-Harris B, Agar Mr, Nathan S, Hayen A, Heywood Ae, Dawson A","doi":"10.1177/02692163251338583","DOIUrl":"10.1177/02692163251338583","url":null,"abstract":"<p><strong>Background: </strong>Refugees experience barriers to health care after resettlement and may have distinct palliative care needs. There is no systematic guidance to support person-centred palliative care services that are responsive to refugees' needs and preferences.</p><p><strong>Aim: </strong>To synthesis evidence regarding factors enhancing the wellbeing of refugees with advanced life-limiting illness, and their families, to inform palliative care in high-income resettlement countries.</p><p><strong>Design: </strong>A systematic review of primary research studies. We applied a strength-based assets framework to the data extraction and synthesis and conducted a directed content analysis.</p><p><strong>Data sources: </strong>We searched nine electronic databases.</p><p><strong>Results: </strong>Ten of the 1006 studies identified were included in the review: two qualitative, one quantitative and seven case studies. We identified 17 assets that enhanced refugees' wellbeing: resilience, religion, spirituality, sense of identity, belonging, community connections, health and death literacy, acculturation, family and social support, social capital, community structures, access to funeral information, access to services, palliative care service approaches, and workforce capacity. Resilience was linked to identity and belonging, connections within cultural and religious networks, social capital and creating meaningful funeral rituals in resettlement. Palliative care workforce capacity, death literacy, acculturation, refugees' grief experiences and willingness to discuss and plan for death, influenced refugees' attitudes to palliative care, communication with staff about treatment, prognosis and spiritual care, and care outcomes.</p><p><strong>Conclusions: </strong>Further research, co-designed with diverse refugee groups, is needed to inform palliative care service approaches, develop interventions to strengthen key assets and explore the nuanced role of social capital in end-of-life care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"750-764"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227814/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294715","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}
引用次数: 0
End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey. 丧亲神经肿瘤护理人员的临终关怀经历和长期结果:一项横断面调查。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-07-01 Epub Date: 2025-06-14 DOI: 10.1177/02692163251344164
Shaista Meer, Peter Buckle, Rosanna Miller, Louise Murray, Lucy Ziegler, Karin Piil, Florien Boele
{"title":"End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey.","authors":"Shaista Meer, Peter Buckle, Rosanna Miller, Louise Murray, Lucy Ziegler, Karin Piil, Florien Boele","doi":"10.1177/02692163251344164","DOIUrl":"10.1177/02692163251344164","url":null,"abstract":"<p><strong>Background: </strong>The last three months of life (end-of-life phase) are profoundly challenging for patients with brain tumours and their family caregivers. Post-bereavement outcomes are largely unknown.</p><p><strong>Aim: </strong>To better understand long-term outcomes of a brain tumour diagnosis on families, we aimed to describe caregiver experiences during the end-of-life phase and beyond.</p><p><strong>Design: </strong>In this sequential mixed-methods study designed together with bereaved caregivers, we used an online survey. This comprised end-of-life experiences, and post-bereavement outcomes (family functioning: Family APGAR; resilience: CD-RISC-10; mood: HADS; prolonged grief: PG-13-R; post-traumatic stress: TSQ).</p><p><strong>Setting/participants: </strong>Caregivers of patients with brain tumours who were bereaved ⩾6 months ago were invited through social media and charities.</p><p><strong>Results: </strong>105 bereaved neuro-oncology caregivers participated. The end-of-life phase was marked by high symptom burden and disruption to family life, compounded by often unsatisfactory information provision and support. Forty-three percent did not describe the patient's death as dignified. Most caregivers were not well-supported post-bereavement, and current functioning was impacted by notable rates of prolonged grief disorder (64%), post-traumatic stress disorder (42%), depression (35%), anxiety (61%), disruption to family life (53%) and low levels of resilience. Multivariable regressions found better resilience and family functioning to be protective factors for both post-traumatic stress disorder and prolonged grief disorder symptoms, with a dignified death additionally linked to caregivers' prolonged grief scores, explaining 23.8% and 51.0% of variance, respectively.</p><p><strong>Conclusions: </strong>Bereaved neuro-oncology caregivers have high rates of adverse mental health outcomes, highlighting a pressing need for improvements in palliative, end-of-life and post-bereavement services.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"814-826"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294714","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}
引用次数: 0
Evaluating the measurement properties of patient-reported outcome measures for young adults with life-limiting conditions: A systematic review. 评估患有生命限制疾病的年轻成人患者报告的结果测量的测量特性:一项系统回顾。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-07-01 Epub Date: 2025-06-19 DOI: 10.1177/02692163251340175
Rachel L Chambers, Mevhibe B Hocaoglu, Irene J Higginson, Katherine E Sleeman, Lorna K Fraser
{"title":"Evaluating the measurement properties of patient-reported outcome measures for young adults with life-limiting conditions: A systematic review.","authors":"Rachel L Chambers, Mevhibe B Hocaoglu, Irene J Higginson, Katherine E Sleeman, Lorna K Fraser","doi":"10.1177/02692163251340175","DOIUrl":"10.1177/02692163251340175","url":null,"abstract":"<p><strong>Background: </strong>The number of young adults living with life-limiting conditions is increasing. This population requires palliative care responsive to their needs and preferences.</p><p><strong>Aim: </strong>To identify patient reported outcome measures developed, adapted and validated to assess the health outcomes of young adults (aged 18-25 years) living with life-limiting conditions. To examine their measurement properties and identify the most comprehensive, valid and reliable measures.</p><p><strong>Design: </strong>A systematic review and evaluation of measurement properties. PROSPERO ID (CRD42023443273).</p><p><strong>Data sources: </strong>MEDLINE; EMBASE; CINAHL; PsycInfo; AMED and Cochrane Library from inception to 03/07/2023. Searches were emented by hand-searching references.</p><p><strong>Results: </strong>Four thousand nine hundred twenty-two papers were identified. Five hundred and fifty-six full texts were assessed for eligibility. Thirty-five papers reporting 68 patient reported outcome measures were included. Most studies recruited young adults living with cancer (<i>n</i> = 29/35), we did not identify any studies with young adults living with complex neurodisability. Most measures (<i>n</i> = 61/68) were existing paediatric or adult patient reported outcome measures. Seven (<i>n</i> = 7/68) were young adult measures. Most were two-dimensional. The most assessed measurement properties were internal consistency, construct validity and structural validity. None of the measures were recommended for use as they did not meet sufficient criteria for content validity and internal consistency.</p><p><strong>Conclusion: </strong>There is a lack of multi-dimensional patient reported outcome measures for young adults living with life-limiting conditions, especially for non-cancerous conditions. Future studies may identify existing holistic measures developed for children or adults and adapt them for use with young adults. Studies should ask young adults and professionals about the relevance, comprehensiveness and comprehensibility of items.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"765-791"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227827/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144326500","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}
引用次数: 0
Reducing inequity in the provision of children's palliative care in low- and middle- income countries: A focus on education and research. 减少低收入和中等收入国家在提供儿童姑息治疗方面的不公平现象:重点放在教育和研究上。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-07-01 Epub Date: 2025-06-12 DOI: 10.1177/02692163251348091
Julia Downing, Tracey Brand, Alex Daniels, Joe El-Khoury, Nahla Gafer, Gayatri Palat, Olena Riga, Regina Szylit, Ximena Garcia-Quintero
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