Palliative MedicinePub Date : 2024-12-01Epub Date: 2024-09-27DOI: 10.1177/02692163241281145
Daisy Jm Ermers, Maartje J van Geel, Yvonne Engels, Demi Kellenaers, Anouk Sj Schuurmans, Floortje K Ploos van Amstel, Carla Ml van Herpen, Yvonne Schoon, Henk J Schers, Kris Cp Vissers, Evelien Jm Kuip, Marieke Perry
{"title":"The focus on life-prolonging anticancer treatment hampers shared decision-making in people with advanced cancer: A qualitative embedded multiple-case study.","authors":"Daisy Jm Ermers, Maartje J van Geel, Yvonne Engels, Demi Kellenaers, Anouk Sj Schuurmans, Floortje K Ploos van Amstel, Carla Ml van Herpen, Yvonne Schoon, Henk J Schers, Kris Cp Vissers, Evelien Jm Kuip, Marieke Perry","doi":"10.1177/02692163241281145","DOIUrl":"10.1177/02692163241281145","url":null,"abstract":"<p><strong>Background: </strong>Implementing shared decision-making in oncology practice is often limited, particularly integrating the patient's context into decision-making. To improve this, we conducted a quality improvement project, <i>CONtext. CONtext</i> attempts to accomplish this by: (1) Integrating the patient's context into shared decision-making during consultation with the medical oncologist; (2) Actively involving the GP and case manager (a specialized oncology nurse), who often have knowledge about the patient's context, and; (3) Giving the person with advanced cancer a time-out period of up to 2 weeks to consider and discuss treatment options with others, including close family and friends.</p><p><strong>Aim: </strong>To explore how persons with advanced cancer and their involved professionals experienced shared decision-making after the introduction of <i>CONtext</i>.</p><p><strong>Design: </strong>A qualitative embedded multiple-case study using in-depth interviews analysed with inductive content analysis.</p><p><strong>Participants: </strong>A purposive sample of 14 cases, each case consisting of a patient with advanced cancer and ideally their medical oncologist, case manager, and GP.</p><p><strong>Results: </strong>Four themes were identified: shared decision-making is a dynamic and continuous process (1), in which the medical oncologist's treatment recommendation is central (2), fuelled by the patients' experience of not having a choice (3), and integrating the patient's context into shared decision-making was considered important but hampered (4), for example, by the association with the terminal phase.</p><p><strong>Conclusions: </strong>The prevailing tendency among medical oncologists and persons with advanced cancer to prioritize life-prolonging anticancer treatments restricts the potential for shared decision-making. This undermines integrating individual context into decision-making, a critical aspect of the palliative care continuum.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1156-1168"},"PeriodicalIF":3.6,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11613517/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142351667","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}
Palliative MedicinePub Date : 2024-12-01Epub Date: 2024-09-27DOI: 10.1177/02692163241283540
Mary Nevin, Sheila Payne, Valerie Smith
{"title":"Identification of core indicators for the integration of a palliative care approach in hospitals: An international Delphi study.","authors":"Mary Nevin, Sheila Payne, Valerie Smith","doi":"10.1177/02692163241283540","DOIUrl":"10.1177/02692163241283540","url":null,"abstract":"<p><strong>Background: </strong>Healthcare providers working in hospitals have significant exposure to patients with palliative care needs. For many patients, these needs often reflect non-specialist rather than specialist palliative care needs. Embedding a palliative care approach in acute hospital-based care however is challenging.</p><p><strong>Aim: </strong>To identify core indicators for the integration of a palliative care approach in hospitals.</p><p><strong>Design: </strong>A Delphi technique used three sequential online survey rounds. Preliminary indicators were identified in a concept analysis of a palliative care approach, and a systematic review of hospital-based healthcare providers' views of a palliative care approach.</p><p><strong>Participants: </strong>An international expert panel of three key stakeholder groups (clinicians, researchers, patients/family members) participated in each Delphi round.</p><p><strong>Results: </strong>The Delphi participants were recruited from 12 countries; 97 individuals responded to round 1, 78 to round 2 and 72 to round 3 (74% overall response rate). Consensus was achieved (defined a priori as >70%) on 32 core indicators of a hospital-based palliative care approach, with five structural indicators (relating to infrastructure and governance), 21 organisational indicators (relating to clinical care processes) and six staff indicators (relating to training and support for healthcare providers).</p><p><strong>Conclusions: </strong>This study offers multi-level guidance for clinical practice, policy and research related to integration of a palliative care approach in hospitals, based on evidence and international consensus from major stakeholder groups. These core indicators provide a means to assess, review and communicate the core elements of a palliative care approach in hospitals.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1169-1183"},"PeriodicalIF":3.6,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11613522/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142351666","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}
Palliative MedicinePub Date : 2024-12-01Epub Date: 2024-10-30DOI: 10.1177/02692163241296478
Andy Bradshaw, Naomi Richards, Jamilla A Hussain, Joanna M Davies
{"title":"We need to talk about social class: Why theories of social class matter for understanding inequities in palliative and end-of-life care.","authors":"Andy Bradshaw, Naomi Richards, Jamilla A Hussain, Joanna M Davies","doi":"10.1177/02692163241296478","DOIUrl":"10.1177/02692163241296478","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1076-1078"},"PeriodicalIF":3.6,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11613530/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142546731","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}
Palliative MedicinePub Date : 2024-10-01Epub Date: 2024-07-28DOI: 10.1177/02692163241267152
Satoru Ogawa, Fumimasa Amaya
{"title":"A peripherally acting μ-opioid receptor antagonist for treating opioid-associated tinnitus: A case report.","authors":"Satoru Ogawa, Fumimasa Amaya","doi":"10.1177/02692163241267152","DOIUrl":"10.1177/02692163241267152","url":null,"abstract":"<p><strong>Background: </strong>The use of opioids occasionally causes tinnitus. However, there is a paucity of data regarding the use of peripherally acting μ-opioid receptor antagonists for opioid-associated tinnitus in patients with cancer.</p><p><strong>Actual case: </strong>A 74-year-old male with pancreatic cancer complained of abdominal pain. Two days after initiating oxycodone therapy, the patient experienced tinnitus during body movements. Although peripheral tinnitus disappeared after discontinuing oxycodone, it reappeared with hydromorphone or tapentadol administration.</p><p><strong>Possible courses of action: </strong>Drug cessation is a preferred intervention for drug-induced tinnitus; however, the cessation of opioids may not be feasible in patients with cancer who are already taking opioids.</p><p><strong>Formulation of a plan: </strong>Based on the presumed mechanism of peripheral tinnitus, the use of peripherally acting μ-opioid receptor antagonists was planned, and 200 μg/day of naldemedine was prescribed for tinnitus relief.</p><p><strong>Outcome: </strong>Tinnitus disappeared immediately after initiating naldemedine, and the pain was well-controlled. The effect was preserved after increasing or switching opioids.</p><p><strong>Lessons: </strong>The use of peripherally acting μ-opioid receptor antagonists may be an option to treat opioid-associated tinnitus without compromising the analgesic effects.</p><p><strong>View: </strong>Further clinical data regarding the secondary effect of peripherally acting μ-opioid receptor antagonists on opioid-associated complications other than constipation are required.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1065-1068"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141788822","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}
{"title":"Differences in palliative care needs between cancer patients and non-cancer patients at the start of specialized palliative care: A nationwide register-based study.","authors":"Maiken Bang Hansen, Leslye Rojas-Concha, Morten Aagaard Petersen, Mathilde Adsersen, Mogens Groenvold","doi":"10.1177/02692163241269705","DOIUrl":"10.1177/02692163241269705","url":null,"abstract":"<p><strong>Background: </strong>Patients with non-cancer disease are less likely to receive specialized palliative care than cancer patients. To be able to provide the best specialized palliative care, it is important to understand palliative care needs of non-cancer patients and whether the type and level of needs differ from those of cancer patients. Large studies including both cancer and non-cancer patients, using validated needs-assessment-tools, are needed to understand differences in palliative care needs at admittance to specialized palliative care.</p><p><strong>Aims: </strong>To compare palliative care needs at the start of palliative care for cancer and non-cancer disease.</p><p><strong>Design: </strong>Six-year nationwide register-based study.</p><p><strong>Setting/participants: </strong>This study included patients from all Danish specialized palliative care services (hospice care, hospital-based palliative care, home-based palliative care, or consultation) who completed a need-assessment-questionnaire. Ordinal logistic regression was performed to study the association between diagnosis and needs.</p><p><strong>Results: </strong>Cancer patients had a higher probability of receiving specialized palliative care. Of the 44,315 palliative care admissions included in this study, 93.3% were on cancer patients. Independent of diagnosis patients experienced on average six needs and high levels of fatigue and impaired physical functioning. Non-cancer patients had significantly higher odds of insomnia, fatigue and impaired emotional functioning, physical functioning, and quality of life whereas cancer patients had higher odds of pain (except for patients with neurological disease).</p><p><strong>Conclusions: </strong>The higher levels of several symptoms/problems among non-cancer patients compared to cancer patients suggests that referral to specialized palliative care should be improved for non-cancer patients perhaps by improving identification of palliative needs.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1021-1032"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142081191","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}
Palliative MedicinePub Date : 2024-10-01Epub Date: 2024-08-10DOI: 10.1177/02692163241268449
Melissa J Bloomer, Laurie Saffer, Jayne Hewitt, Lise Johns, Donna McAuliffe, Ann Bonner
{"title":"Maybe for unbearable suffering: Diverse racial, ethnic and cultural perspectives of assisted dying. A scoping review.","authors":"Melissa J Bloomer, Laurie Saffer, Jayne Hewitt, Lise Johns, Donna McAuliffe, Ann Bonner","doi":"10.1177/02692163241268449","DOIUrl":"10.1177/02692163241268449","url":null,"abstract":"<p><strong>Background: </strong>Assisted dying, also commonly known as euthanasia and physician-assisted suicide, is legal in many countries. Interest in assisted dying is growing due to evolving societal understandings of a good death and a desire for choice. Ethico-legal perspectives are well-known, but as societies become more heterogenous, a greater understanding of the perspectives of people from diverse racial, ethnic, and cultural backgrounds is needed.</p><p><strong>Aim: </strong>To explore perspectives of people from diverse racial, ethnic and cultural backgrounds about assisted dying.</p><p><strong>Design: </strong>Scoping review with narrative synthesis. The protocol was registered with Open Science Framework.</p><p><strong>Data sources: </strong>Medline, CINAHL Complete, PsycINFO and ProQuest Dissertations & Theses Global were searched from inception to May 2023. Citations were independently assessed against inclusion and exclusion criteria.</p><p><strong>Results: </strong>Of the 17 included studies, perspectives of assisted dying were presented according to religion, religiosity, spirituality, race, ethnicity and ancestry. Perspectives were diverse, presenting more as a spectrum, with multiple intersections and interconnections. Support and/or opposition for assisted dying differed according to cultural attributes, but even amongst those with similar cultural attributes, perspectives differed according to life experiences and notions of suffering.</p><p><strong>Conclusion: </strong>Perspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"968-980"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11487986/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141913658","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}
Palliative MedicinePub Date : 2024-10-01Epub Date: 2024-08-10DOI: 10.1177/02692163241266374
Laura Barrett, Julia Hackett, Jo Taylor, Andrew Papworth, Gabriella Walker, Lorna Fraser
{"title":"Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.","authors":"Laura Barrett, Julia Hackett, Jo Taylor, Andrew Papworth, Gabriella Walker, Lorna Fraser","doi":"10.1177/02692163241266374","DOIUrl":"10.1177/02692163241266374","url":null,"abstract":"<p><strong>Background: </strong>Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important.</p><p><strong>Aim: </strong>To evaluate a paediatric palliative care research centre's PPI activity to determine what went well, or less well; and how future activities can be improved.</p><p><strong>Design: </strong>Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically.</p><p><strong>Settings/participants: </strong>Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre.</p><p><strong>Findings: </strong>The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre's approach to PPI and the opportunities to improve.</p><p><strong>Conclusions: </strong>To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a 'route map' for establishing an impactful PPI group for paediatric palliative care research.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1010-1020"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11487900/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141913657","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}
Palliative MedicinePub Date : 2024-10-01Epub Date: 2024-08-16DOI: 10.1177/02692163241269727
Alina Senßfelder, Matthias Havemann, Anna J Pedrosa Carrasco, Pia von Blanckenburg, Carola Seifart
{"title":"Preserving the integrity of personhood in people with advanced cancer: An in-depth qualitative study among patients, relatives, and care professionals.","authors":"Alina Senßfelder, Matthias Havemann, Anna J Pedrosa Carrasco, Pia von Blanckenburg, Carola Seifart","doi":"10.1177/02692163241269727","DOIUrl":"10.1177/02692163241269727","url":null,"abstract":"<p><strong>Background: </strong>Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking.</p><p><strong>Aim: </strong>To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers.</p><p><strong>Design: </strong>A qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis.</p><p><strong>Setting/participants: </strong>Fifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital.</p><p><strong>Results: </strong>We developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood.</p><p><strong>Conclusions: </strong>The developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1054-1064"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11481403/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141996303","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}
Palliative MedicinePub Date : 2024-10-01Epub Date: 2024-06-25DOI: 10.1177/02692163241261207
Hakki Demirkapu, Wael Edally, Aline De Vleminck, Lieve Van den Block, Stéphanie De Maesschalck, Dirk Devroey
{"title":"Views on advance care planning of family members of older adults with Turkish and Moroccan backgrounds: An exploratory interview study.","authors":"Hakki Demirkapu, Wael Edally, Aline De Vleminck, Lieve Van den Block, Stéphanie De Maesschalck, Dirk Devroey","doi":"10.1177/02692163241261207","DOIUrl":"10.1177/02692163241261207","url":null,"abstract":"<p><strong>Background: </strong>Significantly fewer individuals with migration backgrounds than native-born individuals undertake advance care planning. Older adults with Turkish and Moroccan backgrounds represent one of the largest ageing non-Western minority groups in Europe. Their relatives could play important roles in facilitating or hindering advance care planning, but their views remain underexplored.</p><p><strong>Aim: </strong>To explore advance care planning knowledge, experience, views, facilitators and barriers among older Turkish and Moroccan adults' relatives in Belgium.</p><p><strong>Design: </strong>Qualitative thematic analysis of semi-structured interview data.</p><p><strong>Setting/participants: </strong>Twenty-two relatives of older Turkish and Moroccan adults in Brussels, Mechelen and Antwerp, recruited via general practitioners.</p><p><strong>Results: </strong>Participants had limited advance care planning knowledge and had not discussed it with healthcare professionals. Some found discussing end-of-life preferences with relatives beneficial; others opposed the discussion of specific topics or felt discussions were unnecessary, as they felt responsible for caregiving and trusted by their relatives to make future decisions. Barriers included personal and relational characteristics, emotional difficulty and perceived non-urgency. Facilitators included information in older adults' native languages, general practitioners' cautious initiation and the involvement of several family members.</p><p><strong>Conclusions: </strong>Relatives of older people with Turkish and Moroccan backgrounds are unfamiliar with advance care planning and have highly variable views on it. People should be given opportunities to discuss advance care planning in a culturally appropriate manner, and the diversity of perspectives regarding whether and how to engage in such planning should be recognised.ClinicalTrials.gov no. NCT05241301.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1000-1009"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141446740","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}
Palliative MedicinePub Date : 2024-10-01Epub Date: 2024-09-09DOI: 10.1177/02692163241271010
Pru Holder, Lucy Coombes, Jane Chudleigh, Richard Harding, Lorna K Fraser
{"title":"Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence.","authors":"Pru Holder, Lucy Coombes, Jane Chudleigh, Richard Harding, Lorna K Fraser","doi":"10.1177/02692163241271010","DOIUrl":"10.1177/02692163241271010","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit.</p><p><strong>Aim: </strong>Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals.</p><p><strong>Design: </strong>Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework.</p><p><strong>Data sources: </strong>CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included.</p><p><strong>Results: </strong>One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (<i>n</i> = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated.</p><p><strong>Conclusion: </strong>Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"981-999"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11491046/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142154774","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}