Palliative Medicine最新文献

{"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":"https://doi.org/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":"2692163241286652"},"PeriodicalIF":3.6,"publicationDate":"2024-10-15","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}

{"title":"Pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life in older people: A systematic review.","authors":"Tim Biesbrouck, Dine Ad Jennes, Nele Van Den Noortgate, Maaike L De Roo","doi":"10.1177/02692163241286648","DOIUrl":"https://doi.org/10.1177/02692163241286648","url":null,"abstract":"<p><strong>Background: </strong>Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available.</p><p><strong>Aim: </strong>We wanted to synthesize the existing evidence on the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting during the last days of life in older people to develop recommendations that can help guide clinical practice.</p><p><strong>Design: </strong>A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines.</p><p><strong>Data sources: </strong>MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases.</p><p><strong>Results: </strong>Four predominantly descriptive studies on opioid use were included for the treatment of pain and four for dyspnea, without clear evidence for the choice of one specific opioid, nor a specific opioid dose. For death rattle, five randomized controlled trials and two retrospective studies were included. These provide evidence for the prophylactic treatment of death rattle with hyoscine butylbromide. For fever, nausea, and vomiting, no articles met the inclusion criteria.</p><p><strong>Conclusion: </strong>Limited evidence exists to guide the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life of older people. Other than the use of opioids for treatment of pain and dyspnea and prophylactic administration of hyoscine butylbromide to decrease the likelihood of developing death rattle, no specific recommendations can be formulated for use in clinical practice. This demonstrates the challenging nature of research in the last days of life of older people, despite its pressing need.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241286648"},"PeriodicalIF":3.6,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400946","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":"Definition and recommendations of advance care planning: A Delphi study in five Asian sectors.","authors":"Masanori Mori, Helen Y L Chan, Cheng-Pei Lin, Sun-Hyun Kim, Raymond Ng Han Lip, Diah Martina, Kwok Keung Yuen, Shao-Yi Cheng, Sayaka Takenouchi, Sang-Yeon Suh, Sumytra Menon, Jungyoung Kim, Ping-Jen Chen, Futoshi Iwata, Shimon Tashiro, Oi Ling Annie Kwok, Jen-Kuei Peng, Hsien-Liang Huang, Tatsuya Morita, Ida J Korfage, Judith A C Rietjens, Yoshiyuki Kizawa","doi":"10.1177/02692163241284088","DOIUrl":"https://doi.org/10.1177/02692163241284088","url":null,"abstract":"<p><strong>Background: </strong>In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.</p><p><strong>Aim: </strong>To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.</p><p><strong>Design: </strong>A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0-1 were considered very strong agreement and very strong consensus, respectively.</p><p><strong>Setting/participants: </strong>The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).</p><p><strong>Results: </strong>Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as \"a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate.\" Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.</p><p><strong>Conclusions: </strong>Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241284088"},"PeriodicalIF":3.6,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400945","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":"<i>Utilizing intricate care networks</i>: An ethnography of patients and families navigating palliative care in a resource-limited setting.","authors":"Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L Willems, Jeannette Pols","doi":"10.1177/02692163241287640","DOIUrl":"https://doi.org/10.1177/02692163241287640","url":null,"abstract":"<p><strong>Background: </strong>The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.</p><p><strong>Aim: </strong>To explore how patients and families navigate palliative care and the problems they experience.</p><p><strong>Design: </strong>An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.</p><p><strong>Setting/participants: </strong>Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.</p><p><strong>The analysis: </strong>Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.</p><p><strong>Conclusions: </strong>Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241287640"},"PeriodicalIF":3.6,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400936","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":"A pragmatic approach to selecting a grading system for clinical practice recommendations in palliative care.","authors":"Sasha Voznyuk, Rachel Z Carter, Julia Ridley","doi":"10.1177/02692163241286658","DOIUrl":"https://doi.org/10.1177/02692163241286658","url":null,"abstract":"<p><strong>Background: </strong>The limited palliative care evidence base is poorly amenable to existing grading schemes utilized in guidelines. Many recommendations are based on expert consensus or clinical practice standards, which are often considered 'low-quality' evidence. Reinforcing provider hesitancy in translating recommendations to practice has implications for patient care.</p><p><strong>Aim: </strong>To rationalize the selection of an appropriate grading system for rating evidence to support recommendations made in palliative care clinical practice guidelines.</p><p><strong>Design: </strong>Review of the methodology sections of international palliative care guidelines published in English identified five grading systems comparison: Grading of Recommendations, Assessment, Development and Evaluations (GRADE); the Scottish Intercollegiate Guidelines Network (SIGN); Infectious Diseases Society of America-European Society for Medical Oncology (IDSA-ESMO); Confidence in the Evidence from Reviews of Qualitative research (CERQual) and the National Service Framework for Long Term Conditions (NSF-LTC).</p><p><strong>Results: </strong>There is heterogeneity among grading systems used in published palliative care or terminal symptom management guidelines. GRADE has been increasingly adopted for its methodological rigour and inter-guideline consistency with other medical associations. CERQual has the potential to support recommendations informed by qualitative evidence, but its role in clinical guidelines is less defined. The IDSA-ESMO system has an intuitive typology with the ability to categorize tiers of lower-quality evidence.</p><p><strong>Conclusions: </strong>It is challenging to apply commonly used grading systems to the palliative care evidence base, which often lacks robust randomized controlled trials (RCTs). Adoption of IDSA-ESMO offers a feasible and practical alternative for lower-resourced guideline developers and palliative clinicians without a prerequisite for methodological expertise.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163241286658"},"PeriodicalIF":3.6,"publicationDate":"2024-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142378157","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":"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":"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}

{"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}

{"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}

{"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}