BMC Palliative Care最新文献

{"title":"Self-reported knowledge and difficulties towards palliative care among healthcare professionals in rural China: a cross-sectional study.","authors":"Junwei Niu, Min Feng, Changhui Song, Hui Xie","doi":"10.1186/s12904-025-01674-w","DOIUrl":"https://doi.org/10.1186/s12904-025-01674-w","url":null,"abstract":"<p><strong>Background: </strong>Palliative care (PC) in rural China remains underdeveloped, with limited specialized services and significant challenges for healthcare professionals. This study aimed to examine the difficulties in providing PC and their factors from the perspective of healthcare professionals in rural Henan province, China, where specific PC services are currently unavailable.</p><p><strong>Methods: </strong>A cross-sectional study was conducted between June and July 2024, using a convenience sample of 255 healthcare professionals from four secondary/tertiary hospitals participated. Data were collected on participants' demographic characteristics, information on recently deceased cancer patients they had cared for, and PC-related information. PC knowledge and PC difficulties were assessed using the Palliative Care Knowledge Questionnaire-Chinese version (PCKQ-PCN) and the Palliative Care Difficulties Scale (PCDS). Linear regression analysis identified factors associated with PC difficulties.</p><p><strong>Results: </strong>Among the 255 participants (Mean[age]: 34.82 ± 7.04), 71.8% were females, 57.3% were physicians, and the average work experience was 10.20 years. Regarding PC experience, 48.2% had participated in 1-2 training sessions annually over the past two years, and 32.2% reported a poor understanding of PC. The total PCKQ-PCN mean score was 13.28 ± 2.62, with 25.2% of participants classified as having poor knowledge. The PCDS mean score was 42.58 ± 13.59. Linear regression analysis showed that participating in at least one PC training session every six months (β = -10.66; p = 0.032), having experience caring for seriously ill people at home (β =  -6.31; p = 0.024), greater knowledge of symptom management (β = -3.72; p = 0.012), and higher levels of basic knowledge (β = -5.12; p = 0.007) were negatively associated with PC difficulties. Conversely, limited understanding of PC (β = 12.95; p = 0.021), greater knowledge of spiritual care and death education (β = 4.95; p = 0.034), and having new rural cooperative medical insurance (β = 6.36; p = 0.023; β = 3.21; p = 0.042) were positively associated with PC difficulties.</p><p><strong>Conclusions: </strong>This study highlights critical gaps in rural China's PC services, including inadequate training, limited focus on spiritual needs and death education, and disparities in insurance coverage. Targeted training programs in healthcare professionals and policy reforms are urgently needed to improve PC quality and accessibility in rural areas.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"37"},"PeriodicalIF":2.5,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374769","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":"Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendations.","authors":"Diana Špoljar, Sunčana Janković, Dina Vrkić, Geraldine McNamara, Marko Ćurković, Milivoj Novak, Boris Filipović-Grčić, Stefan Grosek, Chris Gastmans, Bert Gordijn, Ana Borovečki","doi":"10.1186/s12904-024-01636-8","DOIUrl":"10.1186/s12904-024-01636-8","url":null,"abstract":"<p><strong>Background: </strong>Working in neonatal intensive care units (NICUs) or pediatric intensive care units (PICUs) entails making difficult decisions about children at the end of their lives that raise significant ethical issues. This review identified the ethical content of the papers containing expert guidelines and recommendations in relation to end-of-life decision-making in NICUs and PICUs, by analyzing ethical positions and ethical principles behind them.</p><p><strong>Methods: </strong>Systematic search was limited to the period from 1990 to 2023 and encompassed 6 bibliographic databases (Medline, PubMed, CINAHL, APA PsycINFO, Web of Science Core Collection, and Scopus), grey literature sources and relevant reference lists. The international, national, or institutional papers providing expert guidelines and recommendations comprehensively addressing either withholding/withdrawing of life sustaining treatment, palliative care, and/or intentional life terminating actions in NICUs and PICUs were included in analysis. Also, only papers published in English language were considered. Papers that were not developed by intensive care expert communities and those that were either too narrow (e.g., dealing with specific issues or specific patient groups) or broad (e.g., addressing issues of interest on general and abstract level) were excluded. The search data were gathered and deduplicated, partly by Mendeley software. Titles and abstracts were screened by three independent reviewers, and full-text papers further reviewed and assessed for eligibility. Subsequently, data of interest were extracted, and qualitative analysis was performed.</p><p><strong>Results: </strong>Initial search retrieved 6784 papers from bibliographic databases and 363 from other utilized sources. Titles and abstracts from 2827 papers were screened. 17 full texts were further assessed resulting in a total number of 9 papers (6 from bibliographic databases and 3 from other sources) which met the inclusion criteria and were included for analysis. The papers were published from 2001 to 2021. Four papers primarily focus on NICU setting, while five on PICU. A total of 38 ethical positions were identified and were grouped under 5 themes according to the content of the positions, relating to: patients, parents, medical team, decision-making and treatment options. A total of 12 ethical principles were mentioned in the papers. The principle of beneficence emerged as the most prominent one. It was explicitly mentioned in all included papers except one.</p><p><strong>Conclusions: </strong>This review has shown that papers containing guidelines and recommendations on end-of-life decision-making in the NICU and PICU promote similar stances. The ethical principle of beneficence is at the core of the decision-making process, and all decisions are made focusing on the child's best interests.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"36"},"PeriodicalIF":2.5,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11796237/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191120","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":"Social support sources for people with palliative care needs at home: a scoping review.","authors":"Trudy Schutter, Ian Koper, Kris Vissers, Jeroen Hasselaar","doi":"10.1186/s12904-025-01650-4","DOIUrl":"10.1186/s12904-025-01650-4","url":null,"abstract":"<p><strong>Background: </strong>Recent literature suggests an increase in attention for the social dimension of palliative care. However, who provides social support to patients with palliative care needs at home and their relatives is often unclear, and insight in the role of the community and professionals with a main focus on social support, not being health care professionals, is lacking in this respect. Therefore, in this study we explore social support for people with palliative care needs residing at home and their relatives, provided by the community and professionals from the welfare domain, and want to understand when social support is experienced as sufficient by the recipient.</p><p><strong>Methods: </strong>A scoping review was conducted to search for literature on social support by the community and professionals from the welfare domain to people with palliative care needs at home, using the databases PubMed and Web of Sciences for studies published between January 1, 2007, and June 1, 2023.</p><p><strong>Results: </strong>Social support to people at home with palliative care needs and their relatives is mainly provided by informal caregivers, namely family, friends and neighbours. These people providing social support is perceived as normal, natural and is expected by the recipient. Social support by the wider community and by professionals from the welfare domain can enhance, complement and/or substitute this support. Within the 27 included articles, nine studies provide results of social support interventions, which show that volunteer or professional services aimed at enhancing and mobilizing the informal social network of the patient are an important way of building supportive and sustainable social support networks.</p><p><strong>Conclusions: </strong>Community sources and professionals with a main focus on social support such as social workers can enhance, complement and substitute social support provided by the informal network, if needed. Structured approaches can improve recognition of unmet social problems and needs of people with palliative care needs at home.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"34"},"PeriodicalIF":2.5,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11792421/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191121","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":"Validating the self-competence in death work scale for end-of-life care volunteers.","authors":"Zhuyun Lin, Vivian Weiqun Lou, Wallace Chi Ho Chan","doi":"10.1186/s12904-025-01666-w","DOIUrl":"10.1186/s12904-025-01666-w","url":null,"abstract":"<p><p>There is an increasing demand for end-of-life care (EoLC) volunteers in Hong Kong's aging population. However, there is no validated measure that assesses volunteers' self-competence in coping with death. This is essential to optimize their services, and ensure their psychological well-being. This study aimed to validate the existing Self-Competence in Death Work Scale (SC-DWS) for EoLC volunteers. This scale has been tested previously on health professionals providing end-of-life care, and was adapted for this study with words that fitted the volunteer context.A self-administered survey collected demographic information, personal experiences, the 16-item SC-DWS, 15-item Templer Death Anxiety Scale, and the 8-item Spiritual Wellbeing Scale to examine the internal consistency, concurrent validity, and discriminative validity of this scale among EoLC volunteers. The study sample consisted of all applicants who registered for the EoLC volunteer training programme between 2019 and 2021. Applicants first underwent a systematic screening and selection procedure. They completed an online registration form which included risk assessment, followed by structured individual interviews focusing on applicants' motivation and mental preparedness for their role. The content validity of the SC-DWS was determined using data from the 341 volunteers who were screened prior to training. Construct validity was tested using Exploratory Factor Analysis (EFA), which suggested that two-factors (subscales) offered the best combination of variables (Emotional and Existential Subscales). The new subscales and the component items differed slightly from those identified in health professional samples. Concurrent validity was demonstrated by strong correlations between the SC-DWS, and the Death Anxiety, and Spiritual Wellbeing scales. Discriminant validity was supported by strong relationships between the new subscales and participants' personal experiences. The SC-DWS was shown not only to be reliable and valid for EoLC volunteers, but it also highlighted the unique emotional challenges they faced.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"35"},"PeriodicalIF":2.5,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11792580/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191122","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":"\"…They were just treating her Symptom by Symptom\": maternal experiences of having a child with spinal muscular atrophy in Ghana.","authors":"Esther Doe-Yo Tawiah, Jacob Owusu Sarfo","doi":"10.1186/s12904-025-01651-3","DOIUrl":"10.1186/s12904-025-01651-3","url":null,"abstract":"<p><strong>Background: </strong>Children with Spinal Muscular Atrophy (SMA) face the challenges of a rare condition impacting their motor neurons, placing substantial caregiving burdens on their mothers. Despite being primary caregivers, mothers of children with SMA in Ghana often find their voices unheard, with restricted access to vital interventions like counselling, support groups, and respite care designed to aid them. This study aimed to explore the experiences of mothers caring for children with SMA in Ghana, where the diagnosis is often delayed and support systems are limited.</p><p><strong>Methods: </strong>We conducted an interpretative phenomenological study with a purposive sample of seven mothers whose children, aged between 8 and 24 months, were diagnosed with Spinal Muscular Atrophy (SMA) and registered with the Rare Disease Ghana Initiative (RDGI). Individual interviews were conducted between August and September 2023 using semi-structured interview guides. The data were manually analysed using a pen-and-paper method. The study adhered to ethical guidelines, including informed consent procedures and confidentiality measures to protect participants' rights and privacy.</p><p><strong>Results: </strong>This study explored mothers' experiences caring for children with SMA, revealing a spectrum of challenges that impact their physical, emotional, spiritual, and social well-being. The findings identified five dominant themes and thirteen subcategories, encompassing issues such as sleep deprivation, mental health concerns, emotional turmoil, practical difficulties, and social isolation. It was also found that mothers tend to have a deep connection to their faith and a sense of closeness to God during challenging times, which provides them with strength and comfort. This collectively identifies the difficult journey of these mothers as they seek diagnosis and treatment for their children.</p><p><strong>Conclusion: </strong>The study identified challenges faced by mothers in caring for their children with SMA. These challenges are reported to significantly impact their physical, psychological, social, and spiritual well-being. To support these mothers effectively, it is recommended that the Ministry of Health, Ghana Health Service, healthcare professionals, policymakers, and non-governmental organisations in Ghana should consider community engagement and education, integration of spiritual care, and psychosocial support programmes.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"17"},"PeriodicalIF":2.5,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11786418/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076014","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":"BreathCarer: Informal carers of patients with chronic breathlessness: a mixed-methods systematic review of burden, needs, coping, and support interventions.","authors":"Saskia Blütgen, Anne Pralong, Carolin Wilharm, Yvonne Eisenmann, Raymond Voltz, Steffen T Simon","doi":"10.1186/s12904-025-01670-0","DOIUrl":"10.1186/s12904-025-01670-0","url":null,"abstract":"<p><strong>Background: </strong>Breathlessness is a common symptom in chronic and advanced diseases, and it poses a significant burden to patients and to their informal carers. They play a crucial role in sustainable care for patients living with breathlessness, but their challenges and needs are often neglected.</p><p><strong>Objective: </strong>To provide a systematic overview of the literature on the burden, needs, coping and use of healthcare and social services by carers of patients suffering from chronic breathlessness due to any life-limiting disease.</p><p><strong>Design: </strong>A mixed-methods systematic review (PROSPERO CRD42022312989).</p><p><strong>Data sources: </strong>Medline, CENTRAL, PsycINFO, and CINAHL were searched and complemented with forward and backward searches and expert consultation.</p><p><strong>Review methods: </strong>The mixed-methods review included any study on burden, needs and coping among carers of patients with breathlessness published from the inception of the databases until July 2023. A narrative analysis of the quantitative results and a pragmatic meta-aggregation of the qualitative findings were performed, followed by a mixed-methods convergent segregated approach.</p><p><strong>Findings: </strong>A total of 53 studies with 4,849 carers were included. Breathlessness is highly burdensome for carers who live with and care for patients or for those who do not live with the patients and care for them. Breathlessness is a significant risk factor for high carers' burden, contributing to deteriorating physical and mental health among carers and creating an urgent need for external support. A major challenge is the sense of being trapped in a state of constant alertness and anxiety, centred around managing the patient's breathlessness. Carers bear substantial emotional burden due to uncertainty, sleep disturbances, and social isolation, which leads to severe psychological distress. Their unmet needs for professional guidance, self-management strategies, and social interaction are high. While supportive interventions, such as specialized services and multidisciplinary approaches, can alleviate some of the burden, there remains a lack of targeted interventions specifically designed for carers.</p><p><strong>Conclusions: </strong>This review highlights the substantial burden associated with caring for patients with chronic breathlessness, the unmet needs of carers and the lack of supportive care structures, leaving them with little option but to accept the situation.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"33"},"PeriodicalIF":2.5,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11786361/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076015","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":"Effect of motivational interviewing to promote advance care planning among palliative care patients in ambulatory care setting: a randomized controlled trial.","authors":"Helen Yue-Lai Chan, Doris Yin-Ping Leung, Po-Tin Lam, Polly Po-Shan Ko, Raymond Wai-Man Lam, Kin-Shan Chan","doi":"10.1186/s12904-025-01667-9","DOIUrl":"10.1186/s12904-025-01667-9","url":null,"abstract":"<p><strong>Background: </strong>Many patients have mixed feelings about end-of-life care, even when facing life-limiting conditions. Motivational interviewing might be useful for supporting patients in evoking reasons for advance care planning. This study aimed to examine the effects of an advance care planning program adopting motivational interviewing among palliative care patients.</p><p><strong>Methods: </strong>A two-arm parallel randomized controlled trial was conducted between January 2018 and December 2019 in the palliative care clinics of two hospitals. Adult patients who were newly referred to palliative care services, with a score of 60 or higher in the Palliative Performance Scale and mentally competent, were eligible for the study. While all participants received palliative care as usual care, those in the intervention group also received the advance care planning program through three home visits. The primary outcome was the readiness to discuss and document end-of-life care decisions, and the secondary outcomes included decisional conflict, perceived stress, and quality of life.</p><p><strong>Results: </strong>A total of 204 participants (mean [SD] age, 74.9 [10.8]; 64.7% male; 80.4% cancer) were recruited. Generalized estimating equation analyses showed a significant improvement in readiness for advance care planning behaviors in the intervention group compared with the control group at 3 months post-allocation (group-by-time interaction, appointing proxy: β = 0.80; 95% CI, 0.25-1.35; p = .005; discussing with family: β = 0.76; 95% CI, 0.22-1.31; p = .006; discussing with medical doctors: β = 0.86; 95% CI, 0.30-1.42; p = .003; documenting: β = 0.89; 95% CI, 0.36-1.41; p < .001). The proportions of signing advance directives and placing a do-not-attempt cardiopulmonary resuscitation order were significantly higher in the intervention group, with a relative risk of 3.43 (95% CI, 1.55-7.60) and 1.16 (95% CI, 1.04-1.28), respectively. The intervention group reported greater improvements in social support and value of life than the control group immediately after the intervention. Significant improvements in decisional conflicts and perceived stress were noted in both groups.</p><p><strong>Conclusions: </strong>Motivational interviewing was effective in supporting patients to resolve ambivalence regarding end-of-life care, thereby increasing their readiness for discussing and documenting their care choices.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov Identifier: NCT04162912 (Registered on 14/11//2019).</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"31"},"PeriodicalIF":2.5,"publicationDate":"2025-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11786551/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076018","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":"Cross-referencing French hematology teams' knowledge and perception of end-of-life situations: a national mixed-methods survey.","authors":"Chloé Prod'homme, Côme Bommier, Laurène Fenwarth, Stephane Moreau, Alice Polomeni","doi":"10.1186/s12904-025-01659-9","DOIUrl":"10.1186/s12904-025-01659-9","url":null,"abstract":"<p><strong>Introduction: </strong>Haematology is a speciality frequently confronted with end-of-life situations, and teams will be concerned by the question of medical assistance in dying. The Ethics Commission of the French Society of Haematology has conducted a survey on the knowledge and perceptions of healthcare professionals regarding complex end-of-life situations.</p><p><strong>Methods: </strong>A cross-sectionalonline survey of hematology professionals in France. The comprehensive online questionnaire addressed respondents' experience of complex end-of-life situations in hematology, based on 7 clinical vignettes. The survey contained 55 questions, 6 of which were open-ended. They were asked to give their opinion on whether it should be legalized. Justifications were then requested and analyzed by theme.</p><p><strong>Results: </strong>The survey was distributed to associations of hematology healthcare professionals (approximately 1,300 members). Overall, 182 healthcare professionals replied, including a third nurses and a third physicians. The average score for identifying complex situations was 7.1 out of 10 (IQR 5.7,8.6), with lesser knowledge of situations involving double effect, euthanasia and sedation for distress than of situations involving limiting or stopping treatment. Training in palliative care was the main driver of knowledge (p = 0.004), as well as being a physician (p < 0.001). We found that the opinions of healthcare professionals regarding the legalization of medical assistance in dying in France were diverse and well-founded.</p><p><strong>Conclusion: </strong>Hematology healthcare professionals had lesser knowledge of situations involving double effect, euthanasia and sedation for distress. Knowledge of specific situations impacts professionals' opinion on legalization of medical assistance in dying.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"32"},"PeriodicalIF":2.5,"publicationDate":"2025-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11786354/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076017","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":"Everyday activity strategies perceived by people with advanced cancer: a qualitative explorative study.","authors":"Karen la Cour, Lisa Gregersen Oestergaard, Marc Sampedro Pilegaard","doi":"10.1186/s12904-025-01660-2","DOIUrl":"10.1186/s12904-025-01660-2","url":null,"abstract":"<p><strong>Background: </strong>Despite growing research on the daily life of people with advanced cancer, more specific knowledge is needed about the specific strategies these people use to manage everyday activities.</p><p><strong>Purpose: </strong>This study explores how people with advanced cancer manage their everyday activities and describe their specific strategies.</p><p><strong>Methods: </strong>The qualitative study was designed with an explorative approach. Data from 28 people with advanced cancer was drawn from a trial including qualitative interviews to elicit participants' perceptions about managing their everyday activities. Interviews were conducted in participants' homes and analysed using an inductive thematic analysis.</p><p><strong>Results: </strong>Within an overarching theme of keeping 'Daily life as usual', the findings unfold participants' specific strategies identified within two sub-themes ', Upholding routines' and 'Activity adaptations'. Upholding routines related to 1) Personal care and household and 2) Leisure-, social- and work-life. Activity adaptation about 1) Working with and around physical limitations; 2) Sharing, delegating, and letting go; and 3) Enlisting 'outside' support.</p><p><strong>Conclusion: </strong>This study specified participants' specific and distinct self-developed strategies within routines and activity adaptations. The strategies reflect participants' needs for maintaining functioning while relieving pain and mourning, which holds essential potential for informing person-centred intervention development integrating rehabilitation in palliative care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"30"},"PeriodicalIF":2.5,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780809/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143068929","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":"Work-related grief and bereavement experiences of social and community service workers working with people experiencing social disadvantage: a rapid scoping review.","authors":"Kara Whitlock, Zahra Premji, Ashley Mollison, Carolina Posada, Mauricio Arias-Rojas, Charlotte Futcher, Kelli I Stajduhar","doi":"10.1186/s12904-025-01668-8","DOIUrl":"10.1186/s12904-025-01668-8","url":null,"abstract":"<p><strong>Background: </strong>While an extensive body of research in palliative care exists on the experiences of grief and bereavement among family caregivers, much of this research is based on normative assumptions of who family caregivers are - housed, financially stable, and with extended family and/or friends to draw on for support. Research shows that in contexts of social disadvantage(e.g., homelessness and poverty, mental health and substance use concerns, racism and discrimination), social and community workers can become 'defacto' family and provide caregiving support at the end of life. Yet, there is little known about the grief and bereavement experiences of this worker group.</p><p><strong>Methods: </strong>This study aimed to review the available literature on the experiences of grief and bereavement among workers working with people experiencing social disadvantage. A rapid scoping review was conducted following the JBI scoping review methodology. Six sources (Medline, CINAHL, APA PsycInfo, Web of Science Core Collection, Sociological Abstracts, and Social Work Abstracts) were searched to identify relevant articles published until June 30th, 2023. From the systematic search and screening process, 9 studies met the eligibility criteria and were selected for the analysis.</p><p><strong>Results: </strong>Nine studies were included in this review that employed various qualitative approaches. Three main themes emerged from the narrative synthesis and thematic analysis: (1) Working in contexts of inequities, (2) Distress and its attributing factors, (3) Support needs and strategies.</p><p><strong>Conclusions: </strong>Caring for socially disadvantaged individuals poses unique challenges, compounded by repeated loss, premature deaths, and societal stigma. Social and community service workers lack formal recognition for their pivotal palliative care role, necessitating organizational support, palliative education, and collective responses to address their unmet grief and bereavement needs. Further research is essential.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"25"},"PeriodicalIF":2.5,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11776191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143068940","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}