Palliative Care and Social Practice最新文献

{"title":"Navigating life with heart failure: Patient and caregiver perspectives of the culturally adapted Educate, Nurture, Advise, Before Life Ends health coaching programme.","authors":"Yeo Su-Min, Alston Ng, Shirlyn Hui Shan Neo","doi":"10.1177/26323524261435000","DOIUrl":"https://doi.org/10.1177/26323524261435000","url":null,"abstract":"<p><strong>Background: </strong>Heart failure (HF) imposes substantial physical, psychological, and social burdens on patients and caregivers. While the Educate, Nurture, Advise, Before Life Ends (ENABLE) programme has demonstrated potential benefits for HF populations, existing scholarship has yet to clarify how and to what extent health coaching interventions like ENABLE meet the expectations and needs of patients with HF and their caregivers.</p><p><strong>Objectives: </strong>To explore the experiences of patients with HF and caregivers who participated in a culturally adapted ENABLE programme in Singapore and to identify perceived benefits and persisting gaps to inform the design of future health coaching interventions.</p><p><strong>Design: </strong>A qualitative study involving in-depth individual or dyadic interviews with patients and caregivers who completed the ENABLE programme at the National Heart Centre Singapore (NHCS).</p><p><strong>Methods: </strong>Participants were drawn from a wait-list randomised controlled trial of ENABLE at NHCS. Purposive sampling ensured diversity in age, illness severity, and study arm. Interviews were audio-recorded, transcribed verbatim, and analysed using Braun and Clarke's reflexive thematic analysis approach.</p><p><strong>Results: </strong>Fourteen participants were interviewed. They described initial disorientation arising from unmet informational needs and uncertainty about how to live meaningfully with HF. Health coaching mitigated this by providing personalised information and consistent access to professional support, fostering a sense of control and security. Nonetheless, participants expressed a need for more concrete lifestyle guidance and emotional support, noting that education alone was insufficient to address psychological and existential distress. Some struggled to reconcile hope for recovery with awareness of decline and mortality.</p><p><strong>Conclusion: </strong>The ENABLE programme reduced disorientation and enhanced reassurance through personalised and relational support. Future interventions should integrate actionable self-management guidance with psychosocial and existential support to address the intertwined informational, emotional, and meaning-related needs of people living with HF.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov Identifier: NCT05211882.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261435000"},"PeriodicalIF":2.2,"publicationDate":"2026-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13051180/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147634460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A caring safety net or a broken shelter-Relatives' experiences of specialized palliative home care: A national registry study.","authors":"Annika Söderman, Fredrik Alm, Karin Blomberg, Helena Sjölin, Camilla Wall, Elisabeth Bergdahl","doi":"10.1177/26323524261434624","DOIUrl":"https://doi.org/10.1177/26323524261434624","url":null,"abstract":"<p><strong>Background: </strong>Cancer and circulatory diseases are overrepresented among the annual deaths in Sweden. Specialized palliative care (SPC) is considered complex, especially by cancer patients who have undergone long-term treatment. Relatives caring for a person with cancer within the home are faced with many demanding tasks.</p><p><strong>Purpose: </strong>To describe and map relatives' experiences of the end-of-life care given in specialized palliative home care from a Swedish national perspective.</p><p><strong>Methods: </strong>A register study was conducted with a mixed-method design using qualitative and quantitative descriptive data from relatives (<i>n</i> = 563). Reflexive thematic analysis was used for the qualitative data, followed by a quantifying process inspired by Sandelowski.</p><p><strong>Findings: </strong>Two main themes were identified, with related themes and subthemes: \"Home-a safe, dignified, and good place for dying\" and \"Home-a challenging, lonely, and unworthy place for dying.\" As a place of dying during SPC, home provided both security and challenging events. It offered security for the family and upheld their dignity with the presence and support of competent healthcare professionals (HCPs). Conversely, challenging events emphasized how the relatives were unprepared for their loved one's death and struggled to cope with the end-of-life situation. Some relatives felt that too much of the responsibility was left to them. However, the quantitative data showed that 99.1% of the relatives knew where to find urgent help during the last week of life, and the quantified qualitative data showed that HCPs were often available and supportive.</p><p><strong>Conclusion: </strong>Specialized palliative home care must strive to minimize challenging events that relatives experience during their loved one's end of life and reinforce protective factors such as the presence of HCPs. As the end-of-life period is challenging for families, adequate support and competencies must be secured. Otherwise, there is a risk of increased family suffering and relatives having difficulties with grief after the death.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261434624"},"PeriodicalIF":2.2,"publicationDate":"2026-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13051113/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147634369","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact of the COVID-19 pandemic on palliative care services in the Cape Metro District of South Africa.","authors":"Juanita O Arendse, Virginia Zweigenthal, Liz Gwyther","doi":"10.1177/26323524261435131","DOIUrl":"https://doi.org/10.1177/26323524261435131","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic exacerbated the need for palliative care (PC) and exposed gaps in PC provision in South Africa's already-strained healthcare system. PC is a neglected yet core component of South Africa's public healthcare sector.</p><p><strong>Aim and objectives: </strong>The study aimed to describe the impact of the COVID-19 pandemic on PC services in one healthcare district of South Africa, the Cape Metro Health District. Specifically, the study objectives were to describe the PC response to the COVID-19 pandemic, and healthcare managers' perceptions of PC provision during the pandemic.</p><p><strong>Methods: </strong>Data for the study were derived from a desktop analysis of documents relating to PC service delivery over the pandemic, and from focus group discussions held with 19 senior healthcare managers.</p><p><strong>Results: </strong>The COVID-19 pandemic expedited integration of PC services into the health system and raised awareness of the importance of PC service delivery. It facilitated the allocation of increased resources (financial, infrastructural, and human resources) and enabled the rapid development of training material, in situ support for clinicians and the development of patient referral mechanisms. It was a stimulus for many people to learn about PC and influenced the perspectives of those working in healthcare, including managers, many of whom experienced the loss of family members or friends, foregrounding the importance of PC.</p><p><strong>Conclusion: </strong>Planning for future pandemics needs to include recognition of and ongoing care for palliative care patients and factoring in an increased demand.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261435131"},"PeriodicalIF":2.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13049345/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147623988","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Burden and quality of life among caregivers of children diagnosed with cancer at Kenyatta National Hospital, Kenya: A cross-sectional study.","authors":"Doris W Machaki, Albanus Mutisya, Jostine Mutinda, Sherry Oluchina, Samwel Maina Gatimu","doi":"10.1177/26323524261434998","DOIUrl":"https://doi.org/10.1177/26323524261434998","url":null,"abstract":"<p><strong>Background: </strong>With projections indicating an increase in childhood cancer diagnoses by 2050, family members in Kenya frequently assume extensive caregiving responsibilities. These duties are demanding and may adversely impact caregivers' quality of life. In Kenya, caregivers manage both clinical and non-clinical tasks; however, there is a paucity of evidence regarding the extent of caregiver burden and its effect on their well-being. As cancer incidence rises, this data gap impedes the development of effective interventions to support caregivers and improve cancer care outcomes across the country.</p><p><strong>Objective: </strong>This study aimed to assess the burden and quality of life of caregivers at a national referral hospital in Kenya.</p><p><strong>Methods: </strong>This study employed a cross-sectional descriptive design involving 124 conveniently sampled participants. The Caregivers' Quality of Life Index-Cancer and Zarit Caregiver Burden Interview tools were used to collect data on the caregivers' quality of life and burden. Descriptive analysis was performed to generate frequencies, Pearson's chi-square was used to assess the association between variables, and multiple linear regression was used to assess the association between variables.</p><p><strong>Results: </strong>Of the 124 participants, 91.9% were mothers aged 20-40 with secondary education, while most of the children (57.3%) were male, half were aged 1-5 years, and 47.6% had blood cancers. The average quality of life and burden scores were 83.38 (SD: 21.04) and 41.43 (SD: 17.52). Employment significantly reduces caregivers' burden (<i>B</i> = -10.96, <i>p</i> = 0.001) and quality of life (<i>B</i> = -13.04, <i>p</i> = 0.001) while combined treatment significantly increases caregivers' burden (<i>B</i> = 8.06, <i>p</i> = 0.049).</p><p><strong>Conclusion: </strong>The burden of care on caregivers of children with cancer is significant and has a negative impact on their quality of life. To help reduce this burden and enhance caregivers well-being, we recommended interventions such as flexible work arrangements, paid family leave, psychoeducation, and accessible respite care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261434998"},"PeriodicalIF":2.2,"publicationDate":"2026-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13039630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Taboo, safe spaces, and death sociability: A comparative ethnography of two compassionate communities.","authors":"Émilie Lessard, Isabelle Marcoux, Serge Daneault, Lise Jean, Cynthia Lapointe, Dale Weil, Ghislaine Rouly, Libby Sallnow, Allan Kellehear, Antoine Boivin","doi":"10.1177/26323524261434628","DOIUrl":"https://doi.org/10.1177/26323524261434628","url":null,"abstract":"<p><strong>Background: </strong>Compassionate communities are a key public health palliative care strategy for addressing the social determinants of death. However, their evaluations often prioritize health indicators, overlooking the intended social and cultural transformations that are central to this social model. This study addresses this research gap by analyzing the transformative outcomes emerging from two distinct community initiatives.</p><p><strong>Methods: </strong>Building on our prior analysis of community engagement processes, this comparative ethnographic analysis examines the transformative outcomes of two distinct compassionate communities in Montréal, Canada (2021-2023). Data from 84 h of participant observation and 26 semi-structured interviews with 22 participants were analyzed to identify the social and cultural changes resulting from the community-led and institutionally-led models.</p><p><strong>Results: </strong>Findings demonstrate that local contexts act as active forces shaping which social determinants of death are prioritized, specifically overdose stigma in Centre-Sud and fraud-induced social death in the West Island, thereby dictating unique engagement trajectories toward transformation. A universal outcome was the creation of safe spaces to break the death taboo, which addressed the mismatch between private loss and the lack of collective social scripts. This facilitated the emergence of \"death sociability\": a reciprocal mechanism for experiential learning grounded in shared recognition of human finitude, which actively builds cultural capital in its embodied (new skills and language), objectified (rituals and shared narratives), and institutionalized (formal recognition of community practices) forms.</p><p><strong>Conclusion: </strong>Death sociability is a core mechanism through which compassionate communities achieve transformative change, addressing both biological and social mortalities. As an empirically grounded concept, it offers a novel theoretical lens for future research to track social and cultural impacts beyond health metrics. Therefore, supporting the creation of safe spaces where death sociability can thrive is crucial for building the cultural capital needed to advance equity in social determinants of death.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261434628"},"PeriodicalIF":2.2,"publicationDate":"2026-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13039558/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The patient reported transformation of identity and voice in life-limiting illness.","authors":"Nqobile Sikhosana, Ritin Fernandez, Lorna Moxham","doi":"10.1177/26323524261434251","DOIUrl":"https://doi.org/10.1177/26323524261434251","url":null,"abstract":"<p><strong>Background: </strong>Individuals facing life-limiting illnesses undergo a profound transformation that encompasses significant physiological changes, in the level of medical care received, and a shift in overall goals of care. This transformation is irreversible and involuntary. However, individuals living with mental health conditions and life-limiting illnesses are not able to go through transformation due to diagnostic overshadowing. Previous research has examined the transformations experienced by caregivers in the context of spinal cord injuries, as well as by professional caregivers in palliative care, highlighting the complexities of their roles and the emotional adjustments they undergo. However, a notable gap in the literature exists regarding the transformation of individuals themselves who are confronting life-limiting illnesses.</p><p><strong>Objectives: </strong>This study explored the physical and psychological transformations of individuals living with a Life-Limiting Illness, focusing on how they interpret and understand these changes.</p><p><strong>Design: </strong>To explore this transformation, this study employed an interpretive hermeneutic phenomenological design, guided by an interpretivist-constructionist theoretical framework.</p><p><strong>Methods: </strong>Fourteen qualitative interviews were conducted both face-to-face and via Zoom.</p><p><strong>Results: </strong>This study reveals that the illness trajectory of individuals living with a life-limiting condition consists of three stages, which can be metaphorically described as follows: (1) <i>Chrysalis formation</i>: This stage represents the muted voice, where the experiences of individuals with life-limiting illnesses are expressed and supported through the medical interventions provided by healthcare professionals. (2) <i>Breakdown of the chrysalis</i>: This stage is characterised by unsuccessful medical interventions and subsequent physical deterioration of the individual's health. (3) <i>Emerging from the chrysalis</i>: In this final stage, the individual forms a new identity and finds new meaning in life as a result of living with a life-limiting illness.</p><p><strong>Conclusion: </strong>The voice of persons with life-limiting illness is not stagnant; it undergoes various transformations at each stage of the illness trajectory. An understanding of this transformation process, along with the new identities that emerge at each stage, is crucial for designing and delivering palliative care services that effectively and timeously address the unique physical, emotional, and psychological challenges individuals encounter during each stage of their transformative journey.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261434251"},"PeriodicalIF":2.2,"publicationDate":"2026-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13039571/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610119","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Clinical profile and challenges of midazolam-based palliative sedation for terminal cancer patients: A retrospective observational study from a tertiary medical center in mainland China.","authors":"Junhua Guo, Jiang Lu, Yazhen Zhong, Heran Zhou","doi":"10.1177/26323524261436494","DOIUrl":"https://doi.org/10.1177/26323524261436494","url":null,"abstract":"<p><strong>Background: </strong>Palliative sedation is a key component of palliative care for end-stage cancer patients with refractory symptoms. In mainland China, midazolam-based titrated palliative sedation is rarely used clinically, with limited data and studies reported.</p><p><strong>Aim: </strong>To illustrate the development of clinical practice patterns for midazolam-based palliative sedation in advanced cancer patients in mainland China, identify clinical regularities, and summarize clinical experience to promote the administration of palliative sedation for terminally ill cancer patients in mainland China.</p><p><strong>Design: </strong>A retrospective observational study was conducted using clinical records of terminal cancer patients who underwent midazolam-based palliative sedation from 2016 to 2025.</p><p><strong>Setting/participants: </strong>Terminal cancer patients who underwent palliative sedation in the oncology ward of Hangzhou Hospital of Traditional Chinese Medicine, a tertiary medical center in Eastern mainland China.</p><p><strong>Results: </strong>The overall implementation rate of palliative sedation in terminal cancer patients was 7.98% (55/689). Refractory dyspnea was the primary indication for sedation (47.3%). The proportion of patients receiving adequate sedation was significantly higher in the titrated group than in the non-titrated group (<i>p</i> < 0.001). The mean survival time of the 50 patients who received adequate sedation was 67.45 h. Among them, the mean survival time in the dyspnea subgroup (38.88 h) was significantly shorter than in the pain (125.42 h) and agitation (120.33 h) subgroups (<i>p</i> < 0.001). The mediation analysis further demonstrated that the indication for palliative sedation (presence or absence of dyspnea) fully mediated the association between the patient's disease diagnosis (presence or absence of lung cancer) and survival time. In this study, 66.7% of family members had never previously heard of palliative sedation, and their attitudes toward this therapy were quite ambivalent.</p><p><strong>Conclusion: </strong>Effective communication of palliative sedation helps improve family members' acceptance of this therapy. Patients with refractory dyspnea, especially lung cancer patients with this symptom (who may have more severe underlying disease), may have shorter survival times than those with agitation or pain. Rigorous pre-procedural risk communication with families is recommended before sedation, and close monitoring and assessment during sedation are essential for safety.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261436494"},"PeriodicalIF":2.2,"publicationDate":"2026-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13039612/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Temporal trends and predictors of inpatient palliative care in metastatic upper urinary tract carcinoma: An observational study.","authors":"Carolin Siech, Lukas Scheipner, Andrea Baudo, Mario de Angelis, Letizia Maria Ippolita Jannello, Francesco Di Bello, Fred Saad, Shahrokh F Shariat, Nicola Longo, Luca Carmignani, Ottavio de Cobelli, Sascha Ahyai, Alberto Briganti, Cristina Cano Garcia, Luis A Kluth, Felix K H Chun, Pierre I Karakiewicz","doi":"10.1177/26323524261416927","DOIUrl":"10.1177/26323524261416927","url":null,"abstract":"<p><strong>Background: </strong>Rates and patterns of inpatient palliative care (IPC) use in metastatic upper urinary tract carcinoma (mUTC) are largely unknown.</p><p><strong>Objectives: </strong>To assess temporal trends and predictors of IPC in patients with mUTC.</p><p><strong>Design: </strong>Relying on the National Inpatient Sample (2008-2019), we identified 3563 mUTC United States inpatients.</p><p><strong>Methods: </strong>Estimated annual percentage changes (EAPC) analyses as well as logistic regression models addressing IPC use were fitted. Subgroup analyses addressed IPC use according to the number and location of metastatic sites.</p><p><strong>Results: </strong>Of 3563 mUTC inpatients, 540 (15%) received IPC. Overall, the rate of IPC increased from 2 to 22% between 2008 and 2019 (EAPC +10%). In subgroup analyses, the highest increase in IPC use was observed in patients with liver metastases (from 3 to 33%; EAPC + 11%), in patients with bone metastases (from 3 to 29%; EAPC: +10%), and in patients with three or more metastatic sites (from 0.5 to 31%; EAPC: 10%; all <i>p</i> ⩽ 0.003). In multivariable logistic regression models, liver metastases (odds ratio (OR) 1.91, 95% confidence interval (CI) 1.53-2.39), bone metastases (OR 1.83, 95% CI 1.46-2.28), and contemporary year of admission (OR 1.93, 1.57-2.38; all <i>p</i> < 0.001) independently predicted higher IPC rates. Limitations include the retrospective nature of the inpatient database.</p><p><strong>Conclusion: </strong>The IPC rate in mUTC was very low (15%). However, this rate increased to approximately 22% in 2019. The highest IPC rates were recorded in contemporary liver (33%), bone (29%), and three or more metastatic sites (31%) United States inpatients. Therefore, clinicians should be sensitized to early IPC use in mUTC patients in general as well as in other metastatic distribution patterns.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261416927"},"PeriodicalIF":2.2,"publicationDate":"2026-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13013996/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147522247","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Death literacy: Tensions between theory and practice.","authors":"Jennifer Rogerson, Daniella Holland-Hart, Michelle Edwards","doi":"10.1177/26323524261429985","DOIUrl":"10.1177/26323524261429985","url":null,"abstract":"<p><p>Death literacy is a burgeoning field in palliative care research and the social sciences, exploring people's knowledge, skills, experiential learning and social action as these pertain to death and dying. Death literacy is not described or advocated in UK policy or guidelines explicitly, yet this essay shows that it is mentioned implicitly, and these implicit definitions and uses are explored. In this critical essay, the authors draw on a series of examples from UK-based policy and guidelines to describe the ways death literacy is implicitly articulated in the material. In doing so, the essay draws attention to the ways death literacy is understood in policy and guidelines, the ways death and talking about death are framed, and the ways that nuanced contextual accounts of death literacy are critical to developing this branch of study further. By looking at the ways death literacy is framed in policy through the lenses of time, taboo and how death is discussed (or not), this essay develops an account of the tensions and gaps between theory and practice. Recommendations to address these gaps include discussions centred on the timing of conversations about death and dying, and establishing a benchmark for what is discussed and constitutes 'death literacy' in public discourse. As such, the essay contributes to the growing body of literature on death literacy in the United Kingdom.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261429985"},"PeriodicalIF":2.2,"publicationDate":"2026-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13013998/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147522249","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy.","authors":"Pia Zinck Drivsholm, Charlotte Handberg","doi":"10.1177/26323524261430769","DOIUrl":"10.1177/26323524261430769","url":null,"abstract":"<p><strong>Aims and objectives: </strong>To investigate reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy (DMD) to target future rehabilitation.</p><p><strong>Background: </strong>Adults with DMD have a short life expectancy with a mean age of death at 26.8 years. Despite this, palliative rehabilitation is sparsely mentioned in standards of care. Relatives and healthcare professionals seem to find it difficult to talk about the future and future care with people living with a life-threatening disease.</p><p><strong>Design: </strong>The design of the study was qualitative using the Interpretive Description Methodology and the salutogenic theory of Sense of Coherence (SOC) as the theoretical framework.</p><p><strong>Methods: </strong>The method was individual semi-structured interviews with 13 adult men with DMD. The interviews were conducted from February to March 2025.</p><p><strong>Results: </strong>Navigating life with DMD was considered a condition of life, and being able to accept and adapt to uncertainties were effective coping mechanisms affecting the participants' overall SOC. Furthermore, living with a life-threatening disease was managed by living one day at a time, finding solutions, taking life as it comes, and getting the best out of it. Also, having dreams like everybody else, despite the uncertain future, was important. Finally, talking about future care felt strange to the participants, but it was easier if someone dared to ask directly. Timing and addressing individual needs were essential.</p><p><strong>Conclusion: </strong>Adults living with DMD appreciated the opportunity to talk about their wishes and needs for the future. Healthcare professionals are recommended to initiate conversations about biopsychosocial and existential issues, and palliative rehabilitation is recommended throughout the DMD lifespan with attention to individual needs, timing, and state of the disease.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261430769"},"PeriodicalIF":2.2,"publicationDate":"2026-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13009961/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147515341","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}