Palliative Care and Social Practice最新文献

{"title":"\"Backlash!\"? A qualitative exploration of hospice palliative care staff's ongoing experiences of \"living with covid\".","authors":"Rebecca Evans, John MacArtney","doi":"10.1177/26323524241283064","DOIUrl":"10.1177/26323524241283064","url":null,"abstract":"<p><strong>Background: </strong>\"Living with covid\" has meant that the SARS-CoV-2 virus has become a background concern for many in the United Kingdom. However, people with terminal conditions remain some of those at higher risk of Covid-19 affecting the quality-of-life left, as well as the amount of life. Little is known about how staff manage the ongoing risks and challenges-to themselves and those they seek to support-when providing palliative care in the context of an airborne transmissible virus.</p><p><strong>Objective: </strong>To explore the experiences of UK hospice staff of \"living with covid\" to identify how Covid-19 continues to affect their work and well-being.</p><p><strong>Design: </strong>An interpretivist qualitative interview study.</p><p><strong>Methods: </strong>Reflexive thematic analysis of semi-structured online interviews with 12 staff recruited from three hospices in the West Midlands, UK.</p><p><strong>Results: </strong>We explored how participants' accounts of \"living with covid\" included several ambivalences: Participants not only sought to assert the importance of not forgetting that time but also wished to \"move-on.\" This included moving Covid-19 to the \"background\" through embedding systemic adaptions and lessons learnt, while also recognizing that they had to address issues relating to Covid-19 \"case-by-case.\" Finally, participants' wish to move-on and a mostly reactive approach to mitigations meant that they were unable to meaningfully reconcile how asymptomatic transmission promotes patients' quality-of-life left.</p><p><strong>Conclusion: </strong>Recollections of the difficulties of the Covid-19 public health emergency were part of a \"backlash\" to any future consideration of mitigations for airborne transmissible viruses and helped justify a \"living with (getting) covid\" approach. However, this also created uncertainty of how best to support patients who are vulnerable to having the quality and amount of life left compromised by viral infection. The pandemic has brought renewed impetus to re-examine hospice palliative care's ideals and practices in the context of airborne transmissible viruses.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11452853/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142381873","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 social work contribution in end-of-life care: incorporating critical spirituality.","authors":"Fiona Gardner","doi":"10.1177/26323524241282683","DOIUrl":"https://doi.org/10.1177/26323524241282683","url":null,"abstract":"<p><p>This article outlines how a framework for critical spirituality incorporated into a social work perspective, can contribute to work in end-of-life care. This is based on my experience of working in interdisciplinary teams, including pastoral care workers or chaplains, nurses, doctors, a range of carers and other allied health professionals. Traditionally, social workers have focused on the holistic well-being of the dying person and their families but tended not to actively include the spiritual. However, there is increased recognition in social work of the value of integrating critical spirituality: understanding the person's own sense of meaning and the social assumptions that might influence how this can be expressed. This might mean working with individuals and families on understanding how societal expectations of the dying process are undermining the person's desire to die in a particular way. To do this, workers must themselves recognise their own internalised societal assumptions and be willing to challenge these. The article explores the potential value of how such a social work approach can integrate critical, postmodern, green and relational theories as well as indigenous worldviews with key qualities of practice such as humility, deep listening and waiting, and the ability to be critically reflective. Key ideas are used to help focus practice and the inclusion of critical spirituality. These include (1) exploring the influence of the person's history and social context; (2) the value of particular relationships and networks, including community and environmental connections and activities and processes that are an intrinsic aspect of the person's well-being; (3) challenging workers to be critically and reflectively aware of their own assumptions and values to ensure the dying person can truly express their preferences related to death and dying. Examples from my experience are used to illuminate how such perspectives can be actively included in practice across professional boundaries to shift perceptions of 'how things are done here' to what can be more life enhancing for those in palliative care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11457244/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394024","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 Café conversations: evaluating the educational potential for university students in palliative care teaching.","authors":"Ignacio Borque, Elena Oliete, María Arantzamendi, Carlos Centeno","doi":"10.1177/26323524241273490","DOIUrl":"10.1177/26323524241273490","url":null,"abstract":"<p><strong>Background: </strong>Discussing death, particularly among future healthcare professionals, remains a challenge. The \"Death Café\" initiative offers a relaxed setting for such conversations, and this study investigates its educational potential for medical students.</p><p><strong>Objectives: </strong>To assess the effectiveness of \"Death Café\" as an educational tool for medical students in palliative care, and to understand students' perceptions and reflections on death and end-of-life topics post-participation.</p><p><strong>Design: </strong>An exploratory qualitative design was employed, analyzing reflections submitted by medical students following voluntary participation in a Death Café session.</p><p><strong>Methods: </strong>Medical students from a course on palliative care participated in the \"Death Café,\" a structured yet informal discussion about death in a relaxed café setting. Subsequently, participants submitted written reflections on their experiences. These reflections were analyzed using a thematic analysis method, identifying emerging themes related to the students' perceptions of death, the event, and its impact on their future medical practice.</p><p><strong>Results: </strong>Forty-two students attended the Death Café. Twenty-one reflections were collected from 29 medical students who participated. Most students found the \"Death Café\" environment conducive to open conversations about death. Key themes included recognizing the fragility of life, the role of medical professionals in end-of-life care, and the personal and professional growth derived from such reflections. The students also highlighted the transformative nature of the event, shifting from discussing death in general to pondering on their roles as future healthcare professionals. Positive feedback indicated the absence of negative comments about the activity, with suggestions provided for future iterations.</p><p><strong>Conclusion: </strong>The \"Death Café\" serves as an innovative pedagogical approach to medical education, particularly in palliative care teaching. It offers students a platform for sincere dialogue on death and reinforces the significance of integrating innovative methods in medical training. This initiative not only enriches personal understanding but also emphasizes the commitment to holistic patient care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11503842/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142509741","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":"Re-living trauma near death: an integrative review using Grounded Theory narrative analysis.","authors":"Nikki Johnston, Michael Chapman, Jo Gibson, Catherine Paterson, Murray Turner, Karen Strickland, Wai-Man Liu, Christine Phillips, Kasia Bail","doi":"10.1177/26323524241277851","DOIUrl":"https://doi.org/10.1177/26323524241277851","url":null,"abstract":"<p><strong>Background: </strong>Symptoms of emotional and physical stress near death may be related to previous experiences of trauma.</p><p><strong>Objective: </strong>To investigate current evidence regarding the following: (1) Is previous trauma identified in people who are dying, and if so, how? (2) How is previous trauma associated with the experience of death/dying in people with or without cognitive impairment? and (3) What palliative care interventions are available to people with previous trauma at the end of life?</p><p><strong>Design: </strong>This integrative review was conducted per Whittemore and Knafl's guidelines, which involves a stepped approach, specifically (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis and (5) presentation.</p><p><strong>Methods: </strong>This integrative review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Electronic databases were searched in August 2021 and updated in August 2023. The articles were quality appraised, and narrative data were analysed using Grounded Theory (GT).</p><p><strong>Results: </strong>Of 1310 studies screened, 11 met the inclusion criteria (four qualitative and seven quantitative) conducted in Australia, Canada, Japan and the United States; and American studies accounted for 7/11 studies. Eight were focused on war veterans. Descriptive studies accounted for the majority, with only two publications testing interventions. Re-living trauma near death has additional features to a diagnosis of post-traumatic stress disorder alone, such as physical symptoms of uncontrolled, unexplained acute pain and this distress was reported in the last weeks of life.</p><p><strong>Conclusion: </strong>This study proposes that re-living trauma near death is a recognisable phenomenon with physical and psychological impacts that can be ameliorated with improved clinical knowledge and appropriate management as a new GT. Further research is needed to enable past trauma identification at the end of life, and trauma-informed safe interventions at the end of life are an urgent need.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11439169/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355690","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":"How to support caregivers in general practice: development of the Caregiver Care Model.","authors":"Anna Mygind, Sara Marie Hebsgaard Offersen, Mai-Britt Guldin, Kaj S Christensen, Mette Kjærgaard Nielsen","doi":"10.1177/26323524241272103","DOIUrl":"https://doi.org/10.1177/26323524241272103","url":null,"abstract":"<p><strong>Background: </strong>Caring for a family member can be demanding, particularly when caregivers experience profound distress. Supportive interventions may help prevent mental and physical illness in the caregiver. General practice plays a key role by regularly engaging with patients and caregivers, thereby being able to identify their support needs, offer talk therapy and refer to care initiatives.</p><p><strong>Objective: </strong>This study aimed to develop and pilot-test the Caregiver Care Model to mitigate grief reactions among caregivers in general practice.</p><p><strong>Design: </strong>A participatory intervention development study.</p><p><strong>Methods: </strong>A prototype was developed in a workshop with healthcare professionals. The prototype was refined based on a pilot-test among 40 caregivers from 5 general practice clinics and a workshop with general practitioners. The data were obtained from workshops, feedback questionnaires completed by healthcare professionals, and interviews with caregivers and general practitioners. The analysis focused on model development and mechanisms of impact.</p><p><strong>Results: </strong>The prototype was refined by focusing the dialogue questionnaire, minimising the grief facilitation tools and expanding the target group. The prototype seemed to accommodate the needs among caregivers by acknowledging their situation. The final model includes up to seven caregiver consultations in general practice. A dialogue questionnaire filled in by the caregiver serves as a fixed starting point and preparation for the first consultation. If needed, talk therapy in general practice or referrals to other services are used.</p><p><strong>Conclusion: </strong>The model offers promising support for caregivers. Its flexible structure allows for customisation. The viability of the model should be further tested.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437575/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355689","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":"Developing and evaluating Compassionate Workplace Programs to promote health and wellbeing around serious illness, dying and loss in the workplace (EU-CoWork): a transdisciplinary, cross-national research project.","authors":"Steven Vanderstichelen, Deborah De Moortel, Karina Nielsen, Klaus Wegleitner, Malin Eneslätt, Tiziana Sardiello, Daniela Martos, Jennifer Webster, Irene Nikandrou, Ellen Delvaux, Carol Tishelman, Joachim Cohen","doi":"10.1177/26323524241281070","DOIUrl":"https://doi.org/10.1177/26323524241281070","url":null,"abstract":"<p><strong>Background: </strong>Most employees will experience serious illness, caregiving, dying and loss (End-of-Life (EoL) experiences) at multiple points throughout their working lives. These experiences impact affected employees but also their colleagues in terms of health and wellbeing, and the workplace as a whole in terms of workplace safety, productivity and labour relations. The impact of EoL experiences on employees means that workplaces are called to play a more active role in providing support for EoL experiences.</p><p><strong>Aim: </strong>To describe how the EU-CoWork (2024-2028) project addresses its main aims to (1) create Compassionate Workplace cultures, practices and policies and improve health and wellbeing for employees dealing with EoL experiences in different national work contexts in Europe; (2) describe and evaluate the process of co-creation and implementation of Compassionate Workplace Programs (CWPs) and how these influence the programs' outcomes.</p><p><strong>Design: </strong>EU-CoWork employs a facilitated and co-creative Developmental Evaluation approach to the development of 12 tailored CWPs across four European countries (Belgium, Austria, Sweden and Greece).</p><p><strong>Methods: </strong>To evaluate the outcomes and processes leading to these outcomes, a mixed-methods Realist Evaluation methodology is applied, formulating and testing Context-Mechanism-Outcomes configurations and combining longitudinal quantitative and qualitative data collections.</p><p><strong>Results: </strong>EU-CoWork will generate evidence to support an expanded model of occupational health and safety risk factors sensitive to the specific challenges related to employees' EoL experiences. In doing so, several challenges will have to be navigated: involving employees with EoL experiences while avoiding overburdening them, avoiding tokenistic engagement, managing power differentials, balancing the need for scientific rigour with the flexibility required in co-creation, reconciling different epistemologies and disciplinary traditions and organisational resistance to change.</p><p><strong>Conclusion: </strong>There are potential long-lasting broader societal impacts through the stimulation of open discourse on EoL topics, the reconciliation of work and care, and changes in gendered work and care patterns.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11468009/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476749","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":"Effects of intervention by trained care managers on advance care planning engagement among long-term care service users in Japan: a pre- and post-pilot comparative study across multiple institutions.","authors":"Shozo Okochi, Kyoko Oshiro, Noriyasu Takeuchi, Mariko Miyamichi, Tomoe Nakamura, Terumi Matsushima, Masako Okada, Yoshimi Kudo, Takehiro Ishiyama, Tomoyasu Kinoshita, Hideki Kojima, Mitsunori Nishikawa","doi":"10.1177/26323524241281065","DOIUrl":"10.1177/26323524241281065","url":null,"abstract":"<p><strong>Background: </strong>A majority of Japanese care managers lack medical qualifications, feel uncomfortable discussing future medical choices and believe that it is not their responsibility.</p><p><strong>Objectives: </strong>As there is a paucity of care manager intervention studies, this study aimed to measure changes in advance care planning engagement among long-term care service users before and after intervention by care managers with communication training.</p><p><strong>Design: </strong>A multi-institutional pre- and post-pilot comparative study.</p><p><strong>Methods: </strong>A multi-institutional pre- and post-trial study was performed from August 2022 to January 2023 (trial ID: 000048573). Nine trained care managers communicated with 30 long-term care service users regarding advance care planning, and the pre- and post-trial advance care planning engagement scores were compared. Additionally, the post-trial impact of events score was investigated.</p><p><strong>Results: </strong>All 30 long-term care service users completed the trial. The advance care planning engagement score increased after the trial. The sample size was considered adequate for future trials. Years of experience as a care manager, impact of events score, and having a clinical frailty scale of ⩾5 were significant explanatory variables that affected the objective variable of the difference between pre- and post-trial advance care planning engagement score.</p><p><strong>Conclusion: </strong>This study on the impact of advance care planning communication interventions by trained care managers offers insights into determining appropriate sample sizes and identifying factors influencing future research outcomes. Advance care planning engagement of long-term care service users might change before and after intervention by care managers through advance care planning communication.</p><p><strong>Trial registration: </strong>University Hospital Medical Information (UMIN) Network Trial ID: 000048573.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11440549/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355688","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":"Parents' and healthcare professionals' experiences with the content of an individual care plan for pediatric palliative care: a mixed-method study.","authors":"Chantal Y Joren, Marijke C Kars, Leontien C M Kremer, Suzanne C Hofman, Hester Rippen-Wagner, Ria Slingerland-Blom, Chantal van der Velden, Meggi Schuiling-Otten, A A Eduard Verhagen, Judith L Aris-Meijer","doi":"10.1177/26323524241277572","DOIUrl":"10.1177/26323524241277572","url":null,"abstract":"<p><strong>Background: </strong>The Individual Care Plan (ICP) for pediatric palliative care translates the general guideline recommendations into a personalized plan for the child. Various documents exist in pediatrics globally, aimed at facilitating anticipatory care or coordinating end-of-life care. The ICP aims both, but user experiences have not been studied post-development.</p><p><strong>Objective: </strong>The overall aim is to enhance knowledge and understanding of the content of the ICP from the perspectives of parents and healthcare professionals (HCPs).</p><p><strong>Design and method: </strong>We conducted a mixed-method study using a convergent parallel design consisting of questionnaires and individual and focus group interviews among parents and HCPs having user experience with the ICP. The questionnaire and interview data were analyzed separately. Quantitative data were descriptively analyzed using mean, ±SD, and median. Qualitative data were thematically analyzed. A narrative approach and joint display were used to describe the results.</p><p><strong>Results: </strong>In total, 27 parents and 161 HCPs participated. Overall, the content of the ICP was seen as important and complete, but changes and additions were called for on language, structure, and content. The chapter on the needs and wishes of child and parents was considered most important. HCPs would like to see this chapter expanded to incorporate more advance care planning outcomes, and parents wished for this chapter to reflect better who their child is. HCPs mentioned missing a chapter for palliative sedation, mainly to guide other HCPs. The ICP was appraised as not user-friendly and might possibly improve by making the ICP available in a secure digital environment.</p><p><strong>Conclusion: </strong>To meet the needs of parents and HCPs considering importance and completeness of the content of the ICP and its user-friendliness, changes are necessary in the content of the ICP, and preferably the ICP should be made digitally available. Although various documents exist globally to facilitate anticipatory care or coordinating end-of-life care, it appears that the combination of describing the values and preferences of the child and parents, along with medical decisions and life-sustaining treatments, makes the ICP a unique and comprehensive care plan.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11418305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142308712","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":"Progressing the Death Literacy Index: the development of a revised version (DLI-R) and a short format (DLI-9).","authors":"Kerrie Noonan, Andrea Grindrod, Sumina Shrestha, Sora Lee, Rosemary Leonard, Therese Johansson","doi":"10.1177/26323524241274806","DOIUrl":"10.1177/26323524241274806","url":null,"abstract":"<p><strong>Background: </strong>Since the development of the Death Literacy Index (DLI) in 2019 in Australia, subsequent internationally validated versions have prompted rewording and refinement of the original survey questions. Use of the DLI in the community has also resulted in requests for a short format.</p><p><strong>Objectives: </strong>To examine and report on the psychometric properties of a revised version of the DLI-R and develop a short format DLI-9.</p><p><strong>Design: </strong>A cross-sectional national survey was conducted for the validation of the revised DLI.</p><p><strong>Methods: </strong>The DLI items were revised by the research team using the international literature. DLI data were collected from a representative online non-probability panel of 1202 Australian adults, based on age, gender, and geographical location. Confirmatory factor analysis (CFA) was conducted to ensure the revised version (DLI-R) was consistent with the original. To develop a short format version of the DLI (DLI-9), items were first removed based on face validity, followed by an exploratory factor analysis (EFA) and CFA. The internal reliability of the DLI-R and the DLI-9 was assessed using Cronbach's alpha. The intraclass correlation coefficient was calculated to examine the inter-rater reliability between the DLI-R and DLI-9.</p><p><strong>Results: </strong>Twenty-four questions in the DLI were reworded for clarity. A CFA on the 29 items of this modified version of the DLI indicated a good model fit (Tucker-Lewis Index (TLI): 0.93; Comparative Fit Index (CFI): 0.93; root mean square of approximation (RMSEA): 0.06; standardized root mean residual (SRMR): 0.06), with six latent variables and an underlying latent variable \"death literacy.\" For the DLI-9, an EFA identified a nine-item, two-factor structure model (DLI-9). A subsequent CFA in a separate sample demonstrated a good model fit for the DLI-9 (TLI: 0.92; CFI: 0.94; RMSEA: 0.089; SRMR: 0.07). Excellent inter-rater reliability (0.98) was observed between DLI-9 and DLI-R. Cronbach's alpha coefficients for DLI-R scales and subscales and the DLI-9 all exceeded 0.8, indicating high internal consistency.</p><p><strong>Conclusion: </strong>The DLI-R and the DLI-9 were found to have acceptable psychometric properties. The development of a shorter version of the DLI provides a valid measure of overall death literacy.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11418362/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142308713","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":"Understanding the needs for support and coping strategies in grief following the loss of a significant other: insights from a cross-sectional survey in Sweden.","authors":"Inger Benkel, Johanna Skoglund, Daniel Enstedt, Ylva Hård Af Segerstad, Joakim Öhlén, Stina Nyblom","doi":"10.1177/26323524241275699","DOIUrl":"https://doi.org/10.1177/26323524241275699","url":null,"abstract":"<p><strong>Background: </strong>Grief has previously been described in pathological terms, characterized by several stages. In the past three decades, new perspectives on grief as a reaction to the loss of a significant other have emerged. It shows that grief is an individual process based on circumstances surrounding the death and the bereaved person's life situation, rather than being predetermined.</p><p><strong>Objective: </strong>The aim of the study was to show how grief is perceived by people who have lost a significant other, and it focuses on bereavement support, how the death affects the bereaved person's living conditions, how the bereaved person deals with grief, and if grief is expressed differently depending on whether it was an expected death (ED) or an unexpected death (UED).</p><p><strong>Design: </strong>A cross-sectional design was used with data collected anonymously using an online survey with semi-structured answers and options for participants to add their own comments, and it was analyzed descriptively.</p><p><strong>Result: </strong>Support in grief was mainly given by family and friends, and the perceived need was primarily for emotional support or emotional support combined with practical support, and to a greater extent for UEDs and women. For some bereaved persons, health caregivers and religious institutions provided support outside their own network. Grief can affect how people socialize with others and change social relationships. People can deal with grief in social as well as religious ways in the company of friends, through everyday conversations, spending time in nature, and having a spiritual outlook on life, and with the help of pets.</p><p><strong>Conclusion: </strong>The results can contribute to an increased understanding of grief after the loss of a significant other and how grief affects the bereaved person's life depending on whether it is an ED or a UED. There was a difference between the genders, with women perceiving a need for and receiving different forms of support and to a greater extent than men.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11382244/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142297491","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}