Palliative Care and Social Practice最新文献

{"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":"18 ","pages":"26323524241272103"},"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":"18 ","pages":"26323524241281070"},"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":"18 ","pages":"26323524241281065"},"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":"18 ","pages":"26323524241277572"},"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":"18 ","pages":"26323524241274806"},"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":"18 ","pages":"26323524241275699"},"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}

{"title":"Behaviours and psychological symptoms of childhood dementia: two cases of psychosocial interventions.","authors":"Mustafa Atee, Ineka Whiteman, Rebecca Lloyd, Thomas Morris","doi":"10.1177/26323524241273492","DOIUrl":"10.1177/26323524241273492","url":null,"abstract":"<p><p>Childhood dementias are a group of rare, fatal neurodegenerative disorders, characterised by global cognitive decline, loss of previously acquired developmental skills and behaviours and psychological symptoms of dementia (BPSD). Batten disease, or neuronal ceroid lipofuscinosis, and Sanfilippo syndrome, or mucopolysaccharidosis type III, are two of the more common forms of childhood dementia disorders worldwide. While psychosocial interventions are the best available therapeutic approach for BPSD management in adult-onset dementia, there is very limited literature or clinical experience in the context of childhood dementia. To address this gap, we conducted a descriptive case analysis of BPSD profiles, associated contributing factors and targeted psychosocial interventions in two cases with childhood dementia disorders (Sanfilippo syndrome and CLN3 (juvenile onset) Batten disease) who were referred to Dementia Support Australia, a national dementia behaviour support service in Australia. Primary BPSD identified in these disorders included physical and verbal aggression and irritability/lability. In these cases, contributing factors to the development of BPSD were not monolithic, encompassing pain, caregiver's approach and over or under-stimulation. Improvement in BPSD were observed using the Neuropsychiatric Inventory-Quesionnaire and globally noted as per the qualitative feedback reported by family and caregivers. Person-centred, multimodal psychosocial interventions were recognised as effective therapies in resolving BPSD in these cases. In conclusion, the case studies described the nature and presentation of BPSD in two common forms of childhood dementia and demonstrated the potential benefits of person-centred psychosocial interventions (delivered through national dementia-specific support programs) in alleviating BPSD such as irritability and aggression in these disorders.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241273492"},"PeriodicalIF":2.7,"publicationDate":"2024-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11378187/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142156239","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":"Community engagement in a seaside town: evaluation of Good Grief Weston festival.","authors":"James Robb, Olly Clabburn, Alison Bamford, Fiona Matthews, Karen Lee, Lin Toulcher, Polly Maxwell, Nina Thomas-Bennett, Rachel Hare, Lesel Dawson, Alice Malpass, Lucy E Selman","doi":"10.1177/26323524241274175","DOIUrl":"10.1177/26323524241274175","url":null,"abstract":"<p><strong>Background: </strong>Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich community assets. It was held in person over 8 days in May 2023.</p><p><strong>Objectives: </strong>To evaluate the reach and impact of Good Grief Weston festival and gather data to inform future festivals.</p><p><strong>Design: </strong>Mixed methods evaluation (survey and focus groups).</p><p><strong>Methods: </strong>Online and paper surveys assessing participants' characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers.</p><p><strong>Results: </strong>Approximately 3000 people attended the festival. Of 204 completed surveys, 64.5% were from women, age range ⩽15 to ⩾75 years; 88.2% identified as White; 14.9% deaf, disabled/with a chronic condition; 18.9% neurodivergent; 9.0% gay, bisexual or queer. Festival participants were entertained (70.9%), inspired (68.5%), felt part of a like-minded community (54.3%), talked to someone new (49.2%), learnt about grief/bereavement (34.3%), shared or expressed experiences (30.3%) and found out about local support (19.7%). 71.3% reported that they felt more confident talking about grief after attending. Median experience rating was 5 (IQR 0; possible range 1 = poor to 5 = excellent). In free-text comments, participants expressed appreciation for the festival and described benefits in attending. Two focus groups were conducted (<i>n</i> = 8 participants, all women), lasting c.1.5 h. Focus groups added rich descriptions of the festival's value, and data to inform the next festival.</p><p><strong>Conclusion: </strong>Findings suggest festivals of this nature can play a central role in a public health approach.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241274175"},"PeriodicalIF":2.7,"publicationDate":"2024-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11378171/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142156240","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":"Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement.","authors":"Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Liesbeth De Donder, Luc Deliens, Steven Vanderstichelen, Silke Marynissen, Joachim Cohen, Filip Van Droogenbroeck","doi":"10.1177/26323524241272110","DOIUrl":"10.1177/26323524241272110","url":null,"abstract":"<p><strong>Background: </strong>Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting.</p><p><strong>Objectives: </strong>This paper investigates the activities and outcomes of a compassionate community initiative-the Compassionate University program at the Vrije Universiteit Brussel in Belgium.</p><p><strong>Design: </strong>Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program.</p><p><strong>Methods: </strong>During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records.</p><p><strong>Results: </strong>Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university.</p><p><strong>Conclusion: </strong>The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241272110"},"PeriodicalIF":2.7,"publicationDate":"2024-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11366097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142113013","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":"'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.","authors":"Cassandra P Griffin, Melissa A Carlson, Marjorie M Walker, James Lynam, Christine L Paul","doi":"10.1177/26323524241272106","DOIUrl":"10.1177/26323524241272106","url":null,"abstract":"<p><strong>Background: </strong>Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers.</p><p><strong>Method: </strong>We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews.</p><p><strong>Results: </strong>Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted.</p><p><strong>Conclusion: </strong>Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241272106"},"PeriodicalIF":2.7,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11334123/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142009583","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}