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Behaviours and psychological symptoms of childhood dementia: two cases of psychosocial interventions. 儿童痴呆症的行为和心理症状:两个社会心理干预案例。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-09-06 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241273492
Mustafa Atee, Ineka Whiteman, Rebecca Lloyd, Thomas Morris
{"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":null,"pages":null},"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}
引用次数: 0
Community engagement in a seaside town: evaluation of Good Grief Weston festival. 海滨小镇的社区参与:对 "Good Grief Weston "节的评估。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-09-06 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241274175
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
{"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":null,"pages":null},"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}
引用次数: 0
Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement. 为重病、死亡和丧亲之痛描绘一所富有同情心的大学所产生的连锁反应。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-08-31 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241272110
Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Liesbeth De Donder, Luc Deliens, Steven Vanderstichelen, Silke Marynissen, Joachim Cohen, Filip Van Droogenbroeck
{"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":null,"pages":null},"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}
引用次数: 0
'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. 我想我们都从中汲取了力量":一位患有脑癌的亲人去世并在死后捐献大脑后,其近亲的定性思考。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-08-19 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241272106
Cassandra P Griffin, Melissa A Carlson, Marjorie M Walker, James Lynam, Christine L Paul
{"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":null,"pages":null},"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}
引用次数: 0
'There is no such word as palliative care for us at the moment': A mixed-method study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan. 目前我们还没有姑息关怀这个词":不丹医护专业人员对姑息关怀需求的看法的混合方法研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-08-15 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241272102
Tara Devi Laabar, Christobel Saunders, Kirsten Auret, Claire E Johnson
{"title":"'There is no such word as palliative care for us at the moment': A mixed-method study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan.","authors":"Tara Devi Laabar, Christobel Saunders, Kirsten Auret, Claire E Johnson","doi":"10.1177/26323524241272102","DOIUrl":"10.1177/26323524241272102","url":null,"abstract":"<p><strong>Background: </strong>The need for palliative care is ever-increasing globally. However, it is least developed or not available in most low-and-middle-income-countries including Bhutan.</p><p><strong>Objective: </strong>This study was aimed at exploring the perspectives of Bhutanese healthcare professionals on the need for palliative care in the country.</p><p><strong>Design: </strong>This is a cross-sectional, mixed-method study.</p><p><strong>Setting/subjects: </strong>The study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and <i>Drungtshos</i> (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews.</p><p><strong>Results: </strong>While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from 1 day to 6 weeks. Ninety-five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan.</p><p><strong>Conclusion: </strong>Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11329896/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142000886","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}
引用次数: 0
Describing the characteristics and symptom profile of a group of urban patients experiencing socioeconomic inequity and receiving palliative care: a descriptive exploratory analysis. 描述一群遭遇社会经济不平等并接受姑息关怀的城市患者的特征和症状概况:一项描述性探索分析。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-08-01 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241264880
Harrison Moore, Cara Bablitz, Anna Santos Salas, Heather Morris, Aynharan Sinnarajah, Sharon M Watanabe
{"title":"Describing the characteristics and symptom profile of a group of urban patients experiencing socioeconomic inequity and receiving palliative care: a descriptive exploratory analysis.","authors":"Harrison Moore, Cara Bablitz, Anna Santos Salas, Heather Morris, Aynharan Sinnarajah, Sharon M Watanabe","doi":"10.1177/26323524241264880","DOIUrl":"10.1177/26323524241264880","url":null,"abstract":"<p><strong>Background: </strong>Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population.</p><p><strong>Objectives: </strong>To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care.</p><p><strong>Design: </strong>Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention.</p><p><strong>Methods: </strong>The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study.</p><p><strong>Results: </strong>Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%).</p><p><strong>Conclusion: </strong>Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295232/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890319","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}
引用次数: 0
Mid-Atlantic primary care providers' perception of barriers and facilitators to end-of-life conversation. 大西洋中部初级医疗服务提供者对生命末期谈话的障碍和促进因素的看法。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-08-01 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241264882
Melanie A Horning, Barbara Habermann
{"title":"Mid-Atlantic primary care providers' perception of barriers and facilitators to end-of-life conversation.","authors":"Melanie A Horning, Barbara Habermann","doi":"10.1177/26323524241264882","DOIUrl":"10.1177/26323524241264882","url":null,"abstract":"<p><strong>Background: </strong>Among the chronically ill, end-of-life conversations are often delayed until emergently necessary and the quality of those conversations and subsequent decision-making become compromised by critical illness, uncertainty, and anxiety. Many patients receive treatment that they would have declined if they had a better understanding of benefits and risks. Primary care providers are ideal people to facilitate end-of-life conversations, but these conversations rarely occur in the out-patient setting.</p><p><strong>Objective: </strong>To investigate the self-reported experiences of physicians and advanced practice nurses with conversational barriers and facilitators while leading end-of-life discussions in the primary care setting.</p><p><strong>Design: </strong>A qualitative descriptive study.</p><p><strong>Methods: </strong>Six physicians and eight advanced practice nurses participated in singular semi-structured interviews. Results were analyzed using a qualitative descriptive design and content analysis approach to coding.</p><p><strong>Results: </strong>Reported barriers in descending order included resistance from patients and families, insufficient time, and insufficient understanding of prognosis and associated expectations. Reported facilitators in descending order included established trusting relationship with provider, physical and/or cognitive decline and poor prognosis; and discussion standardization per Medicare guidelines.</p><p><strong>Conclusion: </strong>Recommendations for improving the end-of-life conversational process in the primary care setting include further research regarding end-of-life conversational facilitators within families, the improvement of patient/family education about hospice/palliative care resources and examining the feasibility of longer appointment allotment.<sup>1</sup>.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295217/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890320","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}
引用次数: 0
'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study. 必须有人去做":关于家人在临终关怀中的角色的多种观点--一项国际定性研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-08-01 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241260425
Vilma A Tripodoro, Verónica I Veloso, Eva Víbora Martín, Hana Kodba-Čeh, Miša Bakan, Birgit H Rasmussen, Sofía C Zambrano, Melanie Joshi, Svandis Íris Hálfdánardóttir, Guðlaug Helga Ásgeirsdóttir, Elisabeth Romarheim, Dagny Faksvåg Haugen, Tamsin McGlinchey, Berivan Yildiz, Pilar Barnestein-Fonseca, Anne Goossensen, Urška Lunder, Agnes van der Heide
{"title":"'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.","authors":"Vilma A Tripodoro, Verónica I Veloso, Eva Víbora Martín, Hana Kodba-Čeh, Miša Bakan, Birgit H Rasmussen, Sofía C Zambrano, Melanie Joshi, Svandis Íris Hálfdánardóttir, Guðlaug Helga Ásgeirsdóttir, Elisabeth Romarheim, Dagny Faksvåg Haugen, Tamsin McGlinchey, Berivan Yildiz, Pilar Barnestein-Fonseca, Anne Goossensen, Urška Lunder, Agnes van der Heide","doi":"10.1177/26323524241260425","DOIUrl":"10.1177/26323524241260425","url":null,"abstract":"<p><strong>Background: </strong>Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.</p><p><strong>Objectives: </strong>This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view.</p><p><strong>Design: </strong>This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites.</p><p><strong>Methods: </strong>Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis.</p><p><strong>Results: </strong>We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care.</p><p><strong>Conclusion: </strong>Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295216/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890321","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}
引用次数: 0
Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE. 有未成年子女的临终父母与姑息治疗患者的生命意义比较--利用 SMiLE 进行定量分析。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-07-31 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241264883
Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş
{"title":"Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE.","authors":"Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş","doi":"10.1177/26323524241264883","DOIUrl":"10.1177/26323524241264883","url":null,"abstract":"<p><strong>Background: </strong>Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.</p><p><strong>Objectives: </strong>The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.</p><p><strong>Methods: </strong>Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.</p><p><strong>Results: </strong>In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.</p><p><strong>Conclusion: </strong>The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289801/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861091","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}
引用次数: 0
Novel drug treatments for pain in advanced cancer and serious illness: a focus on neuropathic pain and chemotherapy-induced peripheral neuropathy. 晚期癌症和重症疼痛的新型药物治疗:关注神经性疼痛和化疗引起的周围神经病变。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-07-31 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241266603
Mellar P Davis
{"title":"Novel drug treatments for pain in advanced cancer and serious illness: a focus on neuropathic pain and chemotherapy-induced peripheral neuropathy.","authors":"Mellar P Davis","doi":"10.1177/26323524241266603","DOIUrl":"10.1177/26323524241266603","url":null,"abstract":"<p><p>Drugs that are commercially available but have novel mechanisms of action should be explored as analgesics. This review will discuss haloperidol, miragabalin, palmitoylethanolamide (PEA), and clonidine as adjuvant analgesics or analgesics. Haloperidol is a sigma-1 receptor antagonist. Under stress and neuropathic injury, sigma-1 receptors act as a chaperone protein, which downmodulates opioid receptor activities and opens several ion channels. Clinically, there is only low-grade evidence that haloperidol improves pain when combined with morphine, methadone, or tramadol in patients who have cancer, pain from fibrosis, radiation necrosis, or neuropathic pain. Miragabalin is a gabapentinoid approved for the treatment of neuropathic pain in Japan since 2019. In randomized trials, patients with diabetic neuropathy have responded to miragabalin. Its long binding half-life on the calcium channel subunit may provide an advantage over other gabapentinoids. PEA belongs to a group of endogenous bioactive lipids called ALIAmides (autocoid local injury antagonist amides), which have a sense role in modulating numerous biological processes in particular non-neuronal neuroinflammatory responses to neuropathic injury and systemic inflammation. Multiple randomized trials and meta-analyses have demonstrated PEA's effectiveness in reducing pain severity arising from diverse pain phenotypes. Clonidine is an alpha2 adrenoceptor agonist and an imidazoline2 receptor agonist, which is U.S. Federal Drug Administration approved for attention deficit hyperactivity disorder in children, Tourette's syndrome, adjunctive therapy for cancer-related pain, and hypertension. Clonidine activation at alpha2 adrenoceptors causes downstream activation of inhibitory G-proteins (Gi/Go), which inhibits cyclic Adenosine monophosphate (AMP) production and hyperpolarizes neuron membranes, thus reducing allodynia. Intravenous clonidine has been used in terminally ill patients with poorly controlled symptoms, in particular pain and agitation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289827/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861092","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}
引用次数: 0
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