Palliative Care and Social Practice最新文献

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Towards a novel framework for identifying commonalities and differences in older people's end-of-life trajectories: aims and interdisciplinary mixed-methods approach of the ERC-funded TRAJECT project. 迈向识别老年人生命终结轨迹的共性和差异的新框架:erc资助的TRAJECT项目的目标和跨学科混合方法方法。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-19 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241306120
Khyati Tripathi, Emma Gobiet, Lieve Van den Block, Casper Van den Bossche, Lara Pivodic
{"title":"Towards a novel framework for identifying commonalities and differences in older people's end-of-life trajectories: aims and interdisciplinary mixed-methods approach of the ERC-funded TRAJECT project.","authors":"Khyati Tripathi, Emma Gobiet, Lieve Van den Block, Casper Van den Bossche, Lara Pivodic","doi":"10.1177/26323524241306120","DOIUrl":"10.1177/26323524241306120","url":null,"abstract":"<p><strong>Background: </strong>Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function and clinical predictors and neglects inter-individual differences. A better understanding of end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of palliative care and health services planning.</p><p><strong>Objectives: </strong>TRAJECT is a European Research Council-funded interdisciplinary project with a central aim to gain understanding of what is generalisable and what is individually specific in older people's end-of-life trajectories and in the circumstances that shape them.</p><p><strong>Design: </strong>Convergent mixed-methods design including a quantitative longitudinal survey study, a serial narrative study and a mortality follow-back survey.</p><p><strong>Methods and analysis: </strong>TRAJECT applies a novel methodological and analytical framework, examining trajectories through two distinct scientific lenses, both suited for uncovering variability as well as general principles: a structured quantitative approach to capture fluctuations in a standardised way, and an experience-focused qualitative approach to study the subjective stories and meanings behind changes in health. The findings of the quantitative and qualitative methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. The research is conducted in Belgium.</p><p><strong>Discussion: </strong>This project will lead to a new understanding of the varied ways in which older people's end-of-life trajectories unfold and which circumstances and experiences shape them. It will also reveal which elements of trajectories are shared across groups of people and which are individually specific. These new insights will provide a much-needed evidence base concerning groups at risk of poor well-being as they near death, which is needed to optimise palliative care practice, needs assessment, as well as health service planning.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241306120"},"PeriodicalIF":2.7,"publicationDate":"2024-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11660059/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878161","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
Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK). 为患有限制生命和危及生命疾病的儿童和青少年制定以儿童和家庭为中心的结果衡量标准:儿童姑息治疗结果量表(C-POS:UK)的进展情况。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-17 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241303537
Debbie Braybrook, Lucy Coombes, Daney Harðardóttir, Hannah M Scott, Katherine Bristowe, Clare Ellis-Smith, Anna Roach, Christina Ramsenthaler, Myra Bluebond-Langner, Julia Downing, Fliss E M Murtagh, Lorna K Fraser, Richard Harding
{"title":"Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).","authors":"Debbie Braybrook, Lucy Coombes, Daney Harðardóttir, Hannah M Scott, Katherine Bristowe, Clare Ellis-Smith, Anna Roach, Christina Ramsenthaler, Myra Bluebond-Langner, Julia Downing, Fliss E M Murtagh, Lorna K Fraser, Richard Harding","doi":"10.1177/26323524241303537","DOIUrl":"10.1177/26323524241303537","url":null,"abstract":"<p><strong>Background: </strong>Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.</p><p><strong>Objective: </strong>To develop C-POS:UK (Children's Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties.</p><p><strong>Design: </strong>Sequential mixed-methods approach to PCOM development, guided by Rothrock's measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology.</p><p><strong>Methods: </strong>(i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation.</p><p><strong>Results: </strong>(i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child's developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child's developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing.</p><p><strong>Conclusion: </strong>A sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241303537"},"PeriodicalIF":2.7,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11650473/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847864","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
Report from the Fourth International Last Aid Conference: Last Aid and networks in community palliative care. 第四届国际临终关怀会议报告:临终关怀和社区姑息治疗网络。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-16 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241299300
Georg Bollig, Raymond Voltz, Erika Zelko
{"title":"Report from the Fourth International Last Aid Conference: Last Aid and networks in community palliative care.","authors":"Georg Bollig, Raymond Voltz, Erika Zelko","doi":"10.1177/26323524241299300","DOIUrl":"10.1177/26323524241299300","url":null,"abstract":"<p><p>The Fourth International Last Aid Conference was held from 4th to 6th September 2024 in Cologne, Germany. Seventy-three participants from 16 different countries and nationalities participated in the Fourth International Last Aid conference in the Mildred Scheel Academy and the Department of Palliative Medicine at the University Hospital of Cologne, Germany. The main topics of the conference were experiences with Last Aid Courses, research on public palliative care education (PPCE) and networks in community palliative care from different countries. The speakers from different countries around the world presented experiences with networking in community care, PPCE and lessons learned from the implementation of Last Aid Courses and different course formats in different countries. The contribution of research and the past and future work of the Last Aid International Research Group (LARGI) for the development of Last Aid was presented and discussed. This report provides an overview of the conference topics, the presentations by international experts from around the world and the most important results and implications.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241299300"},"PeriodicalIF":2.7,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11648013/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142839778","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
A nationwide survey of bereavement care for siblings provided by paediatric palliative care teams. 关于儿科姑息关怀团队为兄弟姐妹提供的丧亲关怀的全国性调查。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-16 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241304782
Ashley Ridley, Régis Aubry, Sandra Frache
{"title":"A nationwide survey of bereavement care for siblings provided by paediatric palliative care teams.","authors":"Ashley Ridley, Régis Aubry, Sandra Frache","doi":"10.1177/26323524241304782","DOIUrl":"10.1177/26323524241304782","url":null,"abstract":"<p><strong>Background: </strong>Bereavement support is considered a core standard of care for paediatric palliative care (PPC) teams. Support for grieving siblings can present unique challenges. Developmentally appropriate care can help children navigate their grief experience.</p><p><strong>Objectives: </strong>To describe the provider perspectives (mission and development) of bereavement care for siblings, and to describe the bereavement follow-up interventions offered for siblings by hospital-based PPC teams nationwide.</p><p><strong>Design and methods: </strong>Qualitative study conducted by semidirected telephone interviews. At least one member from each PPC team was interviewed. Interviews transcribed verbatim were analysed using grounded theory.</p><p><strong>Results: </strong>Twenty-one teams participated (response rate 91%). Most teams (80%) provided individual psychotherapy to families, and a few (28%) offered group interventions. PPC teams endeavour to expand their bereavement services and create a stronger collaboration network with community services. However, limited human resources, lack of facilities and financing, and geographical distances were frequent obstacles to bereavement care program development.</p><p><strong>Conclusion: </strong>PPC teams support bereaved siblings as an integral part of palliative care. Although PPC teams cannot meet all the needs of bereaved families, they can serve as important reference points to consolidate knowledge of available local resources and offer well-informed guidance to families and community users. Greater public awareness of childhood bereavement and engaging with community structures could help overcome some of the common obstacles to service development. Further studies are warranted in evaluating bereavement services in France and in other healthcare systems.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241304782"},"PeriodicalIF":2.7,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11650496/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847862","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
Risk factors for housing insecurity following bereavement: a cross-sectional analysis of UK survey respondents. 丧失亲人后住房不安全的风险因素:对英国调查受访者的横断面分析。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-16 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241306122
C R L Simpson-Greene, B F Hudson
{"title":"Risk factors for housing insecurity following bereavement: a cross-sectional analysis of UK survey respondents.","authors":"C R L Simpson-Greene, B F Hudson","doi":"10.1177/26323524241306122","DOIUrl":"10.1177/26323524241306122","url":null,"abstract":"<p><strong>Background: </strong>Housing insecurity can be linked to bereavement and is often caused or exacerbated by loss of household income and restrictions to some tenancy agreements. Housing insecurity can result in significant practical disruption, increase risk of adverse health outcomes and decrease quality of life. However, despite the impact of housing insecurity on experiences following bereavement, little is known about its underlying risk factors.</p><p><strong>Aim: </strong>To investigate characteristics associated with housing insecurity, defined as odds of having to move home following bereavement.</p><p><strong>Methods: </strong>This exploratory, cross-sectional analysis used data from an online survey commissioned by Marie Curie in November 2023. The survey investigated administrative difficulties faced by UK residents who had experienced a close bereavement in the past five years. Logistic regression modelling was used to quantify the strength and direction of the association between characteristics and odds of having to move home.</p><p><strong>Results: </strong>In all, 2901 bereaved people were included in the analysis. The incidence of having to move home following bereavement was 11.2% (<i>n</i> = 324). Characteristics associated with significantly increased odds of having to move in fully adjusted models included being younger, being male, renting privately, bereavement following the death of a younger person, being bereaved in the last 12 months and completing practical tasks following bereavement, a proxy measure for the relationship between the bereaved and deceased. Living in Wales, living in Scotland and living in Northern Ireland were each associated with significantly lower odds of having to move compared with living in England. Data on ethnicity or socioeconomic factors were unavailable.</p><p><strong>Conclusion: </strong>Certain groups of people may have an increased risk of having to move home following bereavement. This highlights inequity in experiences of bereavement and emphasises the need for research to explore other aspects of housing insecurity and the means to address potential inequities.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241306122"},"PeriodicalIF":2.7,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11648002/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142839840","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
Contextualizing attitudes toward medical aid in dying in a national sample of interdisciplinary US hospice clinicians: hospice philosophy of care, patient-centered care, and professional exposure. 美国多学科安宁疗护临床医师对临终医疗援助的态度:安宁疗护哲学、以病人为中心的疗护与专业暴露。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-08 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241302097
Todd D Becker, John G Cagle, Cindy L Cain, Joan K Davitt, Nancy Kusmaul, Paul Sacco
{"title":"Contextualizing attitudes toward medical aid in dying in a national sample of interdisciplinary US hospice clinicians: hospice philosophy of care, patient-centered care, and professional exposure.","authors":"Todd D Becker, John G Cagle, Cindy L Cain, Joan K Davitt, Nancy Kusmaul, Paul Sacco","doi":"10.1177/26323524241302097","DOIUrl":"10.1177/26323524241302097","url":null,"abstract":"<p><strong>Background: </strong>Despite extensive theoretical debate, empirical research on medical aid in dying (MAID) largely has disregarded broader, contextual factors as potential correlates of attitudes in hospice clinicians.</p><p><strong>Objective: </strong>Informed by institutional theory and neofunctional attitude theory, the objective of the current study was to quantitatively examine hospice clinicians' attitudes toward MAID as functions of institutional characteristics relating to (Aim 1) individual adherence to hospice values and (Aim 2) state law.</p><p><strong>Design: </strong>We used a cross-sectional design.</p><p><strong>Methods: </strong>A national convenience sample of interdisciplinary hospice clinicians recruited through US professional membership associations self-administered an online survey. Measures included attitudes toward MAID, attitudes toward the hospice philosophy of care, attitudes toward the principle that hospice care should not hasten death, orientation toward patient-centeredness, professional exposure to working in a state where MAID is legal, and demographic characteristics. Data were analyzed via a partial proportional odds model.</p><p><strong>Results: </strong>The sample (<i>N</i> = 450) comprised hospice physicians (227 [50.4%]), nurses (64 [14.2%]), social workers (74 [16.4%]), and 85 chaplains (85 [18.9%]). Results of the partial proportional odds model indicated that professional exposure to working in a state where MAID is legal was significantly associated with over twice the cumulative odds of MAID support. Although neither orientation toward patient-centered care nor attitudes toward the hospice philosophy of care was significantly associated with attitudes toward MAID, results showed that disagreement with the narrower principle that hospice care should not hasten death was significantly associated with 6-to-7 times the cumulative odds of MAID support.</p><p><strong>Conclusion: </strong>Findings suggest that contextual factors-namely, the environments in which hospice clinicians practice-may shape attitudes toward MAID. Unanticipated results indicating that hospice professionals' adherence to hospice values was not significantly associated with attitudes toward MAID underscore the need for further research on these complex associations, given previous theoretical and empirical support.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241302097"},"PeriodicalIF":2.7,"publicationDate":"2024-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11626713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142802573","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
Medicinal cannabis - has it found a place in palliative care? 药用大麻——它在姑息治疗中找到了一席之地吗?
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-05 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241273491
Janet R Hardy
{"title":"Medicinal cannabis - has it found a place in palliative care?","authors":"Janet R Hardy","doi":"10.1177/26323524241273491","DOIUrl":"10.1177/26323524241273491","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241273491"},"PeriodicalIF":2.7,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618918/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142787273","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
Palliative care in policy documents for adults with cancer and non-cancer diseases with potential palliative care needs: a document analysis. 有潜在姑息治疗需求的成人癌症和非癌症疾病政策文件中的姑息治疗:一项文件分析。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-12-03 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241296145
Anna O'Sullivan, Linnéa Carling, Joakim Öhlén, Stina Nyblom, Anneli Ozanne, Ragnhild Hedman, Carl-Johan Fürst, Cecilia Larsdotter
{"title":"Palliative care in policy documents for adults with cancer and non-cancer diseases with potential palliative care needs: a document analysis.","authors":"Anna O'Sullivan, Linnéa Carling, Joakim Öhlén, Stina Nyblom, Anneli Ozanne, Ragnhild Hedman, Carl-Johan Fürst, Cecilia Larsdotter","doi":"10.1177/26323524241296145","DOIUrl":"10.1177/26323524241296145","url":null,"abstract":"<p><strong>Background: </strong>The inclusion of palliative care in policy has been encouraged internationally, and gradually implemented, including in Sweden. Care should be driven by policy; hence, examining how palliative care is included in national policy documents is paramount.</p><p><strong>Objectives: </strong>This study aimed to examine how palliative care is included in national disease-specific policy documents for adults with chronic conditions, cancer and non-cancer, with potential palliative care needs.</p><p><strong>Design: </strong>Document analysis.</p><p><strong>Methods: </strong>A document analysis of Swedish policy documents for different disease-specific groups with severe chronic conditions, cancer and non-cancer, was performed. In total, 96 documents were analysed.</p><p><strong>Results: </strong>How palliative care was included in the policy documents varied from mentioning the term without explanation to detailed discussion regarding palliative care practice. Such discussion encompassed several conceptualisations of palliative care: defined through authorities' definitions; as care of dying persons; integrated with disease-specific care and treatment; limited to disease-specific medical treatments or based on detail regarding certain key elements of palliative care such as specialised palliative care and end-of-life conversations.</p><p><strong>Conclusion: </strong>There may be large variations in how palliative care is conceptualised in national disease-specific policy documents, as disclosed by this analysis of the Swedish case. Limiting palliative care to disease-specific medical treatments (most commonly palliative oncological treatments) or the care of dying persons limits its scope in ways contrary to current evidence supporting early integrated palliative care. The lack of palliative care recommendations adapted for each specific diagnosis indicates a gap in policy. To promote equal access to palliative care regardless of patients' diseases or medical conditions, the importance of how palliative care is included in national policy documents needs to be further acknowledged and discussed - with palliative care consistently included in such documents.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241296145"},"PeriodicalIF":2.7,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11615978/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142781443","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
Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study. 关注生命而不是疾病:有生命威胁和生命限制条件的儿童的生活经历——一项定性研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-11-29 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241301431
Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger
{"title":"Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study.","authors":"Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger","doi":"10.1177/26323524241301431","DOIUrl":"https://doi.org/10.1177/26323524241301431","url":null,"abstract":"<p><strong>Background: </strong>The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children's perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally.</p><p><strong>Objective: </strong>This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions.</p><p><strong>Design: </strong>The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice.</p><p><strong>Methods: </strong>Twelve children with cancer or genetic conditions participated. Due to the children's varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children's perspectives, including interviews, interactions, descriptions of the children's non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis.</p><p><strong>Results: </strong>The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items.</p><p><strong>Conclusion: </strong>Professionals across various levels within pediatric palliative care should acknowledge children's desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children's agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241301431"},"PeriodicalIF":2.7,"publicationDate":"2024-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11607763/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773169","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
Financial cost of end-of-life cancer care in palliative care units (PCUs) and non-PCUs in Iran: insights from low- and middle-income countries. 伊朗姑息治疗单位和非姑息治疗单位临终癌症治疗的财务成本:来自低收入和中等收入国家的见解
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-11-28 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241299819
Ali Darrudi, Amir Hossein Poupak, Rajabali Darroudi, Nasrin Sargazi, Kazem Zendehdel, Libby Sallnow, Ali Ghanbari Motlagh, Mamak Tahmasebi, Azin Nahvijou
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