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What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders Palliat. Med. (IF 4.4) Pub Date : 2024-03-14 Hannah May Scott, Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Anna Roach, Katherine Bristowe, Myra Bluebond-Langner, Lorna K Fraser, Julia Downing, Bobbie Farsides, Fliss EM Murtagh, Clare Ellis-Smith, Richard Harding
Background:There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.Aim:To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting
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Shared decision-making in palliative cancer care: A systematic review and metasynthesis Palliat. Med. (IF 4.4) Pub Date : 2024-03-14 Jannicke Rabben, Bella Vivat, Mariann Fossum, Gudrun Elin Rohde
Background:Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing
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Accelerated transcranial magnetic stimulation for psychological distress in advanced cancer: A phase 2a feasibility and preliminary efficacy clinical trial Palliat. Med. (IF 4.4) Pub Date : 2024-03-14 James Downar, Julie Lapenskie, Koby Anderson, Jodi Edwards, Christine Watt, Michel Dionne, Jill Rice, Monisha Kabir, Peter Lawlor, Jonathan Downar
Background:Psychological and existential suffering affects many people with advanced illness, and current therapeutic options have limited effectiveness. Repetitive transcranial magnetic stimulation (rTMS) is a safe and effective therapy for refractory depression, but no previous study has used rTMS to treat psychological or existential distress in the palliative setting.Aim:To determine whether a
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Development of a palliative paramedicine framework to standardise best practice: A Delphi study Palliat. Med. (IF 4.4) Pub Date : 2024-03-14 Madeleine L Juhrmann, Phyllis N Butow, Paul Simpson, Mark Boughey, Meredith Makeham, Josephine M Clayton
Background:Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer
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Supporting best practice in reflexive thematic analysis reporting in Palliative Medicine: A review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG) Palliat. Med. (IF 4.4) Pub Date : 2024-03-12 Virginia Braun, Victoria Clarke
Background:Reflexive thematic analysis is widely used in qualitative research published in Palliative Medicine, and in the broader field of health research. However, this approach is often not used well. Common problems in published reflexive thematic analysis in general include assuming thematic analysis is a singular approach, rather than a family of methods, confusing themes and topics, and treating
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Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research Palliat. Med. (IF 4.4) Pub Date : 2024-03-08 Slavica Kochovska, Fliss EM Murtagh, Meera Agar, Jane L Phillips, Deborah Dudgeon, Sanja Lujic, Miriam J Johnson, David C Currow
Background:Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and
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Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis Palliat. Med. (IF 4.4) Pub Date : 2024-03-07 Victoria Kammin, Lorna Fraser, Kate Flemming, Julia Hackett
Background:Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services.Aim:To systematically identify and synthesise qualitative
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Subcutaneous sodium valproate in palliative care: A systematic review Palliat. Med. (IF 4.4) Pub Date : 2024-03-06 Sheryn Tan, Jeng Swen Ng, Charis Tang, Brandon Stretton, Joshua Kovoor, Aashray Gupta, Thomson Delloso, Tony Zhang, Rudy Goh, Shaddy El-Masri, Michelle Kiley, Ian Maddocks, Adil Harroud, Sybil Stacpoole, Gregory Crawford, Stephen Bacchi
Background:Seizures are an important palliative symptom, the management of which can be complicated by patients’ capacity to swallow oral medications. In this setting, and the wish to avoid intravenous access, subcutaneous infusions may be employed. Options for antiseizure medications that can be provided subcutaneously may be limited. Subcutaneous sodium valproate may be an additional management strategy
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‘My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition Palliat. Med. (IF 4.4) Pub Date : 2024-03-05 Katherine Bristowe, Debbie Braybrook, Hannah M Scott, Lucy Coombes, Daney Harðardóttir, Anna Roach, Clare Ellis-Smith, Myra Bluebond-Langner, Lorna Fraser, Julia Downing, Fliss Murtagh, Richard Harding
Background:Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child.Aim:To explore the language children and young people use to describe their own condition, to inform strategies for discussing
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Improving family grief outcomes: A scoping review of family-based interventions before and after the death of a child Palliat. Med. (IF 4.4) Pub Date : 2024-03-04 Beverley Lim Høeg, Mai-Britt Guldin, Julie Høgh, Johanne Esther Volkmann, Joanne Wolfe, Hanne Bækgaard Larsen, Pernille Envold Bidstrup
Background:Experiencing the illness and death of a child is a traumatic experience for the parents and the child’s siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings.Aim:We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before
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Re: Liu et al., Effectiveness and safety of opioids on breathlessness and exercise endurance in patients with chronic obstructive pulmonary disease: A systematic review and meta-analysis of randomised controlled trials Palliat. Med. (IF 4.4) Pub Date : 2024-02-28 Miriam J Johnson, Magnus Ekström, Daisy JA Janssen, David C Currow
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How palliative care professionals develop coping competence through their career: A grounded theory Palliat. Med. (IF 4.4) Pub Date : 2024-02-21 Maria Arantzamendi, Paula Sapeta, Alazne Belar, Carlos Centeno
Background:Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career.Aim:To develop an explanatory model of
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‘So being here is. . . I feel like I’m being a social worker again, at the hospice’: Using interpretative phenomenological analysis to explore social workers’ experiences of hospice work Palliat. Med. (IF 4.4) Pub Date : 2024-02-19 Hayley Scanlon, Gary Latchford, Matthew Allsop
Background:Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege)
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What are the triggers for palliative care referral in burn intensive care units? Results from a qualitative study based on healthcare professionals’ views, clinical experiences and practices Palliat. Med. (IF 4.4) Pub Date : 2024-02-19 André Filipe Ribeiro, Sandra Martins Pereira, Rui Nunes, Pablo Hernández-Marrero
Background:Burns are a global public health problem, accounting for around 300,000 deaths annually. Burns have significant consequences for patients, families, healthcare teams and systems. Evidence suggests that the integration of palliative care in burn intensive care units improves patients’ comfort, decision-making processes and family care. Research is needed on how to optimise palliative care
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‘People don’t realise how much their past experiences affect them in adulthood’: A qualitative study of adult siblings’ experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs Palliat. Med. (IF 4.4) Pub Date : 2024-02-12 Susan Kirk, Steven Pryjmachuk
Background:There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions.Aim:To explore adult siblings’ perspectives on the experience of having a sister/brother
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Co-designing a culturally-sensitive theory-driven advance care planning game with Chinese older adults and healthcare providers Palliat. Med. (IF 4.4) Pub Date : 2024-02-01 Li Liu, Yao Wang, Tad Chun-Kwan Ho, Miranda Man-Yee Li, Eddie Wai-Sum Cheung, Rita Suk-Kuen Chow, Can Gu, Helen Yue-Lai Chan
Background:Advance care planning can be challenging because discussing end-of-life care often has negative connotations. Gamification is a novel approach to encourage advance care planning conversations in Western culture.Aim:To co-design a game with multiple stakeholders to promote advance care planning in Chinese communities.Design:A two-phase design guided by the Medical Research Council framework
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Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study Palliat. Med. (IF 4.4) Pub Date : 2024-02-01 Séverine M Surges, Holger Brunsch, Birgit Jaspers, Kathi Apostolidis, Antonella Cardone, Carlos Centeno, Nathan Cherny, Àgnes Csikós, Robin Fainsinger, Eduardo Garralda, Julie Ling, Johan Menten, Sebastiano Mercadante, Daniela Mosoiu, Sheila Payne, Nancy Preston, Lieve Van den Block, Jeroen Hasselaar, Lukas Radbruch
Background:The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology
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The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia Palliat. Med. (IF 4.4) Pub Date : 2024-01-31 Fanny Monnet, Ana Diaz, Dianne Gove, Charlèss Dupont, Lara Pivodic, Lieve Van den Block
Background:Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia.Aim:To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care
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Understanding the extent to which PROMs and PREMs used with older people with severe frailty capture their multidimensional needs: A scoping review Palliat. Med. (IF 4.4) Pub Date : 2024-01-25 Faith D Howard, Richard Green, Jenny Harris, Joy Ross, Caroline Nicholson
Background:Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this.Aim:To establish whether, and in what ways, the needs of older people living with severe
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Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners Palliat. Med. (IF 4.4) Pub Date : 2024-01-25 Meredith A Bock, Zachary A Macchi, Krista L Harrison, Maya Katz, Megan Dini, Jacqueline Jones, Roman Ayele, Jean S Kutner, Steven Z Pantilat, Christine Martin, Stefan Sillau, Benzi Kluger
Background:Palliative care has the potential to address significant unmet needs in people with Parkinson’s disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability.Aim:To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson’s disease.Design:Qualitative study embedded in
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Long-term bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study Palliat. Med. (IF 4.4) Pub Date : 2024-01-17 Julie Lapenskie, Koby Anderson, Peter G. Lawlor, Monisha Kabir, Chelsea Noel, Brandon Heidinger, Henrique A. Parsons, Leila Cohen, Valérie Gratton, Ella Besserer, Samantha Adeli, Rebekah Murphy, Grace Warmels, Adrianna Bruni, Khadija Bhimji, Claire Dyason, Paula Enright, Isabelle Desjardins, Krista Wooller, Kyle Arsenault-Mehta, Colleen Webber, Daniel Bedard, Akshai Iyengar, Shirley H Bush, Sarina
Background:Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe.Aim:Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12–18 months post-death.Design:Prospective matched cohort study.Settings/participants:Family
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Posttraumatic growth in palliative care settings: A scoping review of prevalence, characteristics and interventions Palliat. Med. (IF 4.4) Pub Date : 2024-01-17 Philip D Austin, Philip J Siddall, Melanie R Lovell
Background:Posttraumatic growth refers to positive psychological change following trauma. However, there is a need to better understand the experience of posttraumatic growth in the palliative care setting as well as the availability and efficacy of interventions that target this phenomenon.Aims:To provide a review of the prevalence, characteristics and interventions involving posttraumatic growth
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More than the sum of its parts—A constructivist grounded-theory study on specialist palliative care during crises like the COVID pandemic Palliat. Med. (IF 4.4) Pub Date : 2024-01-16 Julia Wikert, Claudia Bausewein, Farina Hodiamont
Background:The COVID pandemic is an example of a crisis challenging healthcare systems worldwide. The impact of the pandemic on providing high-quality palliative care calls for a deeper understanding of specialist services during crises. This is essential in preparation for further crises.Aim:To develop a conceptual understanding of the impact of the pandemic on specialist palliative care as an example
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Feasibility and effectiveness of a two-tiered intervention involving training and a new consultation model for patients with palliative care needs in primary care: A before-after study Palliat. Med. (IF 4.4) Pub Date : 2024-01-16 Carlos Seiça Cardoso, Filipe Prazeres, Bárbara Oliveiros, Cátia Nunes, Pedro Simões, Carolina Aires, Patrícia Rita, Joana Penetra, Paulo Lopes, Sara Alcobia, Sara Baptista, Carla Venâncio, Barbara Gomes
Background:Evidence suggests that involving General Practitioners in the care of patients with palliative care needs may improve patient outcomes.Aim:To evaluate whether a two-tiered intervention involving training in palliative care and a new consultation model in primary care for patients with palliative care needs is feasible and could reduce patients’ symptom burden.Design:Before-after study including
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PALLiative care in ONcology (PALLiON): A cluster-randomised trial investigating the effect of palliative care on the use of anticancer treatment at the end of life Palliat. Med. (IF 4.4) Pub Date : 2024-01-09 Marianne Jensen Hjermstad, Aleksandra Pirnat, Nina Aass, Sigve Andersen, Guro L Astrup, Olav Dajani, Herish Garresori, Kristin V Guldhav, Hanne Hamre, Ellinor C Haukland, Frode Jordal, Tonje Lundeby, Erik Torbjorn Løhre, Svein Mjåland, Ørnulf Paulsen, Karin A Semb, Erik S Staff, Torunn Wester, Stein Kaasa
Background:Effects on anticancer therapy following the integration of palliative care and oncology are rarely investigated. Thus, its potential effect is unknown.Aim:To investigate the effects of the complex intervention PALLiON versus usual care on end-of-life anticancer therapy.Design:Cluster-randomised controlled trial (RCT), registered at ClinicalTrials.gov (No. NCT01362816). The complex intervention
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Prescribing and deprescribing in older people with life-limiting illnesses receiving hospice care at the end of life: A longitudinal, retrospective cohort study. Palliat. Med. (IF 4.4) Pub Date : 2023-11-30 Tahani Alwidyan,Noleen K McCorry,Chris Black,Rachel Coulter,June Forbes,Carole Parsons
BACKGROUND Although prescribing and deprescribing practices in older people have been the subject of much research generally, there are limited data in older people at the end of life. This highlights the need for research to determine prescribing and deprescribing patterns, as a first step to facilitate guideline development for medicines optimisation in this vulnerable population. AIMS To examine
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The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden: An exploratory analysis of the BEAMS trial. Palliat. Med. (IF 4.4) Pub Date : 2023-11-17 Slavica Kochovska,Diana Ferreira,Sungwon Chang,Tim Luckett,Jessica Roydhouse,Magnus Ekström,David C Currow
BACKGROUND Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers' perceived burden. AIM To explore the impact on caregiver burden
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'Thank you for loving me': A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives. Palliat. Med. (IF 4.4) Pub Date : 2023-11-09 Emmanuelle Poncin,Emilie Bovet,Emmanuel Tamches,Boris Cantin,Josiane Pralong,Betty Althaus,Gian Domenico Borasio,Mathieu Bernard
BACKGROUND Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. AIM This paper explores how palliative care patients and relatives understand gratitude, how discursive representations
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COVID-19 in pediatric palliative care patients: Multicenter, retrospective cohort study. Palliat. Med. (IF 4.4) Pub Date : 2023-11-08 Aleksandra Korzeniewska-Eksterowicz,Olga Brzezinska,Urszula Dryja,Dominka Matczak,Andriy Sopilnyak,Eugenia Szuszkiewicz,Łukasz Przysło,Krzystof Szmyd,Katarzyna Jabłońska,Piotr Krych,Agnieszka Wojtków-Zielińska,Edyta Wąsińska,Maciej Niedźwiecki
BACKGROUND Studies have shown the risk factors for COVID-19 severity in children, including comorbidities, but information on the infection course in children with life-limiting conditions is sparse. AIM To describe the effect of COVID-19 on pediatric patients receiving palliative care due to life-limiting conditions. DESIGN We conducted retrospective cohort study. The WHO Clinical Progression Scale
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Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study. Palliat. Med. (IF 4.4) Pub Date : 2023-11-03 Claudia Virdun,Elise Button,Jane L Phillips,Patsy Yates,Tim Luckett
BACKGROUND Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. AIM To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding
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Trauma-informed palliative care is needed: A call for implementation and research. Palliat. Med. (IF 4.4) Pub Date : 2023-10-30 Janet M de Groot,Dwain C Fehon,Lynn Calman,Danielle S Miller,Andrea Feldstain
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Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation. Palliat. Med. (IF 4.4) Pub Date : 2023-10-21 Vanessa Abrahamson,Patricia Wilson,Stephen Barclay,Charlotte Brigden,Heather Gage,Kay Greene,Ferhana Hashem,Rasa Mikelyte,Melanie Rees-Roberts,Graham Silsbury,Mary Goodwin,Brooke Swash,Bee Wee,Peter Williams,Claire Butler
BACKGROUND Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. AIM To explore what works best to promote family carers' experiences of hospice-at-home. DESIGN Realist evaluation
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Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation. Palliat. Med. (IF 4.4) Pub Date : 2023-10-18 Lucy Coombes,Daney Harðardóttir,Debbie Braybrook,Hannah May Scott,Katherine Bristowe,Clare Ellis-Smith,Lorna K Fraser,Julia Downing,Myra Bluebond-Langner,Fliss Em Murtagh,Richard Harding
BACKGROUND There is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. AIM To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity. DESIGN This study was conducted
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Mutual support between patients and family caregivers in palliative care: A qualitative study. Palliat. Med. (IF 4.4) Pub Date : 2023-10-13 Rachel McCauley,Karen Ryan,Regina McQuillan,Geraldine Foley
BACKGROUND Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care. AIM To identify processes of mutual support between patients and family caregivers in palliative care. DESIGN Qualitative
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The financial costs of anticipatory prescribing: A retrospective observational study of prescribed, administered and wasted medications using community clinical records. Palliat. Med. (IF 4.4) Pub Date : 2023-10-10 Lloyd Morgan,Stephen Barclay,Kristian Pollock,Efthalia Massou,Ben Bowers
BACKGROUND The prescribing of injectable end-of-life anticipatory medications ahead of possible need is recommended best practice. The financial costs of these medications have been little studied. AIM To identify the costs of anticipatory medications prescribed, used and not used for patients approaching the end-of-life at home and in residential care. DESIGN Retrospective observational study using
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The case for perinatal palliative care and expanded research. Palliat. Med. (IF 4.4) Pub Date : 2023-10-01 Denise Côté-Arsenault
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Health care professional recruitment of patients and family carers to palliative care randomised controlled trials: A qualitative multiple case study. Palliat. Med. (IF 4.4) Pub Date : 2023-09-27 Lesley Dunleavy,Nancy Preston,Catherine Walshe
BACKGROUND Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. AIMS To explore how clinicians recruit to palliative care trials, why they choose to implement particular recruitment strategies, and
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'Thank goodness you're here'. Exploring the impact on patients, family carers and staff of enhanced 7-day specialist palliative care services: A mixed methods study. Palliat. Med. (IF 4.4) Pub Date : 2023-09-21 Catherine Walshe,Céu Mateus,Sandra Varey,Steven Dodd,Zoe Cockshott,Luís Filipe,Sarah G Brearley
BACKGROUND Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. AIM To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. DESIGN An exploratory longitudinal
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Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals. Palliat. Med. (IF 4.4) Pub Date : 2023-09-18 Megumi Kishino,Jonathan Koffman,Hiroaki Nagatomi,Misuzu Yuasa,Clare Ellis-Smith
BACKGROUND Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. AIM To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. DESIGN Qualitative study incorporating
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Effectiveness and safety of opioids on breathlessness and exercise endurance in patients with chronic obstructive pulmonary disease: A systematic review and meta-analysis of randomised controlled trials. Palliat. Med. (IF 4.4) Pub Date : 2023-09-14 Meilu Liu,Wei Xiao,Longyi Du,Yan Yu,Xugui Chen,Bing Mao,Juanjuan Fu
BACKGROUND Opioids are recommended to treat advanced refractory dyspnoea despite optimal therapy by the American Thoracic Society clinical practice guidelines, while newly published randomised controlled trials of opioids in chronic obstructive pulmonary disease yield conflicting results. AIM This study aimed to evaluate the effectiveness and safety of opioids for patients with chronic obstructive
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Advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation: A qualitative study exploring barriers, facilitators and patients' and healthcare professionals' recommendations. Palliat. Med. (IF 4.4) Pub Date : 2023-09-12 Emily Kavanagh,Grace Rowley,Lauri Simkiss,Elizabeth Woods,Craig Gouldthorpe,Kate Howorth,Max Charles,Rachel Kiltie,Hannah Billett,Francesca Mastaglio,Felicity Dewhurst
BACKGROUND Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. AIM This study aimed to explore
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A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings. Palliat. Med. (IF 4.4) Pub Date : 2023-09-10 Mary Thelen,Sarah G Brearley,Catherine Walshe
BACKGROUND Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to community-based care after hospitalisation. AIM To
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Waking up from fatigue: The hidden burden of fatigue. Palliat. Med. (IF 4.4) Pub Date : 2023-09-01 Martin Mücke
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More time in a community setting: A service evaluation of the impact of intrathecal drug delivery systems on place of care of patients with cancer pain. Palliat. Med. (IF 4.4) Pub Date : 2023-08-26 Alison Mitchell,Lesley Somerville,Nicola Williams,Jonathan McGhie,Alex McConnachie,Gordon McGinn,Jiyoung Lee
BACKGROUND Intrathecal Drug Delivery Systems are underutilised in the management of refractory cancer pain despite evidence of their efficacy. Not all patients who are offered this treatment modality accept it. There is no current evidence that indicates if the use of intrathecal drug delivery systems impacts on place of care for patients with cancer related pain. AIMS This service evaluation compared
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A grounded theory study exploring palliative care healthcare professionals' experiences of managing digital legacy as part of advance care planning for people receiving palliative care. Palliat. Med. (IF 4.4) Pub Date : 2023-08-23 Sarah Stanley,Karen Higginbotham,Anne Finucane,Amara Callistus Nwosu
BACKGROUND Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide
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Unrepresented, unheard and discriminated against: A qualitative exploration of relatives' and professionals' views of palliative care experiences of people of African and Caribbean descent during the COVID-19 pandemic. Palliat. Med. (IF 4.4) Pub Date : 2023-08-23 Felicity Dewhurst,Louise Tomkow,Marie Poole,Emma McLellan,Tafadzwa Patience Kunonga,Efioanwan Damisa,Melanie Stowell,Chris Todd,Barbara Hanratty
BACKGROUND People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care. AIM To explore palliative care experiences of people of African and Caribbean descent during and immediately prior to the pandemic. DESIGN Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with
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What outcomes do studies use to measure the impact of prognostication on people with advanced cancer? Findings from a systematic review of quantitative and qualitative studies. Palliat. Med. (IF 4.4) Pub Date : 2023-08-10 Caitlin Spooner,Bella Vivat,Nicola White,Andrea Bruun,Gudrun Rohde,Pei Xing Kwek,Patrick Stone
BACKGROUND Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important. AIM To identify outcomes previously reported in prognostic research with people with advanced cancer, as a first step towards constructing a core outcome set for prognostic impact studies. DESIGN A systematic
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Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs. Palliat. Med. (IF 4.4) Pub Date : 2023-08-08 Fiona Runacres,Susan Mathers,Sarah Cm Lee,Rowan Hearn,Sonia Gregory,Natasha Bear,Samar Aoun
BACKGROUND Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. AIM To identify the symptom prevalence and severity experienced by patients with motor neurone disease. Secondary objectives were to examine differences
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Evidence-based models of rural palliative care: A systematic review. Palliat. Med. (IF 4.4) Pub Date : 2023-08-03 Claire Marshall,Claudia Virdun,Jane L Phillips
BACKGROUND Forty-five percent of the world's population lives in rural areas, yet their access to palliative care is quite limited. Identifying the care elements rural populations with palliative care needs require is critical to improving care outcomes. AIM To identify the key care elements that optimise palliative care for people in rural communities. DESIGN AND DATA SOURCES A systematic review of
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International consensus on occupational therapy interventions for people with palliative care needs: A European Association for Palliative Care Group Concept Mapping study. Palliat. Med. (IF 4.4) Pub Date : 2023-08-03 Eva Ejlersen Wæhrens,Deidre D Morgan,Karen la Cour,Kathleen Doyle Lyons,Mario Lozano Lozano,Marysia Mr Prado De Carlo,Gabriela Rezende,Marc Sampedro Pilegaard
BACKGROUND While evidence shows that occupational therapists can play a key role in the care of people with palliative care needs, more knowledge about effective occupational therapy interventions for this group is needed. AIM To identify, organise and prioritise intervention components considered to be effective within occupational therapy for people with palliative care needs from the perspective
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Acceptance and Commitment Therapy (ACT) for people with advanced progressive illness, their caregivers and staff involved in their care: A scoping review. Palliat. Med. (IF 4.4) Pub Date : 2023-07-25 Tilly Gibson Watt,David Gillanders,Juliet A Spiller,Anne M Finucane
BACKGROUND People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based
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The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review. Palliat. Med. (IF 4.4) Pub Date : 2023-07-17 Marijanne Engel,Marije A Brouwer,Nienke Jansen,Carlo Leget,Saskia Ccm Teunissen,Marijke C Kars
BACKGROUND Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. AIM We explored how the spiritual dimension becomes manifest in parents of children in
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Differences in trends in discharge location in a cohort of hospitalized patients with cancer and non-cancer diagnoses receiving specialist palliative care: A retrospective cohort study. Palliat. Med. (IF 4.4) Pub Date : 2023-07-14 Michael Bonares,Kalli Stillos,Lise Huynh,Debbie Selby
BACKGROUND Patients with and without cancer are frequently hospitalized, and have specialist palliative care needs. In-hospital mortality can serve as a quality indicator of acute care. Trends in acute care outcomes have not previously been evaluated in patients with confirmed specialist palliative care needs or between diagnostic groups. AIM To compare trends in discharge location between hospitalized
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'It breaks a narrative of paramedics, that we're lifesavers': A qualitative study of health professionals', bereaved family members' and carers' perceptions and experiences of palliative paramedicine. Palliat. Med. (IF 4.4) Pub Date : 2023-07-14 Madeleine L Juhrmann,Phyllis N Butow,Cara M Platts,Paul Simpson,Mark Boughey,Josephine M Clayton
BACKGROUND Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. AIM To elicit paramedics'
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A rapid umbrella review of the literature surrounding the provision of patient-centred end-of-life care. Palliat. Med. (IF 4.4) Pub Date : 2023-07-13 Kostas Hatzikiriakidis,Darshini Ayton,Helen Skouteris,Luke Patitsas,Kelsay Smith,Anjali Dhulia,Peter Poon
BACKGROUND Patients have reported a broad range of unmet needs in their receipt of clinical care at the end of life. Therefore, enhancing the quality of end-of-life care through patient-centred healthcare interactions is warranted. AIM The aim of this rapid umbrella review was to synthesise previous literature reviews that have examined: (1) patient preferences for patient-centred end-of-life care;
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An evidence-base for the implementation of hospital-based palliative care programs in routine cancer practice: A systematic review. Palliat. Med. (IF 4.4) Pub Date : 2023-07-08 Farwa Rizvi,Helen Elizabeth Wilding,Nicole M Rankin,Roslyn Le Gautier,Lorna Gurren,Vijaya Sundararajan,Kylee Bellingham,Joyce Chua,Gregory B Crawford,Anna K Nowak,Brian Le,Geoff Mitchell,Sue-Anne McLachlan,Tanara Vieira Sousa,Robyn Hudson,Maarten IJzerman,Anna Collins,Jennifer Philip
BACKGROUND Despite global support, there remain gaps in the integration of early palliative care into cancer care. The methods of implementation whereby evidence of benefits of palliative care is translated into practice deserve attention. AIM To identify implementation frameworks utilised in integrated palliative care in hospital-based oncology services and to describe the associated enablers and
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What makes the palliative care initial encounter meaningful? A descriptive study with patients with cancer, family carers and palliative care professionals. Palliat. Med. (IF 4.4) Pub Date : 2023-07-08 Blanca Goni-Fuste,Denise Pergolizzi,Cristina Monforte-Royo,Joaquim Julià-Torras,Andrea Rodríguez-Prat,Iris Crespo
BACKGROUND The palliative care initial encounter can have a positive impact on the quality of life of patients and family carers if it proves to be a meaningful experience. A better understanding of what makes the encounter meaningful would reinforce the provision of person-centred, quality palliative care. AIM To explore the expectations that patients with cancer, family carers and palliative care
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'Life became slow down': A descriptive qualitative study of the experiences of cancer-related fatigue amongst people with advanced lung cancer. Palliat. Med. (IF 4.4) Pub Date : 2023-07-03 Huiyuan Li,Marques Shek Nam Ng,Xiaohuan Jin,Cho Lee Wong
BACKGROUND Cancer-related fatigue is a complex multidimensional concept. However, little is known about the experience of cancer-related fatigue in people with advanced lung cancer. How they emotionally react to and cope with the experience of cancer-related fatigue according to cultural influences has not been extensively explored. AIM To explore the experience of cancer-related fatigue, its impacts
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Telehealth requires improved evidence to achieve its full potential in palliative care. Palliat. Med. (IF 4.4) Pub Date : 2023-07-01 Amara Callistus Nwosu