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BMC Palliative Care

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https://read.qxmd.com/read/31092227/who-provides-care-in-the-last-year-of-life-a-description-of-care-networks-of-community-dwelling-older-adults-in-the-netherlands
#1
Femmy M Bijnsdorp, H Roeline W Pasman, Anneke L Francke, Natalie Evans, Carel F W Peeters, Marjolein I Broese van Groenou
BACKGROUND: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. METHODS/DESIGN: We used data from participants of the Longitudinal Aging Study Amsterdam (2001-2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146)...
May 15, 2019: BMC Palliative Care
https://read.qxmd.com/read/31088442/living-at-the-end-of-life-experience-of-time-of-patients-with-cancer
#2
Jordy Johannes Eduardus Rovers, Elze Jantien Knol, Jelte Pieksma, Wytse Nienhuis, Anne Barbara Wichmann, Yvonne Engels
BACKGROUND: The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a better understanding of the experience of time of patients with limited time left, could help to recognize if and how these patients can have a more meaningful use of time...
May 14, 2019: BMC Palliative Care
https://read.qxmd.com/read/31027498/palliative-care-for-patients-with-motor-neurone-disease-and-their-bereaved-carers-a-qualitative-study
#3
Clare Mc Veigh, Colette Donaghy, Briege Mc Laughlin, Alison Dick, Kiran Kaur, John Mc Conville, Max Watson
BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care...
April 26, 2019: BMC Palliative Care
https://read.qxmd.com/read/30999910/challenges-in-a-six-phase-process-of-questionnaire-adaptation-findings-from-the-french-translation-of-the-integrated-palliative-care-outcome-scale
#4
Anca-Cristina Sterie, Mathieu Bernard
BACKGROUND: The Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solve them, and discuss the implications that adaptation may have on the validity and reliability of a questionnaire. METHODS: The adaptation of IPOS consisted of six phases: (i) literature review and interviews with target population; (ii) forward translation to French; (iii) backward translation to English; (iv) Expert Review; (v) cognitive interviews with target population; (vi) final review...
April 18, 2019: BMC Palliative Care
https://read.qxmd.com/read/30979368/towards-appropriate-information-provision-for-and-decision-making-with-patients-with-limited-health-literacy-in-hospital-based-palliative-care-in-western-countries-a-scoping-review-into-available-communication-strategies-and-tools-for-healthcare-providers
#5
Janneke Noordman, Liesbeth van Vliet, Menno Kaunang, Maria van den Muijsenbergh, Gudule Boland, Sandra van Dulmen
BACKGROUND: Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care...
April 12, 2019: BMC Palliative Care
https://read.qxmd.com/read/30979361/an-online-international-comparison-of-thresholds-for-triggering-a-negative-response-to-the-surprise-question-a-study-protocol
#6
Nicola White, Linda Oostendorp, Victoria Vickerstaff, Christina Gerlach, Yvonne Engels, Maud Maessen, Christopher Tomlinson, Johan Wens, Bert Leysen, Guido Biasco, Sofia Zambrano, Steffen Eychmüller, Christina Avgerinou, Rabih Chattat, Giovanni Ottoboni, Carel Veldhoven, Patrick Stone
BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions...
April 9, 2019: BMC Palliative Care
https://read.qxmd.com/read/30953487/multicentre-analysis-of-intensity-of-care-at-the-end-of-life-in-patients-with-advanced-cancer-combining-health-administrative-data-with-hospital-records-variations-in-practice-call-for-routine-quality-evaluation
#7
Isabelle Colombet, Carole Bouleuc, Alain Piolot, Aurélie Vilfaillot, Hélène Jaulmes, Sabine Voisin-Saltiel, François Goldwasser, Pascale Vinant
BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC). METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area...
April 5, 2019: BMC Palliative Care
https://read.qxmd.com/read/30953485/self-efficacy-for-coping-utility-of-the-cancer-behavior-inventory-italian-for-use-in-palliative-care
#8
Samantha Serpentini, Paola Del Bianco, Andrea Chirico, Thomas V Merluzzi, Rosalba Martino, Fabio Lucidi, Gian Luca De Salvo, Leonardo Trentin, Eleonora Capovilla
BACKGROUND: Newer models of palliative and supportive cancer care view the person as an active agent in managing physical and psychosocial challenges. Therefore, personal efficacy is an integral part of this model. Due to the lack of instruments in Italian to assess coping self-efficacy, the present study included the translation and validation of the Italian version of the Cancer Behavior Inventory-Brief (CBI-B/I) and an initial analysis of the utility of self-efficacy for coping in an Italian sample of palliative care patients...
April 5, 2019: BMC Palliative Care
https://read.qxmd.com/read/30947725/how-to-come-to-terms-with-facing-death-a-qualitative-study-examining-the-experiences-of-patients-with-terminal-cancer
#9
Ayumi Kyota, Kiyoko Kanda
BACKGROUND: Cancer patients who have reached the terminal stage despite attempts at treatment are likely to experience various problems, particularly as they encounter increasing difficulty in doing what they were able to do easily, and their physical symptoms increase as the disease advances. The purpose of this study is to explore how terminal cancer patients who have not clearly expressed a depressed mood or intense grief manage their feelings associated with anxiety and depression...
April 4, 2019: BMC Palliative Care
https://read.qxmd.com/read/30943951/recommendations-on-priorities-for-integrated-palliative-care-transparent-expert-consultation-with-international-leaders-for-the-insup-c-project
#10
Sheila Payne, Sean Hughes, Joann Wilkinson, Jeroen Hasselaar, Nancy Preston
BACKGROUND: The World Health Organisation (WHO) endorses integrated palliative care which has a significant impact on quality of life and satisfaction with care. Effective integration between hospices, palliative care services, hospitals and primary care services are required to support patients with palliative care needs. Studies have indicated that little is known about which aspects are regarded as most important and should be priorities for international implementation. The Integrated Palliative Care in cancer and chronic conditions (InSup-C) project, aimed to investigate integrated practices in Europe and to formulate requirements for effective palliative care integration...
April 3, 2019: BMC Palliative Care
https://read.qxmd.com/read/30922276/optimal-treatment-of-opioid-induced-constipation-in-daily-clinical-practice-an-observational-study
#11
Elisabeth C W Neefjes, Hanneke van der Wijngaart, Maurice J D L van der Vorst, Diederik Ten Oever, Hans J van der Vliet, Aart Beeker, Christiaan A Rhodius, Hendrik P van den Berg, Johannes Berkhof, Henk M W Verheul
BACKGROUND: Opioids are prescribed in over 40% of patients with advanced cancer, but side effects occur frequently. In this study we evaluated the development and treatment of opioid induced constipation (OIC), and OIC resolving effect of methylnaltrexone for different opioid subtypes in daily clinical practice. METHODS: Patients with cancer using opioids were included in a retrospective chart analysis. Baseline characteristics, data on opioid use, laxative use, and OIC were collected...
March 29, 2019: BMC Palliative Care
https://read.qxmd.com/read/30909901/multiple-and-multidimensional-life-transitions-in-the-context-of-life-limiting-health-conditions-longitudinal-study-focussing-on-perspectives-of-young-adults-families-and-professionals
#12
Divya Jindal-Snape, Bridget Johnston, Jan Pringle, Timothy B Kelly, Rosalind Scott, Libby Gold, Raymond Dempsey
BACKGROUND: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group's perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time...
March 25, 2019: BMC Palliative Care
https://read.qxmd.com/read/30904024/palliative-radiotherapy-near-the-end-of-life
#13
Susan Y Wu, Lisa Singer, Lauren Boreta, Michael A Garcia, Shannon E Fogh, Steve E Braunstein
BACKGROUND: A significant proportion of patients with advanced cancer undergo palliative radiotherapy (RT) within their last 30 days of life. This study characterizes palliative RT at our institution and aims to identify patients who may experience limited benefit from RT due to imminent mortality. METHODS: Five hundred and-eighteen patients treated with external beam RT to a site of metastatic disease between 2012 and 2016 were included. Mann-Whitney U and chi-squared tests were used to identify factors associated with RT within 30 days of death (D30 RT)...
March 23, 2019: BMC Palliative Care
https://read.qxmd.com/read/30898130/the-significance-of-gratitude-for-palliative-care-professionals-a-mixed-method-protocol
#14
Maria Aparicio, Carlos Centeno, María Arantzamendi
BACKGROUND: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation...
March 21, 2019: BMC Palliative Care
https://read.qxmd.com/read/30849968/psychometric-properties-of-the-chinese-mainland-version-of-the-palliative-care-spiritual-care-competency-scale-pcsccs-m-in-nursing-a-cross-sectional-study
#15
Yanli Hu, Fan Li, Jeng-Fong Chiou
BACKGROUND: Spiritual care competencies are among the primary professional skills that enable best practices in nursing. Assessing these competencies and identifying those that are insufficient are important tasks. The traditional Chinese version of the Palliative Care Spiritual Care Competency Scale (PCSCCS) used in Taiwan is a well-validated tool to measure palliative caregivers' competencies in providing spiritual care. However, whether this scale is valid and reliable for use with nurses in other health-care contexts is unknown...
March 8, 2019: BMC Palliative Care
https://read.qxmd.com/read/30845931/discussing-end-of-life-wishes-the-impact-of-community-interventions
#16
Katharine Abba, Mari Lloyd-Williams, Siobhan Horton
BACKGROUND: Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well. METHODS: A series of presentations and workshops (the intervention) were delivered to community groups and people working within health and social care. Participants were invited to complete a three-stage follow-up survey at Baseline, Post intervention and at three months' follow-up...
March 7, 2019: BMC Palliative Care
https://read.qxmd.com/read/30841925/patient-experiences-of-nurse-facilitated-advance-care-planning-in-a-general-practice-setting-a-qualitative-study
#17
Hilary Miller, Janice Tan, Josephine M Clayton, Anne Meller, Oshana Hermiz, Nicholas Zwar, Joel Rhee
BACKGROUND: Advance care planning (ACP) can offer benefits to patients and their families, especially when delivered in outpatient settings, but uptake remains low. Common barriers for health professionals include a perceived lack of time and adequate training, experience, and confidence in conducting ACP. Patient-reported barriers include a lack of awareness of ACP or discomfort initiating or engaging in discussions about end-of-life. METHODS: We aimed to explore patients' perspectives of an ACP intervention designed to address common barriers to uptake in the general practice setting...
March 6, 2019: BMC Palliative Care
https://read.qxmd.com/read/30825878/assigned-nurses-and-a-professional-relationship-a-qualitative-study-of-copd-patients-perspective-on-a-new-palliative-outpatient-structure-named-captain
#18
D G Bove, M O Jellington, M Lavesen, K Marså, S F Herling
BACKGROUND: Little is known of how to organize non-malign palliative care, and existing knowledge show that patients with COPD live with unmet palliative needs and low quality of life. With the intent to improve palliative care for patients with COPD, we changed the structure of our outpatient clinic from routine visits by a pulmonary specialist to a structure where each patient was assigned a nurse, offered annual advance care planning dialogues, and ad hoc pulmonary specialist visits...
March 2, 2019: BMC Palliative Care
https://read.qxmd.com/read/30823877/factor-structure-of-the-quality-of-children-s-palliative-care-instrument-qcpci-when-complete-by-parents-of-children-with-cancer
#19
Kimberley Widger, Sarah Brennenstuhl, Jacqueline Duc, Ann Tourangeau, Adam Rapoport
BACKGROUND: Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers' perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness. METHODS: Four subscales were included in the analysis: Connect with Families, Involve Parents, Share Information Among Health Professionals, Support Siblings...
March 1, 2019: BMC Palliative Care
https://read.qxmd.com/read/30813937/healthcare-professionals-views-of-palliative-care-for-american-war-veterans-with-non-malignant-respiratory-disease-living-in-a-rural-area-a-qualitative-study
#20
Clare Mc Veigh, Joanne Reid, Paula Carvalho
BACKGROUND: Chronic lung diseases, such as COPD, are a growing health concern within the veteran population. Palliative care programs have mainly focused on the needs of people with malignant disease in the past, however the majority of those worldwide needing palliative care have a non-malignant diagnosis. Additionally, palliative care provision can often be fragmented and varied dependent upon a patient's geographical location. This study aimed to explore palliative care provision for veterans with non-malignant respiratory disease, and their family carers, living in a rural area of America...
February 27, 2019: BMC Palliative Care
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