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BMC Palliative Care

Natasha Smallwood, Thomas Moran, Michelle Thompson, Peter Eastman, Brian Le, Jennifer Philip
BACKGROUND: The Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases. This study aimed to explore patients' and carers' experiences of integrated palliative care and identify valued aspects of care. METHODS: All current patients of the integrated service and their carers were invited to complete a confidential questionnaire by post or with an independent researcher...
January 19, 2019: BMC Palliative Care
Carole Parsons, Sarah Gamble
BACKGROUND: There is considerable uncertainty surrounding the medications used to delay the progression of dementia, especially their long-term efficacy and when to withdraw treatment with these agents. Current research regarding the optimal use of antidementia medication is limited, contributing to variability in practice guidelines and in clinicians' prescribing practices. Little is currently known about the experiences encountered by caregivers of people with dementia after antidementia medication is withdrawn...
January 17, 2019: BMC Palliative Care
Miwa Hinata, Kikuko Miyazaki, Natsuko Kanazawa, Kumiko Kito, Sachiko Kiyoto, Manako Konda, Akira Kuriyama, Hiroko Mori, Sachiko Nakaoka, Akiko Okumura, Hironobu Tokumasu, Takeo Nakayama
BACKGROUND: Palliative care was a priority issue in the Cancer Control Act enacted in 2007 in Japan, and this has resulted in efforts being made toward educational goals in clinical settings. An investigation of how descriptions of palliative care for the treatment of cancer have changed in clinical practice guidelines (CPGs) could be expected to provide a better understanding of palliative care-related decision-making. This study aimed to identify trends in descriptions of palliative care in cancer CPGs in Japan before and after enactment of the Cancer Control Act...
January 12, 2019: BMC Palliative Care
Kahren M White, Meera R Agar, David C Currow
BACKGROUND: The aim of the study was to assess four evidence-based assessments utilising exercise challenges that induce breathlessness, each with progressively less demanding levels of exertion, which can be tailored to people with a range of functional capabilities in the setting of advanced cancer for research studies. Functional cut off points for these assessments have not previously been defined. METHODS: A cross sectional study of four exercise tests attempted by all participants: 6 min walk test (6MWT); (derived) 2 min walk test (2MWT); arm exercises; and reading numbers aloud...
January 10, 2019: BMC Palliative Care
Lisa E Harman, Dawn M Guthrie, Joachim Cohen, Anja Declercq, Kathryn Fisher, Donna Goodridge, John P Hirdes, Hsien Seow
BACKGROUND: Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment. METHODS: Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients...
January 9, 2019: BMC Palliative Care
Kirsten Evenblij, Maud Ten Koppel, Tinne Smets, Guy A M Widdershoven, Bregje D Onwuteaka-Philipsen, H Roeline W Pasman
BACKGROUND: End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff's lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication...
January 8, 2019: BMC Palliative Care
Claire Vitale, Alexandre de Nonneville, Marie Fichaux, Sebastien Salas
BACKGROUND: For the year 2018, the French government plans a revision of bioethics laws, including certainly the recent Claeys-Leonetti law introducing the right to deep and continuous sedation at the request of palliative patients and prohibiting euthanasia for end-of-life patients. Because there is no published data on medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law, we believe this report may give insight into physicians' decision making, into the role of criteria for prudent practice, and thus contribute to the bioethical debate...
January 8, 2019: BMC Palliative Care
Rana Sagha Zadeh, Elizabeth Capezuti, Paul Eshelman, Nicole Woody, Jennifer Tiffany, Ana C Krieger
BACKGROUND: Sleep disturbance is a significant issue, particularly for patients with advanced terminal illness. Currently, there are no practice-based recommended approaches for managing sleep and circadian disruptions in this population. To address this gap, a cross-sectional focus group study was performed engaging 32 staff members at four hospices/end-of-life programs in three demographically diverse counties in New York State. METHODS: Participants responded to structured open-ended questions...
December 22, 2018: BMC Palliative Care
John A Woods, Claire E Johnson, Hanh T Ngo, Judith M Katzenellenbogen, Kevin Murray, Sandra C Thompson
BACKGROUND: Rapid effective responsiveness to patient needs is pivotal to high quality palliative care. Aboriginal and Torres Strait Islander (Indigenous) people are susceptible to life-limiting illnesses at younger ages than other Australians and experience inequity of health service provision. The Palliative Care Outcomes Collaboration collects Australia-wide health service data on patient care, and has established performance benchmarks for specialist palliative care services. We investigated whether the benchmark for timely commencement of palliative care episodes (occurrence of delay >1 day after being designated 'ready for care' in <10% instances) is being met for Indigenous Australians in participating services...
December 22, 2018: BMC Palliative Care
J Diffin, G Ewing, G Harvey, G Grande
BACKGROUND: An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework. This study identifies how the PARIHS component of 'facilitation' and its interplay with the components of 'context' and 'evidence' affect implementation success...
December 20, 2018: BMC Palliative Care
Outi M Hirvonen, Jenni E Alalahti, Kari J Syrjänen, Sirkku M Jyrkkiö
BACKGROUND: Until recently, palliative care (PC) resources in Finland have been sparse. To meet the increasing need for PC an end-of-life (EOL) care project has been ongoing in South Western Finland since 2012, and in 2015, a weekday palliative outpatient clinic was established in Turku University Hospital (TUH). The aim of this study was to explore the effect of the project and the PC clinic on the management practices of EOL cancer patients attending the Emergency Department (ED) of TUH from 2013 to 2016...
December 17, 2018: BMC Palliative Care
Vanessa Peck, Sabira Valiani, Peter Tanuseputro, Sunita Mulpuru, Kwadwo Kyeremanteng, Edward Fitzgibbon, Alan Forster, Daniel Kobewka
BACKGROUND: Patients who engage in Advance Care Planning (ACP) are more likely to get care consistent with their values. We sought to determine the barriers and facilitators to ACP engagement after discharge from hospital. METHODS: Prior to discharge from hospital eligible patients received a standardized conversation about prognosis and ACP. Each patient was given an ACP workbook and asked to complete it over the following four weeks. We included frail elderly patients with a high risk of death admitted to general internal medicine wards at a tertiary care academic teaching hospital...
December 5, 2018: BMC Palliative Care
Maja Holm, Sandra Doveson, Olav Lindqvist, Agneta Wennman-Larsen, Per Fransson
BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments...
December 3, 2018: BMC Palliative Care
Sam Porter, Tracey McConnell, Lisa Graham-Wisener, Joan Regan, Miriam McKeown, Jenny Kirkwood, Mike Clarke, Evie Gardner, Saskie Dorman, Kerry McGrillen, Joanne Reid
BACKGROUND: Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. METHODS: This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool...
November 27, 2018: BMC Palliative Care
Daphne Sze Ki Cheung, Ken Hok Man Ho, Tsz Fung Cheung, Simon Ching Lam, Mimi Mun Yee Tse
BACKGROUND: Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. Previous studies showed different patterns of AG between spousal and adult children caregivers of people with dementia (PWD) at different stages; however, the levels of such grief are not yet compared. The findings in Western studies are very limited, and inconsistencies have also been found in Asian studies. METHODS: One hundred and eight primary caregivers (54 spousal and 54 adult children) of community-dwelling PWD were recruited from elderly community services sectors in Hong Kong, China through quota sampling...
November 20, 2018: BMC Palliative Care
S Aebischer Perone, R Nikolic, R Lazic, E Dropic, T Vogel, B Lab, S Lachat, P Hudelson, C Matis, S Pautex, F Chappuis
BACKGROUND: Many terminally ill patients in Bosnia-Herzegovina (BiH) fail to receive needed medical attention and social support. In 2016 a primary healthcare centreer (PHCC) in Doboj (BiH) requested the methodological and technical support of a local partner (Fondacija fami) and the Geneva University Hospitals to address the needs of terminally ill patients living at home. In order to design acceptable, affordable and sustainable solutions, we involved patients and their families in exploring needs, barriers and available resources...
November 19, 2018: BMC Palliative Care
Ashleigh E Butler, Helen Hall, Beverley Copnell
BACKGROUND: As understandings of the impacts of end-of-life experiences on parents' grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents' experiences of the research process are limited within the current literature. METHODS: We aimed to explore bereaved parents' experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit...
November 7, 2018: BMC Palliative Care
Anastasia K Kalpakidou, Chris Todd, Vaughan Keeley, Jane Griffiths, Karen Spencer, Victoria Vickerstaff, Rumana Z Omar, Patrick Stone
After publication, the authors noticed some minor errors in "Nested qualitative sub-study" section, first paragraph of the section, page 7 of the published article.
November 3, 2018: BMC Palliative Care
Joseph M Sawyer, Rahul Asgr, Florence N Todd Fordham, John D H Porter
BACKGROUND: The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives...
October 31, 2018: BMC Palliative Care
Anke J E de Veer, Barbara Stringer, Berno van Meijel, Renate Verkaik, Anneke L Francke
BACKGROUND: People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. METHODS: Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands...
October 24, 2018: BMC Palliative Care
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