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BMC Palliative Care

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https://www.readbyqxmd.com/read/28893215/translation-and-cultural-adaptation-of-the-integrated-palliative-care-outcome-scale-including-cognitive-interviewing-with-patients-and-staff
#1
Ingela Beck, Ulrika Olsson Möller, Marlene Malmström, Anna Klarare, Henrik Samuelsson, Carina Lundh Hagelin, Birgit Rasmussen, Carl Johan Fürst
BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care...
September 11, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28877699/honoring-the-voices-of-bereaved-caregivers-a-metasummary-of-qualitative-research
#2
Lorraine Holtslander, Sharon Baxter, Kelly Mills, Sarah Bocking, Tina Dadgostari, Wendy Duggleby, Vicky Duncan, Peter Hudson, Agatha Ogunkorode, Shelley Peacock
BACKGROUND: Family caregiving in the context of advanced disease in particular, can be physically and emotionally taxing. Caregivers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion will develop negative psychological and social outcomes. Although some research has attended to the bereavement experiences of family caregivers who had cared for a person requiring palliative care, a comprehensive qualitative understanding of the impact of caregiving on bereavement has not been articulated...
September 6, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28874150/what-are-families-most-grateful-for-after-receiving-palliative-care-content-analysis-of-written-documents-received-a-chance-to-improve-the-quality-of-care
#3
María Aparicio, Carlos Centeno, José Miguel Carrasco, Antonio Barbosa, María Arantzamendi
BACKGROUND: Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. METHODS: Qualitative exploratory study based on documentary analysis...
September 6, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28870189/can-digital-stories-go-where-palliative-care-research-has-never-gone-before-a-descriptive-qualitative-study-exploring-the-application-of-an-emerging-public-health-research-method-in-an-indigenous-palliative-care-context
#4
Lisa Williams, Merryn Gott, Tess Moeke-Maxwell, Stella Black, Shuchi Kothari, Sarina Pearson, Tessa Morgan, Matua Rawiri Wharemate, Whaea Whio Hansen
BACKGROUND: The World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. This is especially imperative for Indigenous populations and other groups underrepresented in the palliative care evidence-base. Digital storytelling (DST) offers the potential to be one such method...
September 4, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28859648/engaging-patients-and-families-to-create-a-feasible-clinical-trial-integrating-palliative-and-heart-failure-care-results-of-the-enable-chf-pc-pilot-clinical-trial
#5
Marie Bakitas, J Nicholas Dionne-Odom, Salpy V Pamboukian, Jose Tallaj, Elizabeth Kvale, Keith M Swetz, Jennifer Frost, Rachel Wells, Andres Azuero, Konda Keebler, Imatullah Akyar, Deborah Ejem, Karen Steinhauser, Tasha Smith, Raegan Durant, Alan T Kono
BACKGROUND: Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). METHODS: We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U...
August 31, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28854923/validation-of-a-modified-voices-survey-to-measure-end-of-life-care-quality-the-caregivervoice-survey
#6
Hsien Seow, Daryl Bainbridge, Melissa Brouwers, Gregory Pond, John Cairney
BACKGROUND: Measuring the care experience at end-of-life (EOL) to inform quality improvement is a priority in many countries. We validated the CaregiverVoice survey, a modified version of the VOICES questionnaire, completed by bereaved caregivers to capture perceptions of care received in the last three months of a patient's life. METHODS: We conducted a retrospective survey of bereaved caregivers representing palliative care patients who died in a residential hospice and/or received palliative homecare in Ontario, Canada...
August 30, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28851337/which-online-format-is-most-effective-for-assisting-baby-boomers-to-complete-advance-directives-a-randomised-controlled-trial-of-email-prompting-versus-online-education-module
#7
Sandra L Bradley, Jennifer J Tieman, Richard J Woodman, Paddy A Phillips
BACKGROUND: Completion of Advance Directives (ADs), being financial and healthcare proxy or instructional documents, is relatively uncommon in Australia. Efforts to increase completion rates include online education and prompting which past literature suggests may be effective. The aim of this randomized controlled trial was to assess computer-based online AD information and email prompting for facilitating completion of ADs by Australian Baby Boomers (b.1946-1965) as well as factors which may impede or assist completion of these documents by this generation when using the online environment...
August 29, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28818069/path-modeling-of-knowledge-attitude-and-practice-toward-palliative-care-consultation-service-among-taiwanese-nursing-staff-a-cross-sectional-study
#8
Hsueh-Hsing Pan, Hsiu-Ling Shih, Li-Fen Wu, Yu-Chun Hung, Chi-Ming Chu, Kwua-Yun Wang
BACKGROUND: The Taiwanese government has promoted palliative care consultation services (PCCS) to support terminally ill patients in acute ward settings to receive palliative care since 2005. Such an intervention can enhance the quality of life and dignity of terminally ill patients. However, research focusing on the relationship between the knowledge, attitude and practice of a PCCS using path modelling in nursing staff is limited. Therefore, the aim of this study was to elucidate the effect of path modeling on the knowledge, attitude and practice toward PCCS in Taiwanese nursing staff...
August 17, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28814321/relatives-perceived-quality-of-palliative-care-comparisons-between-care-settings-in-which-patients-die
#9
Dolf de Boer, Jolien M Hofstede, Anke J E de Veer, Natasja J H Raijmakers, Anneke L Francke
BACKGROUND: Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. METHODS: Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care...
August 16, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28806952/socio-cultural-contexts-of-end-of-life-conversations-and-decisions-bereaved-family-cancer-caregivers-retrospective-co-constructions
#10
Jennifer Nyawira Githaiga, Leslie Swartz
BACKGROUND: End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya...
August 14, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28797262/when-a-parent-dies-a-systematic-review-of-the-effects-of-support-programs-for-parentally-bereaved-children-and-their-caregivers
#11
Ann-Sofie Bergman, Ulf Axberg, Elizabeth Hanson
BACKGROUND: The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research. METHODS: The review's inclusion criteria were comparative studies with samples of parentally bereaved children...
August 10, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28705196/better-palliative-care-for-people-with-a-dementia-summary-of-interdisciplinary-workshop-highlighting-current-gaps-and-recommendations-for-future-research
#12
Siobhán Fox, Carol FitzGerald, Karen Harrison Dening, Kate Irving, W George Kernohan, Adrian Treloar, David Oliver, Suzanne Guerin, Suzanne Timmons
BACKGROUND: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. MAIN BODY: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016...
July 14, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28705157/ward-social-workers-views-of-what-facilitates-or-hinders-collaboration-with-specialist-palliative-care-team-social-workers-a-grounded-theory
#13
Janice Firn, Nancy Preston, Catherine Walshe
BACKGROUND: Inpatient, generalist social workers in discharge planning roles work alongside specialist palliative care social workers to care for patients, often resulting in two social workers being concurrently involved in the same patient's care. Previous studies identifying components of effective collaboration, which impacts patient outcomes, care efficiency, professional job satisfaction, and healthcare costs, were conducted with nurses and physicians but not social workers. This study explores ward social workers' perceptions of what facilitates or hinders collaboration with palliative care social workers...
July 14, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28705181/the-impact-of-antiretroviral-therapy-on-symptom-burden-among-hiv-outpatients-with-low-cd4-count-in-rural-uganda-nested-longitudinal-cohort-study
#14
Katie Wakeham, Richard Harding, Jonathan Levin, Rosalind Parkes-Ratanshi, Anatoli Kamali, David G Lalloo
BACKGROUND: Individuals with HIV have a high prevalence of physical and psychological symptoms throughout their disease course. Despite the clinical and public health implications of unresolved pain and symptoms, little is known about the effect of anti-retroviral therapy (ART) on these outcomes. This study aimed to assess the impact on symptom burden for the year after ART initiation in individuals with a CD4 count <200 cells/uL in Uganda. METHODS: HIV-infected, ART-naıve adults referred from voluntary testing and counseling services in rural Uganda for enrollment into a randomized controlled trial to test fluconazole as primary prophylaxis against cryptococcal disease were invited to complete the Memorial Symptom Assessment Scale-Short Form (MSAS-SF) prior to commencing ART and at two subsequent follow up visits...
July 13, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28693466/the-provision-of-generalist-and-specialist-palliative-care-for-patients-with-non-malignant-respiratory-disease-in-the-north-and-republic-of-ireland-a-qualitative-study
#15
Clare Mc Veigh, Joanne Reid, Philip Larkin, Sam Porter, Peter Hudson
BACKGROUND: Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland...
July 11, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28693527/social-workers-involvement-in-advance-care-planning-a-systematic-narrative-review
#16
Chong-Wen Wang, Cecilia L W Chan, Amy Y M Chow
BACKGROUND: Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning...
July 10, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28693520/strengthening-primary-health-care-teams-with-palliative-care-leaders-protocol-for-a-cluster-randomized-clinical-trial
#17
Joan Llobera, Noemí Sansó, Amador Ruiz, Merce Llagostera, Estefania Serratusell, Carlos Serrano, María Luisa Martín Roselló, Enric Benito, Eusebio J Castaño, Alfonso Leiva
BACKGROUND: The objective of the Balearic Islands Palliative Care (PC) Program is to improve the quality of PC through a shared model consisting of primary health care professionals, home-based PC teams, and PC units in hospitals. According to the World Health Organization (WHO), patients with advanced cancer and other terminal diseases benefit from early identification and proactive PC. We will evaluate the effectiveness of an intervention in which a PC leader is established in the primary health care center, and assess the effect of this intervention on the early identification of patients in need of PC, the efficient use of health care services, and direct health care costs...
July 10, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28683799/mindfulness-and-compassion-oriented-practices-at-work-reduce-distress-and-enhance-self-care-of-palliative-care-teams-a-mixed-method-evaluation-of-an-on-the-job-program
#18
Claudia L Orellana-Rios, Lukas Radbruch, Martina Kern, Yesche U Regel, Andreas Anton, Shane Sinclair, Stefan Schmidt
BACKGROUND: Maintaining a sense of self-care while providing patient centered care, can be difficult for practitioners in palliative medicine. We aimed to pilot an "on the job" mindfulness and compassion-oriented meditation training for interdisciplinary teams designed to reduce distress, foster resilience and strengthen a prosocial motivation in the clinical encounter. METHODS: Our objective was to explore the feasibility and effectiveness of this newly developed training...
July 6, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28673300/volunteer-navigation-partnerships-piloting-a-compassionate-community-approach-to-early-palliative-care
#19
Barbara Pesut, Wendy Duggleby, Grace Warner, Konrad Fassbender, Elisabeth Antifeau, Brenda Hooper, Madeleine Greig, Kelli Sullivan
BACKGROUND: A compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections. METHODS: Volunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year...
July 3, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28637450/health-care-use-and-costs-at-the-end-of-life-a-comparison-of-elderly-australian-decedents-with-and-without-a-cancer-history
#20
Rebecca Reeve, Preeyaporn Srasuebkul, Julia M Langton, Marion Haas, Rosalie Viney, Sallie-Anne Pearson
BACKGROUND: There is limited population-level research on end-of-life care in Australia that considers health care use and costs across hospital and community sectors. The aim of this study was to quantify health care use and costs in the last 6 months of life in a cohort of elderly Australian decedents and to examine the factors associated with end-of-life resource use and costs. METHODS: A retrospective cohort study using routinely collected health data from Australian Government Department of Veterans' Affairs clients...
June 21, 2017: BMC Palliative Care
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