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Palliative caregiver

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https://www.readbyqxmd.com/read/28642213/development-of-a-web-based-intervention-for-addressing-distress-in-caregivers-of-patients-receiving-stem-cell-transplants-formative-evaluation-with-stakeholder-interviews-and-focus-groups
#1
Nicole Amoyal Pensak, Tanisha Joshi, Teresa Simoneau, Kristin Kilbourn, Alaina Carr, Jean Kutner, Mark L Laudenslager
BACKGROUND: Caregivers of cancer patients experience significant burden and distress including depression and anxiety. We previously demonstrated the efficacy of an eight session, in-person, one-on-one stress management intervention to reduce distress in caregivers of patients receiving allogeneic hematopoietic stem cell transplants (allo-HSCT). OBJECTIVE: The objective of this study was to adapt and enhance the in-person caregiver stress management intervention to a mobilized website (eg, tablet, smartphone, or computer-based) for self-delivery in order to enhance dissemination to caregiver populations most in need...
June 22, 2017: JMIR Research Protocols
https://www.readbyqxmd.com/read/28635585/the-meaning-and-experience-of-bereavement-support-a-qualitative-interview-study-of-bereaved-family-caregivers
#2
Emma Kirby, Katherine Kenny, Alex Broom, John MacArtney, Phillip Good
OBJECTIVE: Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced...
June 21, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28631493/awareness-and-misperceptions-of-hospice-and-palliative-care-a-population-based-survey-study
#3
Ariel Shalev, Veerawat Phongtankuel, Elissa Kozlov, Megan Johnson Shen, Ronald D Adelman, M C Reid
BACKGROUND: Despite the documented benefits of palliative and hospice care on improving patients' quality of life, these services remain underutilized. Multiple factors limit the utilization of these services, including patients' and caregivers' lack of knowledge and misperceptions. OBJECTIVES: To examine palliative and hospice care awareness, misperceptions, and receptivity among community-dwelling adults. DESIGN: Cross-sectional study. SUBJECTS: New York State residents ≥18 years old who participated in the 2016 Empire State Poll...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28625164/the-effect-of-weekly-specialist-palliative-care-teleconsultations-in-patients-with-advanced-cancer-a-randomized-clinical-trial
#4
Patrick D Hoek, Henk J Schers, Ewald M Bronkhorst, Kris C P Vissers, Jeroen G J Hasselaar
BACKGROUND: Teleconsultation seems to be a promising intervention for providing palliative care to home-dwelling patients; however, its effect on clinically relevant outcome measures remains largely unexplored. Therefore, the purpose of this study was to determine whether weekly teleconsultations from a hospital-based specialist palliative care consultation team (SPCT) improved patient-experienced symptom burden compared to "care as usual". Secondary objectives were to determine the effects of these teleconsultations on unmet palliative care needs, continuity of care, hospital admissions, satisfaction with teleconsultations, and the burden experienced by informal caregivers...
June 19, 2017: BMC Medicine
https://www.readbyqxmd.com/read/28622348/factors-influencing-practitioner-adoption-of-carer-led-assessment-in-palliative-homecare-a-qualitative-study-of-the-use-of-the-carer-support-needs-assessment-tool-csnat
#5
Lynn Austin, Gail Ewing, Gunn Grande
INTRODUCTION: Informal caregivers play a pivotal role in supporting patients approaching the end of life. The Carer Support Needs Assessment Tool (CSNAT) is designed to facilitate person-centred assessment and support through a process that is practitioner-facilitated, but carer-led. This study explored practitioners' experiences of implementing the CSNAT in palliative homecare. METHODS: We conducted qualitative interviews/focus groups with 20 practitioners in one UK hospice homecare service (18 nurses, two healthcare assistants) before and after the implementation of the CSNAT...
2017: PloS One
https://www.readbyqxmd.com/read/28618899/development-of-a-caregiver-reported-measure-to-support-systematic-assessment-of-people-with-dementia-in-long-term-care-the-integrated-palliative-care-outcome-scale-for-dementia
#6
Clare Ellis-Smith, Catherine J Evans, Fliss Em Murtagh, Lesley A Henson, Alice M Firth, Irene J Higginson, Barbara A Daveson
BACKGROUND: Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale-Symptom and Integrated Palliative care Outcome Scale. AIM: To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia...
July 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28612639/finding-paradise-within-how-spirituality-protects-palliative-care-clients-and-caregivers-from-depression
#7
Joy Penman
The aims of this article are to explore the experience of depression among palliative care clients and caregivers, describe the strategies they use in coping with depression, and clarify the role of spirituality in preventing and/or overcoming depression. This article discusses an aspect of the findings of a larger doctoral study that explored the nature of spirituality and spiritual engagement from the viewpoint of individuals with life-limiting conditions and their caregivers. van Manen's phenomenology was used in the study...
June 1, 2017: Journal of Holistic Nursing: Official Journal of the American Holistic Nurses' Association
https://www.readbyqxmd.com/read/28610431/palliative-care-experience-in-the-last-3-months-of-life-a-quantitative-comparison-of-care-provided-in-residential-hospices-hospitals-and-the-home-from-the-perspectives-of-bereaved-caregivers
#8
Daryl Bainbridge, Hsien Seow
OBJECTIVE: This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice. METHODS: A retrospective, observational design using the CaregiverVoice survey with bereaved caregivers of patients in 22 hospices in Ontario, Canada. The survey assessed various dimensions of the patient's care experiences across multiple care settings in the last 3 months of life. RESULTS: A total of 1153 caregivers responded to the survey (44% response rate)...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28607205/brain-injury-and-neurodevelopmental-outcome-in-congenital-heart-disease-a-systematic-review
#9
REVIEW
Mirthe J Mebius, Elisabeth M W Kooi, Catherina M Bilardo, Arend F Bos
CONTEXT: Brain injury during prenatal and preoperative postnatal life might play a major role in neurodevelopmental impairment in infants with congenital heart disease (CHD) who require corrective or palliative surgery during infancy. A systematic review of cerebral findings during this period in relation to neurodevelopmental outcome (NDO), however, is lacking. OBJECTIVE: To assess the association between prenatal and postnatal preoperative cerebral findings and NDO in infants with CHD who require corrective or palliative surgery during infancy...
June 13, 2017: Pediatrics
https://www.readbyqxmd.com/read/28604233/distance-education-methods-are-useful-for-delivering-education-to-palliative-caregivers-a-single-arm-trial-of-an-education-package-palliative-caregivers-education-package
#10
Liz Forbat, Rowena Robinson, Rachel Bilton-Simek, Karemah Francois, Marsha Lewis, Erna Haraldsdottir
BACKGROUND: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. AIM: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). DESIGN: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs...
June 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28602377/end-of-life-care-in-the-treatment-of-heart-failure-in-older-adults
#11
REVIEW
John Arthur McClung
Heart failure presents unique challenges to the clinician who desires to provide excellent and humane care near the end of life. Accurate prediction of mortality in the individual patient is complicated by a chronic disease that is punctuated by recurrent acute episodes and sudden death. Health care providers continue to have difficulty communicating effectively with terminally ill patients and their caregivers regarding end-of-life care preferences, all of which needs to occur earlier rather than later. This article also discusses various means of providing palliative care, and specific issues regarding device therapy, cardiopulmonary resuscitation, and palliative sedation with concurrent discussion of the ethical ramifications and pitfalls of each...
July 2017: Heart Failure Clinics
https://www.readbyqxmd.com/read/28598227/integration-of-a-palliative-care-intervention-into-community-practice-for-lung-cancer-a-study-protocol-and-lessons-learned-with-implementation
#12
Huong Q Nguyen, Thomas Cuyegkeng, Tieu O Phung, Karisa Jahn, Tami Borneman, Mayra Macias, Nora Ruel, Betty Ferrell
BACKGROUND: A notable gap in the evidence base for outpatient palliative care (PC) for cancer is that most trials were conducted in specialized oncology or academic centers with limited translation and further evaluation in "real-world" settings. Health systems are desperate for guidance regarding the most effective and sustainable PC service models. OBJECTIVE: Describe the study protocol to evaluate the dissemination of a previously tested nurse-led PC intervention (PCI) for patients with lung cancer and their family caregiver in community-based settings, lessons learned in adapting and implementing the PCI, and implications for future dissemination-translational efforts Design: Two-group, prospective sequential, quasi-experimental design with Phase 1 (Usual care) followed by Phase 2 (Intervention) setting/subjects...
June 9, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28595437/perceptions-and-types-of-support-coming-from-families-caring-for-patients-suffering-from-advanced-illness-in-kinshasa-democratic-republic-of-congo
#13
Jacques Masumbuku Lofandjola, Ernest Kiswaya Sumaili, Philippe Mairiaux, Jean Petermans
BACKGROUND: Perceptions of families who take care of patients suffering from advanced illness are rarely considered in Kinshasa medical practices; nevertheless, these families are the main actors involved in such care. The objective of this present study was to illustrate, in a Congolese context, the perceptions of families on the care of patients suffering from advanced illness, and to identify the possible aids provided by healthcare facilities. METHODS: A qualitative study was performed among focus groups in six hospitals in Kinshasa...
May 8, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/28593859/european-association-for-neuro-oncology-eano-guidelines-for-palliative-care-in-adults-with-glioma
#14
REVIEW
Andrea Pace, Linda Dirven, Johan A F Koekkoek, Heidrun Golla, Jane Fleming, Roberta Rudà, Christine Marosi, E Le Rhun, Robin Grant, Kathy Oliver, Ingela Oberg, Helen J Bulbeck, Alasdair G Rooney, Roger Henriksson, H Roeline W Pasman, Stefan Oberndorfer, Michael Weller, Martin J B Taphoorn
Patients with glioma present with complex palliative care needs throughout their disease trajectory. The life-limiting nature of gliomas and the presence of specific symptoms related to neurological deterioration necessitate an appropriate and early palliative care approach. The multidisciplinary palliative care task force of the European Association of Neuro-Oncology did a systematic review of the available scientific literature to formulate the best possible evidence-based recommendations for the palliative care of adult patients with glioma, with the aim to reduce symptom burden and improve the quality of life of patients and their caregivers, particularly in the end-of-life phase...
June 2017: Lancet Oncology
https://www.readbyqxmd.com/read/28591975/an-overview-of-home-based-primary-care-learning-from-the-field
#15
Sarah Klein, Martha Hostetter, Douglas McCarthy
ISSUE: Homebound and functionally limited individuals are often unable to access office-based primary care, leading to unmet needs and increased health care spending. GOAL: Show how home-based primary care affects outcomes and costs for Medicare and Medicaid beneficiaries with complex care needs. METHODS: Qualitative synthesis of expert perspectives and the experiences of six case-study sites. FINDINGS AND CONCLUSIONS: Successful home-based primary care practices optimize care by: fielding interdisciplinary teams, incorporating behavioral care and social supports into primary care, responding rapidly to urgent and acute care needs, offering palliative care, and supporting family members and caregivers...
June 2017: Issue Brief of the Commonwealth Fund
https://www.readbyqxmd.com/read/28590165/the-complex-relationship-between-household-income-of-family-caregivers-access-to-palliative-care-services-and-place-of-death-a-national-household-population-survey
#16
Miriam J Johnson, Victoria Allgar, Hong Chen, Laurie Dunn, Una Macleod, David C Currow
BACKGROUND: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. AIM: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. DESIGN: A cross-sectional community household population survey...
June 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28579792/amyotrophic-lateral-sclerosis-improving-care-with-a-multidisciplinary-approach
#17
REVIEW
Anne Hogden, Geraldine Foley, Robert D Henderson, Natalie James, Samar M Aoun
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients' quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice...
2017: Journal of Multidisciplinary Healthcare
https://www.readbyqxmd.com/read/28566103/developing-a-toolkit-to-measure-implementation-of-concurrent-palliative-care-in-rural-community-cancer-centers
#18
Lisa Zubkoff, J Nicholas Dionne-Odom, Maria Pisu, Dilip Babu, Imatullah Akyar, Tasha Smith, Gisella A Mancarella, Lucy Gansauer, Margaret Murray Sullivan, Keith M Swetz, Andres Azuero, Marie A Bakitas
OBJECTIVE: Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a "toolkit" to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers...
June 1, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28561696/using-the-new-asco-clinical-practice-guideline-for-palliative-care-concurrent-with-oncology-care-using-the-team-approach
#19
Cardinale B Smith, Tanyanika Phillips, Thomas J Smith
Palliative care alongside usual oncology care is now recommended by ASCO as the standard of care for any patient with advanced cancer on the basis of multiple randomized trials that show better results with concurrent care than with usual oncology care. Some benefits include better quality of life, better symptom management, reduced anxiety and depression, less caregiver distress, more accordance of care with the wishes of the patient, and less aggressive end-of-life care. Several studies show a survival advantage of several months, and many show considerable cost savings: better care at an affordable cost...
2017: American Society of Clinical Oncology Educational Book
https://www.readbyqxmd.com/read/28560949/a-conceptual-model-redesigning-how-we-provide-palliative-care-for-patients-with-chronic-obstructive-pulmonary-disease
#20
Jennifer Philip, Gregory Crawford, Caroline Brand, Michelle Gold, Belinda Miller, Peter Hudson, Natasha Smallwood, Rosalind Lau, Vijaya Sundararajan
BACKGROUND: Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. OBJECTIVE: Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. METHOD: Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice...
May 31, 2017: Palliative & Supportive Care
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