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Palliative caregiver

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https://www.readbyqxmd.com/read/29145313/the-importance-of-family-caregiving-to-achieving-palliative-care-at-home-a-case-report-of-end-of-life-breast-cancer-in-an-area-struck-by-the-2011-fukushima-nuclear-crisis-a-case-report
#1
Akihiko Ozaki, Masaharu Tsubokura, Claire Leppold, Toyoaki Sawano, Manabu Tsukada, Tsuyoshi Nemoto, Kazuhiro Kosugi, Yoshitaka Nishikawa, Shigeaki Kato, Hiromichi Ohira
RATIONALE: The primary setting of palliative care has shifted from inpatient care to patients' residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. PATIENT CONCERNS: In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster...
November 2017: Medicine (Baltimore)
https://www.readbyqxmd.com/read/29141459/factors-associated-with-caregivers-resilience-in-a-terminal-cancer-care-setting
#2
In Cheol Hwang, Young Sung Kim, Yong Joo Lee, Youn Seon Choi, Sun Wook Hwang, Hyo Min Kim, Su-Jin Koh
BACKGROUND: Resilience implies characteristics such as self-efficacy, adaptability to change, optimism, and the ability to recover from traumatic stress. Studies on resilience in family caregivers (FCs) of patients with terminal cancer are rare. This study aims to examine the factors associated with FCs' resilience in a terminal cancer care setting. METHODS: This is a cross-sectional study of 273 FCs from 7 hospice and palliative care units in Korea. Resilience was categorized as high and low, and factors associated with resilience were grouped or categorized into subscales...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29130418/caregiver-quality-of-life-in-advanced-cancer-qualitative-results-from-a-trial-of-early-palliative-care
#3
Julie McDonald, Nadia Swami, Ashley Pope, Sarah Hales, Rinat Nissim, Gary Rodin, Breffni Hannon, Camilla Zimmermann
BACKGROUND: Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. AIM: To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. DESIGN: Qualitative grounded theory study...
November 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/29130416/prevalence-incidence-and-associated-factors-of-pressure-ulcers-in-home-palliative-care-patients-a-retrospective-chart-review
#4
Marco Artico, Angelo Dante, Daniela D'Angelo, Luciano Lamarca, Chiara Mastroianni, Tommasangelo Petitti, Michela Piredda, Maria Grazia De Marinis
BACKGROUND: Terminally ill patients are at high risk of pressure ulcers, which have a negative impact on quality of life. Data about pressure ulcers' prevalence, incidence and associated factors are largely insufficient. AIM: To document the point prevalence at admission and the cumulative incidence of pressure ulcers in terminally ill patients admitted to an Italian home palliative care unit, and to analyse the patients' and caregivers' characteristics associated with their occurrence...
October 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/29130405/what-is-the-role-of-community-at-the-end-of-life-for-people-dying-in-advanced-age-a-qualitative-study-with-bereaved-family-carers
#5
Merryn Gott, Janine Wiles, Tess Moeke-Maxwell, Stella Black, Lisa Williams, Ngaire Kerse, Gabriella Trussardi
BACKGROUND: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. AIM: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. DESIGN: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis...
October 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/29130378/the-experiences-of-patients-with-advanced-cancer-and-caregivers-presenting-to-emergency-departments-a-qualitative-study
#6
Jennifer Philip, Cheryl Remedios, Sibilah Breen, Tracey Weiland, Lisa Willenberg, Mark Boughey, George Jelinek, Heather Lane, Claudia Marck, Jennifer Weil
BACKGROUND: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations. AIM: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers. DESIGN: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers...
October 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/29125784/identifying-the-population-with-serious-illness-the-denominator-challenge
#7
Amy S Kelley, Evan Bollens-Lund
BACKGROUND: To ensure seriously ill people and their families receive high-quality primary and specialty palliative care services, rigorous methods are needed to prospectively identify this population. OBJECTIVE: To define and operationalize a definition of serious illness for the purpose of identifying patients and caregivers who need primary or specialty palliative care services. DESIGN/SETTING: Two stages of work included (1) building expert consensus around a conceptual definition of serious illness and (2) using the National Health and Aging Trends Study linked to Medicare claims data to test a range of operational definitions composed of diagnoses, utilization, and markers of care needs...
November 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29123350/evaluation-of-community-based-palliative-care-services-perspectives-from-various-stakeholders
#8
Venugopal Vinayagamoorthy, Elayaperumal Suguna, Amol R Dongre
Background: As a part of Memorandum of Understanding with Tamil Nadu Institute of Palliative Medicine, community-based palliative care services have been initiated 2 years back in our urban field practice areas. Aim: The aim of this study was to evaluate the home care service, a major component of our community-based palliative care, with a view to identify the unmet needs of the services rendered for decision-making about the program. Materials and Methods: It was a descriptive qualitative design carried out by the authors trained in qualitative research methods...
October 2017: Indian Journal of Palliative Care
https://www.readbyqxmd.com/read/29106058/looking-beyond-the-forest-using-harvest-plots-gap-analysis-and-expert-consultations-to-assess-effectiveness-engage-stakeholders-and-inform-policy
#9
J Burns, S Polus, L Brereton, J Chilcott, S E Ward, L M Pfadenhauer, E A Rehfuess
We describe a combination of methods for assessing the effectiveness of complex interventions, especially where substantial heterogeneity with regard to the population, intervention, comparison, outcomes and study design of interest is expected. We applied these methods in a recent systematic review of the effectiveness of reinforced home-based palliative care (rHBPC) interventions, which included home-based care with an additional and explicit component of lay caregiver support. We first summarized the identified evidence, deemed inappropriate for statistical pooling, graphically by creating harvest plots...
November 4, 2017: Research Synthesis Methods
https://www.readbyqxmd.com/read/29101086/beyond-idiopathic-pulmonary-fibrosis-diagnosis-multidisciplinary-care-with-an-early-integrated-palliative-approach-is-associated-with-a-decrease-in-acute-care-utilization-and-hospital-deaths
#10
Meena Kalluri, Francisca Claveria, Emily Ainsley, Maged Haggag, Susan Armijo-Olivo, Janice Richman-Eisenstat
CONTEXT: Idiopathic Pulmonary Fibrosis (IPF) is a progressive, incurable interstitial lung disease with heavy symptom burden and poor quality of life. The last year of life is characterized by increased acute care utilization and hospital deaths. Clinical guidelines recommend early integration of palliative care but is rarely implemented. In 2012, we reorganized our clinic into a multidisciplinary team comprising two pulmonologists (expertise in ILD and palliative respiratory care respectively), nurse, respiratory therapist, physiotherapist, and a dietitian...
October 31, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29097163/defining-palliative-care-in-cystic-fibrosis-a-delphi-study
#11
E P Dellon, J Goggin, E Chen, K Sabadosa, S E Hempstead, A Faro, K Homa
BACKGROUND: The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. METHODS: A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions...
October 30, 2017: Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society
https://www.readbyqxmd.com/read/29094668/decisional-control-preferences-of-patients-with-advanced-cancer-receiving-palliative-care
#12
Colombe Tricou, Sriram Yennu, Murielle Ruer, Eduardo Bruera, Marilène Filbet
OBJECTIVE: Understanding patients' decisional control preferences (DCPs) is important to improving the quality of care and the satisfaction of patients who have advanced cancer with their care. In addition to passive decisional control (i.e., the patient prefers his/her doctor or family caregiver to make a decision on their behalf) and active decisional control (i.e., the patient decides alone), shared decisional control, where patients and caregivers decide together, could be more appropriate...
November 2, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/29094085/awareness-and-perception-about-cancer-among-the-public-in-chennai-india
#13
Vidhubala Elangovan, Swaminathan Rajaraman, Barsha Basumalik, Dhivya Pandian
Purpose: Cancer-related stigma influences the way people perceive cancer, which renders cancer control-beginning with prevention and proceeding to palliation-a challenging task. This study aimed to assess the current levels of awareness and perceptions about cancer among people with various socioeconomic status and diverse backgrounds in the city of Chennai, India. Patients and Methods: The sample population (N = 2,981; 18 to 88 years of age) was stratified into four groups: patients (n = 510), caregivers (n = 494) consulting at the Cancer Institute (Women Indian Association), college students (n = 978), and general public (n = 999)...
October 2017: Journal of Global Oncology
https://www.readbyqxmd.com/read/29081717/designing-and-testing-an-end-of-life-discussion-intervention-for-african-american-patients-with-heart-failure-and-their-families
#14
Ubolrat Piamjariyakul, Carol E Smith, Marilyn Werkowitch, Noreen Thompson, Maria Fox, Karin Porter Williamson, Lori Olson
There is an escalating prevalence of heart failure (HF) with high mortality. Compared with other races, African Americans face a higher incidence of HF at earlier age of onset, with more rapid progression, and with increased family care burden and greater care costs and disparity in health care services at the end of life (EOL). Concomitant out-of-pocket HF costs and care demands indicate the need for early discussion of palliative and EOL care needs. We therefore developed and pilot tested a culturally sensitive intervention specific to the needs of African American HF patients and their families at the EOL...
December 2016: Journal of Hospice and Palliative Nursing: JHPN
https://www.readbyqxmd.com/read/29077985/the-experience-of-psychological-distress-in-family-caregivers-of-people-with-dementia-a-cross-sectional-study
#15
Wilson Abreu, Teresa Rodrigues, Carlos Sequeira, Regina Pires, Ana Sanhudo
PURPOSE: To evaluate the degree of psychological distress in family caregivers of people with dementia. DESIGN AND METHODS: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. FINDINGS: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive-compulsion, interpersonal sensitivity, anxiety, and paranoid ideation...
October 27, 2017: Perspectives in Psychiatric Care
https://www.readbyqxmd.com/read/29065071/combining-best-practices-and-patient-caregiver-and-healthcare-provider-perspectives-for-late-life-supportive-care-lifecourse
#16
Eric W Anderson, Monica S Frazer, Sandra E Schellinger
Healthcare systems seek effective ways to support and treat the growing number of individuals living with serious illness. The nature of these care episodes challenges delivery systems to attain proficiency in dealing with the multiplicity of chronic conditions in individuals and populations through understanding and attending to patients' medical and nonmedical aspects of health. This article describes LifeCourse, a healthcare approach that provides palliative care practices to patients with serious illness years prior to death...
November 2017: Journal of Nursing Administration
https://www.readbyqxmd.com/read/29056562/causes-of-hospital-admissions-in-domus-a-randomized-controlled-trial-of-specialized-palliative-cancer-care-at-home
#17
Kirstine Skov Benthien, Mie Nordly, Annika von Heymann-Horann, Kristina Holmenlund, Helle Timm, Geana Kurita, Christoffer Johansen, Jakob Kjellberg, Hans von der Maase, Per Sjøgren
PURPOSE: Avoidable hospital admissions are important negative indicators of quality of end-of-life care. Specialized palliative care (SPC) may support patients in remaining at home. Therefore, the purpose of this study was to investigate if SPC at home could prevent hospital admissions in patients with incurable cancer. PATIENTS AND METHODS: These are secondary results of Domus: a randomized controlled trial of accelerated transition to SPC with psychological intervention at home (clinicaltrials...
October 19, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29052316/does-an-intervention-designed-to-improve-self-management-social-support-and-awareness-of-palliative-care-address-needs-of-persons-with-heart-failure-family-caregivers-and-clinicians
#18
Margaret Sebern, Nasir Sulemanjee, Mark J Sebern, Mauricio Garnier-Villarreal, Carol J Whitlatch
AIMS AND OBJECTIVES: The study aims were to conduct a formative evaluation of the iPad-Enhanced Shared Care Intervention for Partners (iSCIP) among persons with heart failure (HF), family caregivers, and clinicians. Together, persons with HF and family caregivers are referred to as partners. BACKGROUND: There is growing awareness of the caregiver's contributions to HF self-management, social support, and reciprocal benefits of interventions that involve both partners...
October 20, 2017: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/29042761/understanding-institutional-stakeholders-perspectives-on-multidrug-resistant-bacterial-organism-at-the-end-of-life-a-qualitative-study
#19
Maria Heckel, Franziska A Herbst, Thomas Adelhardt, Johanna M Tiedtke, Alexander Sturm, Stephanie Stiel, Christoph Ostgathe
BACKGROUND: Information lacks about institutional stakeholders' perspectives on management approaches of multidrug-resistant bacterial organism in end-of-life situations. The term "institutional stakeholder" includes persons in leading positions with responsibility in hospitals' multidrug-resistant bacterial organism management. They have great influence on how strategies on multidrug-resistant bacterial organism management approaches in institutions of the public health system are designed...
2017: Clinical Interventions in Aging
https://www.readbyqxmd.com/read/29037271/trajectories-of-caregiver-burden-in-families-of-adult-cystic-fibrosis-patients
#20
Ann Wojtaszczyk, Myra Glajchen, Russell K Portenoy, Maria Berdella, Patricia Walker, Malcolm Barrett, Jack Chen, Amy Plachta, Julie Balzano, Ashley Fresenius, Kenya Wilder, Elinor Langfelder-Schwind, Lara Dhingra
OBJECTIVES: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. METHODS: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period...
October 17, 2017: Palliative & Supportive Care
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