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https://www.readbyqxmd.com/read/28428907/palliative-care-in-huntington-disease-personal-reflections-and-a-review-of-the-literature
#1
REVIEW
Christopher G Tarolli, Amy M Chesire, Kevin M Biglan
BACKGROUND: Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis...
2017: Tremor and Other Hyperkinetic Movements
https://www.readbyqxmd.com/read/28428012/-retrospective-study-of-children-referred-from-paediatric-intensive-care-to-palliative-care-why-and-for-what
#2
Alberto García-Salido, Paula Santos-Herranz, Verónica Puertas-Martín, María Ángeles García-Teresa, Ricardo Martino-Alba, Ana Serrano-González
INTRODUCTION: The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characteristics of children referred from PICU to the UCPP of the Autonomous Community of Madrid (CAM). The overall treatment, relapses, re-admissions, and deaths, if occurred, are described. PATIENTS AND METHOD: A retrospective review was performed using the medical records from children transferred from the CAM paediatric intensive care units to the paediatric palliative care unit (1 March 2008-31 January 2015)...
April 17, 2017: Anales de Pediatría: Publicación Oficial de la Asociación Española de Pediatría (A.E.P.)
https://www.readbyqxmd.com/read/28423918/expanding-the-palliative-care-domains-to-meet-the-needs-of-a-community-based-supportive-care-model
#3
Eric W Anderson, Monica S Frazer, Sandra E Schellinger
BACKGROUND: Whole person care is appropriate for seriously ill persons. The current framework of palliative care domains in the National Consensus Project (NCP) Guidelines for Quality Palliative Care offers an opportunity to reassess the domains of care delivered at home, earlier in the course of illness. OBJECTIVE: This qualitative study was used to test the applicability of a proposed, expanded set of domains. The results were used to inform a home-based, upstream model of supportive care for serious illness...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28420191/designing-effective-interactions-for-concordance-around-end-of-life-care-decisions-lessons-from-hospice-admission-nurses
#4
Carey Candrian, Channing Tate, Kirsten Broadfoot, Alexandra Tsantes, Daniel Matlock, Jean Kutner
Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual's acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable...
April 18, 2017: Behavioral Sciences
https://www.readbyqxmd.com/read/28418761/economic-evaluation-of-a-hospital-based-palliative-care-program
#5
Sarina R Isenberg, Chunhua Lu, John McQuade, Rab Razzak, Brian W Weir, Natasha Gill, Thomas J Smith, David R Holtgrave
PURPOSE: Establish costs of an inpatient palliative care unit (PCU) and conduct a threshold analysis to estimate the maximum possible costs for the PCU to be considered cost effective. METHODS: We used a hospital perspective to determine costs on the basis of claims from administrative data from Johns Hopkins PCU between March 2013 and March 2014. Using existing literature, we estimated the number of quality-adjusted life years (QALYs) that the PCU could generate...
April 18, 2017: Journal of Oncology Practice
https://www.readbyqxmd.com/read/28406430/palliative-care-and-the-family-caregiver-trading-mutual-pretense-empathy-for-a-sustained-gaze-compassion
#6
Joy Goldsmith, Sandra L Ragan
In this conceptual piece, we survey the progress of palliative care communication and reflect back on a chapter we wrote a decade ago, which featured the communication concept of mutual pretense, first described by Glaser and Strauss (1965). This work will include an update on family caregivers and their role in cancer caregiving as well as a review of current palliative care communication curriculum available for providers. And finally, we will spotlight the conversation and research going forward on the subject of health literacy for all stakeholders; patients, families, providers, and systems...
April 13, 2017: Behavioral Sciences
https://www.readbyqxmd.com/read/28402533/caregiver-perspectives-about-using-antipsychotics-and-other-medications-for-symptoms-of-dementia
#7
John William Kerns, Jonathan D Winter, Katherine M Winter, Christine C Kerns, Rebecca S Etz
Background and Objectives: To avoid "chemical restraints," policies and guidelines have been implemented to curb the use of medications for behavioral and psychological symptoms of dementia (BPSD). Antipsychotics have been particularly targeted because of their rare severe side effects. Consequently, caregiver directed non-pharmacologic therapies have increased while medication use for BPSD has diminished. Despite such initiatives, however, antipsychotics continue to be prescribed "off-label" for roughly 20% of nursing home patients...
April 11, 2017: Gerontologist
https://www.readbyqxmd.com/read/28390401/a-process-evaluation-of-systematic-risk-and-needs-assessment-for-caregivers-in-specialised-palliative-care
#8
Kia Toft Thomsen, Mai-Britt Guldin, Mette Kjærgaard Nielsen, Chaitali Laura Ollars, Anders Bonde Jensen
BACKGROUND: Caregiving is strenuous and it may be associated with adverse psychological outcomes. During the palliative care trajectory, there are unique opportunities for providing support and preventing poor bereavement outcome. However, the tasks of palliative care staff in relation to caregivers are often unclear in the daily practice. Assessment is recommended to establish risk and needs and standards for caregiver support are available. Still, the feasibility of applying these standards among caregivers in everyday clinical practice has not been tested so far...
April 8, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28367679/initial-perceptions-of-palliative-care-an-exploratory-qualitative-study-of-patients-with-advanced-cancer-and-their-family-caregivers
#9
Anna Collins, Sue-Anne McLachlan, Jennifer Philip
BACKGROUND: Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. AIM: To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings...
March 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28366260/-the-wounds-of-people-receiving-end-of-life-palliative-care
#10
REVIEW
Odile Martinet, Idriss Farota-Romejko
When it includes the care of wounds, the management of patients at the end of life mobilises caregivers around a care project which brings together therapeutic, technical and relational challenges. In partnership with the patient and their families, the care must be adjusted and respectful of the patient's progression.
April 2017: Revue de L'infirmière
https://www.readbyqxmd.com/read/28357973/perceptions-of-the-care-received-from-australian-palliative-care-services-a-caregiver-perspective
#11
Tanya M Pidgeon, Claire E Johnson, Leanne Lester, David Currow, Patsy Yates, Samuel F Allingham, Sonia Bird, Kathy Eagar
BACKGROUND: Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey...
March 30, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28357972/dyadic-psychological-intervention-for-patients-with-cancer-and-caregivers-in-home-based-specialized-palliative-care-the-domus-model
#12
Annika B von Heymann-Horan, Louise B Puggaard, Kathrine G Nissen, Kirstine Skov Benthien, Pernille Bidstrup, James Coyne, Christoffer Johansen, Jakob Kjellberg, Mie Nordly, Per Sjøgren, Helle Timm, Hans von der Maase, Mai-Britt Guldin
OBJECTIVE: Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient-caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility...
March 30, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28357650/screening-for-symptom-burden-and-supportive-needs-of-patients-with-glioblastoma-and-brain-metastases-and-their-caregivers-in-relation-to-their-use-of-specialized-palliative-care
#13
Bettina Seekatz, Matthias Lukasczik, Mario Löhr, Katja Ehrmann, Michael Schuler, Almuth F Keßler, Silke Neuderth, Ralf-Ingo Ernestus, Birgitt van Oorschot
PURPOSE: Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC). METHODS: Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later...
March 29, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28345980/palliative-care-nursing-for-patients-with-neurological-diseases-what-makes-the-difference
#14
Anna Dieplinger, Firuzan Sari Kundt, Stefan Lorenzl
Neurodegenerative diseases progress slowly, creating increasing physical disability with unpredictable disease trajectories. The disease's life-threatening nature often places these patients in palliative care. There are several factors that complicate the care of patients with neurodegenerative diseases in palliative care units. Owing to physical impairments, there are many communication barriers between patients and staff. Nurses are not able to duplicate the patient's meticulous daily routine leading to caregiver mistrust in the nurse's competencies...
March 23, 2017: British Journal of Nursing: BJN
https://www.readbyqxmd.com/read/28345777/the-relationship-between-cancer-patients-place-of-death-and-bereaved-caregivers-mental-health-status
#15
Yutaka Hatano, Maho Aoyama, Tatsuya Morita, Takuhiro Yamaguchi, Isseki Maeda, Yoshiyuki Kizawa, Satoru Tsuneto, Yasuo Shima, Mitsunori Miyashita
BACKGROUND: Although place of death has been recognized as a risk factor in caregivers' bereavement adjustment, the estimation of the effect of the place of death needs careful consideration about many potential cofounders. PATIENTS AND METHODS: This study was a nationwide cross-sectional questionnaire survey for bereaved family caregivers of patients with cancer who died in 3 settings: (1) hospice at home; (2) palliative care units (PCUs); and (3) acute hospitals...
March 27, 2017: Psycho-oncology
https://www.readbyqxmd.com/read/28333571/screening-and-assessment-of-substance-use-in-hospice-care-examining-content-from-a-national-sample-of-psychosocial-assessments
#16
Paul Sacco, John G Cagle, Melissa L Moreland, Elizabeth A S Camlin
BACKGROUND: Quality of care provided by hospice and palliative care agencies depends on a thorough understanding of the patient, the family, their history, and current risk factors. It is therefore imperative for social workers and other providers in these settings to assess patients and caregivers for substance use disorders and potential for substance misuse. OBJECTIVE: We aimed to examine how hospice social workers in the United States screen and assess for alcohol and substance use and risk of medication diversion among patients and family caregivers...
March 23, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28323080/validation-of-the-spanish-version-of-the-quality-of-dying-and-death-questionnaire-qodd-esp-in-a-home-based-cancer-palliative-care-program-and-development-of-the-qodd-esp-12
#17
Pedro E Pérez-Cruz, Oslando Padilla Pérez, Pilar Bonati, Oliva Thomsen Parisi, Laura Tupper Satt, Marcela Gonzalez Otaiza, Diego Ceballos Yáñez, Armando Maldonado Morgado
CONTEXT: Improving quality of death (QOD) is a key goal in palliative care. To our knowledge, no instruments to measure QOD have been validated in Spanish. OBJECTIVES: The goals of this study were to validate the Spanish version of the quality of dying and death questionnaire (QODD) and to develop and validate a shortened version of this instrument by phone interview. METHODS: We enrolled caregivers of consecutive deceased cancer patients who participated in a single palliative care clinic...
March 16, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28282256/new-evidence-on-end-of-life-hospital-utilization-for-enhanced-health-policy-and-services-planning
#18
Donna M Wilson, Ye Shen, Stephen Birch
BACKGROUND: Long-standing concern exists over hospital use by people near or at the end of life (EOL) related to the appropriateness, quality, and cost of care in hospital. It is widely believed that most people die in hospital after an escalation in hospital use over the last year of life. As most deaths in high-income countries are not sudden or unexpected, opportunities exist for planning compassionate, effective, and evidence-based EOL care. OBJECTIVE: Gain current population-based evidence for EOL health policy and services planning...
March 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28264748/factors-associated-with-patient-reported-subjective-well-being-among-advanced-lung-or-non-colonic-gastrointestinal-cancer-patients
#19
Sriram Yennurajalingam, Yu Jung Kim, Yi Zhang, Jichan Park, Joseph Arthur, Gary B Chisholm, Janet L Williams, Eduardo Bruera
OBJECTIVE: The aim of this study was to determine the factors associated with a feeling of well-being using the Edmonton Symptom Assessment Scale (ESAS)-Feeling of Well-Being item (ESAS-FWB; where 0 = best and 10 = worst) among advanced lung or non-colonic gastrointestinal cancer patients who were referred to an outpatient palliative care clinic (OPCC). We also examined the association of performance on the ESAS-FWB with overall survival (OS). METHOD: We reviewed the records of consecutive patients with incurable advanced lung cancer and non-colonic gastrointestinal cancer presenting to an OPCC from 1 January 2008 through to 31 December 2013...
March 7, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28245168/the-role-of-informal-caregivers-at-the-end-of-life-providing-support-through-advance-care-planning
#20
John Costello
In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP)...
February 2, 2017: International Journal of Palliative Nursing
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