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Palliative caregiver

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https://www.readbyqxmd.com/read/28521799/what-are-the-differences-among-occupational-groups-related-to-their-palliative-care-specific-educational-needs-and-intensity-of-interprofessional-collaboration-in-long-term-care-homes
#1
S Kaasalainen, T Sussman, M Bui, N Akhtar-Danesh, R D Laporte, L McCleary, A Wickson Griffiths, K Brazil, D Parker, V Dal Bello-Haas, A Papaioannou, J O'Leary
BACKGROUND: The purpose of this study was to compare the differences across occupational groups related to their end-of-life care-specific educational needs and reported intensity of interprofessional collaboration in long-term care (LTC) homes. METHODS: A cross-sectional survey, based on two questionnaires, was administered at four LTC homes in Ontario, Canada using a modified Dilman's approach. The first questionnaire, End of Life Professional Caregiver Survey, included three domains: patients and family-centered communication, cultural and ethical values, effective care delivery...
May 18, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28520498/palliative-care-and-parkinson-s-disease-caregiver-perspectives
#2
Isabel Boersma, Jacqueline Jones, Christina Coughlan, Julie Carter, David Bekelman, Janis Miyasaki, Jean Kutner, Benzi Kluger
BACKGROUND: Palliative care for Parkinson's disease (PD) is an emerging area of interest for clinicians, patients and families. Identifying the palliative care needs of caregivers is central to developing and implementing palliative services for families affected by PD. The objective of this paper was to elicit PD caregiver needs, salient concerns, and preferences for care using a palliative care framework. MATERIALS AND METHODS: 11 PD caregivers and one non-overlapping focus group (n = 4) recruited from an academic medical center and community support groups participated in qualitative semi-structured interviews...
May 18, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28505118/communicatively-constructing-the-bright-and-dark-sides-of-hope-family-caregivers-experiences-during-end-of-life-cancer-care
#3
Jody Koenig Kellas, Katherine M Castle, Alexis Johnson, Marlene Z Cohen
(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualitative thematic and case oriented strategies to identify patterns in the positive and negative lived experiences when communicating about hope at the end of life; (3) Results: Two overarching patterns of hope emerged...
May 15, 2017: Behavioral Sciences
https://www.readbyqxmd.com/read/28490412/improving-community-access-to-terminal-phase-medicines-in-australia-identification-of-the-key-considerations-for-the-implementation-of-a-core-medicines-list
#4
Paul A Tait, Weng Hou Cheung, Michael Wiese, Kirsten Staff
During the terminal phase, access to medicines is critical for people wishing to spend their last days of life at home. Yet, access to medicines can be problematic. The aim of this study was to report the perspectives of specialist and generalist health professionals (HPs) on the issues of community access to medicines for this vulnerable group. A qualitative descriptive study design investigated the views of HPs working in palliative care roles in South Australia. Nurses, doctors and pharmacists described their experiences of accessing medicines for management of terminal phase symptoms during semi-structured focus group discussions...
May 11, 2017: Australian Journal of Primary Health
https://www.readbyqxmd.com/read/28486962/quality-of-life-psychological-burden-needs-and-satisfaction-during-specialized-inpatient-palliative-care-in-family-caregivers-of-advanced-cancer-patients
#5
Anneke Ullrich, Lilian Ascherfeld, Gabriella Marx, Carsten Bokemeyer, Corinna Bergelt, Karin Oechsle
BACKGROUND: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. METHODS: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2)...
May 10, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28486067/leading-an-intervention-for-family-caregivers-a-part-of-nursing-in-palliative-care
#6
Maja Holm, Ida Goliath, Hanna Södlind, Anette Alvariza
Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology...
April 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28479121/ethical-considerations-and-palliative-care-in-patients-with-amyotrophic-lateral-sclerosis-a-review
#7
REVIEW
V Danel-Brunaud, L Touzet, L Chevalier, C Moreau, D Devos, S Vandolaeghe, L Defebvre
Amyotrophic lateral sclerosis (ALS) is not a curable disease, but it is treatable. By definition, much of the care provided to ALS patients is palliative, even though active life-sustaining strategies are available to prolong survival. Healthcare professionals must develop communication skills that help patients cope with the inexorable progression of the disease and the inevitability of death. Symptomatic treatments as well as respiratory insufficiency and nutritional life-sustaining therapies must be regularly evaluated as the disease progresses, without losing sight of the burden placed on the patient's non-professional caregivers...
May 4, 2017: Revue Neurologique
https://www.readbyqxmd.com/read/28474241/reported-distress-in-patients-living-with-advanced-cancer-changes-pre-post-interdisciplinary-palliative-rehabilitation
#8
Andrea Feldstain, Neil MacDonald, Ravi Bhargava, Martin Chasen
PURPOSE: Patients are living extended life with advanced cancer making it chronic rather than imminently terminal. Literature on the experience of living with advanced cancer is emerging, indicating ongoing polysymptomatic burden, lack of information, burnout (patients and caregivers), and emotional concerns, all of which contribute to emotional distress. The interdisciplinary Ottawa Palliative Rehabilitation Program (PRP) offers a scarce clinical resource for this population. The current research aimed to explore changes in self-reported distress for patients who completed the PRP, from baseline to program completion...
May 4, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28467121/companion-animal-caregiver-knowledge-attitudes-and-beliefs-regarding-end-of-life-care
#9
Roschelle A Heuberger, Jessica Pierce
Although awareness of end-of-life care is growing within the veterinary field and there appears to be consumer demand for these services, it is unclear exactly what caregivers know about end-of-life options for their companion animals. Are companion-animal caregivers aware of the range of options for their nonhuman animals? What do they value most highly for their nonhuman animals at the end of life? Answers to these and other related questions about caregiver perceptions are important because what they know about end-of-life care and how they approach decision-making for their companion animals will shape the kind of care an animal receives...
May 3, 2017: Journal of Applied Animal Welfare Science: JAAWS
https://www.readbyqxmd.com/read/28463635/research-priorities-for-palliative-care-for-older-adults-with-advanced-chronic-kidney-disease
#10
Ann M O'Hare, Mi-Kyung Song, Manjula Kurella Tamura, Alvin H Moss
Older adults with advanced chronic kidney disease (CKD) often have multiple comorbid conditions, a high symptom burden, and limited life expectancy. There is mounting concern that the intensive patterns of care that many of these patients receive at the end of life are discordant with their values and preferences. The nephrology community has recognized that there are significant unmet palliative care needs in this population. In this article, we identify three broad areas of knowledge deficit where more evidence is needed to support the "best care possible" for this population: (1) what matters most to older adults with advanced CKD and their caregivers near the end of life; (2) how the nephrology community can best support older adults with advanced CKD to navigate complex treatment decisions throughout their illness; and (3) how the healthcare system should be reconfigured to promote patient- and family-centered care for older adults with advanced CKD...
May 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28462752/sources-of-meaning-in-family-caregivers-of-terminally-ill-patients-supported-by-a-palliative-nursing-care-team-a-naturalistic-three-month-cohort-study
#11
Juan Valdés-Stauber, Rafael Lemaczyk, Reinhold Kilian
OBJECTIVE: Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period. METHOD: The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t 0), and at 1 week, 1 month, and 3 months after t 0...
May 2, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28462749/association-between-family-satisfaction-and-caregiver-burden-in-cancer-patients-receiving-outreach-palliative-care-at-home
#12
Yoko Naoki, Yoshinobu Matsuda, Isseki Maeda, Hideka Kamino, Yoko Kozaki, Akihiro Tokoro, Norimasa Maki, Minoru Takada
OBJECTIVE: Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction. METHOD: Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively...
May 2, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28457493/nursing-home-care-trajectories-for-older-adults-following-in-hospital-palliative-care-consultation
#13
Joan G Carpenter, Patricia H Berry, Mary Ersek
Palliative care consultation (PCC) during hospitalization is increasingly common for older adults with life-limiting illness discharged to nursing homes. The objective of this qualitative descriptive study was to describe the care trajectories and experiences of older adults admitted to a nursing home following a PCC during hospitalization. Twelve English-speaking adults, mean age 80 years, who received a hospital PCC and discharge to a nursing home without hospice. Data were collected from medical records at five time points from hospital discharge to 100 days after nursing home admission and care trajectories were mapped...
April 27, 2017: Geriatric Nursing
https://www.readbyqxmd.com/read/28454534/palliative-care-for-people-with-dementia-in-the-terminal-phase-a-mixed-methods-qualitative-study-to-inform-service-development
#14
Jenny T van der Steen, Natashe Lemos Dekker, Marie-José H E Gijsberts, Laura H Vermeulen, Margje M Mahler, B Anne-Mei The
BACKGROUND: When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. METHODS: In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries...
April 28, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28448200/better-together-the-making-and-maturation-of-the-palliative-care-research-cooperative-group
#15
Christine L Ritchie, Kathryn I Pollak, Karen A Kehl, Jeri L Miller, Jean S Kutner
OBJECTIVE: To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC). BACKGROUND: Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed. METHODS: The PCRC supports investigators in the conduct of multisite clinical studies...
April 27, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28437205/-she-would-be-flailing-around-distressed-the-critical-role-of-home-based-palliative-care-for-patients-with-advanced-cancer
#16
Brook A Calton, Nicole Thompson, Nancy Shepard, Redwing Keyssar, Kanan Patel, Virginia Dzul-Church, Helen Kao, Christine Ritchie, Michael W Rabow
BACKGROUND: Patients with advanced cancer experience significant symptoms, ineffective treatments, and hospice underutilization. Home-based palliative care (HBPC) may fill a service gap for patients who require intensive home management, but are not enrolled in hospice. Even as data emerge on the utilization impacts of HBPC, other impacts are not as well known. METHODS: We describe findings of a pilot project in HBPC, Community Bridges (CB), for patients with advanced cancer...
February 16, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28428907/palliative-care-in-huntington-disease-personal-reflections-and-a-review-of-the-literature
#17
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
#18
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
#19
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
#20
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
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