Abstract:
:Caring for a child with a potentially fatal medical condition is a challenge for parents or caregivers. The ability to measure parental self-efficacy in pediatric palliative care may be an important component of targeting supportive services that address individual needs of families. Therefore, the goal was to develop a Pediatric Palliative Care Parental Self-Efficacy Measure (PCPEM). First, a list of questions were generated that asked parents their level of confidence in carrying out tasks involved in caring for a child with a potentially fatal medical condition in 6 palliative care domains: 1) medical discussion/decisions; 2) symptom management/medication; 3) daily activities; 4) feelings/concerns; 5) spirituality; and 6) end-of-life care. The PCPEM was narrowed to 58 questions after expert reviews. Then, 16 caregivers of children receiving palliative care services and 9 bereaved caregivers participated in individual focus interviews conducted by a psychologist to obtain feedback about the content and clarity of the PCPEM. Results indicated that 53 of the 58 questions were rated as "comfortable being asked," and 55 of the 58 questions were rated as "important" by the majority (>80%) of the 25 caregivers. This suggests that it is feasible and valuable to ask caregivers difficult questions related to end-of-life care if done in a supportive and sensitive manner. Pilot testing of the PCPEM will be conducted to determine preliminary psychometric properties.
journal_name
J Palliat Medjournal_title
Journal of palliative medicineauthors
Bingen K,Kupst MJ,Himelstein Bdoi
10.1089/jpm.2011.0069subject
Has Abstractpub_date
2011-09-01 00:00:00pages
1009-16issue
9eissn
1096-6218issn
1557-7740journal_volume
14pub_type
杂志文章abstract::Chinese family members play an important role in end-of-life decision making. Culturally, they may believe that a patient's awareness of a poor prognosis could harm his or her well-being, and thus they may avoid telling the truth to the patient. To examine this cultural belief empirically, this study aimed to explore ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2011.0099
更新日期:2011-09-01 00:00:00
abstract:: Background : Tumor fever and infection are common febrile etiologies among advanced cancer patients. To date, only few studies have been conducted to differentiate between tumor fever and infections. Objective: This study aimed ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0594
更新日期:2019-11-01 00:00:00
abstract:BACKGROUND:Although an interdisciplinary approach is considered best practice for caring for patients at the end of life, or in need of palliative care (PC) services, there is growing tension between healthcare organizations' need to contain costs and the provision of this beneficial, yet resource-intensive service. O...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2015.0398
更新日期:2016-07-01 00:00:00
abstract:BACKGROUND:Recent studies suggest that surrogate decision makers may be too optimistic about their end-of-life decision making abilities for loved ones. We examined surrogates' decision making confidence with an emphasis on its linkages to their understandings of patients' values and goals for end-of-life care. METHOD...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2011.0330
更新日期:2012-04-01 00:00:00
abstract:BACKGROUND:Little is currently known about physicians': (1) level of involvement in and comfort delivering palliative care in the inpatient setting, (2) perceived barriers to referring patients to an inpatient Palliative Care Consult Service (PCCS), and (3) attitudes regarding palliative care. METHODS:Eligible partici...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2009.9656
更新日期:2009-03-01 00:00:00
abstract:INTRODUCTION:Most medical schools are remiss in preparing physicians in end-of-life communication skills. As a result, many residents are uncomfortable with approaching the patient, have not developed the skills required to discuss the patients' wishes, and avoid end-of-life conversations. OBJECTIVE:To evaluate an edu...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2006.9.964
更新日期:2006-08-01 00:00:00
abstract:BACKGROUND:Although postmortem examination has been reported in a variety of settings and diseases, the medical literature only makes sparse mention of postmortem findings regarding the manner of death in terminally ill patients receiving palliative care. We sought to identify causes of death in an inpatient hospice pr...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2006.0240
更新日期:2007-08-01 00:00:00
abstract::Continuing the momentum of geriatric palliative medicine research achieved during the past decade requires a focus on research methods priorities that span the continuum of research from small pilot studies testing new interventions to large multisite studies evaluating implementation of proven interventions and model...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.9492
更新日期:2013-08-01 00:00:00
abstract:BACKGROUND:Discussions about withdrawal of life-sustaining therapies often include family members of critically ill patients. These conversations should address essential components of the dying process, including expected time to death after withdrawal. OBJECTIVES:The study objective was to aid physician communicatio...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2015.0115
更新日期:2015-12-01 00:00:00
abstract:BACKGROUND:Palliative cancer patients suffer from high levels of distress. There are physiological changes in relation to the level of perceived distress. OBJECTIVE:To study the efficacy of 5 minutes of mindful breathing (MB) for rapid reduction of distress in a palliative setting. Its effect to the physiological chan...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,随机对照试验
doi:10.1089/jpm.2016.0046
更新日期:2016-09-01 00:00:00
abstract:BACKGROUND:Pediatric intensive care units (PICUs) are highly technological settings in which advanced care is used to restore health to critically ill children; however, they are also places where children die. Understanding the needs of parents bereaved in this setting is essential for better family care. OBJECTIVE:T...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2010.0453
更新日期:2011-08-01 00:00:00
abstract:INTRODUCTION:The concept of hope in palliative care is an important and neglected area of research. Amyotrophic lateral sclerosis (ALS), a progressive degenerative motor neuron disease, offers an excellent opportunity to study this construct as the illness is virtually always fatal. Our research explored the meaning of...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2007.0098
更新日期:2008-04-01 00:00:00
abstract:: Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition. Objective: The objective of the study was to (1) discover important components of a birth plan for parents ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0596
更新日期:2019-11-01 00:00:00
abstract::Symptom control for hospice patients frequently involves the use of pharmacologic agents for control of pain, dyspnea, and anxiety. Other troubling symptoms that will often require pharmacologic agents include nausea, vomiting, constipation, and delirium. While the Medicare requirement for hospice is a prognosis of si...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0095
更新日期:2013-08-01 00:00:00
abstract:: Background: Lack of guidance is highlighted as a barrier to deprescribing in palliative care. Two deprescribing tools exist, but with inclusion and exclusion criteria that limit utility. The tools have not previously been compared directly or used in an unselected palliati...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2020.0225
更新日期:2020-09-29 00:00:00
abstract:BACKGROUND:Constipation is a common and distressing condition in patients with cancer, especially those taking opioid analgesics. Many institutions prevent and treat constipation with titrated laxatives, which is known as a bowel protocol. An effective and well-tolerated bowel protocol is a very important component of ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2007.0178
更新日期:2008-05-01 00:00:00
abstract:BACKGROUND:The use of complementary and alternative medicines (CAM) in patients with cancer is well recognized. Little is known, however, about the use of CAM in children with cancer during the end-of-life period. METHODS:We interviewed 96 parents of children who had died of cancer in Melbourne, Australia between 1996...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2012.0150
更新日期:2012-11-01 00:00:00
abstract:: Background: Diabetes is increasingly prevalent globally, including in palliative care. Guidelines vary as to the ideal glycemic goals for patients near the end of life. The relationship between hyperglycemia and attributable symptoms late in life remains ill defined. ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0083
更新日期:2020-03-01 00:00:00
abstract::While Judaism espouses the infinite value of human life, Judaism recognizes that all life is finite and, as such, its teachings are compatible with the principles of palliative medicine and end-of-life care as they are currently practiced. Jewish medical ethics as derived from Jewish law, has definitions for the four ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2004.7.558
更新日期:2004-08-01 00:00:00
abstract:OBJECTIVE:To compare residents in hospice care at admission to the nursing facility to end stage residents not in hospice at admission. DESIGN AND METHODS:We analyzed 18,211 admission assessments recorded in the Minimum Data Set (MDS) during the year 2000 throughout the United States for residents classified as having...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662104773709341
更新日期:2004-04-01 00:00:00
abstract:BACKGROUND:Employment-related issues have been largely overlooked in cancer patients needing palliative care. These issues may become more relevant as cancer evolves into more of a chronic illness and palliative care is provided independent of stage or prognosis. OBJECTIVE:To characterize the employment situations of ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2016.0478
更新日期:2017-07-01 00:00:00
abstract::As new accreditation standards for health professions education increasingly require end-of-life (EOL) curriculum and performance-based assessment, health professions educators struggle to shift through the educational literature to find core principles, practical strategies, emerging trends, and on-line resources to ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662101750290263
更新日期:2001-07-01 00:00:00
abstract:BACKGROUND:Acute hospital readmission of older adults receiving hospice care is not aligned with hospice goals. OBJECTIVE:To identify factors associated with 30-day readmission among older adults newly discharged to hospice. DESIGN/SUBJECTS:Medical record review of 59 patients, 19 readmitted within 30 days and 40 ran...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0224
更新日期:2014-07-01 00:00:00
abstract:: Background: Bereavement programs provide institutions with an avenue for obtaining feedback from family members about their experiences during a patient's illness and end-of-life (EOL) period that can be used to improve both patient care and the care of bereaved individual...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0467
更新日期:2020-08-01 00:00:00
abstract::In this review we discuss the history of Hospice and Palliative Medicine (HPM) physician education in the United States over the last 20 years, as there has been dramatic growth in our specialty during this time. A Medline literature search was completed and we surveyed leaders in the field of HPM education regarding ...
journal_title:Journal of palliative medicine
pub_type: 历史文章,杂志文章,评审
doi:10.1089/jpm.2012.0436
更新日期:2013-03-01 00:00:00
abstract:BACKGROUND:Dyspnea is a very distressing symptom present in the vast majority of patients with advanced cancer. There are limited data on the characteristics and correlates of dyspnea in this population. The purpose of this study was to characterize dyspnea, explore the differences between breakthrough and continuous p...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2008.0158
更新日期:2009-01-01 00:00:00
abstract:: Objectives: To identify patient perceptions of how and when palliative care (PC) could complement usual heart failure (HF) management. Background: Despite guidelines calling for the integration of PC into the management of HF, ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0451
更新日期:2020-07-01 00:00:00
abstract::A faculty development course was offered at the Medical College of Wisconsin to bolster existing medical student and housestaff training opportunities in palliative medicine. An 8- week, 12 contact-hour course was designed to provide up to 15 faculty members training in the practice and teaching of end-of-life care. F...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.1998.1.35
更新日期:1998-04-01 00:00:00
abstract:OBJECTIVE:To describe caregivers' reasons for transfer from home hospice to inpatient facilities, preferences for site of care and death, and their experiences during these transfers. DESIGN:Retrospective qualitative analysis of interviews with caregivers of deceased hospice patients who had undergone transfer. SETTI...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2006.9.100
更新日期:2006-02-01 00:00:00
abstract:BACKGROUND AND OBJECTIVE:To date, there are no known published studies that prospectively followed hospice patients receiving hydromorphone to evaluate the development of hydromorphone-induced neuroexcitation (HINE). The first objective of this study was to determine the incidence of HINE. The second objective was to i...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1089/jpm.2012.0467
更新日期:2013-10-01 00:00:00