Development of the Palliative Care Parental Self-Efficacy Measure.

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 Med

authors

Bingen K,Kupst MJ,Himelstein B

doi

10.1089/jpm.2011.0069

subject

Has Abstract

pub_date

2011-09-01 00:00:00

pages

1009-16

issue

9

eissn

1096-6218

issn

1557-7740

journal_volume

14

pub_type

杂志文章
  • Being aware of the prognosis: how does it relate to palliative care patients' anxiety and communication difficulty with family members in the Hong Kong Chinese context?

    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

    authors: Chan WC

    更新日期:2011-09-01 00:00:00

  • A Multicenter Cohort Study to Explore Differentiating Factors between Tumor Fever and Infection among Advanced Cancer Patients.

    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

    authors: Odagiri T,Morita T,Sakurai H,Yamada H,Matsuo N,Matsumoto Y,Matsuda Y,Yoshioka A,Watanabe H,Shimoyama S,Kohara H

    更新日期:2019-11-01 00:00:00

  • Why the Interdisciplinary Team Approach Works: Insights from Complexity Science.

    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

    authors: Ciemins EL,Brant J,Kersten D,Mullette E,Dickerson D

    更新日期:2016-07-01 00:00:00

  • End-of-life decision-making confidence in surrogates of African-American dialysis patients is overly optimistic.

    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

    authors: Song MK,Ward SE,Lin FC

    更新日期:2012-04-01 00:00:00

  • Identifying factors affecting utilization of an inpatient palliative care service: a physician survey.

    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

    authors: Snow CE,Varela BR,Pardi DA,Adelman RD,Said S,Reid MC

    更新日期:2009-03-01 00:00:00

  • Evaluation of an educational intervention to encourage advance directive discussions between medicine residents and patients.

    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

    authors: Furman CD,Head B,Lazor B,Casper B,Ritchie CS

    更新日期:2006-08-01 00:00:00

  • Causes of death at autopsy in an inpatient hospice program.

    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

    authors: Abdel-Karim IA,Sammel RB,Prange MA

    更新日期:2007-08-01 00:00:00

  • Research methods priorities in geriatric palliative medicine.

    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

    authors: Aldridge Carlson MD

    更新日期:2013-08-01 00:00:00

  • Time to Death after Terminal Withdrawal of Mechanical Ventilation: Specific Respiratory and Physiologic Parameters May Inform Physician Predictions.

    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

    authors: Long AC,Muni S,Treece PD,Engelberg RA,Nielsen EL,Fitzpatrick AL,Curtis JR

    更新日期:2015-12-01 00:00:00

  • The Effect of 5 Minutes of Mindful Breathing to the Perception of Distress and Physiological Responses in Palliative Care Cancer Patients: A Randomized Controlled Study.

    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

    authors: Ng CG,Lai KT,Tan SB,Sulaiman AH,Zainal NZ

    更新日期:2016-09-01 00:00:00

  • Parental bereavement needs in the pediatric intensive care unit: review of available measures.

    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

    authors: Meert KL,Schim SM,Briller SH

    更新日期:2011-08-01 00:00:00

  • Hope in palliative care: from narcissism to self-transcendence in amyotrophic lateral sclerosis.

    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

    authors: Fanos JH,Gelinas DF,Foster RS,Postone N,Miller RG

    更新日期:2008-04-01 00:00:00

  • Birth Planning in Uncertain or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and Parents.

    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

    authors: Cortezzo DE,Bowers K,Cameron Meyer M

    更新日期:2019-11-01 00:00:00

  • Costs and implications of discarded medication in hospice.

    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

    authors: Speer ND,Dioso J,Casner PR

    更新日期:2013-08-01 00:00:00

  • Polypharmacy in Palliative Care: Two Deprescribing Tools Compared with a Clinical Review.

    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

    authors: McNeill R,Hanger HC,Chieng J,Chin P

    更新日期:2020-09-29 00:00:00

  • A comparison of sennosides-based bowel protocols with and without docusate in hospitalized patients with cancer.

    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

    authors: Hawley PH,Byeon JJ

    更新日期:2008-05-01 00:00:00

  • Complementary and alternative medicine use in children with cancer at the end of life.

    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

    authors: Heath JA,Oh LJ,Clarke NE,Wolfe J

    更新日期:2012-11-01 00:00:00

  • The Association between Glycemic Control in People with Diabetes and Symptoms at the End of Life: A Prospective Observational Consecutive Cohort Study.

    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

    authors: Kleinig PA,Woodman RJ,Currow DC

    更新日期:2020-03-01 00:00:00

  • Jewish medical ethics and end-of-life care.

    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

    authors: Kinzbrunner BM

    更新日期:2004-08-01 00:00:00

  • End-of-life care in nursing homes: residents in hospice compared to other end-stage residents.

    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

    authors: Buchanan RJ,Choi M,Wang S,Ju H

    更新日期:2004-04-01 00:00:00

  • Work Experiences of Patients Receiving Palliative Care at a Comprehensive Cancer Center: Exploratory Analysis.

    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

    authors: Glare PA,Nikolova T,Alickaj A,Patil S,Blinder V

    更新日期:2017-07-01 00:00:00

  • Fundamentals of education: "Edu-Mentals".

    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

    authors: Simpson DE,Biernat K

    更新日期:2001-07-01 00:00:00

  • Rehospitalization of older adults discharged to home hospice care.

    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

    authors: Goldenheim A,Oates D,Parker V,Russell M,Winter M,Silliman RA

    更新日期:2014-07-01 00:00:00

  • Insights from Bereaved Family Members about End-of-Life Care and Bereavement.

    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

    authors: Morris SE,Nayak MM,Block SD

    更新日期:2020-08-01 00:00:00

  • Palliative medicine physician education in the United States: a historical review.

    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

    authors: Case AA,Orrange SM,Weissman DE

    更新日期:2013-03-01 00:00:00

  • Characteristics and correlates of dyspnea in patients with advanced cancer.

    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

    authors: Reddy SK,Parsons HA,Elsayem A,Palmer JL,Bruera E

    更新日期:2009-01-01 00:00:00

  • "I'd Have to Basically Be on My Deathbed": Heart Failure Patients' Perceptions of and Preferences for Palliative Care.

    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

    authors: Hadler RA,Curtis BR,Ikejiani DZ,Bekelman DB,Harinstein M,Bakitas MA,Hess R,Arnold RM,Kavalieratos D

    更新日期:2020-07-01 00:00:00

  • A faculty development course for end-of-life care.

    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

    authors: Weissman DE

    更新日期:1998-04-01 00:00:00

  • Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities.

    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

    authors: Evans WG,Cutson TM,Steinhauser KE,Tulsky JA

    更新日期:2006-02-01 00:00:00

  • Incidence of hydromorphone-induced neuroexcitation in hospice patients.

    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

    authors: Kullgren J,Le V,Wheeler W

    更新日期:2013-10-01 00:00:00