Abstract:
OBJECTIVE:The purpose of the study was to describe the perceptions of community residence (CR) staff who have cared for older adults with developmental disabilities (ADDs) that are at the end of life. DESIGN:This exploratory, descriptive study utilized qualitative methods that involved semistructured interviews with CR staff members. SETTING:The setting was a CR that was also an intermediate care facility (ICF) that provided 24-hour residential treatment for medical and/or behavioral needs. At least one registered nurse was present at all times. A CR with at least one resident who was over the age of 40 and had a diagnosis of a life-limiting illness was chosen. PARTICIPANTS:Participants included three frontline workers, four managers, and one registered nurse. METHODS:In-person interviews included open-ended questions about end-of-life care for older ADDs. Demographics such as age, length of time working with ADDs, and education were analyzed using descriptive statistics. Descriptive statistics were used to analyze demographics such as age, and length of time working with ADDs. Interviews were digitally recorded, transcribed, and analyzed using grounded theory techniques. RESULTS:Four themes illuminated unique elements of the provision of end-of-life care in a CR: (1) influence of relationships, (2) expression of individuality, (3) contribution of hospice, (4) grief and bereavement, and (5) challenges to end-of-life care. CONCLUSION:The results provided insight into the unique needs of older ADDs at the end of life and how this influences their care. Emphasis was also placed on the importance of specialized care that involved collaborations with hospice for older ADDs who remain in a CR at the end of life.
journal_name
J Palliat Medjournal_title
Journal of palliative medicineauthors
Kirkendall AM,Waldrop Ddoi
10.1089/jpm.2012.0408subject
Has Abstractpub_date
2013-09-01 00:00:00pages
1121-4issue
9eissn
1096-6218issn
1557-7740journal_volume
16pub_type
杂志文章abstract:BACKGROUND:Inpatient Code Status Discussions (CSDs) are commonly facilitated by resident physicians, despite inadequate training. We studied the efficacy of a CSD communication skills training intervention for internal medicine residents. METHODS:This was a prospective, randomized controlled trial of a multimodality c...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,随机对照试验
doi:10.1089/jpm.2011.0446
更新日期:2012-07-01 00:00:00
abstract::Studies examining individuals' preferences reflect a broad consensus that the end of life is a period during which medical care should be different from that in other periods in patients' lives. More specifically, patients, families, and health care providers believe that medical care during this unique period should ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2005.8.s-12
更新日期:2005-01-01 00:00:00
abstract:BACKGROUND:In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus Project (NCP) were validated for pediatric HBHPC, and a ninth domain of "Co...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0056
更新日期:2018-10-01 00:00:00
abstract:: Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0111
更新日期:2019-12-01 00:00:00
abstract:BACKGROUND:Although religions is important to many people with cancer, few studies have explored the relationship between religious coping and well-being in a prospective manner, using validated measures, while controlling for important covariates. METHODS:One hundred ninety-eight women with stage I or II and 86 women...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2008.0250
更新日期:2009-06-01 00:00:00
abstract:: Background: Delivery of health services in the province of Ontario is organized into 14 Local Health Integration Networks (LHINs), and further into 76 LHIN subregions, making these a natural unit of comparing the regional differences in palliative care receipt among decede...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0573
更新日期:2019-11-01 00:00:00
abstract::Physicians constantly confront to death and respond in a variety of ways to the many deaths that they witness and to their own sense of mortality. Student-doctors should be exposed, prior to and during their clinical training, to these different types of responses, so that they can prepare for their encounters with th...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/10966210260499023
更新日期:2002-12-01 00:00:00
abstract:BACKGROUND:Millions of older adults require Medicaid-funded home care, referred to as In-Home Supportive Services (IHSS). Many of these individuals experience serious illness, disability, and common symptoms such as pain and shortness of breath. OBJECTIVE:To explore whether and how to integrate symptom assessment into...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2017.0704
更新日期:2018-10-01 00:00:00
abstract:: Background: Depression is common in the oncology patient population. Little data exist on the impact of depression on health care utilization. Objectives: We evaluated the prevalence of depression and the relationship between d...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2020.0329
更新日期:2021-01-21 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
abstract::The emerging role of the advanced practice nurse (APN) as a palliative care provider is gaining increased recognition in the United States. The APN's ability to perform comprehensive physical evaluations, order and interpret diagnostics, and prescribe appropriate medications while receiving reimbursement allow this pr...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662103322515211
更新日期:2003-10-01 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:OBJECTIVES:Continuity, coordination, and transitions of care are key to high-quality medical care for patients with serious and advanced illness. We conducted a systematic review to evaluate the impact of interventions targeting these areas in this population. METHODS:We searched PubMed, CINAHL, PsycINFO, Cochrane, an...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,meta分析,评审
doi:10.1089/jpm.2012.0317
更新日期:2013-04-01 00:00:00
abstract:BACKGROUND:Inpatient palliative consultation are generally provided to seriously ill hospitalized patients with the intent to alleviate pain and suffering and develop a plan of care for the patient. Although numerous benefits of this service have been documented, little is known about hospital readmission rates and fac...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2012.0259
更新日期:2012-12-01 00:00:00
abstract:BACKGROUND:Research on the effectiveness of evidence-based practices in the treatment of depression and anxiety with palliative care populations is primarily limited to individuals having specific conditions such as cancer. OBJECTIVE:This meta-analysis examined the effect of psychotherapy on depression and anxiety amo...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,meta分析,评审
doi:10.1089/jpm.2017.0576
更新日期:2018-07-01 00:00:00
abstract:BACKGROUND:Depression and pain often coexist in terminally ill patients, but few studies have examined their relationship among larger samples. Other psychosocial factors experienced by patients may become barriers to pain management and affect the relationship between depression and pain. OBJECTIVE:This study aims to...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0555
更新日期:2014-05-01 00:00:00
abstract:OBJECTIVES:To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. DESIGN:Descriptive thematic analysis. SETTING:Multinational studies were conducted in both the outpatient and inpatient setting. MEASUREMENTS:Extensive bibliogra...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2009.0388
更新日期:2010-05-01 00:00:00
abstract::Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many pallia...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0314
更新日期:2019-11-01 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: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:BACKGROUND:There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. OBJECTIVE:Our aim was to review advance care planning for children with l...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0374
更新日期:2014-09-01 00:00:00
abstract:OBJECTIVE:Describe the establishment of the palliative care quality network (PCQN) with guidance on how teams can develop similar collaborations. BACKGROUND:In the current healthcare environment, palliative care (PC) teams must be able to demonstrate value and provide efficient care while supporting the clinicians who...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2016.0514
更新日期:2017-08-01 00:00:00
abstract:: Background: Although there is growing evidence that close reading of literature and reflective writing can improve providers' appreciation of the patient experience, foster physician development, and combat burnout, there has been less work on the experience of reading lit...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2020.0078
更新日期:2020-08-19 00:00:00
abstract:BACKGROUND:Exploring preferences for and barriers to quality end-of-life care is essential to improving care for dying individuals. Young adults often are involved or will be involved in decisions about the care of a loved one, and little research has examined opinions about end-of-life care among this population. RES...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2008.0265
更新日期:2009-04-01 00:00:00
abstract:INTRODUCTION:Performing death pronouncement and communicating effectively with gathered family is an important skill relevant to end-of-life care. Often it is a responsibility of first-year residents who lack proper training or emotional preparation for the task. Residents' tension about this task presents an opportuni...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662104322737322
更新日期:2004-02-01 00:00:00
abstract:PURPOSE:To clarify physician- and nurse-reported effects of intravenous hydration therapy on symptoms of terminally ill patients with cancer. METHODS:A cross-sectional questionnaire survey of Japanese physicians and nurses. The respondents were requested to report their clinical observations about improvement or deter...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2004.7.683
更新日期:2004-10-01 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:: 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:: Background: Patients with pulmonary hypertension (PH) experience distressing symptoms that can undermine quality of life (QoL) and treatment adherence. Complementary health approaches are known to help manage symptoms of chronic conditions and may have therapeutic benefits...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0359
更新日期:2020-05-01 00:00:00
abstract:INTRODUCTION:Many proponents of hospice care believe that this service is underutilized. OBJECTIVE:To determine physicians' perceptions of hospice utilization and of their own hospice referral pattern; their perceived and actual knowledge of appropriate hospice referral diagnoses; and perceived barriers to hospice ref...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/1096621041349518
更新日期:2004-06-01 00:00:00