scholarly journals Palliative Care for Severely Affected Patients with Multiple Sclerosis: When and Why? Results of a Delphi Survey of Health Care Professionals

2014 ◽  
Vol 17 (10) ◽  
pp. 1128-1136 ◽  
Author(s):  
Julia Strupp ◽  
Vanessa Romotzky ◽  
Maren Galushko ◽  
Heidrun Golla ◽  
Raymond Voltz
2006 ◽  
Vol 4 (1) ◽  
pp. 13-24 ◽  
Author(s):  
SHANE SINCLAIR ◽  
SHELLEY RAFFIN ◽  
JOSE PEREIRA ◽  
NANCY GUEBERT

Objective:Although spirituality as it relates to patients is gaining increasing attention, less is known about how health care professionals (HCP) experience spirituality personally or collectively in the workplace. This study explores the collective spirituality of an interdisciplinary palliative care team, by studying how individuals felt about their own spirituality, whether there was a shared sense of a team spirituality, how spirituality related to the care the team provided to patients and whether they felt that they provided spiritual care.Methods:A qualitative autoethnographic approach was used. The study was conducted in a 10-bed Tertiary Palliative Care Unit (TPCU) in a large acute-care referral hospital and cancer center. Interdisciplinary team members of the TPCU were invited to participate in one-to-one interviews and/or focus groups. Five interviews and three focus groups were conducted with a total of 20 participants.Results:Initially participants struggled to define spirituality. Concepts of spirituality relating to integrity, wholeness, meaning, and personal journeying emerged. For many, spirituality is inherently relational. Others acknowledged transcendence as an element of spirituality. Spirituality was described as being wrapped in caring and often manifests in small daily acts of kindness and of love, embedded within routine acts of caring. Palliative care served as a catalyst for team members' own spiritual journeys. For some participants, palliative care represented a spiritual calling. A collective spirituality stemming from common goals, values, and belonging surfaced.Significance of results:This was the first known study that focused specifically on the exploration of a collective spirituality. The culture of palliative care seems to foster spiritual reflection among health care professionals both as individuals and as a whole. While spirituality was difficult to describe, it was a shared experience often tangibly present in the provision of care on all levels.


2010 ◽  
Vol 71 (9) ◽  
pp. 1687-1691 ◽  
Author(s):  
Kevin Brazil ◽  
Sharon Kassalainen ◽  
Jenny Ploeg ◽  
Denise Marshall

2019 ◽  
Vol 35 (3) ◽  
pp. 185-191 ◽  
Author(s):  
David A. Agom ◽  
Stuart Allen ◽  
Sarah Neill ◽  
Judith Sixsmith ◽  
Helen Poole ◽  
...  

Background: There is a dearth of research focusing on identifying the social complexities impacting on oncology and palliative care (PC), and no study has explored how the health-care system in Nigeria or other African contexts may be influencing utilization of these services. Aim: This study explored how social complexities and the organization of health-care influenced the decision-making process for the utilization of oncology and PC in a Nigerian hospital. Methods: This qualitative study used an interpretive descriptive design. Data were collected using semistructured interview guides with 40 participants, comprising health-care professionals, patients, and their families. Thematic analysis was conducted to generate and analyze patterns within the data. Findings: Three themes were identified: dysfunctional structural organization of the health-care delivery system, service-users’ economic status, and the influence of social networks. The interrelationship between the themes result in patients and their family members decisions either to present late to the hospital, miss their clinical appointments, or not to seek oncological health care and PC. Conclusion: This article offers insights into the role of the health-care system, as organized currently in Nigeria, as “autoinhibitory” and not adequately prepared to address the increasing burden of cancer. We therefore argue that there is a need to restructure the Nigerian health-care system to better meet the needs of patients with cancer and their families as failure to do so will strengthen the existing inequalities, discourage usage, and increase mortality.


2020 ◽  
Vol 30 (4) ◽  
pp. 720-727
Author(s):  
Marijanne Engel ◽  
Andrée van der Ark ◽  
Rosanne Tamerus ◽  
Agnes van der Heide

Abstract Background When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses. Methods We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test. Results A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics. Conclusion Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.


2018 ◽  
Vol 33 (4) ◽  
pp. 215-241 ◽  
Author(s):  
Tao Wang ◽  
Alex Molassiotis ◽  
Betty Pui Man Chung ◽  
Jing-Yu Tan

Objectives: This study aimed to obtain an overview of the current research status of palliative care in Mainland China and identify research directions for future studies by characterizing palliative care studies conducted among patients with any life-limiting illness in Mainland China and published in a peer-reviewed journal before November 2016. Methods: A review guide with 7 categories was initially developed based on existing international palliative care definitions and guidelines through content analysis. Ten databases were used to identify relevant studies from the inception of online cataloging to November 2016. Studies conducted in Mainland China and their research topic that fell within one of the categories of the review guide were included for further analysis. Descriptive analysis was adopted to summarize the relevant findings. Results: 54 studies found to be relevant were included for the analysis. Three studies on “palliative care education and training” (category 1) asserted that education and training programs were scant in Mainland China and that only 1 program had been devised within the health-care context of Shanghai. Five studies on “palliative care screening and timely identification” (category 2) highlighted the absence of early screening criteria or checklists and referral procedures for palliative care. Thirty-one studies on “palliative care needs assessment (n = 12/31) and implementation (n = 19/31)” (category 3) were identified, and various methodological flaws were observed in most of these included studies. Twelve studies on “advanced decision-making” (category 4) were identified, all of which focused on investigating the attitudes of patients with cancer, their families, and/or health-care professionals toward advanced decision-making only. The percentage of patients, family members, and health-care professionals who held positive attitudes toward advanced decision-making were varied and suboptimal, particularly for family members (51.4%-58.0%). Five studies on “caring for patients at the end of life” (category 5) were identified, and the experience of health-care professionals in caring for those patients was explored. No studies relating to “death and bereavement care” (Category 6) and “psychological support for palliative care providers” (Category 7) were identified. Conclusion: The current research status of palliative care in Mainland China remains at an early stage with minimal palliative care services used. Although several knowledge gaps were identified, the first step, which should be addressed, is assessing the palliative care needs. An appropriate and ongoing needs assessment could provide important information for constructing comprehensive education and training programs of palliative care, identifying prognostic factors of timely palliative care referral, and developing evidence-based and tailored palliative care services.


Sign in / Sign up

Export Citation Format

Share Document