Are patient portals being used to support palliative and end-of-life care?: A scoping review (Preprint)

2021 ◽  
Author(s):  
M. Pilar Ingle ◽  
Cristina Valdovinos ◽  
Kelsey L. Ford ◽  
Shou Zhou ◽  
Sheana Bull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Future Research ◽  
Patient Portal ◽  
Patient Portals ◽  
User Acceptability ◽  
National Coalition ◽  
Meta Analyses ◽  
Hospice And Palliative Care

BACKGROUND Although patient portals are widely used for health promotion, little is known about use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE To identify and assess user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS A scoping review of the academic literature directed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR). We searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention, focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care, targeted adults with serious illness and/or caregivers, and were offered via patient portal tethered to an electronic medical record. Authors independently screened titles and abstracts (N=796) for eligibility. Full texts (N=84) sources were reviewed. Descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool were abstracted from included sources (N=19). RESULTS Nineteen articles describing 12 tools were included, addressing the following PCEOL domains: ethical/legal (N=5), physical (N=5), and psychological/psychiatric (N=2). No tools for bereavement or hospice were identified. Studies reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS PCEOL patient portal tools are understudied. As medical care increasingly moves towards virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portals resources and evaluate their impact on health outcomes.

Nurse Burnout in Hospice and Palliative Care: A Scoping Review

2021 ◽  
pp. 105413732110398
Author(s):  
Erica Frechman ◽  
Patricia M. Wright
Keyword(s):  
Professional Development ◽  
Palliative Care ◽  
Scoping Review ◽  
Future Research ◽  
Self Awareness ◽  
Personal Factors ◽  
Workplace Issues ◽  
Mitigating Factors ◽  
Hospice And Palliative Care ◽  
Nursing Professional

Burnout in hospice and palliative care nurses is a growing issue, especially in light of the COVID-19 pandemic. However, few studies have focused specifically on burnout in this population. A scoping review was undertaken to identify what is known about burnout among hospice and palliative care nurses, and to unify disparate findings. Analysis of eight articles revealed three overarching categories: personal factors, organizational/workplace factors, and nursing professional development factors. Each category was then divided into three cross-cutting subcategories: contributory and noncontributory factors, mitigating factors, and workplace issues. Recommendations for individuals include self-care as well as self-awareness of intrinsic characteristics that can predispose one to burnout. Within the workplace, leaders are challenged to support evidence-based practice and ongoing education. Role modeling positive communication skills, effective conflict mitigation, responsiveness, promotion of equity, and workplace commitment also help to create a culture of wellness. Nursing professional development may aid in resilience-building, and promotion of self-efficacy, self-confidence, and assertiveness. Although all identified recommendations were derived from the literature, no interventional studies have been conducted to test the effects of suggested interventions. Future research should include interventional studies as well as qualitative research to capture nuanced experiences of burnout in hospice and palliative care nurses.

Chinese Americans’ use of patient portal systems: a scoping review (Preprint)

2021 ◽  
Author(s):  
Katharine Lawrence ◽  
Stella Chong ◽  
Holly Krelle ◽  
Timothy Roberts ◽  
Lorna Thorpe ◽  
...  
Keyword(s):  
Scoping Review ◽  
Chinese American ◽  
Chinese Americans ◽  
Barriers And Facilitators ◽  
Future Research ◽  
Sample Population ◽  
Patient Portal ◽  
Patient Portals ◽  
Cross Sectional ◽  
Use Patterns

BACKGROUND Patient portals are increasingly deployed in healthcare systems as communication and information-sharing tools for patients and providers. While portals show promise in addressing healthcare access, quality, and outcomes, research on portal access and use patterns among diverse populations is limited, including among Chinese Americans. OBJECTIVE This study aimed to summarize existing evidence on the access and use patterns, barriers, and facilitators of patient portals among Chinese Americans, and to identify gaps and areas for future research. METHODS The authors conducted a scoping review using the PRISMA Protocol for Scoping Reviews of articles published in major databases (MEDLINE, Embase, PsycINFO) on the topic of patient portals and Chinese Americans. Authors independently reviewed the papers during initial screening and full-text review. The studies were analyzed and coded for study method type, sample population, and main outcomes of interest. RESULTS In total 17 articles were selected for inclusion in the review. The included articles varied in study aims, methodology, data collection, sample population, and geographic areas of study. The majority of studies were cross-sectional in nature. Major findings and themes identified from the articles include: variable patterns of patient portal access and use among Chinese Americans compared to other racial/ethnic groups; limited evidence on the specific barriers and facilitators of access and use for this group; a reliance on quantitative proxy measures (e.g. log-ins, click-throughs) to assess portal access and use; and a pattern of aggregating Chinese American-related data into a larger Asian or Asian American designation. CONCLUSIONS There is limited research dedicated to understanding the use patterns, experiences, and needs of Chinese Americans who access and utilize patient portal systems. Most research is cross-sectional, focusing on disparities in use and access, and have tended to aggregate the Chinese American experience into that of Asian Americans. Future research should focus specifically on Chinese Americans and prioritize more detailed evaluations of their relationship to patient portal technology to understand specific use patterns, preferences, and needs. A broader understanding of the diversity of health technology users can help ensure applicable and equitable design, development, and implementation of these tools. CLINICALTRIAL N/a

Increasing our understanding of nonphysical suffering within palliative care: A scoping review

2021 ◽  
pp. 1-16 ◽  
Author(s):  
Maxxine Rattner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Healthcare Providers ◽  
Palliative Sedation ◽  
Primary Sources ◽  
Future Research ◽  
Social Emotional ◽  
Relief Of Suffering ◽  
Hastened Death

Abstract Objective Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering — both physical and nonphysical — little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap. Method Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR “end of life” OR “end-of-life” OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria. Results Losses, worries, and fears comprise patients’ primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients’ experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering. Significance of results This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.

scholarly journals Death, Dying, and End-of-Life Experiences Among Refugees: A Scoping Review

2018 ◽  
Vol 34 (2) ◽  
pp. 139-144 ◽  
Author(s):  
Farah Madi ◽  
Hussein Ismail ◽  
Fouad M. Fouad ◽  
Hala Kerbage ◽  
Shahaduz Zaman ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Life Experiences ◽  
Death And Dying ◽  
Future Research ◽  
Inclusion Criteria ◽  
Life Challenges ◽  
High Commissioner ◽  
Final Settlement

Background: The objective of this scoping review is to identify and map the global literature on death, dying, and end-of-life experiences among refugees. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field. Methods: We included articles that met the following inclusion criteria: (1) Population: Refugees and/or internally or externally displaced individuals due to wars, conflicts, nonnatural disasters, or emergencies; (2) Setting: End-of-life phase, dying, and death that took place following the refuge or displacement and reported after the year 1980; and (3) Study Design: All types of studies including but not limited to primary studies, narrative reviews, systematic reviews, news, editorials, commentaries, opinion pieces, technical reports, and policy briefs. A systematic search of the following electronic databases: Medline, Scopus, CINAHL, and JSTOR yielded 11 153 records. The search of the United Nations High Commissioner for Refugees database Refworld retrieved an additional 7510 records. Results: Seven articles met our inclusion criteria. All articles were coauthored by scholars in universities/research institutes in high-income countries, and except for one, all were conducted in the country of the final settlement of refugees. One article adopted a qualitative approach, another article adopted a mixed-methods approach, one was a narrative review, and 4 articles were reviews of the literature. Three articles discussed access to medical/palliative care among older refugees, and 3 others addressed bereavement and death arrangements. Moreover, one article examined how transmigration and previous experiences from 2 cultural settings in home countries affect the contemplation of death and dying. Implications: Research on end-of-life experiences among refugees is sorely lacking. This study raises awareness of the need for empirical data on end-of-life challenges and palliative care among refugees, thus equipping humanitarian agencies with a more explicit and culturally sensitive lens targeting those with life-limiting conditions.

scholarly journals The roles, responsibilities and practices of healthcare assistants in out-of-hours community palliative care: A systematic scoping review

2020 ◽  
Vol 34 (8) ◽  
pp. 976-988
Author(s):  
Anne Fee ◽  
Deborah Muldrew ◽  
Paul Slater ◽  
Sheila Payne ◽  
Sonja McIlfatrick ◽  
...  
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
Grey Literature ◽  
Bibliographic Databases ◽  
Future Research ◽  
Emotional Needs ◽  
Out Of Hours ◽  
Scoping Reviews ◽  
Role Responsibilities ◽  
Meta Analyses

Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.

scholarly journals Hypnotherapy for Procedural Pain and Distress in Children: A scoping Review Protocol

Pain Medicine ◽  
2021 ◽  
Author(s):  
Daly Geagea ◽  
Zephanie Tyack ◽  
Roy Kimble ◽  
Lars Eriksson ◽  
Vince Polito ◽  
...  
Keyword(s):  
Scoping Review ◽  
Grey Literature ◽  
Cochrane Library ◽  
Procedural Pain ◽  
Future Research ◽  
Theoretical Frameworks ◽  
Eligibility Criteria ◽  
Pharmacological Agents ◽  
Review Protocol ◽  
Meta Analyses

Abstract Objective Inadequately treated pain and distress elicited by medical procedures can put children at higher risks of acute and chronic biopsychosocial sequelae. Children can benefit from hypnotherapy, a psychological tailored intervention, as an adjunct to pharmacological agents to address the multiple components of pain and distress. Despite providing evidence on the effectiveness and potential superiority of hypnotherapy to other psychological interventions, research on hypnotherapy for paediatric procedural pain and distress has been predominantly limited to oncology and needle procedures. Plus, there is a lack of reporting of intervention manuals, factors influencing hypnotic responding, pain unpleasantness outcomes, theoretical frameworks, adverse events, as well as barriers and facilitators to the feasibility of delivering the intervention and study procedures. The proposed review aims to map the range and nature of the evidence on hypnotherapy for procedural pain and distress in children to identify gaps in literature and areas requiring further investigation. Methods This review will follow the Arksey and O'Malley (2005) methodology and incorporate additional scoping review recommendations by The Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses. Relevant studies will be identified through searching published literature databases (PubMed, Cochrane Library, PsycINFO, Embase, CINAHL, Scopus and Web of Science) and grey literature in addition to hand-searching of reference lists and key journals. Two authors will independently screen titles and abstracts of search results followed by full-texts review against eligibility criteria. Conclusion Findings are anticipated to guide future research and inform the development of tailored hypnotic interventions in children.

scholarly journals Dignity Therapy for End-of-Life Care Patients: A Literature Review

2021 ◽  
Vol 8 ◽  
pp. 237437352199695
Author(s):  
Pearl Ed Cuevas ◽  
Patricia Davidson ◽  
Joylyn Mejilla ◽  
Tamar Rodney
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Cultural Context ◽  
Age Groups ◽  
Empirical Support ◽  
Family Care ◽  
Life Care ◽  
Dignity Therapy ◽  
Meta Analyses

Dignity therapy as an intervention has been used for individuals receiving palliative care. The goal of this review is to explore the current state of empirical support to its use for end-of-life care patients. Data sources were articles extracted from search engines PubMed, Cochrane, Embase, CINAHL, Web of Science, and PsycINFO. The years searched were 2009 to 2019 (10-year period). The review process was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Results revealed the feasibility, acceptability, satisfaction, and effectiveness of dignity therapy for life-limiting cases/conditions of patients in different age groups. It also highlighted the importance of the therapy setting and the need to apply this in the cultural context. The meaning of dignity therapy to patients and their family care members also emerged. Findings showed most patients displayed the need to leave a legacy and from this their core values surfaced. In conclusion, this review highlighted the contribution of dignity therapy to the holistic care of patients who hope to leave a legacy. The therapy was also relevant to decrease the anxiety; depression, and burden of family members throughout the palliative care period of their loved ones.

scholarly journals Palliative Care as Response to Suffering at End of Life

2014 ◽  
Vol 6 (2) ◽  
pp. 227-245
Author(s):  
Daniela Moşoiu
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Health Care System ◽  
Spiritual Distress ◽  
History Of Development ◽  
History Of ◽  
Hospice And Palliative Care ◽  
Care System

Abstract Persons suffering from chronic and life limiting illnesses often have unrelieved symptoms such as pain, depression, fatigue, and psychosocial and spiritual distress. In Romania they are frequently left in the care of their families with little support from the health care system. It seems a paradox that those who are the sickest persons in a country find little place in the health care system. This article presents palliative care as a solution to the suffering for these patients and their families by describing the concept, models of services, its beneficiaries and benefits and presenting the history of development of hospice and palliative care worldwide and in Romania.

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