scholarly journals Complexity In The Context of Palliative Care: A Scoping Review

2021 ◽  
Author(s):  
Hironori Ohinata ◽  
Maho Aoyama ◽  
Mitsunori Miyashita
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
Healthcare Providers ◽  
The United States ◽  
Patient Specific ◽  
Future Research ◽  
Care Needs ◽  
Living Situation ◽  
Research Activities ◽  
Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

A scoping review of palliative care for persons with severe persistent mental illness

2019 ◽  
Vol 17 (04) ◽  
pp. 479-487 ◽  
Author(s):  
Erin E. Donald ◽  
Kelli I Stajduhar
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
Scoping Review ◽  
Research Question ◽  
Healthcare Providers ◽  
Premature Death ◽  
Future Research ◽  
Research Activity ◽  
Complex Needs ◽  
Persistent Mental Illness

AbstractObjectivePeople with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.MethodA systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.ResultFour major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.Significance of resultsThis review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.

Spiritual issues in palliative medicine

2021 ◽  
pp. 1063-1071
Author(s):  
Susan McClement ◽  
Genevieve Thompson ◽  
Jamie Penner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Spiritual Care ◽  
Healthcare Providers ◽  
Future Research ◽  
Care Needs ◽  
Spiritual Assessment ◽  
Whole Person ◽  
Future Research Directions ◽  
Spiritual Suffering

The focus of palliative care is the whole person, including biopsychosocial, cultural, and spiritual dimensions of patient needs. The burgeoning literature examining the topic of spirituality within healthcare in general, and within palliative care in particular, underscores the notion that attending to patients’ spiritual care needs is a vital part of providing optimal palliative care. Yet healthcare providers frequently report that they feel ill equipped to provide spiritual care at the end of life and wrestle with many questions and uncertainties: What is spirituality? Why is it important? What is spiritual suffering? Who should provide spiritual care? How is a spiritual assessment conducted? What are some spiritual interventions for end of life care? What are some future research directions in the area of spiritual care? Answers to these questions form the basis of this chapter.

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.

Palliative Care for the Asian American Adult Population: A Scoping Review

2020 ◽  
pp. 104990912092806
Author(s):  
In Seo La ◽  
Mei Ching Lee ◽  
Katherine A. Hinderer ◽  
Iris Chi ◽  
Ruotong Liu ◽  
...  
Keyword(s):  
United States ◽  
Palliative Care ◽  
Health Care Providers ◽  
Asian American ◽  
Scoping Review ◽  
Adult Population ◽  
The United States ◽  
Future Research ◽  
Care Providers ◽  
Scoping Reviews

Background: The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications. Methods: A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O’Malley’s methodological framework was followed for scoping reviews. Results: Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs. Conclusion: A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

2020 ◽  
pp. 026921632096759
Author(s):  
Fenella J Gill ◽  
Zahraa Hashem ◽  
Roswitha Stegmann ◽  
Samar M Aoun
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
English Language ◽  
Support Needs ◽  
Care Needs ◽  
Caregiver Support ◽  
Paediatric Palliative Care ◽  
Heterogenous Population ◽  
Parent Caregivers ◽  
The Individual

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

scholarly journals Health Inequalities in Children and Adolescents: A Scoping Review of the Mediating and Moderating Effects of Family Characteristics

2021 ◽  
Vol 18 (15) ◽  
pp. 7739
Author(s):  
Miriam Blume ◽  
Petra Rattay ◽  
Stephanie Hoffmann ◽  
Jacob Spallek ◽  
Lydia Sander ◽  
...  
Keyword(s):  
Mental Health ◽  
Children And Adolescents ◽  
Health Inequalities ◽  
Scoping Review ◽  
The United States ◽  
Family Characteristics ◽  
Future Research ◽  
Childhood And Adolescence ◽  
Moderating Effects ◽  
Scoping Reviews

This scoping review systematically mapped evidence of the mediating and moderating effects of family characteristics on health inequalities in school-aged children and adolescents (6–18 years) in countries with developed economies in Europe and North America. We conducted a systematic scoping review following the PRISMA extension for Scoping Reviews recommendations. We searched the PubMed, PsycINFO and Scopus databases. Two reviewers independently screened titles, abstracts and full texts. Evidence was synthesized narratively. Of the 12,403 records initially identified, 50 articles were included in the synthesis. The included studies were conducted in the United States (n = 27), Europe (n = 18), Canada (n = 3), or in multiple countries combined (n = 2). We found that mental health was the most frequently assessed health outcome. The included studies reported that different family characteristics mediated or moderated health inequalities. Parental mental health, parenting practices, and parent-child-relationships were most frequently examined, and were found to be important mediating or moderating factors. In addition, family conflict and distress were relevant family characteristics. Future research should integrate additional health outcomes besides mental health, and attempt to integrate the complexity of families. The family characteristics identified in this review represent potential starting points for reducing health inequalities in childhood and adolescence.

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.

scholarly journals Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors

2019 ◽  
Vol 33 (6) ◽  
pp. 704-711 ◽  
Author(s):  
Franziska Flaig ◽  
Julia D Lotz ◽  
Kathrin Knochel ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Prenatal Diagnosis ◽  
Parental Support ◽  
Psychosocial Support ◽  
Healthcare Providers ◽  
Care Program ◽  
Future Research ◽  
Counseling Services ◽  
Qualitative Interview Study ◽  
Perinatal Palliative Care

Background: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%–85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. Aim: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived. Design: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña. Setting/participants: A total of 10 professionals from three different pregnancy counseling services participated in the study. Results: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved. Conclusion: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

End-of-Life Preferences in Afro-Caribbean Older Adults: A Systematic Literature Review

2014 ◽  
Vol 69 (3) ◽  
pp. 271-282 ◽  
Author(s):  
Karen O. Moss ◽  
Ishan C. Williams
Keyword(s):  
Older Adults ◽  
Cultural Identity ◽  
End Of Life ◽  
Healthcare Providers ◽  
Black Population ◽  
The United States ◽  
Future Research ◽  
End Of Life Decisions ◽  
Caribbean Immigrants ◽  
The Cost

Research suggests that older Blacks tend to prefer more aggressive treatment as they transition toward the end of life. African and Afro-Caribbean immigrants and their offspring are the fastest growing segments of the Black population in the United States. With the increasing population of Black older adults, the cost of end-of-life care is rising. This article presents a review of the literature on the end-of-life preferences of Afro-Caribbean older adults. Findings suggest that Afro-Caribbean older adults make end-of-life decisions with a significant emphasis on family structure, religion/spirituality, cultural identity, migration, and communication. Concerns regarding the meaning of end-of-life preparation and hospice are often viewed in ways that differ from that of healthcare providers. Future research is needed to investigate this process in the Afro-Caribbean older adult subset.

scholarly journals Public Health, Population Health, and Epidemiology Informatics: Recent Research and Trends in the United States

2017 ◽  
Vol 26 (01) ◽  
pp. 241-247 ◽  
Author(s):  
B. L. Massoudi ◽  
K. G. Chester
Keyword(s):  
Public Health ◽  
Population Health ◽  
Workforce Development ◽  
Health Informatics ◽  
English Language ◽  
The United States ◽  
Public Health Workforce ◽  
Future Research ◽  
Public Health Informatics ◽  
Research Activities

Summary Objectives: To survey advances in public and population health and epidemiology informatics over the past 18 months. Methods: We conducted a review of English-language research works conducted in the domain of public and population health informatics and published in MEDLINE or Web of Science between January 2015 and June 2016 where information technology or informatics was a primary subject or main component of the study methodology. Selected articles were presented using a thematic analysis based on the 2011 American Medical Informatics Association (AMIA) Public Health Informatics Agenda tracks as a typology. Results: Results are given within the context developed by Dixon et al., (2015) and key themes from the 2011 AMIA Public Health Informatics Agenda. Advances are presented within a socio-technical infrastructure undergirded by a trained, competent public health workforce, systems development to meet the business needs of the practice field, and research that evaluates whether those needs are adequately met. The ability to support and grow the infrastructure depends on financial sustainability. Conclusions: The fields of public health and population health informatics continue to grow, with the most notable developments focused on surveillance, workforce development, and linking to or providing clinical services, which encompassed population health informatics advances. Very few advances addressed the need to improve communication, coordination, and consistency with the field of informatics itself, as identified in the AMIA agenda. This will likely result in the persistence of the silos of public health information systems that currently exist. Future research activities need to aim toward a holistic approach of informatics across the enterprise.

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