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Frontiers in Public Health 2023Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential...
Public health palliative care interventions that enable communities to support people who are dying and their carers: a scoping review of studies that assess person-centered outcomes.
BACKGROUND
Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers.
OBJECTIVE
To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers.
METHODS
A scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines.
RESULTS
The search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy.
CONCLUSION
We found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions.
Topics: Humans; Palliative Care; Caregivers; Public Health; Quality of Life; Terminal Care
PubMed: 37564426
DOI: 10.3389/fpubh.2023.1180571 -
Annals of Palliative Medicine Sep 2023
Topics: Humans; Palliative Care; Terminal Care; Home Care Services
PubMed: 37355809
DOI: 10.21037/apm-23-339 -
Scandinavian Journal of Caring Sciences Dec 2023To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported. (Review)
Review
AIM
To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported.
METHODS
This review followed a methodology outlined in the literature for integrative reviews. A literature search supplemented by a manual search was conducted on four electronic databases during 2020 to 2021: PubMed, CINAHL, PsycINFO, and Cochrane Library. A critical appraisal of the included studies was performed, and data were analysed using inductive content analysis.
RESULTS
The literature search resulted in 4990 articles, of which 14 articles were included in this review. Four main categories were identified concerning the participation of family members in hospital inpatient palliative care: participation in the physical care, provision of emotional support, promoting good patient care, and support provided by healthcare professionals for family members' participation. Family members' participation can be supported in different ways, including active communication and adequate information.
CONCLUSION
Family members' participation in hospital inpatient palliative care has been an important part of palliative care in hospital settings. Family members should be offered the opportunity to participate in patient care, and their presence in the hospital should be accommodated. Research on the topic is still scarce, and future research is needed from different perspectives, including intervention research.
Topics: Humans; Palliative Care; Inpatients; Family; Hospice and Palliative Care Nursing; Health Personnel
PubMed: 34958141
DOI: 10.1111/scs.13062 -
Annals of Palliative Medicine Mar 2024Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC)... (Review)
Review
BACKGROUND
Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the most current literature based on discipline, geography, population, methodology, and themes among interdisciplinary PPC teams and the management of psychological distress in AYAs.
METHODS
Using a scoping review design, a protocol was registered in Open Science Framework (https://osf.io/fb48n/). Sources for evidence included online databases (Scopus, PubMed, Embase, PsycInfo, CINAHL), Google Scholar, clinical manuals, texts, national organization webpages, and reference lists, all searched June, 2023. Interviews with content experts and authors identified additional sources. Those describing interdisciplinary palliative care (PC) and management of psychological/psychiatric distress in seriously ill AYAs, written in English, and completed in the U.S. between 2018-2023 were included. International citations were included if American literature was reviewed, or if authors described internationally developed PC standards by which American providers must practice. Clear and comprehensive data charting was completed by an independent reviewer, using a deductive approach with a standardized data-charting form developed prior to extraction.
RESULTS
Sixty-five references met inclusion criteria. Psychologists most frequently published in the past 5 years regarding integration of their care into palliative teams. Authors wrote from eastern U.S., qualitatively studying the PC team in the oncology space. Of eight themes identified, barriers, facilitators, and interventions were most frequently reported.
CONCLUSIONS
Role delineation among PPC teams can be difficult in the management of psychological distress, due to lack of training and consistent collaboration models among cancer and non-cancer populations. Current literature highlights a large gap in psychological/psychiatric training. However, optimized pain control, routine screening of distress, open/honest/developmentally appropriate communication, and early advance care planning are interventions by which palliative providers can begin managing psychological distress in seriously ill AYAs. While the presence of psychologists and psychiatrists is widely variable among PPC teams, their expertise can vastly advance the field of PC, through collaboration, education, research, and advocacy.
Topics: Adolescent; Young Adult; Humans; Child; Palliative Care; Neoplasms; Medical Oncology; Advance Care Planning; Psychiatry
PubMed: 38509651
DOI: 10.21037/apm-23-501 -
Journal of Pain and Symptom Management Aug 2023Palliative care remains largely inaccessible in low- and middle-income countries (LMICs), and efforts to increase access are impeded by lack of training of proven...
CONTEXT
Palliative care remains largely inaccessible in low- and middle-income countries (LMICs), and efforts to increase access are impeded by lack of training of proven effectiveness for physicians.
OBJECTIVES
To measure the effectiveness of palliative care training for Vietnamese physicians.
METHODS
The palliative care-related knowledge, attitudes, and self-assessment of Vietnamese physicians were studied prior to a basic course in palliative care (baseline), just after the physicians completed the course (post), and 6-18 months later (follow-up).
RESULTS
The self-assessment scores and knowledge scores increased significantly from baseline to post and decreased significantly from post to follow-up, but the follow-up scores remained significantly higher than baseline. There were significant interactions between changes over time of the knowledge scores and baseline age, degree, years of graduation, training, type of work, and whether participants had ever prescribed morphine for pain. Medically appropriate attitudes increased significantly from baseline to post and did not decrease significantly from post to follow-up.
CONCLUSION
Our basic palliative care course in Vietnam resulted in significant and enduring improvements among physicians in palliative care-related knowledge, attitudes, and self-assessed competence. To respond to the enormous unmet need for palliative care in LMICs, primary care providers and physician-specialists in many fields, among others, should receive palliative care training of proven effectiveness, receive ongoing mentoring or refresher training, and be given the responsibility and opportunity to practice what they learn.
Topics: Humans; Palliative Care; Vietnam; Health Knowledge, Attitudes, Practice; Physicians; Pain; Attitude of Health Personnel; Surveys and Questionnaires
PubMed: 37088114
DOI: 10.1016/j.jpainsymman.2023.04.020 -
Orphanet Journal of Rare Diseases Sep 2023Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal fragility disorders with multi-system and secondary effects, in which blistering and...
BACKGROUND
Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal fragility disorders with multi-system and secondary effects, in which blistering and erosions occur in response to friction/mechanical trauma. Considering the incurable and potentially life-limiting nature of the condition and the challenges posed by its symptoms, a palliative approach to EB-related care is necessary. However, knowledge and experience related to the provision of EB palliative care is minimal. Evidence-based, best care guidelines are needed to establish a base of knowledge for practitioners to prevent or ease suffering while improving comfort at all stages of the illness, not just the end of life.
METHODS
This consensus guideline (CG) was begun at the request of DEBRA International, an international organization dedicated to improvement of care, research, and dissemination of knowledge for EB patients, and represents the work of an international panel of medical experts in palliative care and EB, people living with EB, and people who provide care for individuals living with EB. Following a rigorous, evidence-based guideline development process, the author panel identified six clinical outcomes based on the results of a survey of people living with EB, carers, and medical experts in the field, as well as an exhaustive and systematic evaluation of literature. Recommendations for the best clinical provision of palliative care for people living with EB for each of the outcomes were reached through panel consensus of the available literature.
RESULTS
This article presents evidence-based recommendations for the provision of palliative healthcare services that establishes a base of knowledge and practice for an interdisciplinary team approach to ease suffering and improve the quality of life for all people living with EB. Any specific differences in the provision of care between EB subtypes are noted.
CONCLUSIONS
Because there is yet no cure for EB, this evidence-based CG is a means of optimizing and standardizing the IDT care needed to reduce suffering while improving comfort and overall quality of life for people living with this rare and often devastating condition.
Topics: Epidermolysis Bullosa; Palliative Care; Terminal Care; Humans
PubMed: 37667330
DOI: 10.1186/s13023-023-02870-8 -
Palliative Medicine Dec 2023
Topics: Humans; Palliative Care; Hospice and Palliative Care Nursing
PubMed: 37904308
DOI: 10.1177/02692163231206998 -
Patient Education and Counseling Oct 2023The aim of this study was to systematically review and synthesize the literature on patients' perceptions of hope in palliative care. (Review)
Review
OBJECTIVE
The aim of this study was to systematically review and synthesize the literature on patients' perceptions of hope in palliative care.
METHODS
PubMed, Scopus, SocINDEX, Cochrane, and Web of Science were screened against the eligibility criteria. After familiarization with the data and conduction of the coding process, studies were thematically analyzed using Braun and Clarke's methodology. The research question guiding our analysis was: what is said about hope from patients in PC?
RESULTS
The database searches yielded 24 eligible studies. Three main themes emerged from the studies: Hope beliefs (encompassing patients' understanding of hope and characteristics assigned to it), Hope functions (including the role that hope plays for patients) and Hope work (highlighting aspects that in patients' perspective cultivate hope).
CONCLUSION
This review emphasizes the importance of acknowledging patients' understanding of hope, its role, and the efforts required to sustain it. In particular, it suggests that hope serves as a valuable strategy, fostering meaningful personal relationships towards end of life.
PRACTICE IMPLICATIONS
In order to address communication challenges in clinical practice, a potential fruitful strategy for nurturing hope could involve engaging family and friends in hope interventions facilitated by healthcare professionals.
Topics: Humans; Palliative Care; Patients; Narration; Hospice and Palliative Care Nursing; Perception
PubMed: 37413808
DOI: 10.1016/j.pec.2023.107879 -
Annals of Palliative Medicine Sep 2023A chronic wound is one that is physiologically compromised as a result of a disturbance of the wound-healing cycle brought on by, among other parameters, poor... (Review)
Review
BACKGROUND AND OBJECTIVE
A chronic wound is one that is physiologically compromised as a result of a disturbance of the wound-healing cycle brought on by, among other parameters, poor angiogenesis, innervation, or cellular migration. Given the high frequency and incidence rates of different wound categories in clinical practice in the setting of chronically ill patients, wound management is becoming an increasingly important component and pillar of the overall care of patients with terminal illnesses. The purpose of this narrative review is to provide an overview and evaluation of the assessment methods and management of chronic wounds in the clinical practice of palliative care.
METHODS
Papers on the management of wounds in palliative care have been retrieved using PubMed to July 2023. The search terms used included "wounds", "ulcers", "palliative care", "palliative management", and "end of life".
KEY CONTENT AND FINDINGS
The review highlights the importance of early palliative care referral and total pain management in the management of wounds. Patients with wounds often report multiple symptoms, and pain is one of the most common and distressing among them. Despite the availability of multiple guidelines about treatment to relieve pain, almost half of all cancer patients still receive inappropriate care for pain. The review also discusses the etiology of pain and provides strategies for managing the painful wound once it has been identified. The greatest need today in the treatment of chronic wounds is consensus-based knowledge vetted by practical experience and backed up by scientific evidence, which is easily communicated and available to all wound care practitioners.
CONCLUSIONS
High-quality research together with wound care practice that leads to the best outcomes might include pain reduction, exudate management, odor management, and/or other quality-of-life benefits to wound care. There is a need for specialized palliative care teams to manage expectations throughout the process while maintaining hope.
Topics: Humans; Palliative Care; Pain; Wound Healing; Hospice and Palliative Care Nursing; Pain Management
PubMed: 37859426
DOI: 10.21037/apm-23-138 -
Andes Pediatrica : Revista Chilena de... Oct 2023
Topics: Child; Humans; Palliative Care
PubMed: 37975690
DOI: 10.32641/andespediatr.v94i5.4873