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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 -
BMC Palliative Care Nov 2017Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the... (Review)
Review
BACKGROUND
Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs.
METHODS
A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs.
RESULTS
Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs.
CONCLUSION
Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection.
Topics: Developing Countries; Health Services Needs and Demand; Humans; Palliative Care; Poverty
PubMed: 29178866
DOI: 10.1186/s12904-017-0242-8 -
The National Medical Journal of India 2019
Topics: Aged; Clinical Decision-Making; Humans; India; Middle Aged; Palliative Care; Public Health; Terminal Care
PubMed: 32129303
DOI: 10.4103/0970-258X.278684 -
CMAJ : Canadian Medical Association... Oct 2020
Topics: COVID-19; Decision Making, Shared; Health Care Rationing; Health Equity; Humans; Palliative Care; Pandemics; Patient Care Planning; Surge Capacity; Terminal Care; Withholding Treatment
PubMed: 33077529
DOI: 10.1503/cmaj.200465-f -
Seminars in Oncology Nursing Aug 2018To describe palliative care integration into oncology, including several models that facilitate this integration, important considerations when initiating a program,... (Review)
Review
OBJECTIVE
To describe palliative care integration into oncology, including several models that facilitate this integration, important considerations when initiating a program, special oncologic populations that would benefit from palliative care, and challenges to consider.
DATA SOURCES
Palliative care and oncology literature over the past decade.
CONCLUSION
Multiple models exist to facilitate the integration of palliative care based on the needs of the providers or payers. There are several special populations that would benefit from early integration of palliative care.
IMPLICATIONS FOR NURSING PRACTICE
Nurses play a critical role in identifying patients, providing early primary palliative care, and facilitating collaborative relationships with and referring to specialist palliative care.
Topics: Comprehensive Health Care; Hospice and Palliative Care Nursing; Humans; Neoplasms; Nurse-Patient Relations; Oncology Nursing; Palliative Care; Quality of Health Care
PubMed: 30100367
DOI: 10.1016/j.soncn.2018.06.002 -
Journal of Perinatology : Official... May 2016Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly... (Review)
Review
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families.
Topics: Clinical Decision-Making; Humans; Infant, Newborn; Infant, Newborn, Diseases; Intensive Care Units, Neonatal; Nervous System Diseases; Neurology; Palliative Care; Parents; Social Support
PubMed: 26658120
DOI: 10.1038/jp.2015.188 -
Annals of Palliative Medicine Jan 2018
Topics: Humans; Hypnosis; Pain Management; Palliative Care
PubMed: 29402093
DOI: 10.21037/apm.2018.01.02 -
Annals of Palliative Medicine Oct 2018The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome... (Review)
Review
BACKGROUND
The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children.
METHODS
This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children's Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences.
RESULTS
Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC-the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won't be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings.
CONCLUSIONS
The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.
Topics: Child; Child Health Services; Child, Hospitalized; Hospice and Palliative Care Nursing; Humans; Outcome Assessment, Health Care; Palliative Care; Uganda
PubMed: 30180720
DOI: 10.21037/apm.2018.04.02 -
Clinics in Geriatric Medicine May 2015This article describes effective communication strategies in caring for older, seriously ill patients and their surrogates/caregivers. Specific skills in three core... (Review)
Review
This article describes effective communication strategies in caring for older, seriously ill patients and their surrogates/caregivers. Specific skills in three core functions are highlighted: (i) empathic communication (ii) information provision and (iii) enabling decision making. Empathy skills include using 'NURSE' statements and assuring a continuous relationship. Tailored information and empathic communication can be used to facilitate information processing and overcome age-related communication barriers. Eliciting patients' goals of care is critical in decision making. Surrogates need assistance when making decisions for patients and often themselves have support and information needs. Suggestions are made to ensure patients' and caregivers' needs are met.
Topics: Aged; Aging; Communication Barriers; Decision Making; Disclosure; Emotional Intelligence; Humans; Interpersonal Relations; Palliative Care; Patient Care Planning
PubMed: 25920057
DOI: 10.1016/j.cger.2015.01.007 -
Healthcare Quarterly (Toronto, Ont.) Apr 2021We need to support and educate palliative care specialists and generalist providers, especially family physicians, on how to integrate an early palliative care approach...
We need to support and educate palliative care specialists and generalist providers, especially family physicians, on how to integrate an early palliative care approach into care for those with a serious illness. However, there are very few care providers compared to the number of patients and caregivers in society. To increase access to palliative care at a population level, we need a waiting room revolution, one where patients and families shift from being passive to being active in shaping their experience with serious illness. A co-design approach with patients and families can help overcome barriers to accessing palliative care and improve the overall experience.
Topics: Canada; Family; Health Services Accessibility; Humans; Palliative Care; Patient Participation; Physicians, Primary Care
PubMed: 33864434
DOI: 10.12927/hcq.2021.26472