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Social Science & Medicine (1982) Mar 2022Community-based palliative care (CBPC) serves seriously ill individuals by integrating care for symptom and stress relief with local health care systems. This review... (Review)
Review
Community-based palliative care (CBPC) serves seriously ill individuals by integrating care for symptom and stress relief with local health care systems. This review provides the first systematic review of the literature to date on the effectiveness of CBPC programs and includes their measures of success, challenges faced, and characteristics of the populations served. A systematic review on CBPC program effectiveness was conducted across four electronic databases for academic articles published through August 2021. PRISMA reporting guidelines were followed throughout this review, study quality was assessed using the Mixed Methods Appraisal Tool, and results were summarized in a narrative synthesis. The 61 included articles were separated into quantitative and qualitative studies, with eight having mixed methods and belonging to both groups. Overall, the quantitative articles indicate that CBPC programs increase the likelihood that seriously ill patients in their community have their place of death as home, fewer hospitalizations, fewer emergency department visits, decreased hospital length of stays, improved quality of life, and lower health care costs. There was, however, also evidence showing certain programs were unsuccessful in improving the stated outcomes. The qualitative studies reported positive findings and highlighted areas for future program improvement, like training staff and volunteers in communication and other skills. There was a lack of quantitative and qualitative studies investigating CBPC programs in low-income and lower-middle-income countries. In addition, there is a paucity of research examining CBPC program impact on vulnerable and key populations across the globe. Although findings generally support the notion that CBPC programs are a cost-effective way to improve end-of-life quality, further research is needed examining the characteristics of the more successful programs. Findings also suggest the need for collaboration between researchers, health systems, and governments to design and implement effective CBPC programs and to share best practices across communities worldwide.
Topics: Hospitalization; Humans; Palliative Care; Program Evaluation; Qualitative Research; Quality of Life
PubMed: 35131612
DOI: 10.1016/j.socscimed.2022.114731 -
The American Journal of Hospice &... Nov 2021The number of people with cancer and the need for palliative care among this population is increasing in the United States. Despite this growing need, several barriers...
The number of people with cancer and the need for palliative care among this population is increasing in the United States. Despite this growing need, several barriers exist to the utilization of palliative care in oncology. The purpose of this study was to synthesize the evidence on the barriers to palliative care utilization in an oncology population. A systematic review of literature was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. PubMed, CINAHL, and Psych Info databases were used for the literature search. Articles were included if they: 1) focused on cancer, (2) examined and discussed barriers to palliative care, and c) were peer reviewed, published in English, and had an accessible full text. A total of 29 studies (8 quantitative, 18 qualitative, and 3 mixed-methods) were identified and synthesized for this review. The sample size of the included studies ranged from 10 participants to 313 participants. The barriers to palliative care were categorized into barriers related to the patient and family, b) barriers related to providers, and c) barriers related to the healthcare system or policy. The factors identified in this review provide guidance for intervention development to mitigate the existing barriers and facilitate the use palliative care in individuals with cancer.
Topics: Hospice and Palliative Care Nursing; Humans; Medical Oncology; Neoplasms; Palliative Care
PubMed: 33412898
DOI: 10.1177/1049909120983283 -
Palliative Medicine Jan 2023In order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services.... (Review)
Review
BACKGROUND
In order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services. Out-of-hours care is an essential component of community palliative care. However, little is known about how patients, families and carers have been involved in the planning and design of these services.
AIM
To systematically search and review the research literature that reports on how out-of-hours palliative care services are provided in the community and to identify the extent to which the principles of co-design have been used to inform the planning and design of these services.
DESIGN
Systematic literature search and review.
DATA SOURCES
A systematic search for published research papers from seven databases was conducted in MEDLINE, PsycINFO, Embase, Emcare, PubMed, CINAHL and Web of Science, from January 2010 and December 2021. Reference list searches of included papers were undertaken to source additional relevant literature. A manifest content analysis was used to analyse the data.
RESULTS
A total of 77 papers were included. The majority of out-of-hours services in the community were provided by primary care services. The review found little evidence that patients, families or carers were involved in the planning or development of out-of-hours services.
CONCLUSION
Incorporating patients, families and carers priorities and preferences in the planning and designing of out-of-hours palliative care service is needed for service providers to deliver care that is more patient-centred. Adopting the principles of co-design may improve how out-of-hours care scan be delivered.
Topics: Humans; After-Hours Care; Caregivers; Hospice and Palliative Care Nursing; Palliative Care; Qualitative Research
PubMed: 36349547
DOI: 10.1177/02692163221132089 -
BMJ Supportive & Palliative Care Dec 2022Palliative and end-of-life care is a core competency for doctors and is increasingly recognised as a key clinical skill for junior doctors. There is a growing...
BACKGROUND
Palliative and end-of-life care is a core competency for doctors and is increasingly recognised as a key clinical skill for junior doctors. There is a growing international movement to embed palliative care education in medical student and junior doctor education. To date there has been no review of the literature concerning the views and experiences of junior doctors delivering this care.
AIM
To review the published literature between 2000 and 2019 concerning junior doctors' experience of palliative and end-of-life care.
METHODS
Systematic literature review and narrative synthesis.
RESULTS
A search of six databases identified 7191 titles; 34 papers met the inclusion criteria, with a further 5 identified from reference searching. Data were extracted into a review-specific extraction sheet and a narrative synthesis undertaken. Three key themes were identified: (1) 'Significance of death and dying': all papers found that junior doctors care for many patients approaching the end of life, and this often causes emotional distress and can leave persisting memories for many years afterwards; (2) 'Thrown in at the deep end': junior doctors feel unprepared and unsupported in providing palliative and end-of-life care; and (3) 'Addressing the gaps': junior doctors often experience a medical culture of disengagement towards dying patients and varying attitudes of senior doctors. Subsequently they have to learn the skills needed through seeking their own opportunities.
CONCLUSION
Medical education needs to change in order to better prepare and support junior doctors for their role in caring for dying patients. This education needs to focus on their knowledge, skills and attitudes.
Topics: Humans; Palliative Care; Qualitative Research; Terminal Care; Medical Staff, Hospital; Hospice Care
PubMed: 31722983
DOI: 10.1136/bmjspcare-2019-001954 -
Annals of Palliative Medicine Sep 2023The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal...
BACKGROUND
The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal experiences, and challenges the notion that disease precludes one from health care attention and interest. It seeks to normalise these phenomena and reorientate care to communities by activating naturally occurring networks and mobilising community resources. A surge of interventions aligned with the ethos of CC has been observed over the last decade. This scoping review seeks to synthesise what is currently known about the design, efficacy, and impact of CC interventions.
METHODS
Cochrane, PubMed, Scopus, and Web of Science were systematically searched. Hand searching was performed on three key journals, reference lists and citation lists of included articles, and relevant review articles. Two levels of analysis were conducted. First, a numerical presentation of the characteristics of CC interventions. Second, a thematically orientated narrative analysis of intervention efficacy.
RESULTS
A total of 1,882 records were screened; 62 papers were included. Most were implemented by palliative care organisations in Europe, North America, and Australia. Included studies were mapped against Clark et al.'s taxonomy of end-of-life interventions: educational (n=17); service (n=20); clinical (n=3); cultural (n=4); and multi-dimensional (n=18) interventions are discussed. While preliminary findings are positive, claims of efficacy are limited due to methodological paucity in the field.
CONCLUSIONS
We argue that the field would benefit from more transparent and theoretically driven CC interventions in order to explicate the mechanism(s) for successful intervention implementation.
Topics: Humans; Palliative Care; Australia; Europe
PubMed: 37475658
DOI: 10.21037/apm-22-867 -
Palliative Medicine Jan 2023Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest... (Review)
Review
BACKGROUND
Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences.
AIM
This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses.
DESIGN
Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7).
DATA SOURCES
Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design.
RESULTS
We identified 51 studies published between 2002 and 2021. Most studies were published in the United States ( = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews ( = 33). Three main topics were identified: Physical symptom burden ( = 26, 51%), Psychological and social needs ( = 33, 65%), and end-of-life care ( = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location.
CONCLUSION
The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.
Topics: Adolescent; Humans; Young Adult; Hospice Care; Palliative Care; Retrospective Studies; Systematic Reviews as Topic; Terminal Care; United States
PubMed: 36352490
DOI: 10.1177/02692163221136160 -
Journal of Advanced Nursing Nov 2020To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated... (Review)
Review
AIMS
To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications.
DESIGN
Systematic literature review.
DATA SOURCES
The following search engines were searched from 2008 - 2018: Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health, MEDLINE, Embase, ProQuest, Scopus, Psycinfo, and Web of Science. Extensive reference and citation checking were also conducted.
REVIEW METHODS
Systematic review followed PRISMA guidelines with prepared PROSPERO registered protocol #CRD42019129200. English language qualitative, quantitative, or mixed methods studies were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT).
RESULTS
Eighteen studies (reported in 20 articles) met the final inclusion criteria. Most focused on challenges to care provision. Thematic analysis following methods proposed by Braun and Clarke was undertaken. Five themes were identified: (a) divergence of beliefs and expectations; (b) communication; (c) navigating healthcare systems; (d) burdens and coping strategies; and (e) training and knowledge. A compassionate, collaborative approach with mutual respect crossed themes and was linked to high-quality care.
CONCLUSION
Forced migrant families have multiple needs including physical and emotional support and help in navigating complex systems. Professional interpreters can ease communication barriers when resourced appropriately. Individualized care is crucial to addressing the intricate mosaic of culture such families present. A cultural sensitivity/insensitivity framework is presented that may help guide future interactions and priorities for those working in children's palliative care.
IMPACT
This systematic review explored the international experiences of palliative care for forced migrant families. The findings highlight the plight of families who experience multiple traumas and increased levels of grief and loss through their migration experiences and when caring for a child with a life-limiting condition. This research has potential to have an impact on professionals working with culturally diverse families in all palliative care settings.
Topics: Child; Family; Hospice and Palliative Care Nursing; Humans; Palliative Care; Qualitative Research; Transients and Migrants
PubMed: 32865848
DOI: 10.1111/jan.14509 -
Palliative Medicine May 2023Exercise is often recommended for cancer patients. However, for advanced cancer palliative care patients, it is unclear whether exercise, as a lifestyle intervention, is... (Review)
Review
BACKGROUND
Exercise is often recommended for cancer patients. However, for advanced cancer palliative care patients, it is unclear whether exercise, as a lifestyle intervention, is beneficial for palliative outcomes.
AIM
To examine randomized controlled trials assessing the effectiveness of lifestyle exercise interventions on palliative outcomes in patients with advanced stage cancer.
DESIGN
Systematic review and descriptive evidence synthesis.
DATA SOURCES
Pubmed/Medline, Embase, CINAHL, PsychInfo, and Web of Science were systematically searched from inception to 2022. Two reviewers identified articles and removed duplicates. Next two reviewers independently screened titles and abstracts and then assessed full-texts articles for eligibility. Finally, all six reviewers examined full-text articles for eligibility and conducted the evidence synthesis.
RESULTS
Eight randomized controlled trials were included. Studies were heterogeneous making direct comparisons challenging, but were grouped along three categories: aerobic, resistance, or resistance-aerobic exercises. One of three aerobic studies had positive quality-of-life outcomes. Fatigue improved in one aerobic and one combination resistance-aerobic study. Most resistance-aerobic studies and one aerobic study showed improved physical function. All resistance studies showed improvement in at least one outcome. Across all studies, ill health was the most common reason for participant dropout. The most commonly used assessment tools were: Functional Assessment of Cancer Therapy: Fatigue, European Organization for Research and Treatment of Cancer Quality-of-life Questionnaire Core 30, and accelerometer.
CONCLUSION
Current randomized controlled trials regarding effects of exercise interventions on palliative outcomes for advanced cancer patients show great variability. While studies show promise, no generalizable conclusions can be made. Further research is needed.
Topics: Humans; Palliative Care; Randomized Controlled Trials as Topic; Exercise; Exercise Therapy; Fatigue; Neoplasms; Quality of Life
PubMed: 37029686
DOI: 10.1177/02692163231162888 -
Acta Oncologica (Stockholm, Sweden) Jan 2021Rehabilitation and palliative care may play an important role in addressing the problems and needs perceived by socioeconomically disadvantaged patients with advanced... (Review)
Review
BACKGROUND
Rehabilitation and palliative care may play an important role in addressing the problems and needs perceived by socioeconomically disadvantaged patients with advanced cancer. However, no study has synthesized existing research on rehabilitation and palliative care for socioeconomically disadvantaged patients with advanced cancer. The study aimed to map existing research of rehabilitation and palliative care for patients with advanced cancer who are socioeconomically disadvantaged.
MATERIAL AND METHODS
A scoping review was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). A systematic literature search was performed in CINAHL, PubMed and EMBASE. Two reviewers independently assessed abstracts and full-text articles for eligibility and performed data extraction. Both qualitative and quantitative studies published between 2010 and 2019 were included if they addressed rehabilitation or palliative care for socioeconomically disadvantaged (adults ≥18 years) patients with advanced cancer. Socioeconomic disadvantage is defined by socioeconomic position (income, educational level and occupational status).
RESULTS
In total, 11 studies were included in this scoping review (138,152 patients and 45 healthcare providers) of which 10 were quantitative studies and 1 was a qualitative study. All included studies investigated the use of and preferences for palliative care, and none focused on rehabilitation. Two studies explored health professionals' perspectives on the delivery of palliative care.
CONCLUSION
Existing research within this research field is sparse. Future research should focus more on how best to reach and support socioeconomically disadvantaged people with advanced cancer in community-based rehabilitation and palliative care.
Topics: Adult; Health Personnel; Humans; Neoplasms; Palliative Care; Qualitative Research; Vulnerable Populations
PubMed: 33021852
DOI: 10.1080/0284186X.2020.1827156 -
BMC Palliative Care Mar 2024Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of...
BACKGROUND
Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care.
METHODS
A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values.
RESULTS
We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values.
CONCLUSION
Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.
Topics: Humans; Child; Palliative Care; Quality of Life; Terminal Care; Pain; Family
PubMed: 38481215
DOI: 10.1186/s12904-024-01367-w