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Journal of Palliative Medicine Dec 2023The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with...
The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Topics: Child; Humans; Palliative Care; Quality of Life; Community Health Services; Hospice Care; Pain
PubMed: 37972058
DOI: 10.1089/jpm.2023.0147 -
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 -
Journal of Palliative Medicine Jan 2024Neuroinflammatory diseases are progressive leading to loss of function and disability. Although palliative care (PC) utilization has increased globally, it has scarcely...
Neuroinflammatory diseases are progressive leading to loss of function and disability. Although palliative care (PC) utilization has increased globally, it has scarcely increased in neurology. To explore PC attitudes and knowledge among patients with neuroinflammatory diseases, such as multiple sclerosis, neuromyelitis optica spectrum disorder, and myelin oligodendrocyte glycoprotein antibody-associated disease. A cross-sectional 1-year study was conducted using the Palliative Care Knowledge Scale (PaCKS) and the PC Health Information National Trends Survey (HINTS). Murray's transition theory guided this study, which integrates palliative services including decision making, communication, and coordinated care. The majority of study patients were female (69%) ( = 86) and White (79%). Forty-two percent indicated that they had never heard about PC, 46% said that they knew a little bit about PC, and 12% said that they knew a lot about PC. Fifty percent of patients knew the goals of PC and had knowledge about PC services. Forty-four percent to 60% agreed that PC goals include helping friends and family to cope with a patient's illness, offering social and emotional support, and managing pain and other symptoms. Patients who self-reported being familiar with PC performed significantly better on the PaCKS than those unfamiliar with PC ( < 0.001), and those who self-reported moderate or severe memory loss performed significantly worse on the PaCKS than those with mild memory loss ( = 0.027). There was an association between higher education and PC knowledge and between patients' PaCKS scores and their self-reported HINTS PC knowledge. Patients have partial PC knowledge. Patients require education about PC early in their disease along their illness trajectory.
Topics: Humans; Male; Female; Palliative Care; Cross-Sectional Studies; Neuroinflammatory Diseases; Hospice and Palliative Care Nursing; Surveys and Questionnaires; Health Knowledge, Attitudes, Practice; Memory Disorders
PubMed: 37610856
DOI: 10.1089/jpm.2023.0224 -
Journal of Social Work in End-of-life &... 2024
Topics: Humans; Terminal Care; Palliative Care; Social Work
PubMed: 38838266
DOI: 10.1080/15524256.2024.2362049 -
The American Journal of Hospice &... Aug 2023To describe the use of tele-palliative care in patients with advanced disease and assess its effectiveness on quality of life (QOL), symptom burden and other outcomes...
To describe the use of tele-palliative care in patients with advanced disease and assess its effectiveness on quality of life (QOL), symptom burden and other outcomes for patients and their caregivers. We searched for randomised controlled trials to assess the outcomes of tele-palliative care on patients with advanced disease and their caregivers. Eight databases were searched for studies published in Chinese or English from inception to November 27, 2021. Data from the included trials were extracted independently by 2 reviewers and evaluated independently for methodological quality using the Cochrane Collaboration's tool. A narrative synthesis of the results of all trials was performed. Thirty trials were included ultimately with more than one half of the studies were moderate to high quality, including, which involved 19 665 patients and 1153 caregivers. Results from 10/15 included trials (reporting patient QOL), 5/14 trials (reporting patient symptoms), 1/3 trials (reporting survival), 8/13 trials (reporting patient mood), 3/6 trials (reporting ACP related indicators), 3/7 trials (reporting resource utilization) showed statistically significant between tele-palliative care and control care groups. Of 30 trials, 8 measured caregiver outcomes, 1/4 trials (reporting caregiver QOL) showed statistically significant, and results from 3/3 trials (reporting caregiver mood), 3/4 trials (reporting caregiver burden) showed benefit in at least 1 domain at 1 or more time points. This systematic review suggests that although tele-palliative care can improve patient physical, patient and caregiver psychological health outcomes to some extent, there is still a lack of sufficient evidence to substantiate its application effects. Moreever, regional and cultural characteristics should also be taken into account when tele-palliative care interventions are carried out.
Topics: Humans; Caregivers; Palliative Care; Quality of Life; Hospice and Palliative Care Nursing
PubMed: 36113129
DOI: 10.1177/10499091221123566 -
Nephrology Nursing Journal : Journal of... 2023Palliative care is an effective way to alleviate suffering and improve quality of life in older adults with end stage kidney disease (ESKD). The purpose of this scoping... (Review)
Review
Palliative care is an effective way to alleviate suffering and improve quality of life in older adults with end stage kidney disease (ESKD). The purpose of this scoping review was to identify gaps in available evidence about current and future needs for palliative care in community-residing older adults living in Thailand with advanced chronic kidney disease. Four essential elements (community, education, research, and nursing practice) were found related to older adults with ESKD, their families, and limited graduate palliative care education. Results support the need for graduate nursing education to meet the needs of a growing ESKD population in Thailand and other countries, including the United States.
Topics: Humans; United States; Aged; Palliative Care; Quality of Life; Southeast Asian People; Thailand; Renal Insufficiency, Chronic; Kidney Failure, Chronic
PubMed: 37983552
DOI: No ID Found -
Practical Radiation Oncology 2024
Topics: Humans; Palliative Care; Patient Comfort
PubMed: 38702116
DOI: 10.1016/j.prro.2023.09.010 -
BMC Palliative Care May 2024The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a... (Review)
Review
BACKGROUND
The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC.
METHODS
Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database.
KEYWORDS
Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators.
RESULTS
Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities.
CONCLUSION
Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.
Topics: Humans; Community Participation; Palliative Care; Terminal Care; Community Networks
PubMed: 38711035
DOI: 10.1186/s12904-024-01424-4 -
JCO Global Oncology Aug 2023Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding...
PURPOSE
Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.
METHODS
The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS
A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).
CONCLUSION
Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.
Topics: Humans; Child; Palliative Care; Quality of Life; Brazil; Neoplasms; Physicians
PubMed: 37535886
DOI: 10.1200/GO.23.00057