Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention.
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ABSTRACT:
SUBMITTER: Frey R
PROVIDER: S-EPMC7433142 | biostudies-literature | 2020 Aug
REPOSITORIES: biostudies-literature
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Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention.
Frey Rosemary R Barham Sophia S Balmer Deborah D Boyd Michal M Robinson Jackie J Gott Merryn M
BMC palliative care 20200817 1
<h4>Background</h4>The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' knowledge and skill to care for frail older people.<h4>Method</h4>The experiences of 18 bereaved families concerning the palliative care journey (both at the start and fini ...[more]
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Project description:BackgroundThe provision of residential aged care is underpinned by information, and is reliant upon systems that adequately capture and effectively utilise and communicate this information. The aim of this study was to explicate and quantify the volume and method by which information is collected, exchanged within facilities and with external providers, and retrieved from facility information systems and hospitals.MethodsA survey of staff (n?=?119), including managers, health informatics officers (HIOs), quality improvement staff, registered nurses (RNs), enrolled nurses (ENs)/endorsed enrolled nurses (EENs) and assistants in nursing (AINs) was carried out in four residential aged care facilities in New South Wales and Victoria, Australia. Sites varied in size and displayed a range of information technology (IT) capabilities. The survey investigated how and by whom information is collected, retrieved and exchanged, and the frequency and amount of time devoted to these tasks. Descriptive analysis was performed using SPSS, and open responses to questions were coded into key themes.ResultsStaff completed a median of six forms each, taking a median of 30 min per shift. 68.8% of staff reported transferring information from paper to a computer system, which took a median of 30 min per shift. Handover and face-to-face communication was the most frequently used form of information exchange within facilities. There was a large amount of faxing and telephone communication between facility staff and General Practitioners and community pharmacists, with staff reporting sending a median of 2 faxes to pharmacy and 1.5 faxes to General Practitioners, and initiating 2 telephone calls to pharmacies and 1.5 calls to General Practitioners per shift. Only 38.5% of respondents reported that they always had information available at the point-of-care and only 35.4% of respondents reported that they always had access to hospital stay information of residents after hospital discharge.ConclusionsThis survey identified a high volume of information exchange activities, as well as inefficient procedures, such as the transfer of information from paper to computer systems and the reliance upon faxes for communication with external providers. These findings contribute to evidence for the need for interoperable IT systems to allow more efficient and reliable information exchange between facilities and external providers.
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Project description:OBJECTIVE:The objective of this update, presented at the 2018 Annual Assembly of the American Association of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of recent research that has the potential for marked impact on hospice and palliative clinical practice. METHODS:In a departure from previous years, we surveyed AAHPM and HPNA members to determine focused topic areas, from which we selected candidate articles. The two topic areas selected by the membership were "Moving into the great beyond: bringing palliative care into the subspecialties" and "Improving the conversation for patients with serious illness." Seven reports of original research published between January 1, 2012 and November 3, 2017 were identified through a systematic search of relevant databases, hand searching of leading journals, and discussion with experts in the field. Candidate articles were scored and ranked independently by four reviewers based on methodological quality, appeal to a breadth of palliative care clinicians across settings, and potential for impact. RESULTS:We summarize the seven articles with the highest ratings.
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Project description:This article provides a general introduction to implementation science-the discipline that studies the implementation process of research evidence-in the context of hospice and palliative care. By discussing how implementation science principles and frameworks can inform the design and implementation of intervention research, we aim to highlight how this approach can maximize the likelihood for translation and long-term adoption in clinical practice settings. We present 2 ongoing clinical trials in hospice that incorporate considerations for translation in their design and implementation as case studies for the implications of implementation science. This domain helps us better understand why established programs may lose their effectiveness over time or when transferred to other settings, why well-tested programs may exhibit unintended effects when introduced in new settings, or how an intervention can maximize cost-effectiveness with strategies for effective adoption. All these challenges are of significance to hospice and palliative care, where we seek to provide effective and efficient tools to improve care services. The emergence of this discipline calls for researchers and practitioners to carefully examine how to refine current and design new and innovative strategies to improve quality of care.
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Project description:BACKGROUND:Providing quality palliative care in residential aged care facilities (RACFs) (aged care homes) is a high priority for ageing populations worldwide. Older people admitted to these facilities have palliative care needs. Nursing assistants (however termed) are the least qualified staff and provide most of the direct care. They have an important role at the frontline of care spending more time with residents than any other care provider but have been found to lack the necessary knowledge and skills to provide palliative care. The level of competence of this workforce to provide palliative care requires evaluation using a valid and reliable instrument designed for nursing assistants' level of education and the responsibilities and practices of their role. METHOD:The overall study purpose was to develop and test an instrument capable of evaluating the knowledge, skills and attitudes of nursing assistants within a palliative approach in RACFs. Development consisted of a four-phase mixed-methods sequential design. In this paper, the results and key findings following psychometric testing of the instrument in Phase 4 is reported using data collected from a random sample of 17 RACFs and 348 nursing assistants in the Greater Sydney region. Study hypotheses were tested to confirm discriminative validity and establish the utility of the instrument in both research and training assessment. RESULTS:Individual item properties were analysed for difficulty, discrimination and item-total correlations. Discriminative and structural validity, and internal consistency and test-retest reliability were demonstrated. Three separate questionnaires comprising 40 items were finalised: The Palliative Approach for Nursing Assistants (PANA)_Knowledge Questionnaire (17 items), the PANA_Skills Questionnaire (13 items) and the PANA_Attitudes Questionnaire (10 items). CONCLUSIONS:This study provides preliminary evidence for the validity and reliability of three new questionnaires that demonstrate sensitivity for nursing assistants' level of education and required knowledge, skills and attitudes for providing a palliative approach. Implications for practice include the development of palliative care competencies through structured education and training across this workforce, and ongoing professional development opportunities for nursing assistants, especially for those with the longest tenure.
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Project description:This analysis estimates the whole-of-system direct costs for people living with dementia in residential care by using a broad health and social care provision perspective and compares it to people without dementia living in residential care.Data were collected from 541 individuals living permanently in 17 care facilities across Australia. The annual cost of health and residential care was determined by using individual resource use data and reported by the dementia status of the individuals.The average annual whole-of-system cost for people living with dementia in residential care was approximately AU$88 000 (US$ 67 100) per person in 2016. The cost of residential care constituted 93% of the total costs. The direct health care costs were comprised mainly of hospital admissions (48%), pharmaceuticals (31%) and out-of-hospital attendances (15%). While total costs were not significantly different between those with and without dementia, the cost of residential care was significantly higher and the cost of health care was significantly lower for people living with dementia.This study provides the first estimate of the whole-of-system costs of providing health and residential care for people living with dementia in residential aged care in Australia using individual level health and social care data. This predominantly bottom-up cost estimate indicates the high cost associated with caring for people with dementia living permanently in residential care, which is underestimated when limited cost perspectives or top-down, population costing approaches are taken.
| S-EPMC6032872 | biostudies-other
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Project description:BackgroundIntegration of specialist palliative care into routine oncologic care improves patients' quality of life and survival. National Comprehensive Cancer Network (NCCN) cancer treatment guidelines are instrumental in standardizing cancer care, yet it is unclear how palliative and hospice care are integrated in these guidelines. In this study, we examined the frequency of occurrence of "palliative care" and "hospice care" in NCCN guidelines and compared between solid tumor and hematologic malignancy guidelines.Materials and methodsWe reviewed all 53 updated NCCN Guidelines for Treatment of Cancer. We documented the frequency of occurrence of "palliative care" and "hospice care," the definitions for these terms if available, and the recommended timing for these services.ResultsWe identified a total of 37 solid tumor and 16 hematologic malignancy guidelines. Palliative care was mentioned in 30 (57%) guidelines (24 solid tumor, 6 hematologic). Palliative care was mentioned more frequently in solid tumor than hematologic guidelines (median, 2 vs. 0; p = .04). Among the guidelines that included palliative care in the treatment recommendation, 25 (83%) only referred to NCCN palliative care guideline. Specialist palliative care referral was specifically mentioned in 5 of 30 (17%) guidelines. Only 14 of 24 (58%) solid tumor guidelines and 2 of 6 (33%) hematologic guidelines recommended palliative care in the front line setting for advanced malignancy. Few guidelines (n = 3/53, 6%) mentioned hospice care.Conclusion"Palliative care" was absent in almost half of NCCN cancer treatment guidelines and was rarely discussed in guidelines for hematologic malignancies. Our findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.Implications for practiceIntegration of specialist palliative care into routine oncologic care is associated with improved patient outcomes. National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology have an important role to standardize palliative care involvement for cancer patients. It is unclear how often palliative care referral is recommended in these guidelines. In this study involving 53 NCCN Guidelines for Treatment of Cancer, the researchers found that palliative care was not mentioned in over 40% of NCCN guidelines and was rarely discussed in guidelines for hematologic malignancies. These findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
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Project description:OBJECTIVES:To examine associations between healthcare transitions at the end of life (EOL; late transitions) and bereaved family members' and friends' assessment of EOL quality of care (QOC). DESIGN:National Health and Aging Trends Study (NHATS), a prospective cohort of Medicare enrollees aged 65 and older. SETTING:United States, all sites of death. PARTICIPANTS:Family members and close friends of decedents from NHATS Rounds 2 through 6 (N=1,653; weighted 6.0 million Medicare deaths). MEASUREMENTS:Multivariable logistic regression with survey weights was used to examine the association between having a late transition and reports of perceived unmet needs for symptom management, spiritual support, concerns with communication, and overall QOC. RESULTS:Seventeen percent of decedents had a late transition. Bereaved respondents for decedents experiencing late transitions were more likely to report that the decedent was treated without respect (21.3% vs 15.6%; adjusted odds ratio (AOR)=1.59, 95% confidence interval (CI)=1.09-2.33), had more unmet needs for spiritual support (67.4% v 55.2%; AOR=1.48, 95% CI=1.03-2.13), and were more likely to report they were not kept informed about the person's condition (31.0% vs 20.9%; AOR=1.54, 95% CI=1.07-2.23). Bereaved respondents were less likely to rate QOC as excellent when there was a late transition (43.6% vs 48.2%; AOR=0.79, 95% CI=0.58-1.06). Subgroup analyses of those experiencing a transition between a nursing home and hospital (13% of all late transitions) revealed such transitions to be associated with even worse QOC. CONCLUSION:Transitions in the last 3 days of life are associated with more unmet needs, higher rate of concerns, and lower rating of QOC than when such late transitions are absent, especially when that transition is between a nursing home and hospital.
| S-EPMC6156998 | biostudies-literature
Project description:BackgroundWhile several small groups in Japan have attempted to conduct prospective studies in the field of supportive and palliative care, development of exploratory research into multicentre confirmatory studies has been difficult. The main reason for this is the difference in clinical research methodology in supportive and palliative care compared with medical oncology in terms of the style of multidisciplinary approaches, study design and endpoints. Here, we establish a new research policy for cancer supportive and palliative care in Japan.MethodsThe first draft was developed by a policy working group within the Japanese Supportive, Palliative and Psychosocial Care Study Group. A provisional draft was subsequently developed after review by nine Japanese scientific societies (Japanese Association of Supportive Care in Cancer, Japanese Society of Medical Oncology, Japanese Society of Clinical Oncology, Japanese Society of Palliative Medicine, Japanese Society of Cancer Nursing, Japanese Society of Pharmaceutical Oncology (JASPO), Japan Cancer Association (JCA), Japanese Society of Therapeutic Radiation Oncology and Japanese Cancer Association) and receipt of public comments. The final research policy in the area of supportive and palliative care in Japan (Ver1.0) was completed in December 2018 and underwent its first revision (Ver1.1) in February, 2020.ResultsThe policy includes the following components of clinical research: (i) objective of the research policy in the areas of supportive and palliative care; (ii) definitions of supportive care and palliative care; (iii) characteristics of supportive and palliative care research; (iv) target population for research; (v) research design; (vi) endpoints and assessment measures; (vii) handling of the deaths of subjects and (viii) operational structure and quality management.ConclusionsWe hope that studies conducted according to this policy will play important roles in the future development of the supportive and palliative field.
| S-EPMC8129624 | biostudies-literature