scholarly journals Research participation in palliative medicine—benefits and barriers for patients and families: rapid review and thematic synthesis

2021 ◽  
pp. bmjspcare-2021-003093
Author(s):  
Laura Emma Chatland ◽  
Catherine Harvey ◽  
Kirsten Kelly ◽  
Sharon Paradine ◽  
Meena Bhagat ◽  
...  
Keyword(s):  
Best Practice ◽  
Clinical Decision Making ◽  
Family Members ◽  
Research Participation ◽  
Clinical Decision ◽  
Rapid Review ◽  
Research Teams ◽  
Thematic Synthesis ◽  
New Treatments ◽  
Feeling Overwhelmed

BackgroundResearch is essential for gathering evidence to inform best practice and clinical decision making, for developing and testing new treatments and services in palliative and end-of-life care (PEoLC). The participation of patients, carers and family members is essential, however, personal and ethical concerns are often cited by professionals as barriers to recruitment. There is evidence that patients and family members can benefit from participation in PEoLC research.AimTo synthesise the evidence regarding patients’, family members’ and carers’ experiences of participating in PEoLC research. To identify recommendations for enhancing the experience of participants.DesignA qualitative rapid review and thematic synthesis.Data sourcesMEDLINE, PsycINFO and PubMed were searched from 2010 to 2020. Studies reporting patients’, family members’ or carers’ experiences of participating in PEoLC research were included.Results4 studies were included and 7 themes identified relating to the benefits of, and barriers to, participation in PEoLC research. Both altruistic and personal benefits of participation were reported. Barriers (negative aspects) to participation included feeling overwhelmed, practical issues, reminders of being a patient, not seeing the research as relevant to them and unmet needs.ConclusionsA number of benefits (positive aspects) surround participation in PEoLC research. However, several barriers (negative aspects) can prevent or discourage participation. This review has identified recommendations for research teams to enhance the experience, and number of people who those participating in research in this field.

Music Therapy Pre-internship Education and Training: Support for a Methods-Based Approach

2021 ◽  
Author(s):  
Susan C Gardstrom ◽  
James Hiller ◽  
Annie Heiderscheit ◽  
Nancy L Jackson
Keyword(s):  
Music Therapy ◽  
Best Practice ◽  
Clinical Decision Making ◽  
Well Being ◽  
Clinical Decision ◽  
Education And Training ◽  
Population Based ◽  
Music Therapists ◽  
Training Support ◽  
And Training

Abstract As music therapists, music is our primary realm of understanding and action and our distinctive way of joining with a client to help them attain optimal health and well-being. As such, we have adopted and advocate for a music-focused, methods-based (M-B) approach to music therapy pre-internship education and training. In an M-B approach, students’ learning is centered on the 4 music therapy methods of composing, improvising, re-creating, and listening to music and how these music experiences can be designed and implemented to address the health needs of the diverse clientele whom they will eventually encounter as practicing clinicians. Learning is highly experiential, with students authentically participating in each of the methods and reflecting on these self-experiences as a basis for their own clinical decision-making. This is differentiated from a population based (P-B) approach, wherein students’ attention is directed at acquiring knowledge about the non-musical problems of specific “clinical populations” and the “best practice” music interventions that are presumed to address these problems. Herein, we discuss both approaches, identifying the limitations of a P-B perspective and outlining the benefits of an M-B curriculum and its relevance to 21st-century music therapy practice.

No incentives, no innovation

2009 ◽  
Vol 91 (1) ◽  
pp. 10-12
Author(s):  
Jon Hackett
Keyword(s):  
Decision Making ◽  
Best Practice ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Bottom Up ◽  
High Profile ◽  
No Innovation

While the NHS has expressed a commitment to innovation with a succession of dedicated 'arms length bodies,' there are numerous high-profile cases in which advances on the ground have not received as much support as they might. In his recent Next Stage Review report, Lord Darzi has emphasised a commitment to clinical decision-making at all levels of the NHS but whether this will involve embracing best practice from the bottom up remains to be seen. For this article I spoke to two surgeons, whose sometimes controversial innovations were admired by many, about the obstacles they faced.

scholarly journals The experiences of family members witnessing the diminishing drinking of a dying relative: An adapted meta-narrative literature review

2019 ◽  
Vol 33 (9) ◽  
pp. 1146-1157 ◽  
Author(s):  
Annie Pettifer ◽  
Katherine Froggatt ◽  
Sean Hughes
Keyword(s):  
Oral Fluid ◽  
Cancer Cachexia ◽  
Clinical Decision Making ◽  
Family Members ◽  
Clinical Decision ◽  
Future Research ◽  
Inclusion Criteria ◽  
Relevant Research ◽  
Narrative Literature ◽  
Narrative Literature Review

Background:Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients’ oral fluid intake in the last few days of life.Aim:To map the narratives in which family members’ experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research.Design:An adapted meta-narrative review approach.Data Sources:The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument.Results:A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members’ experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals.Conclusion:While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members’ experiences when witnessing the diminishing drinking of a dying relative.

scholarly journals Novel Neurotechnological Interventions for Pediatric Drug-Resistant Epilepsy: Physician Perspectives

2020 ◽  
pp. 088307382096693
Author(s):  
Patrick J. McDonald ◽  
Viorica Hrincu ◽  
Mary B. Connolly ◽  
Mark J. Harrison ◽  
George M. Ibrahim ◽  
...  
Keyword(s):  
Decision Making ◽  
Best Practice ◽  
Clinical Decision Making ◽  
Qualitative Content Analysis ◽  
Scientific Evidence ◽  
Clinical Decision ◽  
Drug Resistant ◽  
Ethical Considerations ◽  
Pediatric Drug ◽  
Drug Resistant Epilepsy

This qualitative study investigated factors that guide physicians’ choices for minimally invasive and neuromodulatory interventions as alternatives to conventional surgery or medical management for pediatric drug-resistant epilepsy. North American physicians were recruited to one of 4 focus groups at national conferences. Discussions were analyzed using qualitative content analysis. A pragmatic neuroethics framework was applied to interpret results. Discussions revealed 2 major thematic branches: (1) clinical decision making and (2) ethical considerations. Under clinical decision making, physicians emphasized scientific evidence and patient candidacy when assessing neurotechnologies for patients. Ongoing seizures without intervention was important for safety and neurodevelopment. Under ethical considerations, resource allocation, among other financial considerations for technology adoption, were considerable sources of pressure on decision making. Access to neurotechnology was a salient theme differentiating Canadian and American contexts. When assessing novel neurotechnological interventions for pediatric drug-resistant epilepsy, physicians balance clinical and ethical factors to guide decision making and best practice.

scholarly journals Consensus for a primary care clinical decision-making tool for assessing, diagnosing, and managing shoulder pain in Alberta, Canada

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Breda H. F. Eubank ◽  
Sebastian W. Lackey ◽  
Mel Slomp ◽  
Jason R. Werle ◽  
Colleen Kuntze ◽  
...  
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Shoulder Pain ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Primary Care Providers ◽  
Rapid Review ◽  
Diagnosis And Management ◽  
Joint Health ◽  
Decision Making Tool

Abstract Background Shoulder pain is a highly prevalent condition and a significant cause of morbidity and functional disability. Current data suggests that many patients presenting with shoulder pain at the primary care level are not receiving high quality care. Primary care decision-making is complex and has the potential to influence the quality of care provided and patient outcomes. The aim of this study was to develop a clinical decision-making tool that standardizes care and minimizes uncertainty in assessment, diagnosis, and management. Methods First a rapid review was conducted to identify existing tools and evidence that could support a comprehensive clinical decision-making tool for shoulder pain. Secondly, provincial consensus was established for the assessment, diagnosis, and management of patients presenting to primary care with shoulder pain in Alberta, Canada using a three-step modified Delphi approach. This project was a highly collaborative effort between Alberta Health Services’ Bone and Joint Health Strategic Clinical Network (BJH SCN) and the Alberta Bone and Joint Health Institute (ABJHI). Results A clinical decision-making tool for shoulder pain was developed and reached consensus by a province-wide expert panel representing various health disciplines and geographical regions. This tool consists of a clinical examination algorithm for assessing, diagnosis, and managing shoulder pain; recommendations for history-taking and identification of red flags or additional concerns; recommendations for physical examination and neurological screening; recommendations for the differential diagnosis; and care pathways for managing patients presenting with rotator cuff disease, biceps pathology, superior labral tear, adhesive capsulitis, osteoarthritis, and instability. Conclusions This clinical decision-making tool will help to standardize care, provide guidance on the diagnosis and management of shoulder pain, and assist in clinical decision-making for primary care providers in both public and private sectors.

scholarly journals Best practice guidelines for management of spinal disorders in skeletal dysplasia

2020 ◽  
Author(s):  
Klane White ◽  
Michael B Bober ◽  
Tae-Joon Cho ◽  
Michael J Goldberg ◽  
Julie Hoover-Fong ◽  
...  
Keyword(s):  
Decision Making ◽  
Practice Guidelines ◽  
Skeletal Dysplasia ◽  
Best Practice ◽  
Clinical Decision Making ◽  
Case Series ◽  
Clinical Decision ◽  
Spinal Disorders ◽  
Best Practice Guidelines ◽  
Group A

Abstract Background: Disorders of the spine present a common and difficult management concern in patients with skeletal dysplasia. Due to the rarity of these conditions however, the literature, largely consisting of small, single institution case series, is sparse in regard to well-designed studies to support clinical decision making in these situations. Methods: Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, “best practice” guidelines in the care of spinal disorders in patients with skeletal dysplasia. Results: Starting with 33 statements, the group a developed a list of 31 “best practice” guidelines. Conclusions: The guidelines are presented and discussed to provide context for clinicians in their decision making in this often-challenging realm of care.

Graphical representations of patient tolerability data: Recommendations from the National Cancer Institute (NCI) Cancer Moonshot Standardization Working Group.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18612-e18612
Author(s):  
Gillian Gresham ◽  
Gina L. Mazza ◽  
Blake Langlais ◽  
Bellinda King-Kallimanis ◽  
Lauren J. Rogak ◽  
...  
Keyword(s):  
Working Group ◽  
Best Practice ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Section 508 ◽  
Graphical Displays ◽  
Patient Reported ◽  
Tolerability Data ◽  
Survey Results ◽  
Data Incorporate

e18612 Background: Effective communication of treatment tolerability data is essential for clinical decision making and improved patient outcomes, yet standardized approaches to the analysis and visualization of tolerability data in cancer clinical trials are currently limited. To address this need, the Standardization Working Group (SWG) was established within the NCI Cancer Moonshot Tolerability Consortium. This abstract describes the SWG’s initiative to develop a publicly accessible online toolkit with a comprehensive set of guidelines, references, and resources for graphical displays of tolerability data. Methods: A multidisciplinary group of PRO researchers including biostatisticians, clinicians, epidemiologists, and representatives from the NCI and FDA convened monthly to discuss toolkit development and content. Considerations for standardization of graphical displays of tolerability data included (1) types of graphical displays, (2) incorporation of missing data, (3) labeling and color schemes, and (4) software to produce graphical displays. For consistency, considerations of tolerability relied on the Patient-Reported Outcomes version of the CTCAE (PRO-CTCAE), which includes 124 items assessing the frequency, severity, interference, and/or presence of 78 symptomatic adverse events. Graphical displays were generated using simulated PRO-CTCAE data and summarized by composite score (range 0-3).Color schemes that were Section 508 compliant and color blindness accessible were created. Surveys were distributed to 68 consortium members to assess preferences and interpretability of the graphical displays. Results: The SWG created graphical displays for PRO-CTCAE data, including bar charts, butterfly plots, and Sankey diagrams and compiled SAS macros and R functions to do so. Graphical displays made available in the toolkit maximize the use of PRO-CTCAE data, incorporate missingness, support between-arm comparisons, and present data longitudinally over treatment cycles or study timepoints. Survey results for labeling and color schemes were summarized and informed a list of short labels for PRO-CTCAE items (e.g., “radiation burns” for “skin burns from radiation”) and standardized color schemes for use in graphical displays. Survey results were also summarized to provide insight into PRO researchers’ ability to accurately interpret the graphical displays. Conclusions: Standardizinggraphical displays is important for improving the communication and interpretation of tolerability data. The type of graphical display used depends on the purpose of the analysis and should be tailored to the intended audience, including patients. This toolkit will provide a comprehensive resource with best practice recommendations.

Abstract T P281: Facilitating Best Practices in Rehabilitation for Persons With Stroke: Use of a Triage Tool in Toronto

Stroke ◽  
2014 ◽  
Vol 45 (suppl_1) ◽  
Author(s):  
Shelley Sharp ◽  
Jacqueline Willems ◽  
Elizabeth Linkewich ◽  
Nicola Tahair ◽  
Charissa Levy ◽  
...  
Keyword(s):  
Special Needs ◽  
Best Practice ◽  
Clinical Decision Making ◽  
Inpatient Rehabilitation ◽  
Clinical Decision ◽  
Admission Criteria ◽  
Stroke Severity ◽  
Rehabilitation Care ◽  
Referral Management ◽  
Practice Methods

Background: Best practice indicates all stroke patients (including severely affected) benefit from timely and intensive rehabilitation care. Currently in Toronto 27% of patients with stroke are discharged to inpatient rehabilitation from acute care (Canadian Institute for Health Information (CIHI) 11/12). Sixty percent of admissions to rehabilitation were patients with moderate stroke, 17% mild and 22% severe CIHI (FY12-13 Q1-3). Access to rehabilitation in Toronto is not equitable as admission criteria and rehabilitation programming are not standardized for stroke. Purpose: Develop a triage tool to support clinical decision making, equitable access to care and early referral to appropriate rehabilitation based on best practice Methods Acute and rehabilitation leaders collaboratively developed the triage tool. Provincial expert panel recommendations and existing referral frameworks were considered. The AlphaFIM® tool was used as the basis for categorizing stroke severity. Agreement was reached to support automatic acceptance of patients referred to rehab with AlphaFIM® score of 60-80. The tool was implemented Feb 1, 2013. All rehabilitation organizations agreed to standardized admission criteria and are working toward best practice for stroke inpatient rehabilitation care. Results: Baseline data (January to August 2012) for patients referred with an early AlphaFIM® of 60-80 indicated only 66% were accepted to rehab, 15% were declined and 8.5% had a decision pending. For those declined, 10% were identified as having special needs that could not be met, 29% were considered more appropriate for slow stream rehab, and 14% because of limited sitting tolerance and balance. An analysis of data following implementation will be presented. Conclusion: The triage tool creates a standard of best practice for the system. Agreement on common admission criteria and standard of practice for rehabilitation referral management for patients with AlphaFIM® 60-80 have been established between referrers and rehab providers. It is expected that transition barriers for this group should be minimal unless special needs are identified.

Psychiatric disorders in C9orf72 kindreds

Neurology ◽  
2018 ◽  
Vol 91 (16) ◽  
pp. e1498-e1507 ◽  
Author(s):  
Emma M. Devenney ◽  
Rebekah M. Ahmed ◽  
Glenda Halliday ◽  
Olivier Piguet ◽  
Matthew C. Kiernan ◽  
...  
Keyword(s):  
Psychiatric Disorders ◽  
Clinical Decision Making ◽  
Late Onset ◽  
Family Members ◽  
Positive Association ◽  
Clinical Decision ◽  
Autism Spectrum ◽  
Psychiatric Disease ◽  
Relative Risk Ratio ◽  
Lateral Sclerosis

ObjectiveThe aim of this study was to determine in a systematic manner if the C9orf72 phenotype might extend beyond frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS) to include psychiatric disease.MethodsA validated semistructured family history interview was conducted in a large cohort of patients with FTD and ALS (n = 89), with and without the C9orf72 expansion (n = 29 and n = 60, respectively), encompassing 1,414 first- and second-degree relatives. Statistical analyses used both the hazard ratio (HR) and the relative risk ratio to determine the risk profiles within families.ResultsA significant HR of 4.9 (95% confidence interval [CI]: 1.9–13.9, p = 0.003) confirmed a higher probability of developing schizophrenia for relatives of C9orf72 carriers compared with noncarriers. In addition, 8 relatives of C9orf72 carriers experienced an episode of late-onset psychosis unrelated to schizophrenia, in comparison to one noncarrier (HR = 17.9, 95% CI: 2.2–143.2, p = 0.007). The probability of suicide was also significantly higher for family members of C9orf72 carriers (HR = 2.7, 95% CI: 1.2–6.2, p = 0.02). An HR of 2.7 (95% CI: 1.1–6.9, p = 0.03) indicated a higher probability of autism spectrum disorder (ASD) in family members of C9orf72 carriers, and this risk extended to FTD. Furthermore, there was a positive association between psychosis in probands and mental health disorders, including ASD in their family members (p = 0.04).ConclusionOverall, the results from this study suggest that a psychiatric phenotype exists within C9orf72 kindreds. Further studies should attempt to delineate the risk of psychiatric disorders in C9orf72 kindreds to aid in clinical decision making, particularly regarding genetic counseling, through collaborations between neurology and psychiatry.

The Indaba in African Values-Based Practice

2015 ◽  
Author(s):  
C.W. van Staden ◽  
K. W. M. Fulford
Keyword(s):  
Decision Making ◽  
Potential Role ◽  
Clinical Decision Making ◽  
Family Members ◽  
Clinical Decision ◽  
Her Family ◽  
African Context ◽  
Key Features ◽  
Communicative Processes

This chapter shows how a particular kind of meeting, called in isiZulu the indaba, contributes toBatho Pele, an African values-based practice. First, it explores the challenge of values diversity, including what it means to respect diversity of values, and the different responses to the challenge from regulatory ethics and from values-based practice. It then explores the challenge of diversity in an African context through the story of a real (though biographically disguised) person, Ms. Precious Pelo, her family members and clinicians. Ms. Pelo’s story shows the need for substantive (process-focused) rather than merely executive (outcomes-focused) communicative processes in responding to the challenge of values diversity in clinical decision-making. Finally, it describes part of an indaba convened for Ms. Pelo, its opening minutes illustrating many of the key features ofBatho Pele. We conclude with an indication of the potential role of indabas in other areas of values-based practice.

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