Improving end of life care in care homes; an evaluation of the six steps to success programme

BACKGROUND: There are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives. One educational initiative is The Six Steps to Success programme. METHOD: In order to evaluate the implementation of Six Steps with the first cohort of care homes to complete the end-of-life programme in the North West of England., a pragmatic evaluation methodology was implemented in 2012–2013 using multiple methods of qualitative data collection; online questionnaire with facilitators (n = 16), interviews with facilitators (n = 9) and case studies of care homes that had completed the programme (n = 6). The evaluation explored the implementation approach and experiences of the programme facilitators and obtain a detailed account of the impact of Six Steps on individual care homes. Based upon the National Health Service (NHS) End of Life Care (EoLC) Programme, The Route to Success in EoLC – Achieving Quality in Care Homes. RESULTS: The programme was flexibly designed so that it could be individually tailored to the geographical location and the individual cohort requirements. Facilitators provided comprehensive and flexible support to care homes. Challenges to programme success were noted as; lack of time allocated to champions to devote to additional programme work, inappropriate staff selected as ‘Champions’ and staff sickness/high staff turnover presented challenges to embedding programme values. Benefits to completing the programme were noted as; improvement in Advance Care Planning, improved staff communication/confidence when dealing with multi-disciplinary teams, improved end-of-life processes/documentation and increased staff confidence through acquisition of new knowledge and new processes. CONCLUSIONS: The findings suggested an overall positive impact from the programme. This flexibly designed programme continues to be dynamic, iteratively amended and improved which may affect the direct transferability of the results to future cohorts. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12904-016-0123-6) contains supplementary material, which is available to authorized users

Paramedics and their role in end-of-life care: perceptions and confidence

Background: Studies have highlighted paramedics are inadequately prepared to care for patients who are at the end of their life, due to the historical focus of their training on acute medical management. This appears to cause conflict with paramedic perceptions of their role. Objective: To gain an understanding of paramedics' perceptions, confidence and concerns towards dealing with end of life care patients and their families. Design: An online survey comprising open and closed questions was distributed to all paramedics in a regional ambulance service in the north of England. Demographic data included: National Health Service (NHS) grade, personal experience, education and training to contextualise the data. A total population sample across differing organisational roles was used for paramedics in a regional ambulance service in the north of England. Responses were obtained from 182 staff. Results: NHS grade and length of service as a paramedic influenced the participant's confidence and concerns when dealing with end of life patients. A large number of participants (n=126, 70%) identified validity of documentation as a concern with 83 (46%) highlighting fear of litigation and 90 (50%) identifying that conflict with families was a concern. Support from other services was viewed as a contributing factor to increased paramedic involvement in end of life care. Conclusion: Most paramedics viewed end of life care as central to their role, but there was a need for further specific education to help enable paramedics to feel more confident, competent and supported in ensuring patients receive optimal care. </jats:sec

Towards a consensus-based classification of childhood arterial ischemic stroke.

Background and purposeThe implementation of uniform nomenclature and classification in adult arterial ischemic stroke (AIS) has been critical for defining outcomes and recurrence risks according to etiology and in developing risk-stratified treatments. In contrast, current classification and nomenclature in childhood AIS are often overlapping or contradictory. Our purpose was to develop a comprehensive consensus-based classification system for childhood AIS.MethodsUsing a modified-Delphi method, members of the International Pediatric Stroke Study (IPSS) developed the Childhood AIS Standardized Classification And Diagnostic Evaluation (CASCADE) criteria. Two groups of pediatric stroke specialists from the IPSS classified 7 test cases using 2 methods each: (1) classification typical of the individual clinician's current clinical practice; and (2) classification based on the CASCADE criteria. Group 1 underwent in-person training in the utilization of the CASCADE criteria. Group 2 classified the same cases via an online survey, including definitions but without training. Inter-rater reliability (IRR) was assessed via multi-rater unweighted κ-statistic.ResultsIn Group 1 (with training), IRR was improved using CASCADE criteria (κ=0.78, 95% CI=[0.49, 0.94]), compared with typical clinical practice (κ=0.40, 95% CI=[0.11, 0.60]). In Group 2 (without training), IRR was lower than among trained raters (κ=0.61, 95% CI=[0.29, 0.77]), but higher than current practice (κ=0.23, 95% CI=[0.03, 0.36]).ConclusionsA new, consensus-based classification system for childhood AIS, the CASCADE criteria, can be used to classify cases with good IRR. These preliminary findings suggest that the CASCADE criteria may be particularity useful in the setting of prospective multicenter studies in childhood-onset AIS, where standardized training of investigators is feasible

Inter-Rater Reliability of the CASCADE Criteria: Challenges in Classifying Arteriopathies.

Background and purposeThere are limited data about the reliability of subtype classification in childhood arterial ischemic stroke, an issue that prompted the IPSS (International Pediatric Stroke Study) to develop the CASCADE criteria (Childhood AIS Standardized Classification and Diagnostic Evaluation). Our purpose was to determine the CASCADE criteria's reliability in a population of children with stroke.MethodsEight raters from the IPSS reviewed neuroimaging and clinical records of 64 cases (16 cases each) randomly selected from a prospectively collected cohort of 113 children with arterial ischemic stroke and classified them using the CASCADE criteria. Clinical data abstracted included history of present illness, risk factors, and acute imaging. Agreement among raters was measured by unweighted κ statistic.ResultsThe CASCADE criteria demonstrated a moderate inter-rater reliability, with an overall κ statistic of 0.53 (95% confidence interval [CI]=0.39-0.67). Cardioembolic and bilateral cerebral arteriopathy subtypes had much higher agreement (κ=0.84; 95% CI=0.70-0.99; and κ=0.90; 95% CI=0.71-1.00, respectively) than cases of aortic/cervical arteriopathy (κ=0.36; 95% CI=0.01-0.71), unilateral focal cerebral arteriopathy of childhood (FCA; κ=0.49; 95% CI=0.23-0.76), and small vessel arteriopathy of childhood (κ=-0.012; 95% CI=-0.04 to 0.01).ConclusionsThe CASCADE criteria have moderate reliability when used by trained and experienced raters, which suggests that it can be used for classification in multicenter pediatric stroke studies. However, the moderate reliability of the arteriopathic subtypes suggests that further refinement is needed for defining subtypes. Such revisions may reduce the variability in the literature describing risk factors, recurrence, and outcomes associated with childhood arteriopathy

“People play it down and tell me it can’t kill people, but I know people are dying each day”. Children’s health literacy relating to a global pandemic (COVID-19); an international cross sectional study

The aim of this study was to examine aspects of children's health literacy; the information sources they were accessing, their information preferences, their perceived understanding of and their reported information needs in relation to COVID-19. An online survey for children aged 7-12 years of age and parent/caregivers from the UK, Sweden, Brazil, Spain, Canada and Australia was conducted between 6th of April and the 1st of June 2020. The surveys included demographic questions and both closed and open questions focussing on access to and understanding of COVID-19 information. Descriptive statistics and qualitative content analysis procedures were conducted. The findings show that parents are the main source of information for children during the pandemic in most countries (89%, n = 347), except in Sweden where school was the main source of information. However, in many cases parents chose to shield, filter or adapt their child's access to information about COVID-19, especially in relation to the death rates within each country. Despite this, children in this study reported knowing that COVID-19 was deadly and spreads quickly. This paper argues for a community rather than individual approach to addressing children's health literacy needs during a pandemic

How children in Sweden accessed and perceived information during the first phase of the Covid-19 pandemic

Aim: To describe how children in Sweden accessed and perceived information about SARS-CoV2 and Covid-19 during the first phase of the outbreak. Methods: This study is a substudy of an international cross-sectional online mixed methods survey examining elements of children’s health literacy in relation to Covid-19. The survey included multiple-choice questions, open-ended questions and drawings and collected information from 50 Swedish children (7–12 years). Data were analysed concurrently on a descriptive level using statistics and content analysis. Quantitative and qualitative data, including the drawings, were considered equally important and resulted in six categories, illuminating how children accessed and perceived information about the pandemic. Results: The survey showed that children accessed information mainly from school but also from TV. They preferred information from reliable sources. Children reported the information they accessed as easy to understand and it prompted them to ask new questions. They reported they knew a lot about the pandemic, for example, the potential danger to themselves and others and how to act to protect themselves and others. They perceived the pandemic as an intrusion on their lives. Conclusions: This study indicates that Swedish children between 7 and 12 years old were well informed about SARS-CoV2 and Covid-19 during the first phase of the pandemic. School was shown to be an important source of information. The children could explain how to act to protect themselves and others from becoming infected by the virus