“It is not a scientific number it is just a feeling”:Populating a multi-dimensional end-of-life decision framework using deliberative methods

The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualisation of wellbeing as freedom and the potential for capturing outcomes for those at end of life and those close to persons at the end of life. For decision making, however, this information needs to be integrated into current evaluation paradigms. This research explored weights for an integrated economic evaluation framework using a deliberative approach. Twelve focus groups were held (38 members of the public, 29 ‘policy makers’, 7 hospice volunteers); budget pie tasks were completed to generate weights. Constant comparison was used to analyse qualitative data, exploring principles behind individuals’ weightings. Average weights elicited from members of the general population and policy makers for the importance that should be given to close persons (versus patients) were very similar, at around 30%. A ‘sliding scale’ of weights between health gain and the capability for a good death resulted from the policy maker and volunteer groups, with increasing weight given to the capability for a good death as the trajectory got closer to death. These weights can be used in developing a more comprehensive framework for economic evaluation at end of life

Qualitative critical incident study of patients’ experiences leading to emergency hospital admission with advanced respiratory illness

Objectives: The high volume of emergency admissions to hospital is a challenge for health systems internationally. Patients with lung cancer and chronic obstructive pulmonary disease (COPD) are frequently admitted to hospital as emergency cases. While the frequency of emergency admission has been investigated, few studies report patient experiences, particularly in relation to the decision-making process prior to emergency admission. We sought to explore patient and carer experiences and those of their healthcare professionals in the period leading up to emergency admission to hospital. Setting: 3 UK hospitals located in different urban and rural settings. Design: Qualitative critical incident study. Participants: 24 patients with advanced lung cancer and 15 with advanced COPD admitted to hospital as emergencies, 20 of their carers and 50 of the health professionals involved in the patients' care. Results: The analysis of patient, carer and professionals' interviews revealed a detailed picture of the complex processes involved leading to emergency admission to hospital. 3 phases were apparent in this period: self-management of deteriorating symptoms, negotiated decision-making and letting go. These were dynamic processes, characterised by an often rapidly changing clinical condition, uncertainty and anxiety. Patients considered their options drawing on experience, current and earlier advice. Patients tried to avoid admission, reluctantly accepting it, albeit often with a sense of relief, as anxiety increased with worsening symptoms. Conclusions: Patients with advanced respiratory illness, and their carers, try to avoid emergency admission, and use logical and complex decision-making before reluctantly accepting it. Clinicians and policy-makers need to understand this complex process when considering how to reduce emergency hospital admissions rather than focusing on identifying and labelling admissions as 'inappropriate'

Using Culturally Relevant Experiential Education to Enhance Urban Children’s Knowledge and Engagement in Science

Background: Children living in urban areas often have limited opportunities to experience informal science environments. As a result, some do not have a deep understanding of the environment, natural resources, ecosystems, and the ways human activities affect nature. Purpose: This article examines how experiential science education supported urban children’s science knowledge and engagement through cultural relevance and eco-justice during a 1-week summer camp. Methodology/Approach: Third- through sixth-grade children from African American and Latinx urban communities in Colorado participated in a weeklong program using experiential learning opportunities including environmental and climate change lessons, activities at a local community-based site, and field trips to nature- and science-themed sites. Pre- and posttests, focus group interviews, journals, and student work samples were analyzed. Findings/Conclusions: Children’s science content knowledge as well as their engagement in science lessons and field trips were positively influenced during the study. Implications: This study provides a template for establishing culturally relevant experiential learning opportunities to engage underrepresented children in science

“It's been quite a challenge”: Redesigning end-of-life care in acute hospitals

AbstractObjective:This paper reports the findings of an interview-based study undertaken to investigate the introduction of end-of-life (EoL) care pathways in three acute trusts, as part of a larger project examining service redesign. The aim was to examine the barriers to and facilitators of change.Method:Twenty-one in-depth qualitative interviews were conducted with staff working in three National Health Service (NHS) acute hospital trusts. These staff members were involved in end-of-life care, and their accounts were analyzed to identify the key issues when introducing service changes in these settings.Results:Thematic analysis revealed five major themes—two of which, leadership and facilitation, and education and training, indicate what needs to be in place if end-of-life care pathways are to be adopted by staff. However, the remaining three themes of difficult conversations, diagnosing dying, and communication across boundaries highlight particular areas of practice and organization that need to be addressed before end-of-life care in hospitals can be improved.Significance of results:Organization of end-of-life care in acute hospitals is challenging, and care pathways provide a degree of guidance as to how services can be delivered. However, even when there is effective leadership at all levels of an organization and an extensive program of education for all staff support the use of care pathways, significant barriers to their introduction remain. These include staff anxieties concerning diagnosing dying and discussing dying and end-of-life care planning with patients and their families. It is hoped these findings can inform the development of the proposed new care plans which are set to replace end of life care pathways in England.</jats:sec

The experiences of informal carers during the COVID-19 pandemic:A qualitative systematic review

Objectives: To identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic. Design: A qualitative systematic literature review. Data Sources: Eight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources. Study selection: Eligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English. Data extraction and synthesis: Retrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings. Results: Fourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers’ wellbeing and ability to cope. Conclusion: Carers’ needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review

A team approach to recruitment in hospice research:engaging patients, close persons and health professionals

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting