Palliative Care Practitioners Research Articles

Implementation of a digital distress detection system in palliative care: qualitative data on perspectives of a multiprofessional palliative care team

BackgroundDigital health technologies such as sensor systems are intended to support healthcare staff in providing adequate patient care. In the Department of Palliative Medicine (University Medical Center Freiburg), we developed and implemented a noninvasive, bed-based sensor system in a pilot study. The aim was to detect distress in patients who were no longer able to express themselves by monitoring heart and respiratory rates, vocalizations, and movement measurements. The sensor system was intended to supplement standard care, which generally cannot guarantee constant monitoring. As there is a lack of data on how healthcare professionals experience such a techno-digital innovation, the aim of this study was to explore how the multiprofessional palliative care team who piloted the sensor system perceived its potential benefits and limitations, and how they experienced the broader context of healthcare technology and research in palliative care.MethodsWe conducted a qualitative interview study with 20 members of the palliative care team and analyzed the recorded, verbatim transcribed interviews using qualitative content analysis.ResultsThe sensor system was described as easy to use and as helpful support for patients, care staff, and relatives, especially against the backdrop of demographic change. However, it could not replace human interpretation of stress and subsequent treatment decisions: this remained the expertise of the nursing staff. A potential reduction in personnel was expected to be a risk of a digital monitoring system. The special conditions of research and digital health technologies in an end-of-life context also became clear. Specifically, healthcare staff were open to health technologies if they benefited the patient and were compatible with professional nursing and/or palliative care attitudes. Additionally, a patient-protective attitude and possible interprofessional differences in priorities and the resulting challenges for the team became apparent.ConclusionsA potential digital solution for distress monitoring was considered useful by palliative care practitioners. However, interprofessional differences and compatibility with existing palliative care practices need to be considered before implementing such a system. To increase user acceptability, the perspectives of healthcare professionals should be included in the implementation of technological innovations in palliative care.

Career Impact of Palliative Care Fellowship Training for Nurse Practitioners.

Background: Postgraduate fellowship training for nurse practitioners (NP) in palliative care can ameliorate workforce shortages; however, currently there are few NP fellowships and little evidence about outcomes, such as retention in hospice and palliative nursing, job satisfaction, or professional contributions. Objective: To describe the impact of palliative care fellowship training on the careers of NP alumni. Methods: A survey was electronically distributed to all NP alumni of an interprofessional palliative care fellowship since adult and pediatric nursing cohorts were added (2009-2022). Results: Most respondents still worked in hospice and/or palliative care; a majority of them engaged in professional activities beyond clinical work and reported high career satisfaction. Alumni endorsed multiple benefits of postgraduate fellowship except for post-fellowship compensation. Conclusions: NP palliative care fellowship alumni reported multiple career benefits including job satisfaction, professional accomplishment, and ongoing employment at their training institutions.

Patient Experiences of Specialty Palliative Care in the Perioperative Period for Cancer Surgery

ContextThough patients undergoing treatment for upper gastrointestinal (GI) cancers frequently experience a range of sequelae and disease recurrence, patients often do not receive specialty palliative care soon after diagnosis and it is unknown in what ways they may benefit. ObjectivesTo understand patient experiences of specialty palliative care in the perioperative period for patients seeking curative intent upper GI oncologic surgery. MethodsAs part of a randomized controlled trial, we conducted in-depth interviews between November 2019 and July 2021 with 23 patients in the intervention arm who were undergoing curative intent treatment for upper GI cancers and who were also followed by the specialty palliative care team. ResultsWe found five themes that characterized patient experiences and perceptions of specialty palliative care. Patients typically had limited prior awareness of palliative care (theme 1), but during the study, came to understand it as a “talking” intervention (theme 2). Patients whose concerns aligned with palliative care described it as being impactful on their care (theme 3). However, most patients expressed a focus on cure from their cancer and less perceived relevance for integration of palliative care (theme 4). Integrating specialist palliative care practitioners with surgical teams made it difficult for some patients to identify how palliative care practitioners differed from other members of their care team (theme 5). ConclusionWhile receipt of specialty palliative care in the perioperative period was generally perceived positively and patients appreciated palliative care visits, they did not describe many needs typically met by palliative care practitioners. Trial Registrationclinicaltrials.gov registration: NCT03611309.

Translation and validation of the Chinese version of Palliative Care Self-Efficacy Scale.

Accurately assessing the self-efficacy levels of palliative care professionals' is crucial, as low levels of self-efficacy may contribute to the suboptimal provision of palliative care. However, there is currently lacking a reliable and valid instrument for evaluating the self-efficacy of palliative care practitioners in China. Therefore, this study aimed to translate, adapt, and validate the Palliative Care Self-Efficacy Scale (PCSS) among Chinese palliative care professionals. This study involved the translation and cross-cultural adaptation of the PCSS, and the evaluation of its psychometric properties through testing for homogeneity, content validity, construct validity, known-groups validity, and reliability. A total of 493 palliative care professionals participated in this study. The results showed the critical ratio value of each item was >3 (p < 0.01), and the corrected item-total correlation coefficients of all items ranged from 0.733 to 0.818, indicating a good homogeneity of the items with the scale. Additionally, the scale was shown to have good validity, with item-level content validity index ranged from 0.857 to 1.000, and scale-level content validity index/Ave was 0.956. The exploratory factor analysis and confirmatory factor analysis (CFA) confirmed the 2-factor structure of the Chinese version of PCSS (C-PCSS), explaining 74.19% of the variance. CFA verified that the 2-factor model had a satisfactory model fit, with χ2/df = 2.724, RMSEA = 0.084, GFI = 0.916, CFI = 0.967, and TLI = 0.952. The known-groups validity of C-PCSS was demonstrated good with its sensitive in differentiating levels of self-efficacy between professionals with less than 1 year of palliative care experience (p < 0.001) or without palliative care training (p = 0.014) and their counterparts. Furthermore, the C-PCSS also exhibited an excellent internal consistency, with the Cronbach's α for the total scale of 0.943. The findings from this study affirmed good validity and reliability of the C-PCSS. It can be emerged as a valuable and reliable instrument for assessing the self-efficacy levels of palliative care professionals in China.

Developing a psychoeducational programme for family caregivers of people living with late stage dementia

AbstractBackgroundFamily caregivers often find it difficult to access information and support in the later stages of dementia. They may have difficulties attending in‐person support groups due to caring responsibilities. If caregivers are able to attend these groups, the information and support is often targeted towards the earlier stages of dementia.MethodAn eight session psychoeducational programme was developed in order to enable caregivers to access peer support and information from professionals with expertise relevant to the later stages of dementia. The programme sessions are held over Zoom and include the following topics: sensory stimulation, nutrition diet and swallowing, legal matters, care in the home and care homes, palliative care and pain management, funeral planning and brain donation. Sessions are co‐facilitated by health and social care professionals with relevant expertise, including a speech and language therapist, dietitian, solicitor and palliative care practitioner. Themes and session content have been co‐created through partnership working between facilitators and programme participants.ResultThe programme has been completed by four groups of caregivers (n = 26). All participants care for someone living with a rare or young onset form of dementia, and include those caring at home as well as caregivers of people living in a care or nursing home. Participants have reported a number of positive outcomes from attending the programme, with one participant stating: ‘Joining this late stage carers group – I was a bit worried about it… it’s absolutely one of the best things I could have done. In some respects, I wish I could have joined this earlier’. The programme is currently being evaluated using a time and cost survey to determine ongoing feasibility.ConclusionThere is a need for accurate and timely access to information and support for family caregivers of people living with dementia in the later stages. Online psychoeducational programmes provide the opportunity for caregivers to access both peer and professional support in their own homes. The development of this programme has benefited from ongoing and iterative input from both caregivers and professionals in the dementia support field.

Preparing for Death While Investing in Life: A Narrative Inquiry and Case Report of Home-Based Paediatric Palliative, End-of-Life, and After-Death Care.

Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling. Schwind's Narrative Reflective Process was applied to synthesize the data, resulting in an in-depth case description. The narrative approach illuminates the complexities of home-based paediatric palliative, end-of-life, and after-death care. Key findings encompass the importance of early-care coordination, interprofessional collaboration, effective symptom management, emotional and psychosocial support, and comprehensive end-of-life planning. Through the case study of the child patient, the challenges and strategies for providing holistic, family-centred care within the home environment are described. Practical insights gained from this report can inform the development and improvement of home-based palliative care programs, benefiting researchers, practitioners, and policymakers seeking to optimize care for children and families in similar contexts.

The Nature of Religious and Spiritual Needs in Palliative Care Patients, Carers, and Families and How They Can Be Addressed from a Specialist Spiritual Care Perspective

This paper is written from the perspective of a specialist religious and spiritual care practitioner who practises in major referral hospitals in Sydney, Australia. In these hospitals, religious care and ward-based spiritual care chaplaincy services are offered in tandem. The perspective offered is based on the author’s knowledge, research, and experience in how people make the necessary religious or spiritual adjustments to their deep view of reality when faced with severe or chronic pain or terminal illness. Religious and/or Spiritual Care (R/SC) are interventions that scaffold people through a process of sense-making which helps them find meaning in their new reality. These R/SC adjustments concern conscious and unconscious beliefs about ultimate meaning, morality, justice, transcendence, and relationships within themselves, and with others and the supernatural. Palliative care practitioners described the importance of spiritual care and integrated spiritual care principles into their biopsychosocial-spiritual model of care in the 1960s. As palliative care practitioners have increasingly clarified their discipline as a distinct discipline in medicine, religious and spiritual care practitioners have struggled to define their place. These concerns merit a fresh evaluation of the religious and spiritual needs of patients, carers, and families of those suffering chronic pain and terminal illness and further clarification of the specialist discipline of religious and spiritual care.

How Do Kidney Disease Clinicians View Kidney Supportive Care and Palliative Care? A Qualitative Study

Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The intersection of the practical aspects of KSC (including care activities and clinical referrals) with palliative and end-of-life care (EOLC) are largely unknown. The aim of this study was to explore kidney disease clinicians' experiences of KSC, palliative care, and EOLC. An exploratory qualitative study using semistructured focus groups. Kidney disease clinicians (18 physicians, 3 trainees, and 33 kidney disease nurses) from 5 public hospitals were recruited across Victoria, Australia. Thematic analysis of focus group transcripts. The 2 overarching themes highlighted by clinicians were their perception that their health care systems insufficiently addressed the needs of people with advanced kidney disease, as well as their aspirations to develop KSC services to improve health care experiences. Three subthemes were identified related to limitations in health care systems: (1) variation in the clinical scope of KSC, (2) limited integration of palliative care, and (3) experiences of challenging and compromised provision of EOLC. The second theme described aspirations for future KSC services to be more inclusive, seamless, and collaborative across health care providers with capacity to respond to meet changing palliative care needs. Findings may not be transferable to contexts outside of Victoria, Australia; data were collected in 2017-2018 and may not reflect current or future experiences. Kidney clinicians described systemic challenges and compromises in care experiences and the need for development of KSC services. They expressed that this development would require a consistent and systematic approach that integrates palliative care and embeds KSC as part of kidney health service delivery.

Trends in Palliative Care Research During the COVID-19 Pandemic.

To demonstrate the trends and variety of research on palliative care during the COVID-19 pandemic. A systematic search of the Web of Science database. Since the outbroke of the COVID-19 pandemic, the adjustment of palliative care systems is warranted to maintain a high quality of care. The COVID-19 -related palliative care studies account for approximately 4% of all publications on palliative care. However, there is a dearth of research investigating the nature of these studies. A total of 293 studies were included. Of the included studies, those related to system improvement were the most common (181/293, 61.8%), followed by those related to patient care (79/293, 27.0%), bereavement support for patients or family members (19/293, 6.5%), and the mental health of frontline practitioners (14/293, 4.8%). From these studies, 82, 137, and 74 studies were published in 2020, 2021, and 2022 (until August 1), respectively. The research trends of palliative care demonstrate the flexibility and rapid response of the global palliative care system to the COVID-19 pandemic and show how the palliative care system is evolving. While most studies are interested in system improvement, patient care, and bereavement support, the mental health of frontline practitioners has received less attention. Our findings provide palliative care practitioners with current valuable information and highlight possible future trends.

Influence of Palliative Care Qualifications on the Job Stress Factors of General Practitioners in Palliative Care: A Survey Study.

Due to demographic change, the number of patients in palliative care (PC) is increasing. General Practitioners (GPs) are important PC providers who often have known their patients for a long time. PC can be demanding for GPs. However, there are few studies on the job stress factors of GPs performing PC and the potential influence of their PC training. To get more insights, a postal survey was performed with GPs in North Rhine, Germany. The questionnaire was based on a literature search, qualitative pre-studies, and the Hospital Consultants' Job Stress & Satisfaction Questionnaire (HCJSSQ). Participants state that a high level of responsibility, conflicting demands, and bureaucracy are the most important stressors they experienced in PC. The influence of PC qualification level on their perceived job stress factors is low. Only advanced but not specialist qualification shows a correlation with renumeration-related stress. Gender and work experience are more dominant influences. In our study, female GPs and physicians with more work experience tend to be more stressed. In conclusion, organisational barriers, such as administration, should be reduced and renumeration should be increased to facilitate the daily work of GPs.

Can You Hear Us Now? Equity in Global Advocacy for Palliative Care.

Evidence-based advocacy underpins the sustainable delivery of quality, publicly guaranteed, and universally available palliative care. More than 60 million people in low- and middle-income countries (LMICs) have no or extremely limited access to either palliative care services or essential palliative care medicines (e.g., opioids) on the World Health Organization Model List. Indeed, only 12% of the global palliative care need is currently being met. Palliative care advocacy works to bring this global public health inequity to light. Despite their expertise, palliative care practitioners in LMICs are rarely invited to health policymaking tables - even in their own countries - and are underrepresented in the academic literature produced largely in the high-income world. In this paper, palliative care experts from Bangladesh, Colombia, Egypt, Sudan, Uganda, and Zambia affiliated with the International Association for Hospice &amp; Palliative Care Advocacy Focal Point Program articulate the urgent need for evidence-based advocacy, focusing on significant barriers such as urban/rural divides, cancer-centeredness, service delivery gaps, opioid formulary limitations, public policy, and education deficits. Their advocacy is situated in the context of an emerging global health narrative that stipulates palliative care provision as an ethical obligation of all health systems. To support advocacy efforts, palliative care evaluation and indicator data should assess the extent to which LMIC practitioners lead and participate in global and regional advocacy. This goal entails investment in transnational advocacy initiatives, research investments in palliative care access and cost-effective models in LMICs, and capacity building for a global community of practice to capture the attention of policymakers at all levels of health system governance.

Development of a Primary Palliative Nursing Care Competence Model and Assessment Tool: A Mixed-Methods Study.

The purpose of this study was to develop a new primary palliative nursing care (PPNC) competence model and assessment tool. Consensus guidelines, a national position statement, and new nursing program accreditation standards require nurses to be educated in providing PPNC. A means to assess PPNC competence for prelicensure nursing students and entry-level nurses is needed. The mixed-methods study utilized a three-phase design encompassing in-depth document analysis and expert workgroups; focus groups with palliative care educators, practitioners, and administrators; and stakeholder focus groups. Findings across all phases resulted in development of a PPNC competence model and assessment tool, each composed of nine domains and associated competency statements. There is a global imperative for nurses to provide high-quality PPNC. Both the model and assessment tool are vital to develop a nursing workforce with the skills to care for persons with serious illness and their families.

The Buddy System: An Intervention to Reduce Distress and Compassion Fatigue and Promote Resilience on a Palliative Care Team During the COVID-19 Pandemic

The SARS-CoV-2 pandemic (COVID-19) dramatically increased the number of stressors on healthcare workers, including palliative care practitioners. Restrictions and increased demands on time made it difficult for the UMass Memorial Health palliative care team to utilize preexisting wellness strategies. In response to team members’ stress reactions, a buddy system intervention was conceived and implemented to restore a sense of connection and self-efficacy (Phase 1). Our objective with this quality improvement project was to assess the feasibility and effectiveness of the buddy system and evaluate staff attitudes toward this intervention. After four months, feedback from team members informed redesign to a more structured buddy system (Phase 2). A mixed-methods design of this project included a qualitative online survey along with quantitative data collection with the Professional Quality of Life Scale V (ProQOL V) and the Brief Resilience Scale (BRS) during Phase 1. Phase 2 was also evaluated quantitatively with ProQOL V and BRS. Semi-structured interviews were conducted at the end of this project to enhance qualitative data on staff attitudes and beliefs. Of the 12 study participants, 10 completed all phases of the study. Participants reported the buddy system was a useful, easy-to-implement intervention for mitigating personal distress and compassion fatigue (CF) by providing a strong sense of support and connection to team members.

Joining Forces: The Addition of a Palliative Care Practitioner to a Resident Teaching Service During COVID-19 Pandemic as a Tool to Improve Patient Care and Provider Communication.

The COVID-19 pandemic has presented an array of novel issues for hospitals and their staff, 1 of the most noted being increased patient isolation due to visitation restrictions. This has created new challenges for health care systems and their workers. To leverage the expertise of Palliative Care Practitioners (PCP) as described here to improve patient/provider communication, patient experience, and quality of care during the COVID-19 pandemic. To address these new obstacles to patient care presented by the pandemic, a PCP was incorporated into the physician team caring for COVID-19 patients at the time of admission. Members of the care team were surveyed and interviewed regarding their experiences with this added support. During a period of peak hospital strain from COVID-19, team members consistently reported that daily PCP involvement led to improvement in communication with patients and families, greater provider awareness of psychosocial stressors, and decreased physician burnout. Integration of a PCP into a clinical care team during the COVID-19 pandemic was perceived as a valuable asset to patients, families, and clinicians.

“Like Not Having an Arm”: Perspectives of Patients, Caregivers, and Practitioners on the Impact of Visitor Restrictions on Cancer Care During the COVID-19 Pandemic (RP405)

Outcomes1. Understand how caregiver absence affected the patient and caregiver dyadic relationship2. Understand how caregiver absence affected cancer and palliative care practitionersImportanceVisitor restriction policies to prevent the spread of COVID-19 between patients and practitioners have been widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision making.Objective(s)Explore how visitor restrictions impacted cancer treatment decision making and care from patient, caregiver, and practitioner perspectives.Method(s)71 interviews, including 48 cancer patients, 4 family caregivers, and 19 cancer and palliative care practitioners from four academic cancer centers in the US between August 2020 and July 2021.ResultsVisitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital stays were universally disliked by patients, caregivers, and practitioners. Patients felt deprived of an advocate to help ask questions and to process and retain medical information when patients felt overwhelmed or impaired with “chemo brain.” Caregivers discussed that visitor restrictions made them feel “out of the loop” and increased their anxiety about the patient's care. Cancer practitioners described how visitor restrictions impaired care because caregivers were not present to share valuable health information that the patient may have forgotten or neglected to mention, and clinicians had to spend extra time to call caregivers to relay information. Some surgical oncologists expressed moral distress because they perceived that the absence of caregivers negatively affected their patients’ health outcomes because caregivers were not there to provide emotional support during hospital stays.Conclusion(s)Our data indicate that the structure of the medical decision-making relationship is more tripartite than bilateral, with caregivers being a significant third actor within the medical decision-making process. Caregivers provided support in the decision-making and care process to both patients and practitioners, and their absence created additional burden on both.ImpactAs the pandemic continues into its second year with new surges and a return to visitor restrictions, health systems should reconsider visitor policies to ease the emotional and physical burden on patients, caregivers, and practitioners.

Attitudes of Palliative Care Practitioners Towards Enrolling Patients in Clinical Trials.

Background: Recruitment of participants for clinical trials remains a key consideration for investigators. This is particularly relevant in palliative care, where practitioners are sometimes reluctant to refer patients for consideration of enrolment. Reasons for this reluctance range from concerns about excessive burden to patients, through to debate about the appropriateness of undertaking trials in the palliative care setting. Aim: The aim of this study was (1) to explore palliative care practitioners' attitudes and views of clinical trials, (2) to compare these findings with those of a similar survey undertaken more than a decade earlier, and (3) to explore predictors associated with key concepts of interest associated with clinical trials. Design: The palliative care clinician's attitudes to clinical research survey undertaken in 2007 formed the basis of a repeat survey conducted in 2019. Setting/Participants: Australian and New Zealand palliative care practitioners were surveyed. Results: Surveys were completed by 135 palliative care practitioners. Comparing results of the current study and those findings of more than a decade earlier revealed that attitudes have either not substantially changed or indeed in some areas have become less accepting of clinical trials. This is despite the dramatic increase in the volume of research carried out within palliative care over the last decade. Conclusion: Our survey suggests that the reasons for engagement in research are complex and likely to differ according to local conditions. Careful attention to understanding of the local environment and particularly the attitudes of local practitioners is likely to be essential to be successful in this endeavour.

Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany

BackgroundPalliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dying and the simultaneous withdrawal of life-sustaining measures. Amyotrophic lateral sclerosis (ALS) is characterized by symptoms including muscle weakness, dysphagia, dysarthria, muscle spasms and progressive respiratory insufficiency. Due to these characteristic symptoms, palliative sedation might be considered to be necessary to alleviate refractory suffering in ALS patients. However, palliative sedation in ALS is only rarely discussed in current medical literature and guidelines.MethodsA questionnaire survey was conducted among neurologists and palliative care practitioners in Germany. The participants were asked to evaluate the use of palliative sedation in different situations.ResultsTwo hundred and ninety-six completed questionnaires were analyzed. The results suggest high levels of support for the use of palliative sedation in ALS patients. 42% of the participants stated that they had already used palliative sedation in the treatment of ALS patients. Acceptance of palliative sedation was higher in case of physical symptoms than in case of psychological symptoms. Refusal of artificial nutrition did not lead to a lower acceptance of palliative sedation. Doctors with specialist training in palliative care had already used palliative sedation in ALS patients more often and they were more likely to accept palliative sedation in different situations than the participants without a background in palliative care.ConclusionOur survey showed that palliative sedation in ALS is widely accepted by the attending doctors. In case of psychological symptoms, palliative sedation is looked at with more concern than in case of physical symptoms. The refusal of artificial nutrition does not result in a decreased acceptance of palliative sedation. Doctors with specialist training in palliative care are more likely to approve of palliative sedation in ALS.

Variations in utilisation of colorectal cancer services in South Australia indicated by MBS/PBS benefits: a benefit incidence analysis

ObjectiveThis study investigated variations in healthcare expenditure for colorectal cancer (CRC) patients in South Australia by socioeconomic position (SEP) and remoteness area. MethodsBenefits incidence analysis (BIA) was used to examine healthcare expenditure and utilisation in relation to CRC patients by SEP and remoteness areas. Utilisation data was obtained for patients diagnosed with CRC in 2003–2013 from a dataset linked to a population‐based cancer registry, Medicare Benefits Scheme (MBS), Pharmaceutical Benefits Scheme (PBS), hospital and death data. Concentration indices estimated the distribution of health expenditure on MBS, MBS palliative care, PBS and general practitioners. Costs of claims data and length of stay in hospital were used as indicators of healthcare utilisation. ResultsThe results indicated that MBS palliative healthcare services utilisation favoured the more advantaged groups for both SEP and remoteness area (Concentration index (CI)= 0.1681, t‐value=54.42 (SEP) and CI=0.1546, t‐value=41.64). MBS expenditure was also favourable to the more advantaged groups (CI: 0.0785 and 0.0493).PBS and MBS general practitioner expenditure were equal (−0.0093 to 0.0250). ConclusionOverall MBS and PBS healthcare expenditure for CRC patients was close to equality, however utilisation of MBS‐funded palliative healthcare services was less concentrated in low SEP and more remote areas. Implications for public healthWhether the differences in palliative healthcare utilisation supplied by private providers are offset by other services requires investigation to determine if there is a need for initiatives to improve equality and give greater support to those who choose to die at home.

Apocalyptic Temporalities and Re-Setting the Future: Using Creative Pedagogies to Explore Everyday Cultures of Grief During Pandemic Times

This article provides a metacritical analysis of an oral history and creative arts project undertakencollaboratively by the authors, located in the Centre for Memory, Narrative and Histories at theUniversity of Brighton. The ‘Everyday Cultures of Grief’ project collected reflexive oral historiesfrom palliative care clinicians and practitioners to evaluate ‘everyday’ subjective experiences andemotional responses to COVID-19 and its unequal impacts. Using the Spanish Flu pandemic of1918 as a heuristic device, oral history interviews captured timely perspectives on the differingaffective scales related to illness, dying, anticipatory grief and mourning during pandemic times.Whilst highlighting some of the key themes of this empirical research, the chief purpose of this articleis to reflect on the project’s distinctive methodology, creative pedagogies and digital disseminationduring the UK’s first lockdown. Creative pedagogies were expressed in a range of affectivearticulations, including public history, creative writing and site-responsive theatre performance.The project itself raised questions about uses of the historical past, particularly in the context ofBrexit populism, as well as the hermeneutics of historical inquiry when investigating the emotionalregisters of past and present pandemics.

Exploring Specialist Palliative Care Practitioner Perspectives on the Face Validity of the Attitude to Health Change Scales in Assessing the Impact of Life-limiting Illness on Patients and Carers.

Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face validity of the Attitude to Health Change Scales (patient and carer versions) from the perspective of specialist palliative care professionals. Design: A two-stage study: (i) focus groups to explore experiences of scale use and wording, (ii) online survey to gather preferences on possible scale modifications. Focus group data were analysed using framework analysis. A hermeneutic approach was used to modify the wording of the scales, ensuring adherence to the underpinning concepts used in the design of the scale, congruence with the palliative care context, and simplicity of language. Setting/Subjects: Specialist palliative care practitioners in UK hospice settings who had been involved in pilot use of the scales in clinical practice. Results: 21 practitioners participated in 3 focus groups across 3 UK hospice sites, 9 of those participants responded to the survey. Four themes are presented: the importance and distinctiveness of the scales; maintaining conceptual integrity; ensuring a palliative care focus; and ensuring linguistic clarity. New iterations of the patient and carer versions of the Attitude to Health Change scales were developed. Conclusion: The scales appear to reflect the intended theoretical constructs, and are worded in a way which is congruent with the experience of specialist palliative care practitioners.