Researchers' experiences of the design and conduct challenges associated with parallel-group cluster-randomised trials and views on a novel open-cohort design.

BACKGROUND: Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after randomisation, collecting data from different individuals present in the cluster at these timepoints, but are unsuitable for assessment of individual change over time. An 'open-cohort' design allows individual follow-up with recruitment before and after cluster-randomisation, but little literature exists on acceptability to inform their use in CRTs. AIM: To document the views and experiences of expert trialists to identify: a) Design and conduct challenges with established parallel-group CRT designs,b) Perceptions of potential benefits and barriers to implementation of open-cohort CRTs,c) Methods for minimising, and investigating the impact of, bias in open-cohort CRTs. METHODS: Qualitative consultation via two expert workshops including triallists (n = 24) who had worked on CRTs over a range of settings. Workshop transcripts were analysed using Descriptive Thematic Analysis utilising inductive and deductive coding. RESULTS: Two central organising concepts were developed. Design and conduct challenges with established CRT designs confirmed that current CRT designs are unable to deal with many of the complex research and intervention circumstances found in some trial settings (e.g. care homes). Perceptions of potential benefits and barriers of open cohort designs included themes on: approaches to recruitment; data collection; analysis; minimising/investigating the impact of bias; and how open-cohort designs might address or present CRT design challenges. Open-cohort designs were felt to provide a solution for some of the challenges current CRT designs present in some settings. CONCLUSIONS: Open-cohort CRT designs hold promise for addressing the challenges associated with standard CRT designs. Research is needed to provide clarity around definition and guidance on application.

Implementation of an advance care planning intervention in nursing homes: an international multiple case study.

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention, has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study was to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making and , and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied with committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

How clinicians recognise people who are dying: An integrative review.

BACKGROUND: Timely recognition of dying is important for high quality end-of-life care however, little is known about how clinicians recognise dying. Late recognition is common and can lead to futile treatment that can prolong or increase suffering and prevent a change in the focus of care. AIM: To explore how clinicians caring for dying people recognise that they are in the last days or hours of life, as well as the factors that influence the recognition of dying. DESIGN: A systematically constructed integrative review of the literature. METHODS: Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, PsycInfo and Allied and Complementary Medicine were searched in July 2022. Papers were included if they were original research, discussed how clinicians recognise dying, available in English language and published in 2012 or later. A constant comparison approach was applied to the analysis and synthesis of the literature. RESULTS: 24 papers met the inclusion criteria. There were 3 main categories identified: 'Clues and signals' refers to prompts and signs that lead a clinician to believe a person is dying, incorporating the sub-categories 'knowing the patient over time', and 'intuition and experience'. 'Recognition by others' is where clinicians come to recognise someone is dying through others. This can be through a change in the context of care such as a tool or care plan or by communication with the team. 'Culture, system and practice' refers to the cultural beliefs of a setting that influences awareness of dying and denial of death as a possibility and avoidance of naming death and dying directly. System and practice of the setting also impact on recognition of dying. This involves work pace and intensity, shift systems and timing of senior reviews of patients. Uncertainty and its impact on recognition of dying are evident throughout the findings of this review. The seeking of certainty and the absence of the possibility of dying contributes to late recognition of dying. DISCUSSION: Recognition of dying is a complex process that occurs over time, involving a combination of intuition and gathering of information, that is influenced by contextual factors. A culture where dying is not openly acknowledged or even named explicitly contributes to late recognition of dying. A shared language and consistent terminology for explicitly naming dying are needed. Uncertainty is intrinsic to the recognition of dying and therefore a shift to recognising the possibility of dying rather than seeking certainty is needed. REGISTRATION: (PROSPERO) CRD42022360900. Registered September 2022.

The views and perceptions of training in physical health care amongst mental health nurses, managers of mental health nurses and trainers: A systematically constructed narrative synthesis.

People with serious mental illness have higher morbidity and mortality rates compared with the general population. Mental health nurses are in an optimal position to address physical healthcare needs and inequalities experienced by this group. Research evidence suggests that mental health nurses may lack appropriate skills and confidence. The training needs of mental health nurses in physical health care of patients with serious mental illness and the perceived effectiveness of training that is provided to mental health nurses are explored in this review. A narrative synthesis approach (PROSPERO protocol registration ID=CRD42021230923) involved searching five electronic databases (PsycInfo, Cinahl, Embase, Medline and Web of Science) from 1990 to 2021. Study quality was assessed, and analysis and synthesis were initially deductively guided by a theoretical framework of training effectiveness prior to inductive data analysis. Eleven studies met the inclusion criteria. For studies examining perceived effectiveness of training, four themes were derived from the theoretical framework (individual trainee characteristics, work environment, learning outcomes, transfer of training to job) and further theme (service user factor) generated inductively. For studies examining training needs, three themes were derived inductively (knowledge and skills requirements, modality of training, service and healthcare factors). The study highlights the need for ongoing learning to improve practice. It also provides another perspective in terms of understanding the influence of service user factors (motivation and mental state) in designing and implementing of future training in mental health settings.

A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings.

BACKGROUND: Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to community-based care after hospitalisation. AIM: To understand what happens between inpatient specialist palliative care teams and the generalist teams who provide post-discharge palliative care for shared patients. DESIGN: A constructivist grounded theory approach, using semi-structured interviews and constant comparative analysis, including coding, memo-writing and diagram construction. SETTINGS/PARTICIPANTS: Interviews (n = 21) with specialist palliative care clinicians and clinicians in other specialties providing generalist palliative care. Specialists had training in palliative care and worked in specialty palliative care practices; other clinicians worked in primary care or oncology and did not have specialised palliative care training. RESULTS: A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings was constructed. Two states of inter-team functioning were found which related to how teams perceived themselves: separate teams or one cross-boundary team. Three conditions influenced these two states of inter-team functioning: knowing the other team; communicating intentionally; and acknowledging and valuing the role of the other team. CONCLUSIONS: Teams need to explicitly consider and agree their mode of functioning, and enact changes to enhance knowledge of the team, intentional communication and valuing other teams' contributions. Future research is needed to test or expand this theory across a range of cultures and contexts.

Health care professional recruitment of patients and family carers to palliative care randomised controlled trials: A qualitative multiple case study.

BACKGROUND: Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. AIMS: To explore how clinicians recruit to palliative care trials, why they choose to implement particular recruitment strategies, and the factors that influence their choices. DESIGN: A qualitative multiple case study of three UK palliative care trials. Data collection included interviews and study documentation. Analysis involved developing and refining theoretical propositions, guided by the '6Ps' of the 'Social Marketing Mix Framework' as an a priori framework (identifying participants, product, price, place, promotion and working with partners). Framework Analysis guided within and then cross-case analysis. SETTINGS/PARTICIPANTS: Study investigators and research staff (n = 3, 9, 7) from trial coordinating centres and recruitment sites (hospice and hospital). RESULTS: Cross-case analysis suggests the 'Social Marketing Mix Framework' is useful for understanding recruitment processes but wider contextual issues need to be incorporated. These include the 'emotional labour' of diagnosing dying and communicating palliative and end-of-life care to potential participants and how the recruitment process is influenced by the power relationships and hierarchies that exist among professional groups. These factors can lead to and support paternalistic practices. CONCLUSIONS: Those planning trials need to ensure that trial recruiters, depending on their experience and trial characteristics, have access to training and support to address the 'emotional labour' of recruitment. The type of training required requires further research.

'Thank goodness you're here'. Exploring the impact on patients, family carers and staff of enhanced 7-day specialist palliative care services: A mixed methods study.

BACKGROUND: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. AIM: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. DESIGN: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. SETTING/PARTICIPANTS: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). RESULTS: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). CONCLUSIONS: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.

A Meta-Ethnographic Review of Paid Staff and Volunteers Working together in Palliative Care.

CONTEXT: Volunteers in palliative care settings are an essential part of care provision for patients and those important to them. Effective collaboration between volunteers and paid staff has been regarded as an important element of successful working, however, at times failures in coordination, information sharing and tensions within teams have been highlighted. OBJECTIVES: To explore the views expressed by volunteers and paid staff about their experiences of working together in palliative care settings. METHODS: A systematic exploration of qualitative research using a meta-ethnographic approach. PsycINFO, CINAHL, Medline Complete, and AMED databases were searched from inception to December 2021 for the concepts "volunteers" and "palliative care." Repeated in-depth reading and appraisal of papers identified metaphors and concepts, providing new interpretations. RESULTS: Included papers (n = 14) enabled the construction of five storylines: 1) "we are the cake, and they are the cream": understanding the volunteer role-separate, but part of a whole. 2) "…we don't know what's wrong with people but sometimes we need to know": access to information and importance of trust. 3) "everybody looks out for each other": access to paid staff and their support. 4) "...we don't meddle in the medical": boundaries. 5) "it's the small things that the staff does for me that makes me feel good about my work": sense of value and significance. CONCLUSIONS: For effective working relationships between paid staff and volunteers, proactive engagement, recognition of each other's role and contribution, mutual sharing of information, and intentional interaction between both groups is needed.

Sense of Coherence at End of Life in Older People: An Interpretive Description.

As people age, losses accumulate (ie, the death of family and friends, the loss of agility, and the loss of independence). Such losses have an impact on one's Sense of Coherence, that is, one's ability to see the world as comprehensible, manageable, and meaningful. Antonovsky deemed Sense of Coherence as a mostly stable state by the age of 30 years. Until now, there has not been an investigation into how serial loss of resources affects older people as they near the end of life. Sense of Coherence was used as the theoretical framework for this study to answer the question of how older people maintain or regain a Sense of Coherence in the presence of serious illness as they near death. Data were gathered using semistructured interviews and guided by interpretive description. This investigation found new concepts that contribute to Antonovsky's midlevel theory of salutogenesis and the construct of Sense of Coherence. Those are Incomprehensibility and Serial Loss of General Resistance Resources. The results indicate that the crux of a strong Sense of Coherence for this population is excellent communication and a coherent "big-picture" conversation.

What are the digitally enabled psychosocial interventions delivered by trained practitioners being offered to adults with life-shortening illnesses and palliative care needs and their informal and professional caregivers? A scoping review.

OBJECTIVES: Computer-mediated and telephone communication connecting professionals and patients (eHealth) is well established. Yet there is little information about psychosocial interventions delivered by trained practitioners for a palliative care population. The aim is to describe digitally enabled psychosocial interventions offered to adults with life-shortening or terminal illnesses and carers/families receiving palliative care, and how these are delivered and evaluated. METHODS: Using Joanna Briggs Institute scoping review methodology, 4 databases (MEDLINE, CINAHL, PsycINFO, and Academic Search Ultimate) were searched (January 2011-April 2021). Inclusion criteria: (a) any design reporting and (b) psychosocial interventions delivered digitally by palliative care health and social care practitioners to (c) adults with life-shortening illnesses. RESULTS: Included papers (n=16) were from Europe ((n=8), Asia (n=2), and the USA (n=6). Research designs encompassed pre- and post-studies, randomized control trials, feasibility, and pilot studies. Tools evaluated psychological, somatic, functional, and psychosocial outcomes. Underpinning approaches included cognitive behavioral therapy, Erikson's life review, coping skills training, psychoeducation, problem-solving therapy, counseling, emotional support and advice, and art therapy. Delivery tools used were telephones, text messages and emails, websites, videos, workbooks, and compact discs. Practitioners included counselors, psychotherapists, psychologists, art therapists, social workers, registered nurses, and trainees. Patients had Alzheimer's disease and related dementias, advanced cancers, chronic obstructive pulmonary disease, and heart failure. SIGNIFICANCE OF RESULTS: COVID-19 has accelerated the usages of digitally enabled psychosocial interventions. Evidence indicates a growing interest in hybrid, novel, synchronous, and asynchronous digital psychosocial interventions for adults with life-shortening illnesses and their caregivers receiving palliative care.

Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV).

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

Stakeholder engagement as a strategy to enhance palliative care involvement in intensive care units: A theory of change approach.

BACKGROUND: Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in ICU through a stakeholder participatory approach. METHODS: Theory of Change approach was used to develop a hypothetical causal pathway for palliative care integration into ICUs in India. Four facilitated workshops and fifteen research team meetings were conducted virtually over three months. Thirteen stakeholders were purposively chosen, and three facilitators conducted the workshops. Data included workshop discussion transcripts, online chat box comments, and team meeting minutes. These were collected, analysed and represented as theory of change map. RESULTS: The desired impact of palliative care integration was good death. Potential long-term outcomes identified were fewer deaths in ICUs, discharge against medical advice, and inappropriate admissions; increased referrals to palliative care; and improved patient and family satisfaction. Twelve preconditions were identified, and eleven key interventions were developed. Five overarching assumptions related to contextual factors influencing the outcomes of interventions. CONCLUSION: Theory of change framework facilitated the identification of proposed mechanisms and interventions underpinning palliative care integration in ICUs.

The experience of hospitalization in people with advanced chronic obstructive pulmonary disease: A qualitative, phenomenological study.

OBJECTIVES: People with advanced chronic obstructive pulmonary disease (COPD) are frequently hospitalized, reporting high physical, psychological and spiritual suffering. Existing research focused on discrete aspects of hospitalization, such as care or treatment, yet lacks a complete picture of the phenomenon. The aim of this study is to understand the lived experience of hospitalization in people with advanced COPD. METHODS: A qualitative, descriptive phenomenological approach was employed to study the phenomenon of hospitalization for people with advanced COPD. Unstructured interviews were conducted during hospitalization at a tertiary care hospital in India, in 2017, audio-recorded, and then transcribed. Giorgi's descriptive phenomenological analysis method guided the analysis. RESULTS: Fifteen people with advanced COPD participated. Emergency admissions were common because of acute breathlessness, leading to repeated hospitalizations. Hospitalization gave a sense of safety but, despite this, people preferred to avoid hospitalization. Care influenced trust in hospitalization and both shaped the experience of hospitalization. Multi-dimensional suffering was central to the experience and was described across physical, psychological and spiritual domains. DISCUSSION: Hospitalization was identified largely as a negative experience due to the perception of continued suffering. Integrating palliative care into the routine care of people with advanced COPD may enable improvements in care.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey.

BACKGROUND: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. AIM: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. DESIGN: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. SETTING/PARTICIPANTS: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. RESULTS: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. CONCLUSION: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Symptom management in people dying with COVID-19: multinational observational study.

OBJECTIVES: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. METHODS: We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect. RESULTS: 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient's condition, route of administration and dose. CONCLUSIONS: Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.

A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study).

BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall).

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. METHODS: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. RESULTS: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. CONCLUSION: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.