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Additional file 2.

A scoping review to identify core components in effective symptom self-management interventions among adults with chronic illness.

Additional file 3.

Additional file 4.

Peer reviewed: True, Acknowledgements: We are grateful to Lori Bourke for assistance with qualitative interviews and data management., IntroductionLittle consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes.Materials and methodsA mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity.ResultsThere were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key “pillars” being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued.ConclusionRelationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

Additional file 1.

Background/aims: People with advanced dementia (PwD) are affected by symptoms and needs that are challenging for nurses and relatives to elicit. The UK-developed IPOS-Dem, translated/culturally adapted into Swiss-German for the acute care and community care setting, is a holistic, person-centred measure to aid caregivers to identify symptoms and needs. Comprehension of the IPOS-Dem needs to be tested before more detailed psychometric testing. Methods: Nurses with diploma/university degrees and relatives over 18 years were purposively recruited. Rounds of a maximum three cognitive interviews were conducted. Thinking-aloud- and probing questions, based on Tourangeau’s (comprehension, retrieval, judgement, and response) model, were applied with each participant. Interviews were transcribed and analysed from audio file by two independent researchers. Inconsistencies were resolved by consensus. Results: Eight interviews in three rounds were completed in Spring 2021. Two relatives, three acute-care (ACNs), and three district nurses (DNs) agreed to participate. Participants welcomed the clear and understandable instructions, and description of all items. ACNs and DNs differed in judgement of items, from being able to assess the PwDs need at all (e.g., feeling sad, enjoying things), to interpreting a symptom or need, and having different concepts in mind (e.g., agitation, wandering). Retrieval difficulties and differences between ACNs and DNs were identified in psycho-social items (e.g., ‘feeling at peace’); ACNs were reflecting on the PwDs overall life, whilst DNs were thinking about the present and how the PwD is affected by it. Conclusions: The IPOS-Dem has been adapted in culture and content validity, with Swiss-German versions developed for both the acute care and community care setting. Although the versions do not differ substantially, the implications for teaching- and implementation of the IPOSDem into routine care diverge considerably.

Supplemental material, sj-pdf-1-pmj-10.1177_02692163211068282 for Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review by Megumi Kishino, Clare Ellis-Smith, Oladayo Afolabi and Jonathan Koffman in Palliative Medicine

Additional file 1.

Supplemental material, sj-docx-3-pmj-10.1177_02692163211004403 for Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study by Farina Hodiamont, Helena Hock, Clare Ellis-Smith, Catherine Evans, Susanne de Wolf-Linder, Saskia Jünger, Janine Diehl-Schmid, Isabel Burner-Fritsch and Claudia Bausewein in Palliative Medicine

Supplemental material, sj-docx-2-pmj-10.1177_02692163211004403 for Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study by Farina Hodiamont, Helena Hock, Clare Ellis-Smith, Catherine Evans, Susanne de Wolf-Linder, Saskia Jünger, Janine Diehl-Schmid, Isabel Burner-Fritsch and Claudia Bausewein in Palliative Medicine

Additional file 3. Full search strategy.

Supplemental material, sj-docx-4-pmj-10.1177_02692163211004403 for Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study by Farina Hodiamont, Helena Hock, Clare Ellis-Smith, Catherine Evans, Susanne de Wolf-Linder, Saskia Jünger, Janine Diehl-Schmid, Isabel Burner-Fritsch and Claudia Bausewein in Palliative Medicine

Supplemental material, sj-docx-1-pmj-10.1177_02692163211004403 for Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study by Farina Hodiamont, Helena Hock, Clare Ellis-Smith, Catherine Evans, Susanne de Wolf-Linder, Saskia Jünger, Janine Diehl-Schmid, Isabel Burner-Fritsch and Claudia Bausewein in Palliative Medicine

Additional file 2. PRISMA checklist.

Additional file 1. Conceptual framework.

Background Adults increasingly live and die with chronic progressive conditions into advanced age. Many live with multimorbidity and an uncertain illness trajectory with points of marked decline, loss of function and increased risk of end of life. Intermediate care units support mainly older adults in transition between hospital and home to regain function and anticipate and plan for end of life. This study examined the patient characteristics and the factors associated with mortality over 1 year post-admission to an intermediate care unit to inform priorities for care. Methods A national cohort study of adults admitted to intermediate care units in England using linked individual-level Hospital Episode Statistics and death registration data. The main outcome was mortality within 1 year from admission. The cohort was examined as two groups with significant differences in mortality between main diagnosis of a non-cancer condition and cancer. Data analysis used Kaplan-Meier curves to explore mortality differences between the groups and a time-dependant Cox proportional hazards model to determine mortality risk factors. Results The cohort comprised 76,704 adults with median age 81 years (IQR 70–88) admitted to 220 intermediate care units over 1 year in 2016. Overall, 28.0% died within 1 year post-admission. Mortality varied by the main diagnosis of cancer (total n = 3680, 70.8% died) and non-cancer condition (total n = 73,024, 25.8% died). Illness-related factors had the highest adjusted hazard ratios [aHRs]. At 0–28 days post-admission, risks were highest for non-cancer respiratory conditions (pneumonia (aHR 6.17 [95%CI 4.90–7.76]), chronic obstructive pulmonary disease (aHR 5.01 [95% CI 3.78–6.62]), dementia (aHR 5.07 [95% CI 3.80–6.77]) and liver disease (aHR 9.75 [95% CI 6.50–14.6]) compared with musculoskeletal disorders. In cancer, lung cancer showed largest risk (aHR 1.20 [95%CI 1.04–1.39]) compared with cancer ‘other’. Risks increased with high multimorbidity for non-cancer (aHR 2.57 [95% CI 2.36–2.79]) and cancer (aHR 2.59 [95% CI 2.13–3.15]) (reference: lowest). Conclusions One in four patients died within 1 year. Indicators for palliative care assessment are respiratory conditions, dementia, liver disease, cancer and rising multimorbidity. The traditional emphasis on rehabilitation and recovery in intermediate care units has changed with an ageing population and the need for greater integration of palliative care.