The need for early referral to palliative care especially for Black, Asian and minority ethnic groups in a COVID-19 pandemic: Findings from a service evaluation.

BACKGROUND: Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives. AIM: To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK. DESIGN: A retrospective service evaluation. Data were extracted from the electronic patient records. SETTING/PARTICIPANTS: The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK. RESULTS: Patients with COVID-19 have lower comorbidity scores, poorer performance status, and a shorter time from referral to death compared to patients without COVID-19. Breathlessness, drowsiness, agitation, and fever are the most prevalent symptoms during COVID-19 compared to pain and drowsiness pre-COVID-19. Time from admission to referral to palliative care is longer for Black, Asian and minority ethnic patients, especially during COVID-19. CONCLUSION: Early referral to palliative care is essential in COVID-19, especially for Black, Asian and minority ethnic groups. There is urgent need to research why Black, Asian and minority ethnic patients are referred late; how palliative care services have changed; and possible solutions to setting up responsive, flexible, and integrated services.

Older people's experiences in acute care settings: Systematic review and synthesis of qualitative studies.

BACKGROUND: There is no recent synthesis of primary research studies into older people's experiences of hospital care. OBJECTIVE: To synthesise qualitative research findings into older people's experiences of acute health care. DESIGN: Systematic procedures for study selection and data extraction and analysis. Comparative thematic approach with meta-ethnographic features for synthesis. DATA SOURCES: Worldwide grey and published literature written in English between January 1999 and December 2018 identified from databases: CINAHL, Medline, British Nursing Index, EMBASE Psychiatry, International Bibliography of the Social Sciences, PsychINFO, and AgeInfo. REVIEW METHODS: Systematic review and synthesis of 61 qualitative studies and two systematic reviews describing older patients' experiences of care in acute hospital settings. RESULTS: The physical and social environment of the hospital positioned many older patients as insignificant and powerless to influence the care they received. Patients subjugated their needs to those of staff and other patients, holding back information and requests for help. Patient knowledge of the time-based schedules for care, and experiences of waiting for care and of staff limiting their time with them served to reinforce patients' feelings of insignificance and powerlessness, reflecting the perceived primacy of bureaucratic organisation of care over individual needs and preferences. Highly negative experiences would result if these aspects of context were not mediated by individualised relational work by staff, nursing staff in particular. Some groups of patients were at particular risk of negative experiences: people with dementia and/or delirium; people with difficulty communicating, hearing or understanding; people from ethnic minority groups, especially where there was a language difference; people with low functional/physical ability; people with low literacy; and people without regular visitors and/or family support. Three key features of care consistently mediated negative feelings and were linked to more positive experiences were: "maintaining identity: see who I am", "building relationships: connect with me", and "partnering in care: involve me". CONCLUSION: Older people's care experiences in hospital may be negative in the absence of relational work by nurses to maintain people's identity, establish caring connections and ensure that individual patient needs, preferences and values are honoured in the care that is delivered. Relational care by nurses can mediate powerful institutional drivers that may otherwise result in negative experiences and poor care. Organisational and service-wide commitment are needed to create the culture and context in which relational care can flourish. Tweetable abstract: Synthesis of qualitative research on older ppl's hospital experiences: hospital's physical and social environment positions older ppl as insignificant and powerless. Highly negative experiences result if impact of context not mediated by individualised relational work by nurses.

Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals.

OBJECTIVES: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. DESIGN: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. SETTING: Three cancer centres and associated palliative care services across England. PARTICIPANTS: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. RESULTS: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. CONCLUSIONS: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

The experience of living at home with frailty in old age: a psychosocial qualitative study.

BACKGROUND: With enhanced longevity, many people in late old age find themselves frail and living at home, often alone. Whilst conceptualisations vary, frailty is often used in clinical practice as a directional term, to refer to older people at particular risk of adverse health outcomes and to organise care. Investigation of the experience of being frail is a complementary and necessary addition to international research endeavours clearly to define, predict and measure frailty. Currently, there is little empirical work exploring how people over time manage being frail. OBJECTIVE: The study aimed to understand the experience over time of home-dwelling older people deemed frail, in order to enhance the evidence base for person-centred approaches to frail elder care. DESIGN: The study design combined psychosocial narrative approaches and psycho-dynamically informed observation. Data on the experience of 15 frail older people were collected by visiting them up to four times over 17 months. These data were analyzed using psychosocial analytical methods that combined case based in-depth staged analysis of narratives with psycho-dynamically informed interpretations of observational data. SETTING: The study was carried out in the homes of the participants; all lived in a socio-economically diverse area of inner London. PARTICIPANTS: 15 participants were purposively selected for living at home, being aged 85 or older and regarded as frail by a clinical multi-disciplinary intermediate care team. RESULTS: The findings challenge the negative terms in which frailty in older age is viewed in the predominant models. Rather, frailty is understood in terms of potential capacity - a state of imbalance in which people experience accumulated losses whilst working to sustain and perhaps create new connections. CONCLUSION: This study suggests that holding together loss and creativity is the ordinary, but nonetheless remarkable, experience of frail older people. For frail older people, the presence of others to engage with their stories, to recognise and value the daily rituals that anchor their experience and to facilitate creative connections is vital if they are to retain capacity and quality of life whilst being frail.

Capacity for care: meta-ethnography of acute care nurses' experiences of the nurse-patient relationship.

AIMS: To synthesize evidence and knowledge from published research about nurses' experiences of nurse-patient relationships with adult patients in general, acute inpatient hospital settings. BACKGROUND: While primary research on nurses' experiences has been reported, it has not been previously synthesized. DESIGN: Meta-ethnography. DATA SOURCES: Published literature from Australia, Europe, and North America, written in English between January 1999-October 2009 was identified from databases: CINAHL, Medline, British Nursing Index and PsycINFO. REVIEW METHODS: Qualitative studies describing nurses' experiences of the nurse-patient relationship in acute hospital settings were reviewed and synthesized using the meta-ethnographic method. RESULTS: Sixteen primary studies (18 papers) were appraised as high quality and met the inclusion criteria. The findings show that while nurses aspire to develop therapeutic relationships with patients, the organizational setting at a unit level is strongly associated with nurses' capacity to build and sustain these relationships. The organizational conditions of critical care settings appear best suited to forming therapeutic relationships, while nurses working on general wards are more likely to report moral distress resulting from delivering unsatisfactory care. General ward nurses can then withdraw from attempting to emotionally engage with patients. CONCLUSION: The findings of this meta-ethnography draw together the evidence from several qualitative studies and articulate how the organizational setting at a unit level can strongly influence nurses' capacity to build and sustain therapeutic relationships with patients. Service improvements need to focus on how to optimize the organizational conditions that support nurses in their relational work with patients.

Developing theory and practice: creation of a Community of Practice through Action Research produced excellence in stroke care.

Much emphasis is placed on expert knowledge like evidence-based stroke guidelines, with insufficient attention paid to processes required to translate this into delivery of everyday good care. This paper highlights the worth of creating a Community of Practice (CoP) as a means to achieve this. Drawing on findings from a study conducted in 2000-2002 of processes involved in establishing a nationally lauded high quality Stroke Unit, it demonstrates how successful development of a new service was linked to creation of a CoP. Recent literature suggests CoPs have a key in implementing evidence-based practice; this study supports this claim whilst revealing for the first time the practical knowledge and skills required to develop this style of working. Findings indicate that participatory and democratic characteristics of Action Research are congruent with the collaborative approach required for developing a CoP. The study is an exemplar of how practitioner researchers can capture learning from changing practice, thus contributing to evidence-based healthcare with theoretical and practical knowledge. Findings are relevant to those developing stroke services globally but also to those interested in evidence-based practice.

Everybody matters 2: promoting dignity in acute care through effective communication.

The Dignity in Care Project (DCP) aims to deepen understanding and develop practical interventions to promote dignified care in hospitals. A key feature is that "everybody matters" (a project slogan) and that promoting and sustaining dignity in acute care requires recognition and support for staff as well as for patients and their families. DCP is a nurse led research collaboration with Royal Free Hampstead Trust, Barnet and Chase Farm Hospitals Trust and City University. Practical interventions devised by the project are presented around three keythemes. Part 1 of this series explored the first theme, "maintaining identity: see who I am", and this second part examines the second theme, "creating community: connect with me". This recognises that in the act of caring, nurses receive as well as give. Dignified care has a reciprocity where both carer and patient/family give and receive, rather than simply involving a list of practical tasks done t o someone. The third and final part looks at "shared decision making involve me" (Bridges et al, 2009).

Everybody matters 3: engaging patients and relatives in decision making to promote dignity.

Practical interventions are presented around three main themes in this three part series. This third part explores "shared decision making--involve me" (Bridges et al, 2009). This recognises the importance of engaging patients, family and staff in decisions about care and treatment. The article offers a range of interventions to hear the voices of patients, staff and relatives.

Everybody matters. 1: How getting to know your patients helps to promote dignified care.

The Dignity in Care Project aims to develop practical interventions to promote dignified care in hospitals, embedded in the project slogan: "Everybody matters: sustaining dignity in care." It is a nurse led research collaboration with Royal Free Hampstead and Barnet and Chase Farm Hospitals Trusts and City University. Practical interventions devised by the project are presented around three main themes that emerged from the views of older people and their relatives (Bridges et al, 2010; 2009). The first theme of "maintaining identity--see who I am" focuses on knowing about people, while the second of "creating community--connect with me" recognises that in the act of caring, nurses receive as well as give. The last theme of "shared decision making--involve me" looks at how decisions about care are made. This first article in a three part series summarises the project and focuses on the first theme. It reports on practical initiatives to enhance dignity in hospitals by enabling nurses and patients/carers to know and value each other as people.

Older people's and relatives' experiences in acute care settings: systematic review and synthesis of qualitative studies.

OBJECTIVE: To explore older people's and their relatives' views on and experiences of acute health care. DESIGN: Systematic procedures were used for study selection and data extraction and analysis. A comparative thematic approach to synthesis was taken with a number of features adopted from the literature on meta-ethnography. DATA SOURCES: Worldwide grey and published literature written in English between January 1999 and June 2008 identified from databases: CINAHL, Medline, British Nursing Index, EMBASE Psychiatry, International Bibliography of the Social Sciences, PsychINFO, and AgeInfo. REVIEW METHODS: We conducted a systematic review and synthesis of qualitative studies describing older patients' and/or their relatives' experiences of care in acute hospital settings. 42 primary studies and 1 systematic review met the inclusion criteria. RESULTS: A number of themes emerged. The quality of technical care is often taken for granted by older patients, and good or bad experiences are described more in terms of relational aspects of care. Older patients in hospital may feel worthless, fearful or not in control of what happens, especially if they have impaired cognition, or communication difficulties. Three key features of care consistently mediated these negative feelings and were linked to more positive experiences: "creating communities: connect with me", "maintaining identity: see who I am" and "sharing decision-making: include me". CONCLUSION: These findings highlight the perspectives of older people and their relatives on the delivery of personalized and dignified care in acute settings. They lend support to previous calls for relationship-centred approaches to care and provide a useful experience-based framework for practice for those involved in care for older people.

Guidance on best practice in acute care.

This article discusses how the Best Practice for Older People in Acute Care Settings (BPOP): Guidance for Nurses (2009) CD-ROM (Bridges et al 2009a) and accompanying essential guide (Bridges et al 2009b) can help to improve care. The authors explain how nurses can use the best practice statements on the CD-ROM and the essential guide to adapt their own practice and influence the practice of others for the benefit of patients and staff.