Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.

BACKGROUND: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. AIM: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. DESIGN: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis. SETTING/PARTICIPANTS: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness. RESULTS: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations). CONCLUSIONS: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.

'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

The benefits and challenges of embedding specialist palliative care teams within homeless hostels to enhance support and learning: Perspectives from palliative care teams and hostel staff.

BACKGROUND: People residing in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support falling to hostel staff. AIM: To evaluate a model embedding palliative specialists, trained as 'homelessness champions', into hostels for two half-days a month to provide support to staff and residents and facilitate a multidisciplinary approach to care. DESIGN: An exploratory qualitative design. SETTING/PARTICIPANTS: Four homeless hostels in London, UK, including nine hostel managers/support staff and seven palliative care specialists (five nurses and two social workers). RESULTS: Benefits to introducing the model included: developing partnership working between hostel staff and palliative care specialists, developing a holistic palliative ethos within the hostels and improving how hostel staff seek support and connect with local external services. Challenges to implementation included limited time and resources, and barriers related to primary care. CONCLUSION: This is the first evaluation of embedding palliative care specialists within homeless hostels. Inequity in health and social care access was highlighted with evidence of benefit of this additional support for both hostel staff and residents. Considering COVID-19, future research should explore remote ways of working including providing in-reach support to homelessness services from a range of services and organisations.

Secondary care usage and characteristics of hospital inpatients referred to a UK homeless health team: a retrospective service evaluation.

BACKGROUND: UK "Pathway" teams offer specialist hospital care coordination for people experiencing homelessness. Emergency healthcare use is high among homeless people, yet "homelessness" is not routinely coded in National Health Service (NHS) data. Pathway team records provide an opportunity to assess patterns in admissions and outcomes for inpatients identified as homeless. METHODS: Retrospective analysis of patients referred to "Pathway" homelessness teams in seven UK hospitals to explore the patterns of hospital admission, morbidity, secondary healthcare utilisation and housing status. Each patient was individually identified as experiencing homelessness. Within a six-month period, demographic data, reason for admission, morbidity, mortality and secondary care hospital usage 120-days before and 120-days after the index admission was collected. RESULTS: A total of 1009 patients were referred, resulting in 1135 admissions. Most admissions had an acute physical health need (94.9%). Co-morbid mental illness and/or substance misuse was common (55.7%). Reasons for admission included mental and behavioral disorders (overdose, alcohol withdrawal or depression, 28.3%), external causes of morbidity and mortality (assault or trauma, 18.7%), and injury, poisoning and external causes (head injury, falls and fractures, 12.4%). Unplanned Emergency Department attendances reduced after index admission and unplanned hospital admissions increased slightly. Planned admissions doubled and total bed days increased. Housing status was maintained or improved for over 60% of inpatients upon discharge. Within 12 months of index admission, 50 patients (5%) died, 15 deaths (30%) occurred during the index admission. CONCLUSIONS: Disengagement with health services is common among homeless people. Many deaths are due to treatable medical conditions (heart disease, pneumonia, cancer). Observed increases in planned admissions suggests intervention from Pathway teams facilitates necessary investigations and treatment for homeless people. Equity, parity of care, and value should be inbuilt interventions for inclusion health groups and evaluations need to move beyond simply seeking cost reductions.

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care.

BACKGROUND: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. AIM: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. DESIGN: Thematic analysis of data collected using focus groups and interviews. PARTICIPANTS: Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). RESULTS: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. CONCLUSION: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review.

BACKGROUND: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. AIM: To explore how children and young people (aged 0-25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. DESIGN: Systematic review. DATA SOURCES: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. RESULTS: A total of 215 studies - 152 qualitative, 54 quantitative and 9 mixed methods - were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants' perceptions of potential burdens. CONCLUSION: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.

Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research.

BACKGROUND: People who are homeless or vulnerably housed are a marginalized group who often experience high rates of morbidity and die young as a result of complex problems. Access to health care and support can be challenging, with access to palliative care even more so. This review presents a synthesis of published qualitative research exploring from the perspective of homeless people and those working to support them, current challenges to palliative care access and provision, in addition to suggestions for what may improve palliative care for this population. METHODS: Systematic review of qualitative research analysed using thematic synthesis. PsycINFO, Medline, Sociological Abstracts, Social Services Abstracts, Science citations index and CINAHL were searched up to September 2016. Thematic synthesis involved a three-step inductive process to develop a deeper understanding of the challenges to and suggestions for the access and provision of palliative care for homeless people. RESULTS: Thirteen qualitative articles, reporting nine studies were identified. The challenges to access and provision to palliative care were drawn from the data covering three broad areas, namely "the chaotic lifestyles sometimes associated with being homeless", "the delivery of palliative care within a hostel for homeless people" and provision within "mainstream health care systems". Obstacles were related to homeless persons competing day-to-day priorities, their experience of stigma in mainstream settings, the high burden on hostel staff in supporting residents at the end of life and inflexibility in mainstream health care systems. Suggestions for improving access to palliative care include building trust between homeless persons and health professionals, increasing collaboration between and flexibility within services, and providing more training and support for all professionals. CONCLUSIONS: The provision of palliative care can be complicated for all populations, however delivering palliative care for people who are homeless is influenced by a potentially greater and more varied range of factors, on both individual and systemic levels, than providing palliative care for the housed population. Careful consideration and potentially great changes will be needed within health care systems to ensure homeless populations have equitable access to palliative care.

Exploring the Impact of Intraoperative Interventions for Pain and Anxiety Management During Local Anesthetic Surgery-A Systematic Review and Meta-Analysis.

PURPOSE: To compare the effectiveness of audiovisual and relaxation-based intraoperative interventions for their impact on intraoperative pain and anxiety. DESIGN: Systematic review and meta-analysis. METHODS: The following databases were searched for articles published between 1990 and January 2014: MEDLINE, PsychINFO, CINAHL, and Web of Science. Twenty randomized trials meeting the following inclusion criteria were included; adult participants undergoing elective outpatient surgery under local anesthetic using a form of distraction-based intraoperative intervention for the management of anxiety and pain. FINDING: Thirty percent of studies reviewed found that intraoperative interventions improved patient experience in comparison to treatment as usual, 20% of studies were inconclusive, and 50% of studies found that interventions during surgery provided no benefit. CONCLUSIONS: Both relaxation-based and audiovisual interventions were found to be efficacious for pain and anxiety management during surgery under local anesthetic. This review indicates that relaxation-based interventions could be more effective than audiovisual interventions for managing intraoperative anxiety.

A thematic analysis of experiences of varicose veins and minimally invasive surgery under local anaesthesia.

AIMS AND OBJECTIVES: To gain insight into the experience of living with varicose veins and undergoing minimally invasive surgery under local anaesthesia in a private clinic. BACKGROUND: Minimally invasive surgery under local anaesthesia is replacing traditional surgical stripping for the treatment for varicose veins. Conscious surgery has previously been associated with elevated levels of anxiety and some associated pain. There is limited research exploring the experiences of patients undergoing varicose vein surgery under local anaesthesia. DESIGN: Qualitative semi-structured interviews with 20 patients who took part in a mixed methods study exploring the effects of distraction on intra-operative pain and anxiety. METHODS: Participants were interviewed eight weeks post surgery about their experiences before, during and after surgery. Interviews were analysed using thematic analysis. RESULTS: Four themes were captured (1) negative emotions associated with symptoms, (2) unpreparedness for the surgical process, (3) feeling cared for and (4) improvements in well-being. An overarching theme of relationships was identified. Overall, varicose veins had a detrimental impact on quality of life prior to surgery. Patients felt unprepared for their procedure and experienced the operation as anxiety provoking and uncomfortable. This was much helped by the support of nursing staff in the theatre. Post surgery, patients' quality of life was reported as improved. CONCLUSIONS: More emphasis needs to be placed on preparing patients for surgery under local anaesthesia. The role of the nurse is central to creating a caring, relaxed environment which could improve patient experience. RELEVANCE TO CLINICAL PRACTICE: Patients' experiences of varicose veins and their treatment both influence, and are influenced by relationships with others at all stages of the management process. Nurses play an important role in improving patient experience during surgery and care needs to be taken to ensure that patients understand and accept the processes of surgery and recovery.

Private sector business interactions with bereaved people: UK Commission on Bereavement secondary analysis.

OBJECTIVES: Evidence suggests that 61% of adults who were bereaved in the past 5 years had difficulties with at least one practical or administrative task following bereavement. We aimed to explore individual's experiences of interacting with private sector businesses following a bereavement. METHODS: Qualitative secondary analysis of data collected via an online survey within the UK Commission on Bereavement. Data from 1133 survey respondents was extracted verbatim, and thematic analysis was carried out. Participants were adults who had experienced a bereavement within the past 5 years and lived in the UK. They were eligible to take part in the survey. RESULTS: Three core themes were developed: (1) needs of bereaved people outside of 'business as usual', (2) admin burden while grieving and (3) the impact and experience of organisational failures. The results of this secondary analysis outline that bereaved individuals often struggle with several points of interaction with private businesses, including facing resistance when making initial contact, insensitive or non-empathetic interactions, facing unrealistic timelines for administrative tasks that are not then returned by the business, and difficulty understanding and completing paperwork. Participants emphasised the difficulty in navigating this while in the initial period following a bereavement. CONCLUSIONS: People experiencing a bereavement experience a high degree of mental load and emotional burden linked with interacting with private businesses following a bereavement. Given that this forms only one element of a person's whole bereavement experience, it is important that changes to policy and practice are made to allow a simple, positive experience for bereaved customers.

Understanding aims, successes and challenges of palliative care and homelessness initiatives across the UK: an exploratory study.

BACKGROUND: Due to the recognition that people experiencing homelessness (PEH) often die young and unsupported, a growing number of initiatives focusing on palliative care and homelessness are emerging across the UK. However, there has been no systematic exploration of the nature and landscape of this work. AIMS: To understand the range, aims, successes and challenges of current initiatives within the field of palliative care and homelessness in the UK, by exploring existing projects and initiatives. METHOD: An online survey was distributed to members of an Extension for Community Healthcare Outcomes network focusing on palliative care and homelessness for a mixed professional audience. The survey collated the aims, successes and challenges of initiatives aiming to improve palliative care for PEH. Responses were summarised using descriptive statistics, and free-text responses were analysed using thematic analysis. RESULTS: 162 professionals completed the survey. Of these, 62% reported involvement in at least one palliative care and homelessness initiative. Initiatives focused on service delivery (59%), training (28%) and research (28%). Themes for success included improved service engagement, relationship formation, housing provision, honouring end-of-life wishes, upskilling staff and enabling safe hospital discharge. The main challenges included stigma around substance misuse, securing funding, staff capacity, equipment and facilities, and engaging communities. CONCLUSION: The number and scope of initiatives aiming to support PEH with advanced ill health and palliative care needs across the UK is growing, with a range of professionals engaging in the field. Future research may benefit from exploring initiatives in more detail to understand the specific drivers of impact on PEH and the staff and services supporting them.

Involving people with lived experience of homelessness in palliative and end of life care research: key considerations from experts in the field.

BACKGROUND: Co-production of research aims to include people with lived experience of a phenomena throughout the research process. People experiencing homelessness often experience advance ill-health at a young age, yet access palliative care services at a disparately low rate to the level of palliative care need. The voices of people experiencing homelessness are infrequently heard throughout palliative care research, despite the complexities and intricacies of the area. AIM: To explore the experiences of experts in the field to identify key context considerations for involving people with lived experience of homelessness in palliative and end of life care research. METHODS: Qualitative study comprising two data collection streams: interviews with professionals with experience of involving people experiencing homelessness in their work, and focus groups with people with lived experience (PWLE) of homelessness. Data were analysed using iterative, reflexive thematic analysis. Patient and Public Involvement contributors gave feedback on themes. RESULTS: A total of 27 participants took part in semi-structured interviews (N = 16; professionals) or focus groups (N = 11; PWLE homelessness). Key considerations of involving people experiencing homelessness in palliative and end of life care research were developed into four key themes: complexity of lived experience of homelessness; representation of homelessness within experts by experience; professionalising lived experience; and methods for involvement. CONCLUSIONS: Involvement of people with lived experience of homelessness is important in developing palliative care research. This paper begins to outline some contextual considerations for promoting involvement in a complex and intricate field of research.

People experiencing homelessness often become unwell at a young age. They often experience several illnesses at the same time, and many people experiencing homelessness may also experience substance misuse disorders and/or mental illness.Despite this, they often are not identified as needing palliative care support, therefore rarely access services. Research into palliative care and homelessness may benefit from including people with lived experience of homelessness, yet this is rarely done, and is a sensitive and challenging area. The current study carried out interviews with professionals who have previously involved those with lived experience of homelessness in their work, and focus groups with people with lived experience of homelessness. Twenty seven participants took part: 16 professionals with extensive experience of supporting PEH and 11 people with lived experience. Key considerations of involving people experiencing homelessness in palliative care research were developed into four key themes: complexity of lived experience of homelessness; representation of homelessness within experts by experience; professionalising lived experience; and methods for involvement. Involvement of people with lived experience of homelessness is important in developing palliative care research. This paper begins to outline some contextual considerations for promoting involvement in a complex and intricate field of research.

Somebody who understands the culture and their needs that can cater for them in their retirement time: a peer research study exploring the challenges faced by British Muslims with palliative care needs during the COVID-19 pandemic.

BACKGROUND: Inequities in palliative and end-of-life care access exist, with evidence of lower uptake of these services among people from the British Muslim community. Little research exists exploring the experiences of British Muslims with palliative care needs and their families during the pandemic or before. AIM: To coproduce peer research exploring the experiences of British Muslims with palliative care needs and their families during the COVID-19 pandemic. DESIGN: A collaborative peer research interview study. Peer researchers were recruited and trained to undertake qualitative interviewing. Data were analysed using reflective thematic analysis. SETTING/PARTICIPANTS: 3 peer researchers conducted 11 telephone interviews (10 in English and 1 in Urdu) between August and September 2021 with 12 participants (5 people with palliative care needs and 7 family carers). RESULTS: Four themes were identified: (1) issues in accessing healthcare exacerbated by the COVID-19 pandemic, (2) the impact on family carers, (3) variation in support from community groups and (4) social and information exclusion. The COVID-19 pandemic exacerbated existing challenges to accessing healthcare services for British Muslims with palliative care needs. Family members experienced the cumulative impact of supporting people with palliative needs while also advocating for and supporting them to access the care they required. Language barriers, digital exclusion and uncertainly about how to access information, in addition to the apparent lack of consideration of important festivals in the Muslim calendar in the implementation of policies around lockdowns, culminated in a sense of exclusion from COVID-19-related policies and messaging for this population. CONCLUSIONS: These findings support the need to involve people from diverse backgrounds in the design and delivery of healthcare services and policies. Learning from this unique time in our histories should be used to shape future delivery of culturally aware and inclusive care.

Bereaved pupil support in schools: teacher training.

OBJECTIVES: Approximately, 1600 pupils are bereaved by a parent or sibling each year in Northern Ireland, equating to at least one child in every school class. Despite this, many children who are bereaved do not receive support from their school or college. Unsupported childhood bereavement is a risk factor for a number of social, psychological and educational difficulties. We aimed to carry out a service evaluation to explore the impact of a bereavement training course delivered to teaching staff in Northern Ireland. METHODS: A mixed methods, participant-oriented evaluation was carried out. Data were collected via a survey distributed at baseline (prior to training) and 4-month follow-up, and semistructured interviews. All participants were staff within the school community who had participated in the training. Quantitative survey data were analysed via statistical analysis, and open-text survey responses and interview data were analysed via thematic analysis. RESULTS: Quantitative survey responses indicated statistically significant improvements in teachers' confidence and knowledge on supporting bereaved children after the training. Six key themes were developed from interview data: the impact of the training on teaching staff's confidence, knowledge, on the schools' policy and practice, the impact on pupils, and whole school training. CONCLUSIONS: Given the significant role that teachers have in a child's formative years, it is essential that teaching staff are adequately trained and equipped to recognise and support both prebereavement and grief in pupils. A whole school bereavement training programme can be effective, as part of a wider culture and practice which values bereavement support in school.

Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis.

BACKGROUND: Co-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palliative and end of life care (PEoLC) has been highlighted, yet few recommendations exist regarding best practice for involving inclusion health groups (i.e., groups that are socially excluded, typically experiencing multiple disadvantages that contribute to poor health outcomes). AIMS: To identify and synthesise qualitative literature outlining barriers and facilitators for involving four inclusion health groups (individuals with lived experience of: homelessness, substance use disorder, incarceration or exchanging sex for money) in PEoLC research, from the perspectives of both the researchers and individuals with lived experience. METHODS: This report is a rapid review with thematic synthesis methodology. Three electronic databases were searched (2012-30th August 2022). Thematic synthesis was used to generate themes across qualitative studies. RESULTS: Three qualitative studies were eligible for inclusion. Two involved individuals with lived experience of incarceration, and one lived experience of homelessness. No papers outlined best-practice guidance for co-research; all offered reflections on the co-research process. Challenges for involvement included: facilitating appropriate reimbursement; overcoming stigma; fear of tokenism; pre-conceived views and the emotional burden of research. Successes and benefits included: advanced level of insight, a two-way learning opportunity and relatability of lived experience co-researchers. CONCLUSIONS: This review did not identify any best-practice guidance for co-production of PEoLC research with inclusion health groups. There are few, good quality, qualitative studies offering insight into challenges and facilitators for lived experience co-researcher involvement. Further research and formal policy development is required to produce formal best-practice guidance to support safe, impactful inclusion in PEoLC research. It is important that researchers work together with people who have lived experience of the topic they are researching. Palliative care is specialised medical care for people living with a terminal illness. There is some collaboration between researchers and people with lived experience in palliative and end-of-life care research. However, some groups of people have been excluded. This includes people experiencing homelessness, or people with drug or alcohol addictions. This review aimed to understand what works and what doesn't work when involving four excluded groups in palliative and end-of-life research. These groups were people experiencing homelessness, those who had spent time in prison, people with drug or alcohol disorders, and people who exchanged sex for money. This review used a shortened methodology, which allowed it to be done quickly. Three online academic databases (Medline, PubMed, PsychINFO) were searched for research projects: three papers were included in the review. No clear guidance for working with these groups was found. Analysis identified themes across papers. Challenges for collaboration included: appropriate payment methods; overcoming stigma; fear of being talked down to,; assumptions made before meeting people, and the potential of becoming upset. Successes and benefits included: better understanding of the research topic, the opportunity to learn from one another, and how research participants could relate to lived experience co-researchers. There are few, good quality papers, but more research is needed to produce guidance to support safe, impactful collaboration.

Palliative care, homelessness, and restricted or uncertain immigration status.

Background: People experiencing homelessness have limited access to palliative care support despite high levels of ill health and premature mortality. Most research exploring these challenges in the United Kingdom has focused on people living in hostels or temporary accommodation. People with uncertain or restricted immigration status are often unable to access this accommodation due to lack of entitlement to benefits. There is little research about the experiences of those in the United Kingdom who cannot access hostels or temporary accommodation due to restricted or uncertain immigration status with regards to palliative and end-of-life care access. Aim: To explore the barriers to palliative and end-of-life care access for people with uncertain or restricted immigration status, who are experiencing homelessness and have advanced ill health, and the experiences of UK hospices of supporting people in this situation. Design: A multi-method cross-sectional study. Setting/participants: An online survey for hospice staff followed by online focus groups with staff from inclusion health, homelessness and palliative care services, charities and interviews with people experiencing homelessness. Results: Fifty hospice staff responded to the online survey and 17 people participated in focus groups and interviews (focus groups: n = 10; interviews: n = 7). The survey demonstrated how hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless and that hospice staff have received limited training around eligibility for entitlements or National Health Service (NHS) care. Interview and focus group data demonstrated high levels of unmet need. Reasons for this included a lack of consistency around eligibility for support from local authorities, issues relating to NHS charging, and mistrust and limited knowledge of the UK health and social care system. These barriers leave many people unable to access care toward the end of their lives. Conclusion: To advocate for and provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people's entitlement to care and support, as well as easier access to specialist legal advice.

Palliative care, homelessness and restricted or uncertain immigration status Most research from the UK about access to support at the end of life for people who are homeless has looked at the experiences of people who are staying in hostels or temporary accommodation. People that are not UK nationals are not entitled to the benefit which pays for hostel or temporary accommodation. There is a group of people in the UK who are very unwell, who are homeless and are not able to access hostel accommodation due to their immigration status. This project explored the experiences of this group around access to palliative care. We spoke to professionals from health and social care services, charities and local councils and people who are in this situation themselves. Hospice staff were also surveyed to see if they had experience of supporting people in this situation. The survey showed that hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless, and that they have limited training around supporting people in this situation. In the interviews and focus groups, opinions were heard about challenges to palliative care support for people with uncertain or restricted immigration status who were experiencing homelessness. Professionals described how it can be hard to obtain support from local authorities, and also understanding rules about who has to pay to receive NHS care. People with uncertain or restricted immigration status who were also homeless did not always know how to access the UK health and social care system and had negative experiences of doing so in the past. As a result, many people are unable to access care towards the end of their lives. To provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people's entitlement to care and support, as well as easier access to specialist legal advice.

People living in homeless hostels: a survey of health and care needs.

People experiencing homelessness have extremely poor health outcomes and frequently die young. Many single homeless people live in hostels, the remit of which is to provide support to facilitate recovery out of homelessness. They are not usually designed to support people with high health or care needs. A cross-sectional survey was developed with, and completed by, hostel managers to explore and quantify the level of health and care needs of people living in their hostels. In total, 58 managers completed the survey, with information on 2,355 clients: 64% had substance use disorder, 56% had mental health issues, and 37.5% were in poor physical health. In addition, 5% had had more than three unplanned hospital visits in the previous month, and 11% had had safeguarding referrals submitted over the past year. Barriers to getting support and referrals accepted were highlighted, particularly for people with substance use disorder. Hostel managers identified 9% of clients as having needs too high for their service, while move-on options were scarce. Our study highlights significant unmet needs. Health and care services are not providing adequate support for many people living in hostels, who often have very poor health outcomes. This inequity needs to be considered and addressed as a matter of urgency.

Research participation in palliative medicine-benefits and barriers for patients and families: rapid review and thematic synthesis.

BACKGROUND: Research is essential for gathering evidence to inform best practice and clinical decision making, for developing and testing new treatments and services in palliative and end-of-life care (PEoLC). The participation of patients, carers and family members is essential, however, personal and ethical concerns are often cited by professionals as barriers to recruitment. There is evidence that patients and family members can benefit from participation in PEoLC research. AIM: To synthesise the evidence regarding patients', family members' and carers' experiences of participating in PEoLC research. To identify recommendations for enhancing the experience of participants. DESIGN: A qualitative rapid review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO and PubMed were searched from 2010 to 2020. Studies reporting patients', family members' or carers' experiences of participating in PEoLC research were included. RESULTS: 4 studies were included and 7 themes identified relating to the benefits of, and barriers to, participation in PEoLC research. Both altruistic and personal benefits of participation were reported. Barriers (negative aspects) to participation included feeling overwhelmed, practical issues, reminders of being a patient, not seeing the research as relevant to them and unmet needs. CONCLUSIONS: A number of benefits (positive aspects) surround participation in PEoLC research. However, several barriers (negative aspects) can prevent or discourage participation. This review has identified recommendations for research teams to enhance the experience, and number of people who those participating in research in this field.

Research barriers in children and young people with life-limiting conditions: a survey.

Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.