Briony F Hudson

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

BackgroundPeople 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.MethodsSystematic 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.ResultsThirteen 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.ConclusionsThe 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.

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 discussing palliative care with people experiencing homelessness: a qualitative study

Objectives To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care Setting Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. Participants People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). Methods In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. Results 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. Conclusions This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.

Evaluation of training on palliative care for staff working within a homeless hostel

BACKGROUND In the UK, many people experiencing homelessness whose health is deteriorating remain in homeless hostels due to few suitable alternative places of care. Hostel staff struggle to support residents with deteriorating health and palliative care services are rarely involved. There is recognition of the need for multiagency working to support this group. OBJECTIVES To pilot and evaluate the impact of a two-day training course for hostel staff around supporting clients with palliative care needs, and increasing multiagency working. DESIGN Mixed methods evaluation using pre-and-post training data collection. SETTINGS AND PARTICIPANTS Frontline staff from two London homeless hostels. METHODS Staff from two hostels attended a two day training course. Self-perceived confidence in supporting residents with deteriorating health, knowledge of palliative care, openness to discussing deteriorating health and work related stress were assessed at baseline and immediately after training using a novel questionnaire. Qualitative data was collected via focus groups immediately after and three months post-training. RESULTS Twenty four participants attended at least one day of training, 21 (87%) completed the course. Training was reported to be useful and relevant. Modest improvements in self-perceived work related stress, knowledge, confidence and openness were observed following training. At three months, qualitative data indicated the beginnings of a shift in how palliative care was conceptualised and an increase in knowledge and confidence around supporting residents. Anxiety regarding the role of the hostel in palliative care, the recovery focused ethos of homelessness services and fragmented systems and services presented challenges to establishing changes. CONCLUSIONS Training can be useful for improving knowledge, confidence, openness and work related stress. Recommendations for implementing changes in how people experiencing homelessness are supported include embedding training into routine practice, promoting multidisciplinary working, incorporating flexibility within the recovery focused approach of services and recognising the need for emotional support for staff.

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.

25 Evidence based training for hostel staff around supporting homeless people with deteriorating health

Introduction Many people experiencing homelessness remain in homeless hostels as their health deteriorates due to lack of alternative places of care (Shulman et al. 2017). Palliative care services are rarely involved and hostel staff face significant emotional and practical difficulties (Hudson et al. 2017). We developed evidence-based training for hostel staff around supporting residents with deteriorating health. Aims To pilot and evaluate the impact of training. Methods Mixed methods pre-and-post training evaluation. Knowledge of palliative care confidence in and openness to supporting residents with deteriorating health and work-related stress were assessed at baseline and immediately post-training using a novel questionnaire. Following training group discussions were facilitated and participants identified team goals for implementation. Additional focus groups were held after three months. Results All staff from two hostels attended 87% completed the course (n=21). Modest improvements in knowledge confidence openness and work-related stress were observed. Participants particularly valued the inclusion of strategies for identifying and addressing their emotional needs. At three months team goals were partially met. Identification and recognition of palliative care needs had improved. However the recovery focused ethos of hostels and significant staff turnover limited change. Systems designed to monitor ‘recovery’ did not accommodate or encourage a person-centred approach for people with deteriorating health. Conclusions Training in isolation is not enough for system change. Recommendations include embedding ongoing training into routine practice identifying champions to promote multidisciplinary working and incorporating flexibility in outcome measures to reflect complexity in person-centred care including where recovery may not be realistic. References . Hudson BF, Shulman C, Low J, Hewett N, Daley J, Davis S, Brophy N, Howard D, Vivat B, Kennedy P, Stone P. Challenges to discussing palliative care with people who are homeless: A qualitative study. BMJ Open2017;7:e017502. doi:10.1136/bmjopen-2017-017502 . Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, et al. Homelessness at the end of life: A qualitative analysis of the barriers in providing palliative care for people who are homeless. Palliative Medicine2017. https://doi.org/10.1177/0269216317717101

23 Talking about the future with homeless people with ill health: the need for a different conversation

Introduction Homelessness is associated with death at a young age, frequently related to physical and mental health problems complicated by drug or alcohol dependence (Stringfellow et al., 2015). Homeless people experience high symptom burden at the end-of-life (Tobey et al., 2016), yet access to palliative care services is limited (Shulman et al., In press). Conversations around future wishes and preferences with homeless people rarely take place. Aim To explore the barriers to conversations about the future with unwell homeless people and alternative approaches to these difficult conversations. Methods Focus groups and interviews were used to explore views and experiences around palliative care with currently and formerly homeless people (n=38), healthcare professionals (n=32), hostel and outreach staff (n=39) and drug and alcohol workers (n=4), from three London boroughs. Verbatim transcripts were analysed using thematic analysis. Results Three themes were identified relating to the challenges of discussing future care preferences: the recovery focused nature of services; uncertainty around when and how to have conversations; fear of negative impact on the homeless person and staff. Conclusions There is little acknowledgement, discussion or planning around the health needs of unwell homeless people who are at risk of dying, reducing opportunities for person-centred care. An approach that considers current and continuing care needs that accommodates potential improvements and deterioration is needed. Identifying those whose health is a concern, rather than those thought to be imminently dying may help to ensure the wishes and choices of homeless people are respected, if their health deteriorates. References . Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, Davis S, Brophy N, Howard D, Vivat B, Stone P, (In press). Homelessness at the end of life: A qualitative analysis of the barriers in providing palliative care for people who are homeless. Palliative Medicine. . Stringfellow EJ, Kim TW, Pollio DE, Kertesz SG. Primary care provider experience and social support among homeless-experienced persons with tri-morbidity. Addiction science & clinical practice2015;10:A64–A64. . Tobey M, Manasson J, Decarlo K, Ciraldo-maryniuk K, Gaeta JM, Wilson E. Homeless Individuals Approaching the End of Life: Symptoms and Attitudes. Journal of Pain and Symptom Management2016; In press.