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Background/AimsLittle is known about how current UK policy for end-of-life care planning fits with the social, cultural and religious values and beliefs of ethnic minority communities. This study aimed to explore the perspectives of patients and family caregivers from ethnically diverse backgrounds, as well as the views of health professionals, regarding end-of-life care planning, including discussions about cardiopulmonary resuscitation.MethodsA qualitative study was conducted, including comparative thematic and cross-case analysis from 18 longitudinal patient case studies and 19 interviews with bereaved family members. A total of 112 interviews were conducted across patients, family caregivers and health professionals. Topics included experiences of talking about illness, discussions about choices and decisions about future care, such as cardiopulmonary resuscitation decision making.ResultsHealth professionals sought to identify when patients were ‘ready’ for end-of-life care discussions before initiating these conversations. However, little clarity was given around the characteristics that constituted this readiness by any of the health professionals. Issues around translation, such as mistranslation, confidentiality issues with external translators and the potential for family caregivers to misconstrue information in translation were also highlighted. Religious and cultural beliefs played significant roles in patients' do not attempt cardiopulmonary resuscitation decisions, with anxieties around whether the system adequately valued these beliefs.ConclusionsHealth professionals played a significant role in seeking an agreement on do not attempt cardiopulmonary resuscitation. Participants' accounts of the discussions highlight the importance of insightful professional recognition of ‘readiness’ to broach the topic, as well as a good knowledge of family dynamics. It also raises concerns about the risk of the patient's voice being unduly influenced by health professionals and/or family caregivers, especially in cases where an interpreter is required to mediate communication.

Evidence suggests that discussing resuscitation with patients and relatives from ethnic minority groups is problematic for healthcare professionals (HCPs), but there is limited evidence exploring these issues or offering guidance for HCPs in navigating these challenging discussions. This study explores the barriers and enablers to HCPs discussing deterioration and resuscitation decisions with patients and families from ethnic minority groups.

Aims and methodThe Transitions of Care from Child and Adolescent Mental Health Services to Adult Mental Health Services (TRACK) study was a multistage, multicentre study of adolescents' transitions between child and adult mental health services undertaken in England. We conducted a secondary analysis of the TRACK study data to investigate healthcare provision for young people (n= 64) with ongoing mental health needs, who were not transferred from child and adolescent mental health services (CAMHS) to adult mental health services mental health services (AMHS).ResultsThe most common outcomes were discharge to a general practitioner (GP; n=29) and ongoing care with CAMHS (n= 13), with little indication of use of third-sector organisations. Most of these young people had emotional/neurotic disorders (n= 31, 48.4%) and neurodevelopmental disorders (n= 15, 23.4%).Clinical implicationsGPs and CAMHS are left with the responsibility for the continuing care of young people for whom no adult mental health service could be identified. GPs may not be able to offer the skilled ongoing care that these young people need. Equally, the inability to move them decreases the capacity of CAMHS to respond to new referrals and may leave some young people with only minimal support.

Aims and methodThe Transitions of Care from Child and Adolescent Mental Health Services to Adult Mental Health Services (TRACK) study was a multistage, multicentre study of adolescents' transitions between child and adult mental health services undertaken in England. We conducted a secondary analysis of the TRACK study data to investigate healthcare provision for young people (n= 64) with ongoing mental health needs, who were not transferred from child and adolescent mental health services (CAMHS) to adult mental health services mental health services (AMHS).ResultsThe most common outcomes were discharge to a general practitioner (GP; n= 29) and ongoing care with CAMHS (n= 13), with little indication of use of third-sector organisations. Most of these young people had emotional/neurotic disorders (n= 31, 48.4%) and neurodevelopmental disorders (n= 15, 23.4%).Clinical implicationsGPs and CAMHS are left with the responsibility for the continuing care of young people for whom no adult mental health service could be identified. GPs may not be able to offer the skilled ongoing care that these young people need. Equally, the inability to move them decreases the capacity of CAMHS to respond to new referrals and may leave some young people with only minimal support.

Background:The need for pre-bereavement support for children facing the death of a parent is well recognised but how this is done by hospice ward nurses in practice is not well known.Method:To explore the experiences of hospice ward nurses' identification of the support needs of children under 18 years old facing the death of a parent, and the impact on hospice nurses when involved in providing this support.Design:Semi-structured individual interviews with hospice nurses working on a single UK inpatient unit were audio-taped and analysed using thematic analysis to produce themes and subthemes.Results:Nurses were highly reflective, discussing their personal experiences, and identified potential enablers and barriers to providing support. Child and family factors were identified as influencing identification of support needs.Conclusion:Multiple factors influencing provision of support emerged. Formal training and readily available resources would support hospice nurses working with children.

BackgroundAdvance care planning (ACP) supports people who are seriously ill to be cared for in the way, and in the place that they prefer. However, evidence suggests there are lower levels of ACP in people from Black, Asian and Minority Ethnic (BAME) communities. BAME groups are also more likely to desire invasive medical interventions, regardless of prognosis and impact on quality of life. Little is known about how the model of resuscitation decision-making fits with the social, cultural and religious values and beliefs of BAME groups. Evidence also suggests that health care professionals (HCPs) report a lack of confidence in having culturally appropriate discussions with BAME patients and their families. Equipping professionals to be more confident about such ACP discussions with BAME patients may lead to achieving patient preferences.AimsWith a focus on making decisions about resuscitation, this study explores professional views and experiences of ACP with patients from BAME backgrounds. It aims to identify barriers and enablers and person-centred outcomes to such discussions and provide evidence for training professionals.MethodsThematic analysis of qualitative semi-structured interviews with HCPs across primary, secondary and tertiary care in Leicester, including GPs, hospital doctors and nurses.ResultsThere was an emphasis on the significance of building rapport, the timing of discussions and navigating communication barriers. Barriers to decision-making included: patients’ and their families understanding of both prognosis and resuscitation; and differing values amongst generations of migrants. Professionals struggled with how to find a balance between acting in a non-discriminatory way whilst respecting cultural differences. Most HCPs highlight the need for further training and/or support.ConclusionThere are significant barriers for HCPs when discussing resuscitation decisions with people from BAME communities. This increases the complexity of navigating ACP and achieving patients’ preferences. HCPs would benefit from further training and support.

AimsThis study explored the thoughts and feelings of hospice nurses regarding Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) discussions and the potential extension of their role in this including formal documentation of the outcome of that discussion by signing the DNACPR form.MethodsEight semi-structured interviews were carried out with senior hospice inpatient and day therapy nurses. Interpretive phenomenological analysis was used to explore the shared lived meaning of this phenomenon.ResultsFour themes emerged:1. Current practice around hospice nurses2. How proposed changes to practice may enhance patient experience3. The benefits to hospice nurses4. The challenges of this change in role.Participants appeared confident with the concept of nurses discussing and documenting DNACPR decisions. They could envisage that seamless advance care planning would enhance patient care, and that nurses’ rapport with patients made them best placed to have these conversations. Hospice nurses reported numerous potential barriers to extending their role including: impact on peer relationships and relationships with doctors; anxiety about having DNACPR discussions with some evidence of censoring of conversations and selection of which ones they would engage with; anxiety about the responsibility for such decisions if the patient changed place of care. Although participants did not perceive stable or prolonged illness trajectories as a barrier for discussing DNACPR, they did consider a patient’s uncertainty about the prognosis to be a barrier.ConclusionHospice nurses exhibited cognitive dissonance; they had discord between knowing what good practice was and completing it in action. They appeared to value ‘niceness’ over honesty and their censoring of conversations resonates with communication awareness theories.

BackgroundAdvance care planning (ACP) supports people who are seriously ill to be cared for in the way, and in the place that they prefer. Yet, evidence suggests there are lower levels of ACP in people from Black, Asian and Minority Ethnic (BAME) communities. Little is known about how the model of resuscitation decision-making fits with the social, cultural and religious values and beliefs of BAME groups. Health care professionals (HCPs) also report a lack of confidence in having culturally appropriate discussions with BAME patients and their families. Equipping professionals to be more confident about such ACP discussions may lead to achieving patient preferences.AimsThis study explores professional views and experiences of ACP with patients from BAME backgrounds. With a focus on making decisions about resuscitation, it aims to identify barriers and enablers and person-centred outcomes to such discussions and provide evidence for training professionals.MethodsThematic analysis of qualitative semi-structured interviews with HCPs across primary, secondary and tertiary care in Leicester, including GPs, hospital doctors and nurses.ResultsThere was an emphasis on building rapport, the timing of discussions and navigating communication barriers. Barriers to decision-making included: patients‘ and their families understanding of both prognosis and resuscitation; and differing values amongst generations of migrants. Professionals struggled with how to find a balance between acting in a non-discriminatory way whilst respecting cultural differences. Patients and family members, who wished to prolong life at all costs, commonly framed religiously as the sanctity of life, was described as a key challenge to discussions. Most HCPs highlight the need for further training and/or support. ConclusionThere are significant barriers for HCPs when discussing resuscitation decisions with people from BAME communities. This increases the complexity of navigating ACP and achieving patients‘ preferences. HCPs would benefit from further training and support.

BackgroundPatients with advanced illness who are at risk of deteriorating and dying are ipso facto at risk of their heart stopping. The law with regards to involvement of patients and relatives in discussions about resuscitation is clear and mirrored in National Guidance. However there is very little evidence about public and user views about such discussions and decisions.This study aimed to explore the views of public participants with a focus on those from minority ethnic backgrounds.MethodMembers of the public were approached through a number of strategies including adverts in hospice shops, local radio, approach to cancer support groups and community organisations. Q methodology was used to reveal key viewpoints and to understand those viewpoints holistically.Participants attended a workshop where resuscitation was explained together with the likely benefits and harms in advanced illness. Participants then completed a structured ranking (Q sort) of statements about resuscitation to best reflect their views. The 49 statements had been developed with reference to the literature, expert advisors, interviews with professionals and with PPI volunteers. A brief interview was conducted with each participant after their ranking of statements to further explore their views.Results38 people with diverse socio-cultural demographics attended 9 workshops. Some participants required one to one verbal translation of materials. Analysis of the Q sorts identified four viewpoints summarised as foregrounding: self-actualisation: ambivalent perspectives; fear of dying; and family as decision makers.ConclusionWorkshops about resuscitation decisions in advanced illness were welcomed. Q method can help describe the public viewpoints about resuscitation and the related discussions and decisions in advanced illness. In turn this information about the way a patient perceives the issues may help professionals best support patients in discussions about their end of life care.

BackgroundImproving Advance Care Planning (ACP) and increasing its equitable access is a key UK government strategy. Evidence (mainly from the USA) suggests that there are lower levels of ACP in people from Black, Asian and Minority Ethnic (BAME) communities. People from some BAME groups also seem to be more likely to desire invasive medical interventions, regardless of prognosis and impact on quality of life. The beliefs, values and needs of BAME communities in the UK have not been explored to see if the UK model of decision making around resuscitation ‘fits’ for them. Also, healthcare professionals (HCPs) report that they do not feel confident in providing culturally appropriate care for BAME patients and families in this situation.AimsTo identify barriers and enablers to HCPs discussing deterioration and resuscitation with patients and families from BAME communities, and to identify associated HCP training needs.MethodsQualitative semi structured interviews with 30 HCPs.ResultsHCPs’ interviews identify key barriers and facilitators of resuscitation discussions including differing attitudes towards death; differing values amongst different generations of migrants; and the need to find a balance between the desire to act in a non-discriminatory way whilst respecting cultural differences. Analysis of interviews informed a set of statements regarding decision making about resuscitation, which are being used as part of a ranking exercise (using Q methodology) with members of the public.ConclusionThere are significant barriers for HCPs when discussing resuscitation decisions with people from BAME communities. This increases the complexity of navigating ACP and achieving patients‘ preferences.Years working in palliative medicineNumber of timesmanaged TAConfidence in recognising TAConfidence in using midazolamConfidence in using haloperidolConfidence in using levomepromazineConfidence in using phenobarbitalOverall confidence in managing TA6.5>2081010101105>2089580831>209909093>20810810762>201099909bank0–5222112<110–206857162.5>201010101011018>2099991930>20101010101108>20677707