Palliative Rehabilitation in Patients with Cancer: Definitions, Structures, Processes and Outcomes.

PURPOSEOF REVIEW: This review examines the literature on palliative rehabilitation for patients with advanced cancer, focusing on definitions, structures, processes, and outcomes. RECENT FINDINGS: Palliative cancer rehabilitation targets comfort and functional improvement for patients with limited rehabilitation potential across various settings. The palliative cancer rehabilitation team, typically led by a physician, coordinates symptom management and referrals to rehabilitation and other allied healthcare professionals as needed. The outcomes of palliative cancer rehabilitation varied widely by goals, settings, and interventions. Studies in hospice settings generally reported improved symptom control; inpatient rehabilitation had mixed functional outcomes; and outpatient palliative rehabilitation may contribute to enhanced functional and symptom outcomes, especially among patients with higher baseline function. Palliative cancer rehabilitation emphasizes a collaborative approach that integrates palliative care with rehabilitation interventions, aiming to enhance quality of life and address diverse patient needs. Further research and standardization are necessary to realize its full potential.

Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): Feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care.

BACKGROUND: Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management. AIM: To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium). DESIGN: With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible. SETTING/PARTICIPANTS: In-patient admissions in three English hospices. RESULTS: Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%-28%; delirium risk assessment 0%-16%; screening on admission 7%-35%. CONCLUSIONS: Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.

Time estimates in prognostic discussions: A conversation analytic study of hospice multidisciplinary team meetings.

BACKGROUND: Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored. AIM: To explore how temporality is conveyed in relation to patients' prognoses during hospice multidisciplinary team meetings. DESIGN: Video-recordings of 24 hospice multidisciplinary team meetings were transcribed and analysed using Conversation Analysis. SETTING/PARTICIPANTS: A total of 65 staff participating in multidisciplinary team meetings in a UK hospice from May to December 2021. RESULTS: Team members conveyed temporality in three different ways. (i) Staff stated that a patient was dying as part of the patient's current health status. These formulations did not include a time reference per se but described the patient's current situation (as dying) instead. (ii) Staff used specific time period references where another specific reference had been provided previously that somehow constrained the timeframe. In these cases, the prognosis would conflict with other proposed care plans. (iii) Staff members used unspecific time period references where the reference appeared vague and there was greater uncertainty about when the patient was expected to die. CONCLUSIONS: Unspecific time period references are sufficient for achieving meaningful prognostic talk in multidisciplinary teams. In-depth discussion and accurate prediction of patient prognoses are not deemed a priority nor a necessity of these meetings. Providing precise predictions may be too difficult due to uncertainty and accountability. The lack of staff pursuing more specific time references implies shared knowledge between staff and a context-specific use of prognostic estimates.

'People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs.

BACKGROUND: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. AIM: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. DESIGN: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. SETTING/PARTICIPANTS: Twenty-two siblings (17-42 years old) were recruited via a children's hospice in England. RESULTS: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. CONCLUSIONS: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships.

'So being here is. . . I feel like I'm being a social worker again, at the hospice': Using interpretative phenomenological analysis to explore social workers' experiences of hospice work.

BACKGROUND: Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege). AIM: To explore UK hospice social workers' emotional experiences of work and how this influences their practice. DESIGN: Semi-structured interviews were conducted with hospice social workers. Interviews were transcribed and transcripts were analysed using Interpretative Phenomenological Analysis. SETTING/PARTICIPANTS: Eight social workers from different hospices in the UK. RESULTS: Five overlapping superordinate themes emerged: making a difference to clients and families ('the difference made'), the emotional impact of working in hospices ('dealing with people's emotions, and death, and dying, it's serious stuff'), the relational context of this type of work ('awareness of affinity to connect'), the ways in which coping is facilitated in hospices ('seen it coming') and a foundation theme, connection and disconnection to values ('(dis)connection to values'). CONCLUSIONS: The results offer an exploration of social workers' experiences of their work in hospices; how adept they were at coping and how they prepared for and made sense of the often emotionally-laden experiences encountered. Their experience of the rewards and meaning derived from their work offers important findings for clinical practice. Further research is suggested to explore a multitude of healthcare professionals' perspectives across country settings using Interpretative Phenomenological Analysis.

Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals.

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.

Oncology hospitalist impact on hospice utilization.

BACKGROUND: Unplanned hospitalizations among patients with advanced cancer are often sentinel events prompting goals of care discussions and hospice transitions. Late referrals to hospice, especially those at the end of life, are associated with decreased quality of life and higher total health care costs. Inpatient management of patients with solid tumor malignancies is increasingly shifting from oncologists to oncology hospitalists. However, little is known about the impact of oncology hospitalists on the timing of transition to hospice. OBJECTIVE: To compare hospice discharge rate and time to hospice discharge on an inpatient oncology service led by internal medicine-trained hospitalists and a service led by oncologists. METHODS: At Smilow Cancer Hospital, internal medicine-trained hospitalists were integrated into one of two inpatient medical oncology services allowing comparison between the new, hospitalist-led service (HS) and the traditional, oncologist-led service (TS). Discharges from July 26, 2021, through January 31, 2022, were identified from the electronic medical record. The odds ratio for discharge disposition by team was calculated by logistic regression using a multinomial distribution. Adjusted length of stay before discharge was assessed using multivariable linear regression. RESULTS: The HS discharged 47/400 (11.8%) patients to inpatient hospice, whereas the TS service discharged 18/313 (5.8%), yielding an adjusted odds ratio of 1.94 (95% CI, 1.07-3.51; p = .03). Adjusted average length of stay before inpatient hospice disposition was 6.83 days (95% CI, 4.22-11.06) for the HS and 16.29 days (95% CI, 7.73-34.29) for the TS (p = .003). CONCLUSIONS: Oncology hospitalists improve hospice utilization and time to inpatient hospice referral on an inpatient medical oncology service. PLAIN LANGUAGE SUMMARY: Patients with advanced cancer are often admitted to the hospital near the end of life. These patients generally have a poor chance of long-term survival and may prefer comfort-focused care with hospice. In this study, oncology hospitalists discharged a higher proportion of patients to inpatient hospice with less time spent in the hospital before discharge.

'It's tough. It is hard': A qualitative interview study of staff and volunteers caring for hospice in-patients with delirium.

BACKGROUND: Delirium is a distressing condition often experienced by hospice in-patients. Increased understanding of current multidisciplinary care of delirium is needed to develop interventions in this setting. AIM(S): To explore hospice staff and volunteers' practice, its influences and what may need to change to improve hospice delirium care. DESIGN: Qualitative interview study using behaviour change theory from a critical realist stance. SETTING/PARTICIPANTS: Thirty-seven staff, including different professional groups and roles, and volunteers were purposively sampled from two in-patient hospices. RESULTS: We found that participants' practice focus was on managing hyperactive symptoms of delirium, through medication use and non-pharmacological strategies. Delirium prevention, early recognition and hypoactive delirium received less attention. Our theoretically-informed analysis identified this focus was influenced by staff and volunteers' emotional responses to the distress associated with hyperactive symptoms of delirium as well as understanding of delirium prevention, recognition and care, which varied between staff groups. Non-pharmacological delirium management was supported by adequate staffing levels, supportive team working and a culture of person-centred and family-centred care, although behaviours that disrupted the calm hospice environment challenged this. CONCLUSIONS: Our findings can inform hospice-tailored behaviour change interventions that develop a shared team understanding and engage staff's emotional responses to improve delirium care. Reflective learning opportunities are needed that increase understanding of the potential to reduce patient distress through prevention and early recognition of delirium, as well as person-centred management. Organisational support for adequate, flexible staffing levels and supportive team working is required to support person-centred delirium care.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey.

BACKGROUND: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. AIM: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. DESIGN: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. SETTING/PARTICIPANTS: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. RESULTS: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. CONCLUSION: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Feasibility of RESTORE: An online Acceptance and Commitment Therapy intervention to improve palliative care staff wellbeing.

BACKGROUND: Acceptance and Commitment Therapy is a form of Cognitive Behavioural Therapy which uses behavioural psychology, values, acceptance and mindfulness techniques to improve mental health and wellbeing. Acceptance and Commitment Therapy is efficacious in treating stress, anxiety and depression in a broad range of settings including occupational contexts where emotional labour is high. This approach could help palliative care staff to manage work-related stress and promote wellbeing. AIM: To develop, and feasibility test, an online Acceptance and Commitment Therapy intervention to improve wellbeing of palliative care staff. DESIGN: A single-arm feasibility trial of an 8-week Acceptance and Commitment Therapy based intervention for staff, consisting of three online facilitated group workshops and five online individual self-directed learning modules. Data was collected via online questionnaire at four time-points and online focus groups at follow-up. SETTING/PARTICIPANTS: Participants were recruited from Marie Curie hospice and nursing services in Scotland. RESULTS: Twenty five staff commenced and 23 completed the intervention (93%). Fifteen participated in focus groups. Twelve (48%) completed questionnaires at follow-up. Participants found the intervention enjoyable, informative and beneficial. There was preliminary evidence for improvements in psychological flexibility (Cohen's d = 0.7) and mental wellbeing (Cohen's d = 0.49) between baseline and follow-up, but minimal change in perceived stress, burnout or compassion satisfaction. CONCLUSION: Online Acceptance and Commitment Therapy for wellbeing is acceptable to palliative care staff and feasible to implement using Microsoft Teams in a palliative care setting. Incorporating ways to promote long-term maintenance of behaviour changes, and strategies to optimise data collection at follow-up are key considerations for future intervention refinement and evaluation.

If not home, where? Implementing an innovative model of care as an alternative place of care & death for patients living in an area of high socio-economic deprivation. Short-report on opening a long-term palliative care unit.

BACKGROUND: Healthcare professionals and policy makers often view home as the most appropriate place of care and death for patients. However, this makes assumptions about what home is like and does not account for high levels of complexity experienced by patients from areas of high socioeconomic deprivation. Alternative models of care should be explored to provide equitable care for this patient group. AIMS: To describe the development of a new innovative model of care, a long-term palliative care unit. DESIGN: Description of the model, with secondary analysis of retrospective routinely gathered data. SETTING: Hartlepool in North-East England, includes some of the most socio-economically deprived areas in England, with associated high-levels of multimorbidity. In 2014, the eight-bedded hospice, opened an additional 10-bedded long-term unit. RESULTS: Within 7 years, 199 patients were admitted to the long-term unit. With 98% remained there until death. All patients were offered a full holistic assessment and advance care planning, with 24/7 access to specialist palliative care support. None were transferred to hospital. In general, patients from socio-economically deprived areas are less likely to access hospice care, however, 27% of all admissions to the long-term unit were from areas in the 10% most deprived in England (with 41% admitted from areas in the poorest quintile). CONCLUSION: We suggest that this model has been a valuable asset in providing an alternative place to home, enabling patients to receive high-quality care towards end of life. Further research is needed to hear directly from patients about their experiences.

Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review.

BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons. AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness. DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020. RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy. CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.

Description and Outcomes of an Innovative Concurrent Hospice-Dialysis Program.

BACKGROUND: Compared with the general Medicare population, patients with ESKD have worse quality metrics for end-of-life care, including a higher percentage experiencing hospitalizations and in-hospital deaths and a lower percentage referred to hospice. We developed a Concurrent Hospice and Dialysis Program in which patients may receive palliative dialysis alongside hospice services. The Program aims to improve access to quality end-of-life care and, ultimately, improve the experiences of patients, caregivers, and clinicians. OBJECTIVES: We sought to describe (1) the Program and (2) enrollment and utilization characteristics of Program participants. METHODS: We conducted a quantitative description of demographics, patient characteristics, and utilization of Program enrollees. RESULTS: Of 43 total enrollees, 44% received at least one dialysis treatment, whereas 56% received no dialysis. The median (range) hospice length of stay was 9 (1-76) days for all participants and 13 (4-76) days for those who received at least one dialysis treatment. The average number of dialysis treatments was 3.5 (range 1-9) for hemodialysis and 19.2 (range 3-65) for peritoneal dialysis. Sixty-five percent of enrollees died at home, 23% in inpatient hospice, and 12% in a nursing facility; no patients died in the hospital. CONCLUSIONS: Our 3-year experience with the Program demonstrated that enrollees had a longer median hospice stay than the previously reported 5-day median for patients with ESKD. Most patients received no further dialysis treatments despite the option to continue dialysis. Our experience provides evidence to support future work testing the effectiveness of such clinical programs to improve patient and utilization outcomes.

Adults above 65 years of intention to use homecare hospice and a study on the factors influencing the perception of hospice·palliative care service.

BACKGROUND: This study is a descriptive correlation survey conducted to understand the effect of attitudes toward death, hospice palliative care perception, and knowledge on homecare hospice use intention for adult men and women aged 65 or older ones. AIM: This study identified factors affecting the intention to use homecare hospice and the perception of hospice·palliative care for adults aged 65 or older. METHODS: Researchers used tools which were intention to use homecare hospice, the hospice palliative care knowledge, death orientation, hospice palliative perception. RESULTS: The higher the perception of hospice·palliative care, for men than women, then they are the higher the willingness to use homecare hospice. In addition, the factors influencing the perception of hospice·palliative care of subjects who are willing to use homecare hospice were education and hospice·palliative care knowledge. CONCLUSION: By improving hospice·palliative care perception by acquiring hospice·palliative care knowledge, people will choose the place where they want to die. In addition, once there is an increasing demand for it, nations and Institutions can help to set up support homecare hospice. For this, campaigns, and education to provide knowledge and improve perception of hospice·palliative care must be continued at the socio-cultural level.

Integrating the Various 'M' Principles of Management into the Establishment of a Palliative Care Service.

When it comes to medical caregiving, palliative care (PC) is a multidisciplinary strategy that has the goal of improving quality of life while also alleviating suffering. The doctrine of care for persons with life threatening or debilitating illnesses, as well as bereavement assistance for their families, is based on an organised, highly structured system of providing care to people with life-threatening or debilitating illnesses for the course of their lives. A coordinated continuum of care must be guaranteed throughout multiple healthcare settings, including the hospital, the patient's home, the hospice and long-term care institutions. It is essential for patients and clinicians to communicate and make decisions jointly. It is the goal of PC to provide pain relief and emotional and spiritual support to patients and the people who care for them. The best way to ensure the plan's success is to have an interdisciplinary multidimensional team of medical professionals, nurses, counsellors, social workers and volunteers coordinate it. Due to the alarming projections of cancer incidence over the next few years, a lack of hospices in developing countries, inadequate inclusion of PC, high out-of-pocket expenses for cancer treatment and the resulting financial burden on families, there is a critical need for PC and cancer hospices. To establish PC services, we stress the importance of the various M principles of management, which are divided into the following categories: Mission, Medium (setting), Men, Material including medications and Machines, Methods, Money and Management. These principles are discussed in greater detail later in this short communication. We believe that if we follow these principles, we will be able to establish PC services ranging from home-based care to the provision of care in tertiary care centres.

Discussing POLST-facilitated hospice care enrollment in patients with terminal cancer.

PURPOSE: A multicenter prospective study to evaluate the feasibility of Physician Orders for Life-Sustaining Treatment (POLST) in oncology practice was conducted between June and December 2017. Factors associated with POLST completion and follow-up outcomes were analyzed. METHODS: Patients with terminal cancer, aged ≥ 20 years and capable of communicating, were enrolled from seven hospitals. Demographic data were collected and updated in February 2021. Descriptive statistics and logistic regression analyses were conducted. RESULTS: Among 336 patients, 105 (31.3%) completed POLST, which was more common in male (p = 0.029), patients with better performance (p < 0.001), longer duration of follow-up (p = 0.037), and those living with children (p = 0.023). Male (odds ratio [OR], 2.30; 95% confidence interval [CI], 1.17-3.51; p = 0.012), having good performance status (OR, 2.38; 95% CI, (1.35-4.19); p = 0.003), transferred from other departments (OR, 0.50; 95% CI, (0.26-0.98); p = 0.045), and living with children (OR, 1.94; 95% CI, (1.11-3.47); p = 0.020) were significant predictors of POLST completion. Patients who completed POLST were more likely to enroll in hospice care (p = 0.012) or experience out-of-hospital death (p = 0.016) at end-of-life (EOL). POLST completion showed a strong association with hospice enrollment at EOL (OR, 2.61; 95% CI, (1.08-6.32); p = 0.033). CONCLUSION: Gender, patient performance, timing of POLST discussion, and type of household were associated with POLST completion. Earlier discussions on POLST could reinforce hospice enrollment or non-aggressive EOL care.

Development of a research-based classification of approaches to paediatric palliative medicine service provision within children's and young adults' hospices: A mixed methods study.

BACKGROUND: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. AIM: To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK. DESIGN: A mixed methods study conducted by telephone interview. SETTING/PARTICIPANTS: Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations. RESULTS: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. CONCLUSIONS: Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions.

Nurse perspectives on the psychosocial care of patients with urinary incontinence in home hospice: A qualitative study.

BACKGROUND: Urinary incontinence is prevalent among patients receiving home hospice and presents multiple care management challenges for nurses and family caregivers. AIM: This study sought to understand how urinary incontinence influences the psychosocial care of patients receiving home hospice and the strategies that nurses employ to maximize patient and family comfort. DESIGN: Qualitative descriptive study using semi-structured interviews. SETTING/PARTICIPANTS: Nurses employed at a large not-for-profit hospice agency in New York City. RESULTS: Analyses of 32 interviews revealed three primary themes. First, nurses considered urinary incontinence to be associated with multiple psychosocial issues including embarrassment for patients and caregiver burden. Second, nurses described urinary incontinence as a threat to patient dignity and took steps to preserve their continence function. Third, nurses assisted patients and their families to cope with urinary incontinence through normalization, reframing incontinence as part of the disease process, mobilizing caregiving assistance, and encouraging use of continence supplies such as diapers and liners. CONCLUSION: Urinary incontinence influences the psychosocial care of patients receiving home hospice and nurses employ strategies to maximize patient and family comfort. Additional research is needed to examine the psychosocial benefits of facilitated discussions with patients and family members about incontinence, provision of caregiving support, and distribution of comprehensive incontinence supplies to patients with fewer resources.

The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis.

BACKGROUND: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. AIM: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. DESIGN: Interpretative phenomenological analysis, with data collected through semi-structured interviews. SETTING/PARTICIPANTS: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. RESULTS: Volunteers (n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it's where I'm meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients' fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. CONCLUSIONS: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers.

Engagement of specialized palliative care services with the general public: A population-level survey in three European countries.

BACKGROUND: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. AIM: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. DESIGN, SETTING, PARTICIPANTS: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. RESULTS: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%-90%) compared to Belgian (31%-71%) and Swedish services (19%-38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. CONCLUSION: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.