In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.

Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.

A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.

This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.

Research participants” feedback about their participation experiences offers critical insights for improving programs. A shared Empowering the Participant Voice (EPV) infrastructure enabled a multiorganization collaborative to collect, analyze, and act on participants’ feedback using validated participant-centered measures.

A consortium of academic research organizations with Clinical and Translational Science Awards (CTSA) programs administered the Research Participant Perception Survey (RPPS) to active or recent research participants. Local response data also aggregated into a Consortium database, facilitating analysis of feedback overall and for subgroups.

From February 2022 to June 2024, participating organizations sent surveys to 28,096 participants and received 5045 responses (18%). Respondents were 60% female, 80% White, 13% Black, 2% Asian, and 6% Latino/x. Most respondents (85–95%) felt respected and listened to by study staff; 68% gave their overall experience the top rating. Only 60% felt fully prepared by the consent process. Consent, feeling valued, language assistance, age, study demands, and other factors were significantly associated with overall experience ratings. 63% of participants said that receiving a summary of the study results would be very important to joining a future study. Intersite scores differed significantly for some measures; initiatives piloted in response to local findings raised experience scores.

RPPS results from 5045 participants from seven CTSAs provide a valuable evidence base for evaluating participants’ research experiences and using participant feedback to improve research programs. Analyses revealed opportunities for improving research practices. Sites piloting local change initiatives based on RPPS findings demonstrated measurable positive impact.

Mandated by the Affordable Care Act of 2010, hospices were required to provide information regarding the Hospice Quality Reporting Program, with a reduced reimbursement tied to hospices if they fail to submit data to the Centers for Medicare and Medicaid Services. The purpose of this study was to examine the association between hospice organizational and community factors and quality of hospice care as measured by patient experience through Hospice Consumer Assessment of Healthcare Providers & Systems (CAHPS®) survey.

We used secondary data from Hospice Compare, Healthcare Cost Report Information System Dataset, Rural–urban commuting area codes, and the American Community Survey to examine the relationship between hospice patient/family experience and hospice organizational-level and community-level factors for the period 2017–2020. The unit of analysis was hospice-year observations.

For-profit and chain-affiliated hospices were negatively associated with CAHPS® scores. Organizational longevity and Medicare payer mix were positively associated with CAHPS® scores. Hospice community factors including competition, per capita income, and the racial/ethnic minorities’ percentage were negatively associated with CAHPS® scores.

Hospice organizational and community factors were related to hospice quality of care. Interventions that account for organizational and community factors may be needed to improve patient/family experience of hospice care.

Chaplains provide spiritual care in a variety of settings and are an important part of palliative and supportive care teams. This study aims to describe chaplain interactions from the perspective of the recipients of care.

The study draws on data from a nationally representative survey conducted by the Gallup Organization in March 2022.

Two main groups of recipients were identified: primary recipients and visitors/caregivers. Current typologies of chaplain activities focus on primary recipients of care, but a similar proportion of chaplain interactions takes place with visitors/caregivers. Bivariate analysis was used to compare the experiences of the chaplains’ primary recipients of care to other recipients of care and the experiences of visitors/caregivers to other recipients of care. Primary recipients of care were significantly more likely to have religious interactions with the chaplain and to experience the interactions as valuable and helpful.

This study is the first to show the groups of people – primary recipients and visitors/caregivers – who receive care from chaplains. It demonstrates how care recipients experience care differently from chaplains based on their position, which has important implications for spiritual care practice.

Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors’ engagement with survivorship care.

We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12.

We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care.

Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors’ anxieties about their future health.

Therapeutic radiographers are the first point of contact for cancer patients undergoing radiotherapy treatment and therefore have an important role in providing both physical and psychosocial support to these patients. This study aimed to evaluate therapeutic radiographers’ perception about their role in identifying and providing psychosocial support for patients receiving RT treatment.

The study used a cross-sectional, prospective research design. A self-designed questionnaire was distributed to all therapeutic radiographers (n = 26) working at a radiotherapy department in Malta.

A total of 21 therapeutic radiographers completed the questionnaire. All participants felt that the provision of psychological care was an important part of their role as therapeutic radiographers. The majority of the participants reported having the most confidence in giving treatment-related symptoms advice rather than psychological support. The most common barrier to providing psychological support was lack of training (95·2%), followed by the lack of an appropriate screening tool (85·7%), availability of private space to talk to patients (76·2%) and a lack of knowledge (61·9%).

While most therapeutic radiographers believed that providing psychosocial support was an important aspect of their role, several barriers prevented them from fulfilling this role. Training, the introduction of a psychosocial screening tool and clear referral processes are recommended to improve radiotherapy service.

The magnetic resonance linear accelerator system (MR Linac) is a novel piece of radiotherapy (RT) equipment allowing the routine application of daily MR-guided treatment adaptation. The hardware design required for such technical capabilities and the increased complexity of the treatment workflow entails a notable departure from cone beam computed tomography (CBCT)-based RT. Patient tolerability of treatment is paramount to RT practice where high compliance is required. Presented is a comparative analysis of how such modality specific characteristics may ultimately impact the patient experience of treatment.

Forty patients undergoing RT for prostate cancer (PCa) on either the MR Linac (n = 20) or a CBCT-based linac (n = 20) were provided with a validated patient reported outcomes measures (PROM’s) questionnaire at fraction 1 and fraction 20. The 18-item questionnaire provided patient responses recorded using a 4-point Likert scale, 0 denoting a response of ‘Not at all’, 1 ‘Slightly’, 2 ‘Moderately’ and 3 signifying ‘Very’. The analysis provided insight into both comparisons between modalities at singular time points (fractions 1 and 20), as well as a temporal analysis within a single modality, denoting changing patient experience.

Patients generally found the MR Linac treatment couch more comfortable, however, found the increase in treatment duration harder to tolerate. Responses for all items remained stable between first and last fraction across both cohorts, indicating minimal temporal variation within a single modality. None of the responses were statistically significant at the 0·01 level.

Whether radiotherapy for PCa is delivered on a CBCT linac or the MR Linac, there is little difference in patient experience with minimal experiential variation within a single modality.

To explore the extent to which national policy in end-of-life care (EOLC) in England influences and guides local practice, helping to ensure that care for older people at the EOL is of a consistently good quality.

Whilst policy is recognised as an important component in determining the effectiveness of EOLC, there is scant literature which attempts to interrogate how this happens or to hypothesise the mechanisms linking policy to better outcomes.

This article reports on the second phase of a realist evaluation comprising three case studies of clinical commissioning groups, including 98 in-depth interviews with stakeholders, meeting observation and documentary analysis.

This study reveals the key contextual factors which need to be in place at micro, meso and macro levels if good quality EOLC for older people is to be achieved. The findings provide insight into rising local inequalities and reveal areas of dissonance between stakeholder priorities. Whilst patients privilege the importance of receiving care and compassion in familiar surroundings at EOL, there remains a clear tension between this and the medical drive to cure disease and extend life. The apparent devaluing of social care and subsequent lack of resource has impacted significantly on the way in which dying is experienced.

Patient experience at EOL, shaped by the care received both formally and informally, is driven by a fragmented health and social care system. Whilst the importance of system integration appears to have been recognised, significant challenges remain in terms of shaping policy to adequately reflect this. This study highlights the priority attached by patients and their families to the social and relational aspect of death and dying and shines a light on the stark disparities between the health and social care systems which became even more evident at the height of the Covid-19 pandemic.

1. (1) To understand the service models and methods of implementing and delivering one CCBT programme (BTB) in routine care;

2. (2) To learn about user experiences of accessing and using BTB; and

3. (3) To learn about the implications and factors that might have influenced uptake and understand the implications.

The patient experience of radiotherapy magnetic resonance (MR) simulation is unknown. This study aims to evaluate the patient experience of MR simulation in comparison to computed tomography (CT) simulation, identifying the quality of patient experience and pathway changes which could improve patient experience outcomes.

MR simulation was acquired for 46 anal and rectal cancer patients. Patient experience questionnaires were provided directly after MR simulation. Questionnaire responses were assessed after 33 patients (cohort one). Changes to the scanning pathway were identified and implemented. The impact of changes was assessed by cohort two (13 patients).

Response rates were 85% (cohort one) and 54% (cohort two). 75% of cohort one respondents found the magnetic resonance imaging (MRI) experience to be better or similar to their CT experience. Implemented changes included routine use of blankets, earplugs and headphones, music and feet-first positioning and further MRI protocol optimisation. All cohort two respondents found the MRI experience to be better or similar to the CT experience.

MR simulation can be a comfortable and positive experience that is comparable to that of standard radiotherapy CT simulation. Special attention is required due to the fundamental differences between CT and MRI scanning.