Background There is increasing emphasis on ensuring that access to healthcare is equitable in the UK, yet on-going evidence demonstrates that minority ethnic communities are underrepresented in accessing palliative care. A Marie Curie Hospice in Wales initiated a funded outreach project with a keyworker post to engage minority ethnic communities, aiming to improve access to palliative care services. Methods The study aim is to evaluate the outreach project and keyworker post. A longitudinal evaluation of the initiative is being undertaken, encompassing interviews with hospice and community healthcare professionals, minority ethnic communities and the project keyworker. Key project documents, such as reports, and hospice ethnicity data are also being analysed. This presentation reports on data from semi-structured interviews with hospice staff and keyworker, and analysis of project reports. Relevant ethical and governance approvals were obtained. Results Hospice healthcare professionals highlighted challenges when providing palliative care to individuals from minority ethnic communities, particularly language barriers. Minority ethnic communities in South Wales appeared uninformed about local palliative care services and the keyworker implemented a range of initiatives to raise awareness and widen hospice referral routes. Additionally, the keyworker supported healthcare professionals when caring for people from minority ethnic communities, for example meeting religious needs at the end-of-life. Looking ahead, hospice staff are keen to increase their understanding of different ethnic groups and cultures, while the keyworker hopes to work with community healthcare teams to improve referral rates to the hospice. Conclusions and application The evaluation has demonstrated the progress made by the keyworker to engage minority ethnic communities and support hospice staff to holistically care for people from different ethnic groups. The keyworker role appears, at this early stage in the project, to be an excellent way of engaging minority ethnic communities and improving access to palliative care services.
There is an increasing need to measure treatment-related side effects in normal tissues following cancer therapy. The ALERT-B (Assessment of Late Effects of RadioTherapy - Bowel) questionnaire is a screening tool that is composed of four items related specifically to bowel symptoms. Those patients that respond with a "yes" to any of these items are referred on to gastroenterologist in order to improve the long-term consequences of these side effects of radiological treatment. Here we wish to test the ability of this questionnaire to identify these subsequent gastroenterological complications by tracking prostate cancer patients that were positive with respect to ALERT-B. We also carry out receiver-operator curve (ROC) analysis for baseline data for an overall ALERT-B questionnaire score with respect to subscale data for the Gastrointestinal Symptom Rating Scale (GSRS) and the Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire. 84.4% and 95.7% of patients identified by the ALERT-B questionnaire demonstrated complications diagnosed at 6 and 12 months post-treatment, respectively. ROC curve analysis of baseline data showed that ALERT-B detected clinically relevant levels of side effects established at baseline by the GSRS diarrhoea subscale (AUC = 0.867, 95% CI = 0.795 to 0.926) and at the minimally important level of side effects for the EPIC bowel subscale (AUC = 0.765, 95% CI = 0.617 to 0.913). These results show that ALERT-B provides a simple and effective screening tool for identifying gastroenterological complications after treatment for prostate cancer.
Despite level 1 evidence supporting the use of low-molecular weight heparin thromboprophylaxis in hospitalised cancer patients, only 7% of specialist palliative care units (SCPU) have thromboprophylaxis guidelines. The reasons for this are unclear. To explore specialist palliative care units (SPCU) directors' views on thromboprophylaxis in the inpatient unit, audiotaped semi-structured interviews were conducted with SCPU medical directors to explore factors influencing thromboprophylaxis practice. Purposive sampling of units known not to have thromboprophylaxis guidelines was conducted (as identified from previous research). The hospice directory was used to sample from units in each region of Great Britain and Ireland to ensure representation across the specialty. Interviews were transcribed and analysed using interpretative phenomenological analysis (IPA). Four major and four sub themes were identified. Participants were progressive in their attitudes to palliative care and comfortable with instigating active interventions for patient benefit. Symptomatic venous thromboembolism (VTE) was rarely seen and therefore not considered important enough to warrant guidelines. There was concern that evidence informing thromboprophylaxis guidelines in the general population was not transferable to the advanced cancer population and that the outcome measures from these studies were less meaningful to a palliative care patient. Thromboprophylaxis was considered a life prolonging intervention which may result in a poorer death than one because of VTE. Nevertheless, participants were receptive to change if presented with convincing evidence derived from a representative population. Until the true prevalence and symptomatic burden of VTE is known, the role of thromboprophylaxis in the SPCU setting will remain controversial. There is a need for a well-designed study to explore the utility of thromboprophylaxis in the palliative care inpatient setting. However, this will require meaningful outcome measures to be used within a clinically applicable population.
Abstract Speech and language therapists (SLTs) are experts in the management of swallowing and communication disorders. Although there is increasing recognition of SLTs in palliative care, evidence specifically supporting their role with primary malignant gliomas (PMG) patients is lacking, despite the prevalence of swallowing and communication difficulties in this non-curable disease. This study aimed to explore the contribution of SLT to PMG, as perceived by SLTs themselves and by members of the regional neuro-oncology multidisciplinary team (MDT). Following ethical approval, semi-structured one-to-one interviews were conducted with ten SLTs working with PMG in outpatients and community settings across South East Wales. In addition, five members of the regional neuro-oncology MDT were interviewed. Thematic analysis was used to analyse the data and to identify and pinpoint salient themes. The findings indicate that despite lack of professional guidance and previous evidence, SLTs provided evidence to suggest that they contribute beyond swallowing and communication management, to areas such as shared decision-making, key-working, patient advocacy, advanced care planning and support for psychological wellbeing. However, these extended roles are inconsistently recognised by the MDT. Five barriers were identified which hampered SLT contributions: a perceived identity crisis affecting PMG patients, lack of confidence from SLTs, inconsistent MDT integration, reduced resources and strategic direction. The study suggests that SLTs need to promote and educate the MDT in order to achieve routine integration and enhance patient-centred and holistic care. The profession may also benefit from capturing the value of their involvement with PMG to drive service developments.
Millions became bereaved during the pandemic, with many facing challenges accessing support.
Aims
To describe the use and helpfulness of different types of support in a cohort of people bereaved during the pandemic in the UK.
Methods
A longitudinal survey of people bereaved during the pandemic over four time points. At 7- and 13-months post-bereavement (T2 and T3), participants rated the helpfulness of support used and described how they had been helped by this support.
Results
420 participants completed at least one follow-up survey (T2, T3 or both). Most respondents were female (88.3%) and had lost a parent (57.6%) or partner (24.3%), with 3.3% from a minoritised ethnic background. Support from family and friends, reported by 89.3% of participants, was rated as 'quite helpful' (mean rating 4.3 out of 5), and included help with practical tasks, expressing feelings/sharing grief, remembering, feeling cared for and less isolated. The most commonly used form of other support was 1:1 support (e.g. counselling), used by 40.5% of participants, with an average helpfulness rating of 4.1, helping participants feel listened to and process their grief. Online community support, used by 31.0% of participants, was also rated 'quite helpful' (3.9), enabling sharing with similar others, feeling understood and less alone. Informal and formal bereavement groups were rated as similarly helpful (4.2) while helplines and specialist mental health support were slightly less helpful (3.6) (used by 9.3%, 4.8%, 7.1% and 4.5% of participants, respectively).
Conclusions
Results demonstrate the perceived benefits and helpfulness of different forms of bereavement support used during the pandemic.
Impact
These findings highlight the value of informal as well as formal support, particularly bereavement counselling. Policy makers must attend to the foundational and second tiers of the public health model of bereavement support, supporting communities as well as services.
Background Since 2005 lay representatives (‘Research Partners’ – RP) have been involved in the work of a clinical trials unit and academic research centre. Their roles can include attending trial management groups, reviewing documents and chairing and presenting at sub-committees. Where recruitment of RPs was once opportunistic, RPs are now more formally recruited in conjunction with a national public involvement organisation. The impact of RPs at the research centre had not been examined in-depth, nor research partners’ or staff members’ experiences been previously explored. The TACT study was conducted to investigate the input and impact of RPs to ensure the best possible working partnership between the centre and the public is achieved.
Healthcare professionals find breaking bad news difficult and upsetting. Increasing cultural diversity has led to a greater number of patients whose first language differs to that of the healthcare provider, with more patients requiring a translator to facilitate communication. Hospitals often ask non-clinical translators to facilitate breaking bad news. We sought to explore the experiences of translators within a specialist oncology centre.Following ethical and governance approvals, semi-structured interviews were undertaken with five translators recruited from the specialist oncology centre. Interviews were audiotaped and transcribed verbatim. The data were analysed thematically, with major themes and subthemes identified.Outpatient setting of a regional cancer centre.Translators serving a regional cancer centre.Qualitative data identified through thematic analysis.Major themes included the significant emotional impact of translating distressing information, the challenges of accurately conveying information in a culturally congruent format and the need for formal briefing, debriefing and support. Subthemes included feeling guilty for divulging distressing news, being the focus of patients' distress or anger, and feeling in conflict with the patient or family and issues surrounding confidentiality. Translators also felt a strong sense of advocacy for the patients and found encounters with death and dying emotionally challenging.The increasing use of translators in the care of patients with advanced cancer is increasingly resulting in lay people being subject to similar emotional pressures faced by clinical staff, yet without the necessary formal training or support mechanisms that are recommended for clinicians. This exploratory study highlights the training and support needs of non-clinical staff as identifying a unique set of communication challenges faced by translators.
Past research on aging and stereopsis has typically utilized static patterns of binocular disparity. In the present experiment, we explored the ability of younger (less than 30 years of age) and older (greater than 60 years) observers to discriminate 3-D shape from dynamic patterns of binocular disparity. The observers were required to discriminate between curved and noncurved 3-dimensional (3-D) surfaces (sine wave modulated in depth, square wave, or ramp). The spatial frequency of the surfaces was 1/4 cycle per degree. Discrimination accuracies were obtained for 18 distinct experimental conditions formed by the orthogonal combination of 3 surface point lifetimes (13.3 msec, 40 msec, and unlimited), 3 magnitudes of binocular correspondence (100%, 70%, and 40%), and 2 magnitudes of disparity (1.2 and 2.1 minutes arc for the younger observers, and 2.1 and 3.5 minutes arc for the older observers). The results demonstrated large and systematic effects of age — e.g., the discrimination accuracies for the older observers were, on average, 23 percent lower than those for the younger observers in comparable conditions. The reductions in binocular correspondence, however, adversely affected the performance of both age groups equally. The two age groups were differentially affected by the dynamic stereograms. For the younger observers, their discrimination performance was higher for the dynamic stereograms than for the static stereograms; there was no such superiority for the older observers (i.e., the performance of the older observers was identical for both the static and dynamic stereograms). In summary, the results demonstrate that the perception of 3-D shape from binocular disparity does decline with age. However, the results of the experiment also reveal that older observers can perform as well as younger observers if they are given more binocular disparity.
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