Abstract Background Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes. Methods We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. Results From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. Conclusions Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. Patient and Public Contribution We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research.
Grieving is a unique experience and people have different support needs and preferences. However, bereaved people experience significant difficulties getting the informal and formal support that they need, including limited knowledge of bereavement support options and how they can help, and a reluctance to seek help.1 2
Aim
To develop a resource which widens access to bereavement support by helping bereaved people identify support that meets their needs and preferences.
Method
The Grief Support Guide was developed in partnership with the National Bereavement Alliance (NBA), Marie Curie, Good Grief Festival and Compassionate Cymru. The Guide was developed using research findings on the benefits of different types of bereavement support, including participant quotes,2–4 alongside a desk-based service-mapping exercise. Stakeholders participated in two consultation events: an initial online workshop with 33 professional and public stakeholders, and an in-person focus group with a bereavement support group (n=9).
Results
The Grief Support Guide is available on the NBA website5 in multiple languages. The Guide provides information on the variety of bereavement support that is available in the UK, from self-help resources and helplines to peer support groups and grief counselling. It describes the key features of each support type, how the support can help, and how to access it. The Guide also includes details of support for specific groups of bereaved people, such as widow(er)s, children, cultural and faith groups and people bereaved by particular types of death.
Conclusion
The project demonstrates how research evidence, close partnership working and stakeholder engagement can effectively co-produce resources with direct benefits for services and the public.
Impact
Useful signposting resource for bereavement professionals, volunteers and other people/organisations in contact with bereaved people. Improved public awareness of and access to different types of informal and formal support, empowering bereaved people to find support that is right for them.
References
Harrop E. et al. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine. 2021 Dec;35(10):1985–97. UK Commission on Bereavement. Bereavement is everybody's business. 2022. https://bereavementcommission.org.uk/ukcbfindings/ Goss S, et al. Bereavement during COVID-19: findings from a UK-wide online survey on the use and perceived helpfulness of informal and formal support during the pandemic. BMJ Supportive & Palliative Care, 2023;13:A6. Harrop E, et al. The impacts and effectiveness of support for people bereaved through advanced illness: a systematic review and thematic synthesis. Palliative Medicine. 2020 Jul;34(7):871–88. https://nationalbereavementalliance.org.uk/support/
Purpose Cancer-induced bone pain (CIBP) affects one third of patients with cancer. Radiotherapy remains the gold-standard treatment; however, laboratory and clinical work suggest that pregabalin may be useful in treating CIBP. The aim of this study was to examine pregabalin in patients with CIBP receiving radiotherapy. Patients and Methods A multicenter, double-blind randomized trial of pregabalin versus placebo was conducted. Eligible patients were age ≥ 18 years, had radiologically proven bone metastases, were scheduled to receive radiotherapy, and had pain scores ≥ 4 of 10 (on 0-to-10 numeric rating scale). Before radiotherapy, baseline assessments were completed, followed by random assignment. Doses of pregabalin and placebo were increased over 4 weeks. The primary end point was treatment response, defined as a reduction of ≥ 2 points in worst pain by week 4, accompanied by a stable or reduced opioid dose, compared with baseline. Secondary end points assessed average pain, interference of pain with activity, breakthrough pain, mood, quality of life, and adverse events. Results A total of 233 patients were randomly assigned: 117 to placebo and 116 to pregabalin. The most common cancers were prostate (n = 88; 38%), breast (n = 77; 33%), and lung (n = 42; 18%). In the pregabalin arm, 45 patients (38.8%) achieved the primary end point, compared with 47 (40.2%) in the placebo arm (adjusted odds ratio, 1.07; 95% CI, 0.63 to 1.81; P = .816). There were no statistically significant differences in average pain, pain interference, or quality of life between arms. There were differences in mood (P = .031) and breakthrough pain duration (P = .037) between arms. Outcomes were compared at 4 weeks. Conclusion Our findings do not support the role of pregabalin in patients with CIBP receiving radiotherapy. The role of pregabalin in CIBP with a clinical neuropathic pain component is unknown.
1403 completed responses were received from patients, families and professionals during the first Palliative and end of life care Priority Setting Partnership (PeolcPSP) survey. Most respondents gave detailed narrative accounts in response to the survey questions and some of these data were deemed outside the scope of the James Lind Alliance (JLA) protocol because no interventional question could be derived. Using a thematic analysis applied to the entire data set, we were able to explore the uncertainties, questions and experiences of the respondents to provide further research areas to supplement the interventional questions taken forward by the analysis carried out by the PeolcPSP. Discussions regarding expectations and beliefs around death and dying were a recurring theme within these data.
Method
The 1403 survey responses were coded using NVivo 10 qualitative software and analysed thematically.
Results
Responses were categorised under the sub-themes of prognostication, the dying trajectory, awareness of prognosis and talking about dying in both cancer and non-cancer conditions. Respondents asked for clarification of the dying process including, how to identify dying patients, how to understand the dying trajectory, and how to talk about dying. Many respondents talked about the implications of awareness and preparedness, or lack of, in emotional and practical terms. Overarching these issues was a clear desire to unmask the mysteries and taboos around death and dying in society to reduce the stigma that patients and families feel.
Conclusions
There is a clear need for a greater individual and societal awareness and acceptance of the dying process. Respondents struggled with uncertainty and preparedness, often with a lasting effect on the bereaved. The perception of death as a failure has a clear influence on decision-making and preparedness, and ultimately acceptance of the inevitable. Further research is needed to raise awareness of the processes of death and dying, and towards improving prognostication and communication.
Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies.To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness.A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530).The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists.A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: 'loss and grief resolution', 'sense of mastery and moving ahead' and 'social support'.Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.
Bereavement support is considered an essential part of hospice provision. However, the research evidence is limited by a lack of consistency in the outcomes used to evaluate services, which in turn makes it difficult to compare approaches and draw conclusions on 'what works best'. Core Outcome Sets (COS) represent the 'minimum that should be measured and reported' in research into specific conditions or services [www.comet-initiative.org]. This project aimed to develop a COS for evaluating bereavement support in palliative care for adults who have lost adults through terminal illness.
Methodology
The research began with a systematic review of quantitative and qualitative literature to identify a list of outcomes relevant to bereavement support. At a subsequent consensus day 21 stakeholders (including service users) discussed what they considered to be the most important outcomes and compared these to and critiqued the lists generated from the review. These lists and discussions informed a two round DELPHI survey (n=238) designed to reach consensus on which outcomes/outcome dimensions should be included in the Core Outcome Set. During a final consensus day participants ranked the relative importance of the items which reached consensus in the survey.
Results
Results suggest that the two most important outcomes are 'Ability to cope' and 'Quality of life and mental wellbeing'. A number of core dimensions to explore when assessing these outcomes have also been identified. Examples include; 'Feelings of loneliness and emptiness'; 'Relationships with friends and family'; 'Ability to find balance and channel grief'; 'Ability to perform daily tasks' and 'Sense of meaning and purpose in life'.
Conclusion
Available validated tools have been reviewed for their relevance to these outcomes. No tools have been identified which cover all core domains, although some have better 'fit' than others. Further work is being planned to adapt or develop measures as necessary.
Systematic reviews aim to identify, evaluate, and summarise all the evidence meeting pre-specified eligibility criteria for a given clinical question. However, they face criticisms including long completion timeframes and level of impact. Whilst systematic reviews represent a robust methodology, evidence synthesis must address the challenges of timeliness and impacting at pace on care delivery.
Aims
We use the example of a rapidly conducted narrative systematic review on the challenge of supporting large numbers of bereaved people to demonstrate how evidence can be gathered at pace and impact quickly on palliative care practice and policy.
Method
We followed Palliative Care Evidence Review Service (PaCERS) methodology1 with narrative synthesis, developed to conduct rapid reviews requested by clinicians/clinical services. A systematic search was conducted on four databases and supplementary search methods were employed to identify additional papers.
Results
Six studies were included, reporting on system responses to man-made disasters and natural disasters. Through narrative synthesis we sought to draw consistent lessons from the available evidence. The review was completed in 10 weeks and rapidly published in a peer reviewed journal2 adding to the emergent Covid literature, informing a subsequent UK wide study and provided evidence in support of a national bereavement framework for Wales.
Conclusion
The COVID-19 pandemic has resulted in unprecedented research worldwide. Our review highlighted common features for effective service delivery that can be identified for bereavement support beyond the pandemic, which will have a long-lasting impact.
Impact
Informed the successful funding application and project design for: Supporting people bereaved during COVID–19: a mixed methods study of bereaved people's experiences and the bereavement services supporting them. Informed steering group discussions for the new National Framework for Bereavement Care in Wales Review published July 2020, up to now 16 citations. Placed at the top 5% of all research outputs scored by Altmetric.
References
Mann M, Woodward A, Nelson A, Byrne A. Palliative care evidence review service (PaCERS): a knowledge transfer partnership. Health Research Policy and Systems 2019;17(1):100. doi:10.1186/s12961-019-0504-4 Harrop E, Mann M, Semedo L, Chao D, Selman LE, Byrne A. What elements of a systems' approach to bereavement are most effective in times of mass bereavement? A narrative systematic review with lessons for COVID-19. Palliative Medicine, 2020;34(9):1165–1181. doi:10.1177/0269216320946273
Background: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. Aim: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. Design: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. Setting/participants: 711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Results: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted ( p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals ( p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member. Conclusions: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.
The need to support patient choice in terms of preferred place of care and to ensure access to high quality palliative care for all individuals in all settings is recognised in UK policy (DH 2010; WAG 2008). However, people from minority ethnic communities are underrepresented in their utilisation of, and access to, palliative care services, with growing evidence that their palliative care needs are not being met (Bosma et al. 2010; Coupland et al. 2011; Evans et al. 2012; Worth et al. 2009). In September 2012, with funding from the Big Lottery Fund, a hospice in South Wales appointed a key worker to engage with local minority ethnic groups, hospice staff and healthcare providers to improve access to palliative care. This study has been informing and evaluating the impact of the project over a three year period.
Methods
To date, semi-structured interviews have been undertaken with the keyworker, hospice staff (n = 14), and members of community organisations (n = 7) at baseline and 30 month follow up. Two focus groups have been conducted with the project steering group. Interview and focus group data are analysed for key themes. Project documents have been analysed to corroborate and complement findings from stakeholder interviews.
Results
This presentation reports on final evaluation results. It describes in detail the extensive work of the keyworker in the following domains; community engagement; creating an inclusive hospice environment; supporting patients and referral, access and monitoring processes. A number of key impacts have been identified which include; raised awareness amongst hospice staff and improved facilities at the hospice; increased awareness of, and familiarity with hospice and community nursing services amongst local BAME communities; increased uptake of services amongst BAME groups and practice sharing and involvement in national initiatives by the keyworker. Recommendations will be made for future work in this area.
Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach. Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.
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