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Background: More people are dying at home with dementia and Alzheimer’s disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. Aim: To explore informal caregivers’ views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/Participants: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life. Results: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. Conclusions: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.

ObjectivesIn lung cancer, three prominent symptoms, such as breathlessness, cough and fatigue, are closely related with each other forming a ‘respiratory distress symptom cluster’. The aim of this study was to determine the clinical and cost-effectiveness of the respiratory distress symptom intervention (RDSI) for the management of this symptom cluster in people with lung cancer.MethodsA single blind, pragmatic, randomised controlled trial conducted in eight centres in England, UK. A total of 263 patients with lung cancer were randomised, including 132 who received RDSI and 131 who received standard care. To be eligible, participants self-reported adverse impact in daily life from at least two of the three symptoms, in any combination. Outcomes were change at 12 weeks for each symptom within the cluster, including Dyspnoea-12 (D-12), Manchester Cough in Lung Cancer (MCLC) and Functional Assessment of Chronic Illness-Fatigue.ResultsAt baseline, nearly 60% of participants reported all three symptoms. At trial completion the total trial attrition was 109 (41.4%). Compared with the control group, the RDSI group demonstrated a statistically significant improvement in D-12 (p=0.007) and MCLC (p3), MCLC −5.49 (MCID >3) and FACIT-F 4.91 (MCID >4).ConclusionRDSI is a clinically effective, low-risk intervention to support the management of the respiratory distress symptom cluster in lung cancer. However, the study did experience high attrition, which needs to be taken onto consideration when interpreting these results.Trial registration numberNCT03223805.

Palliative care patients can be at risk of social isolation or loneliness. Interventions that can provide effective social support, and particularly emotional support, could facilitate healthy coping that bolsters quality of life and reduces depression in palliative care patients. This is an observational cohort study which recruited thirty patients (n = 30) from the day services of four independent hospices in England. Participants completed patient reported outcome measures in perceived social support, loneliness, and depression, at up to three time points. Age range was 56–91 years, males and females were equally represented, and the sample was 93% white British. In participants that provided two or more timepoints, perceived social support increased, and loneliness and depression decreased. Largest changes with the least variation between participants was in emotional support (p = 0.165) and loneliness (p = 0.104). These results suggest that the psychosocial patient reported outcome measures used (MOS-SS, UCLA, BEDS) could be sensitive to change aligned with the goals of this intervention in palliative care. Participants in this study were observed to derive psychosocial benefit from attending the hospice day service.

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the ‘expert’ in terms of their knowledge of their relatives’ care and preferences.

Peer mentors may offer distinctive forms of support to people with advanced cancer. Whilst peer mentor programmes are known, little is understood about recruiting and training peer mentors to support those with advanced cancer. The purpose of this study is to determine the feasibility of recruiting and training peer mentors for a novel peer mentor intervention to promote well-being in people with advanced cancer. Feasibility study testing proactive introduction to a trained peer mentor for 12 weeks in the context of a randomized controlled two-arm trial and nested qualitative process evaluation was used. Peer mentors have/had cancer, recruited via an open call. Two-day training included a new bespoke module on coping with cancer. Descriptive recruitment and training data were captured, supplemented by qualitative interviews, analysed thematically. Forty-eight people expressed interest, mostly female (69%), with breast cancer (32%), and recruited via social media (49%). Twelve people completed training, with attrition often due to availability or mentors’ own health; many had advanced cancer themselves. They wanted to ‘give something back’, but also formed supportive bonds with fellow mentors. It is feasible to recruit and train people with lived experience of cancer to be peer mentors, but those with particular characteristics may predominate. Broad social media based recruitment may have merit in widening the pool of potential peer mentors.

Purpose of reviewCognitive impairment is increasing in an ageing population and as people live longer, they are more likely to develop cancer therefore cognitive impairment and cancer are frequently co-occurring. We reviewed articles published since 2018 on cognitive impairment and cancer.Recent findingsThe current review has focused on diagnosis, treatment and palliative and end of life care. A comprehensive systematic review reported joint cancer and cognitive impairment prevalence from 0.2 to 45.6%. The review reported there was reduced likelihood of patients with co-occurring cognitive and cancer receiving information regarding cancer stage, reduced cancer treatment with curative intent and limited pain and symptom management. Further studies emphasized the role of family carers in supporting patients with cognitive impairment through cancer treatment.SummaryDisappointingly in an area where the numbers of patients with cognitive impairment and cancer are increasing, there appears to be little recently published research in this area. We conclude that further research is required to determine how best to support patients with cognitive impairment and cancer and families during diagnosis of cancer, treatment and continuing care and most importantly the findings of all studies are implemented within clinical practice.

There is a lack of robust evidence regarding outcomes for day care use among older people living with long-term conditions (LTCs). Day care is provided by independent, private and voluntary and charitable sectors. This systematic review aims to establish current evidence of outcomes for older people with LTCs attending day care services and outcomes on carers, across all service models. Narrative synthesis of quantitative and qualitative data was undertaken. The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A systematic literature search was carried out across eight electronic databases and reference lists of key journals between 2004 and October 2020 were searched. Searches returned 1,202 unique titles. Forty-five articles from 16 countries met the criteria on review of title, abstract and full article. There is limited evidence suggesting improved levels of perceived psychological health, quality of life, perceived general health, physical health and functioning for older people attending day care who have LTCs. The respite function of day care resulted in positive outcomes for carers. Studies evaluating outcomes for participants or carers were limited in quantity and quality. There is limited information regarding outcomes for day care attendance for older people with multiple LTCs from existing literature. Further research focusing on LTCs and day care attendance would benefit this field.

Background Day care services can support older people living with multiple long term conditions (LTCs), to age in place, but little research on outcomes of Day Care attendance. Aims The aims of this comparative study were to determine outcomes for older people with LTCs attending day care services run entirely by paid staff or predominantly volunteers Methods Newly referred older people with LTCs to nine day care services in North West of England and North Wales were invited to participate in this longitudinal study with data being collected at baseline attendance and at 6 and 12 weeks. Demographic information was collected and the EQ-5D-3L and De Jong Loneliness 6 item questionnaire were completed at each time point.RESULTS 94 older people (64% female),age range 65 - 99 years (mean 82 years) were recruited. The mean number of LTCs was 4.3 (range 2-9) and 52% people lived alone. More than a third (36%) lived in one of the 20% most deprived local authorities in England and Wales. The outcomes in this exploratory study over 12 weeks appeared to be similar for paid, blended (paid staff and volunteers) and for volunteer led service, with those attending volunteer led services were significantly more likely to report fewer health problems in follow-up (OR=3.45, 95% CI 1.01-12.8, P=0.04). CONCLUSIONS This study suggests that Day Care Services for older people with long term conditions provide benefits in terms of self-rated physical and emotional well-being. Older people attending paid staff services were more likely to have greater number of LTCs associated with a higher symptom burden. However, at baseline there was no difference in self-reported health by service type. This study suggests that Day Care Services provided by volunteers can provide comparable outcomes. Following the Covid-19 pandemic, it is increasingly urgent to support older people with long term conditions who have lost physical and cognitive function during lockdown and to maintain and improve their function. Our study suggests that volunteers may be able to complement the care provided by paid staff freeing up resources and enabling increasing numbers of people to be supported.

COVID-19 has brought death and dying to the forefront, yet dementia is the most common cause of death in men and women older than 80 years Studies predict that deaths from dementia will increase from around 59 000 per year in 2014 to around 220,000 per year by 2040 This study reflects that a vital organisational response in their management of COVID-19 for families affected by dementia would provide better support for family carers to help maintain resilience and psychological and mental wellbeing The UK is arguably in a good position by having existing services to provide such support Admiral Nurses are specialists in dementia care who use a case management approach to support the whole family unit affected by dementia, from the point of diagnosis to end-of-life care, and provide continued support of family carers in bereavement

ObjectiveThis study sought to compare the Hospital Anxiety and Depression Subscale (HADS-D) and Brief Edinburgh Depression Scale (BEDS) as case-finding tools of major depressive disorder in patients with advanced cancer in a palliative care service.MethodsAn observational study was performed which included patients with advanced cancer who attended the palliative care service at the National Institute of Cancer in Mexico. Patients were asked to fill out the Hospital Anxiety and Depression Scale (HADS) and BEDS and were then assessed by a psychiatrist to evaluate major depressive disorder (MDD) as per the DSM-5 criteria. The case-finding capability of each scale was determined using receiver operating characteristic curves, assessing the area under the curve (AUC) in comparison to the clinical diagnosis.ResultsEighty-nine patients were included; median age was 57 years, and 71% were female. Among these, 19 patients were diagnosed with MDD during the interview. When comparing the self-reported scales, BEDS had a better performance compared with HADS-D (AUC 0.8541 vs. 0.7665). Limitations include a heterogeneous population and a limited sample size.Significance of resultsThe BEDS outperformed the HADS-D tool in discriminating patients with and without depression. A BEDS cutoff value of ≥5 is suggested as a case-finding score for depression in this population.

Background Advanced cancer affects people’s lives, often causing stress, anxiety and depression. Peer mentor interventions are used to address psychosocial concerns, but their outcomes and effect are not known. Our objective was to determine the feasibility of delivering and investigating a novel peer mentor intervention to promote and maintain psychological wellbeing in people with advanced cancer. Methods A mixed methods design incorporating a two-armed controlled trial (random allocation ratio 1:1) of a proactive peer mentor intervention plus usual care, vs. usual care alone, and a qualitative process evaluation. Peer mentors were recruited, trained, and matched with people with advanced cancer. Quantitative data assessed quality of life, coping styles, depression, social support and use of healthcare and other supports. Qualitative interviews probed experiences of the study and intervention. Results Peer mentor training and numbers (n = 12) met feasibility targets. Patient participants (n = 12, from 181 eligible who received an information pack) were not recruited to feasibility targets. Those who entered the study demonstrated that intervention delivery and data collection were feasible. Outcome data must be treated with extreme caution due to small numbers, but indicate that the intervention may have a positive effect on quality of life. Conclusions Peer mentor interventions are worthy of further study and researchers can learn from these feasibility data in planning participant recruitment and data collection strategies. Pragmatic trials, where the effectiveness of an intervention is tested in real-world routine practice, may be most appropriate. Peer mentor interventions may have merit in enabling survivors with advanced cancer cope with their disease. Trial Registration The trial was prospectively registered 13.6.2016: ISRCTN10276684.

Background: Most deaths occur in people over the age of 65 years, yet there is widespread evidence that older people have inequitable access to good palliative and end-of-life care. For people with dementia, there are further barriers to receiving palliative care. Identifying when older people with dementia are reaching the end of their lives is not straightforward. A palliative approach to care has been recognised as key in UK practice guidance; the National Institute of Health and Care Excellence recommends that, from diagnosis, people living with dementia should be offered flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. However there are still wide gaps in care in the dementia pathway, largely because commissioning is fragmented. Method: This paper describes the Admiral Nurse case management approach to palliative care by benchmarking its practice against the European Association of Palliative Care white paper recommendations for palliative care in dementia.

Purpose of reviewDementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care.Recent findingsThe present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and implemented advance care planning interventions or whether they achieve desired outcomes for end-of-life care. There is limited research on hospice-based care for patients with dementia and most studies are U.S. based. Equally studies exploring how family carers can be supported and facilitated to care at home for the person with dementia to the end of life are exploratory rather than determining what factors may be important.SummaryThere are relatively few studies, especially quantitative studies or intervention studies being carried out to determine most effective means of providing palliative care for people with dementia, particularly with respect to advanced care planning, the provision of hospice-based care and support at home. Despite increased public awareness of dementia as a terminal illness, more research is required to support patients with dementia and their families at the end of life.

AimsWhen using an assessment tool, brevity and validity are essential. Although brief depression inventories exist, they rely heavily on the inclusion of somatic symptoms. This can be problematic in advanced cancer populations; weight loss and sleep disturbance are for the most part ubiquitous in these patients and may not necessarily be indicative of depression.The Brief Edinburgh Depression Scale (BEDS) is a 6-item shortened version of the Edinburgh Depression Scale which has been validated for use in patients with advanced cancer and is used internationally. The BEDS cut off threshold of 6/18 indicates that depression may be present. However, the BEDS currently provides no information regarding severity. The aim of this study is to establish severity thresholds for the BEDS by comparing it to another depression scale: the commonly used, rigorously validated, Patient Health Questionnaire (PHQ-9).Method284 advanced cancer patients attending hospice day services in the North West of England completed both the PHQ-9 and the BEDS. Mean participant age was 66.7 (Standard Deviation = 13.2) and the sample contained both males (n = 102, 36%) and females (n = 182, 64%). BEDS severity thresholds with the highest Sensitivity (Sn) and Specificity (Sp) were selected based on their ability to predict PHQ-9 categories.ResultA BEDS score of 4 to 6 was selected to indicate ‘mild depression’ (Sn = 81.7, Sp = 65); 7 to 8 ‘moderate depression’ (Sn = 74.8, Sp = 78.7); 9 to 11 ‘moderately severe depression’ (Sn = 82, Sp = 82.9) and 12 or more ‘severe depression’ (Sn = 63.2, Sp = 92.8). A linearly weighted kappa (with s weighting) showed a moderate level of agreement (0.47, 95% Confidence Interval: 0.40-0.54).ConclusionThe BEDS is a simple and brief tool used to screen for depression in advanced cancer patients. It is administered throughout the UK and multiple translation studies have enabled its global a (including in resource poor countries). The severity thresholds calculated here are derived from a large sample of patients with advanced cancer attending hospice services and demonstrate acceptable sensitivity and specificity in relation to the PHQ-9, a thoroughly validated reference standard. We conclude that the generated BEDS thresholds support use of the BEDS in determining the presence and severity of depression in advanced cancer populations.

Simple Summary We know that socio-economic factors influence delay in presentation and diagnosis of cancer and that patients living in areas of greater socio-economic deprivation are less likely to be referred to palliative care services including hospice. However, very little is known regarding the impact of socio-economic deprivation on symptom burden in advanced cancer patients. Our study found that patients experiencing greater socio-economic deprivation were more likely to report depression and pain and greater global symptom burden than patients from less socio-economically deprived areas. We also found that reporting a lack of information at time of diagnosis was significantly associated with socio-economic deprivation. Although more than one-third of patients recruited into this study were diagnosed with cancer within the preceding 12 months, this was not associated with socio-economic factors and socio-economic factors did not appear to influence survival in our study. The impact of socio-economic factors on symptom burden and information needs should be acknowledged within palliative care settings. Abstract Socio-economic deprivation is known to impact on cancer diagnosis, treatment and access to services, but little is known of the impact of socio-economic deprivation on symptom burden in patients with advanced cancer. Patients with advanced cancer attending hospice day services were recruited into a 24 week longitudinal study. An area-based index of social deprivation was collected along with depression and symptom burden at baseline, 8, 16 and 24 weeks. Of the 595 patients included, with an age range of 33–89 years and a mean age of 68 years, 67% were female, and 37% were diagnosed with cancer in the last 12 months. Twenty nine percent lived in one of the most deprived 20% of neighbourhoods. Patients living in the most socio-economically deprived areas were significantly likely to report receiving insufficient information regarding their cancer at diagnosis (p = 0.007), greater pain (p = 0.02), moderate to severe depression (p = 0.04) and higher global symptom burden (p = 0.04). This study is the first to report that patients with advanced cancer attending hospice services, living in the most deprived neighbourhoods experience significantly greater symptom burden, notably depression and pain. We recommend using patient outcome measures in order to provide targeted support and thereby reduce the increased symptom burden that socio-economically disadvantaged patients experience at the end of life.

Introduction Social isolation is increasing with negative consequences for both physical and mental health. People with life-limiting illness and their carers are at risk of inadequate social support and loneliness. Hospices support social wellbeing with services including traditional day care support groups befriending multi-component interventions and community activities. Existing research suggests that access to social support is highly valued. However models of support used in practice are poorly documented and outcomes difficult to ascertain. The significance of social support in palliative care is under-researched. Aim To establish an overview of hospice service models that facilitate social support for adults living in the community with life-limiting illness. Method An online survey was developed piloted and disseminated to adult hospices in the UK and ROI. Questions include hospice characteristics provision of services facilitating social support access issues use of patient outcomes and availability of cost data. Results 107 hospices responded to the survey (>50% of eligible hospices). A diverse range of service models were identified. Preliminary results presented include: descriptive statistics of the sample categories and aims of services and salient access issues. Implications of findings for research and economic evaluation are discussed. Conclusion This survey demonstrates hospices to be interested and active in facilitating social support. It is possible that increasingly diverse approaches used in practice may improve issues regarding access to and awareness of hospice care. More work is needed to share best practice document outcomes and consider cost-effectiveness. Reference . Bradley N, Lloyd-Williams M, Dowrick C. Effectiveness of palliative care interventions offering social support to people with life-limiting illness – A systematic review. Eur J Cancer Care2018. doi:10.1111/ecc.12837

Purpose of review For older people with long-term conditions, regular structured activities within a community setting meeting others are thought to improve well being and quality of life. Historically local authority-run day care centres were widely available, but austerity measures have meant that in many areas, such provision has been markedly reduced and different models of day care services are being developed. There is little known about outcomes of day care provision for older people with long-term conditions. Recent findings This review has critically examined the recent evidence on outcomes of day care provision for older people with long-term conditions and will focus on three areas – physical functioning, intergenerational provision and measurement of outcomes. In terms of interventions to improve physical functioning for older people with long-term conditions attending day care, there are few studies and it is difficult to generalize but there appears to be a trend for positive impact on physical functioning when activities are incorporated into a day care programme. There is a paucity of research on intergenerational provision, however, the small number of studies suggest positive benefits. Studies measuring outcomes for older people with long-term conditions attending day care services are very limited in terms of outcome data with the exception of a Canadian study, which suggested that attendance at day care could reduce hospital attendance and admissions. Summary This review reveals a lack of research of day care provision for older people with long-term conditions. There is a suggestion in the small number of articles included in this review that there can be benefits both in terms of global outcomes of attendance and in improved physical functioning; there is limited evidence of the value of intergenerational provision. Robust research with collection of meaningful outcomes is required to ensure that the increasing number of older people with long-term conditions are enabled to access high-quality day care provision.

ObjectiveDepression in palliative advanced cancer patients is common, but often goes unrecognized. One of the first steps toward improving detection is the development of tools that are valid in the specific language and setting in which they are to be used. The Brief Edinburgh Depression Scale (BEDS) is a sensitive case-finding tool for depression in advanced cancer patients that was developed in the United Kingdom. There are no validated instruments to identify depression in Mexican palliative patients. Our aim was to validate the Spanish-language version of the BEDS in Mexican population with advanced cancer.MethodWe conducted a cross-sectional study with outpatients from the palliative care unit at the Instituto Nacional de Cancerología in Mexico City. The Mexican BEDS was validated against a semistructured psychiatric clinical interview according to the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, classification criteria for major depressive disorder. The interviewer was blind to the BEDS score at the time of the assessment.ResultSeventy subjects completed the scale and interview. Women represented 71.4% of the sample and median age of subjects was 56.5 years (range, 20–85 years). The prevalence of major depressive disorder according to the psychiatric interview was 20%. The most valid cutoff for defining a case of depression was a score ≥5 of 18 on the Mexican BEDS, which gave a sensitivity of 85.7% and specificity of 62.5%. The scale's Cronbach's alpha was 0.71.Significance of resultsMajor depressive disorder is frequent in Mexican palliative patients. The Spanish-language Mexican version of the BEDS is the first valid case-finding tool in advanced cancer patients in this setting.

Purpose: To design and evaluate an intervention to address carers’ needs for practical information and support skills when caring for a person with cancer at end of life. Method: Phase I 29 carers were interviewed about need for practical information, support skills and their preferences for information delivery. The preferred format was a booklet. Phase 2 evaluated the booklet. 31 carers and 14 district nurses participated. Validated questionnaires: on perceptions of caregiving and carer health before and after the booklet was used and interviews with both carers and nurses were untertaken.24 carers completed both interviews. Quantitative data were coded using scale manuals and analysed using SPSSv20 and interview data was analysed thematically. Results: Carers were aged 31-82 and cared for people aged 50-92; 8 carers were male and 23 female; 20 cared for a partner, 8 for a parent and 1 for a sibling (2 undisclosed). Carers were positive about the booklet, however many carers would have liked the booklet earlier. Carers reported feeling more positive about caregiving, and more reassured and competent in their role. District nurses found the booklet useful and reported receiving fewer phone calls from study carers than others in similar situations. Conclusions: The booklet intervention was a source of reassurance to carers and it has the potential to be incorporated into everyday practice. The challenge is in when and how to distribute the booklet and more work is required on the timing of delivery in order to maximise the usefulness of booklet to carers.

© 2018 John Wiley & Sons Ltd. Individuals managing the challenges of life-limiting illness require adequate social support to maintain quality of life. Qualitative research reports that patients value highly the social support obtained in palliative care interventions such as day care and group therapies. This systematic review aims to summarise existing quantitative evidence on palliative care interventions that facilitate social support. Research literature was systematically searched using electronic databases and key journals. Searches returned a total of 6,247 unique titles of which sixteen were eligible for inclusion. Interventions include group therapies, group practical interventions and palliative day care. Outcome measures and study designs were heterogeneous. Only one study used a validated outcome measure of social support. Benefits were influenced by participant characteristics such as baseline distress. Partial economic evaluation was attempted by two studies. Methodological challenges include attrition and use of outcome measures that were insensitive to change. Statistically significant results were reported in psychological and physical domains. Evidence is limited due to methodological issues and a scarcity of quantitative research, particularly regarding long-term benefits and cost-effectiveness. Interventions may be more beneficial to some groups than others.

Background A holistic approach to supporting a person with life-limiting illness and their families requires a consideration of their social context, including the availability of social support (defined as the resources gained from relationships with others). Hospices offer social environments, enabling opportunities to interact with others, maintain self-esteem and engage in group activities which are reported to be valuable opportunities to improve wellbeing. There has been limited research into the role of social support in palliative care, and whether the provision of such support has a measurable impact on patient outcomes. Aims This three-year project will use mixed methods to explore services offered by hospices that facilitate social support, leading to a detailed understanding of social support in palliative care. Methods A survey, disseminated to all hospices in the UK, will contribute knowledge on the establishment and variety of services that offer social support. Qualitative investigation including observations and interviews with service providers will seek to establish the meaning of social support in life-limiting illness and gain detailed understanding of services. A prospective study of patient reported outcome measures will be used to test the effectiveness (and if possible, cost-effectiveness) of these services. Results An analysis of the results of the survey and preliminary qualitative findings will be presented. Conclusions The project will contribute knowledge on the variety and significance of social support services in UK hospices and provide evidence for policy and decision makers on the necessity of social support in the context of life-limiting illness.

Background Place of death is important in end of life care and it is reported that given the right support, most people would choose to die at home. A very small minority of people with dementia die at home and knowledge gaps remain on how best to support end of life care at home for people with dementia. Aim This systematic review synthesised qualitative and quantitative studies to explore the challenges and facilitators of providing end of life care at home for people with dementia. Methods A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE, and PsychInfo) and reference lists of key journals were searched up to November 2016. Included studies were appraised for quality and data thematically synthesised. Results Searches returned 1949 unique titles, of which seven studies met all eligibility criteria (four quantitative, three qualitative). All studies were rated for quality and six key themes identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘worsening of physical or mental health’ and ‘issues with formal services’. Conclusions People with dementia may not always require specialist palliative care at the end of life and many clinicians, services and charities support people with dementia to die well at home. Informal caregivers also provide a significant amount of this care to people. Further research is required to establish how clinicians, statutory services, voluntary agencies and volunteers can support families to allow a greater number of people with dementia to die at home and to determine what services are required to facilitate home death for people with dementia.

Palliative care for patients with dementia can be a challenge for clinicians where assessment of symptoms in patients who may not be able to express their needs is difficult and recognising that patients are entering the terminal phase complex. As academic clinicians we will discuss the current situation with a UK focus and review some of the recent research exploring palliative care for patients with dementia.

Background This study explored whether scores indicating depression on Patient Health Questionnaire 9 and patient reports of thoughts of self-harm were prognostic factors for survival in advanced cancer. Method Patients with advanced cancer were recruited into the study from palliative care day units and invited to complete measures for depression which included Patient Health Questionnaire 9, and Edinburgh Depression Scale at recruitment, and at 8, 16 and 24 weeks. Results 629 patients were recruited into the study; 139 (22%) died during 6 months follow up and 235 patients (37.4%) died during the study period. The age range of patients recruited was 21–94 years—mean age 66 years and 67% of patients recruited were female. The overall median survival of patients recruited was 37.1 weeks (95% CI 36.0, 39.9 weeks) (range 0–116 weeks). The estimated median survival time of patients whose baseline PHQ9≥9 was 36 weeks with 95% confidence interval of (31, 39) and for patients whose baseline PHQ9

Background The background literature suggests that recruiting patients with advanced cancer from hospice day care to participate in a research study may be challenging. Aim This paper describes such challenges and considers whether those faced by researchers in this study reflect those recorded in the literature. Method Six hundred and twenty-six patients with advanced cancer from hospice day care units in the north-west region of England were recruited as part of a multi-centre mixed methods study to determine the prevalence, aetiology, and natural history of depression and demoralization. Results A number of challenges were reported (i) data collection sometimes presented researchers with ethical dilemmas, although the ability to respond appeared to be influenced by disciplinary background and training, (ii) emotional impact of the research may force researchers to face a variety of emotional responses, and (iii) dilemmas relating to the setting and maintenance of role boundaries included determining th...

Introduction:\ud A number of international guidelines have been developed to support primary care clinicians improve the quality of care for patients with chronic heart failure at the end of life. The objective of this study was to undertake a systematic evaluation of such guidelines in relation to end-of-life care.\ud \ud Methods:\ud A systematic literature search of research databases and guideline clearing houses was undertaken. The selected guidelines were independently assessed by two researchers using the AGREE II quality criteria. A data-extraction framework was devised based on the holistic needs assessment tool of the Gold Standards Framework. The content of each guideline was then analysed using an approach similar to that used for thematic analysis.\ud \ud Results:\ud A total of 19 guidelines were included. Those guidelines with lower overall AGREE II scores covered fewer domains on the holistic needs assessment. Across all guidelines the lowest scoring domain was applicability and stakeholder involvement. Qualitative assessment showed that some guidelines adopt an unwavering disease orientated approach to assessing patient need. Guidance around continuity of care, out of hours care and after care was particularly poor in several guidelines. There was considerable heterogeneity in the evidence presented even amongst those guidelines that achieved high AGREE II scores.\ud \ud Conclusion:\ud Combined quantitative and qualitative assessment demonstrates the importance of rigorous guideline development. Whilst the variation in evidence presented could be a result of methodological heterogeneity in the development of guidelines, it raises important questions about the processes by which evidence, information and knowledge become transformed into clinical guidelines.

Introduction A pilot trial was carried out to determine if a focussed narrative interview could alleviate the components of suffering and anxiety and depression in advanced cancer patients. Intervention Patients recruited were invited to participate in a focussed narrative interview and reflect on their perspectives on their sense of “meaning”, regarding suffering and their psychological, physical, social and spiritual well being – the emphasis was on allowing the patient to tell their story. Patients were encouraged to share what resources they themselves had utilised in addition to what professional care they may have received, to maintain a sense of well being. Method Patients with advanced metastatic disease were recruited from hospices in the North West of England – the only exclusion criteria were not being able to understand written and spoken English and a non cancer diagnosis. At recruitment patients were asked to complete a numerical scale for suffering; the Brief Edinburgh Depression Scale, Edmonton Symptom Assessment Scale (ESAS), FACIT Spiritual well being questionnaire, Demographic information was collected and patients were randomised to either the intervention arm of the trial or the usual care arm of the study. Patients in both groups were invited to complete each measure at 2, 4 and 8 weeks. Results One hundred people were recruited into the study – 49 were randomised to intervention group and 51 to control group. The median age of patients was 66 years age range (31–89 years) and 68% of patients were female. At baseline the ECOG performance of 75% of patients recruited was 1 or 2. The median survival of all patients in the study was 169.5 days (range 10 days to still alive at end of study). There was no significant difference at any timepoint in scores on suffering measure between intervention group and control group. At each time point the intervention demonstrated mean improvement in scores for depression and anxiety on ESAS – the greatest changes for both depression and anxiety were seen at 4 weeks. Conclusion This pilot randomised controlled trial of a focussed narrative intervention demonstrated an improvement in mean changes in scores for depression and anxiety at 2, 4, and 8 weeks. We suggest this intervention may have beneficial effects on depression and anxiety, but a larger powered trial is required to determine the full effects.

Summary Objective To explore the individual experiences of those who had experienced the death of a parent(s) before the age of 18, and investigate how such experiences were perceived to impact on adult life. Design An exploratory qualitative design using written (n = 5) and oral (n= 28) narratives and narrative analysis was adopted to explore the experiences 33 adults (7 men and 26 women) who had experienced parental death during childhood. Setting UK Participants Individuals living in the North West of England who had lost a parent(s) before the age of 18. Main outcome measures Views of adults bereaved of a parent before the age of 18 of impact of parental loss in adult life. Results While individual experiences of bereavement in childhood were unique and context bound, the narratives were organized around three common themes: disruptions and continuity, the role of social networks and affiliations and communication and the extent to which these dynamics mediated the bereavement experience and the subsequent impact on adult life. Specifically they illustrate how discontinuity (or continuity that does not meet the child's needs), a lack of appropriate social support for both the child and surviving parent and a failure to provide clear and honest information at appropriate time points relevant to the child's level of understanding was perceived to have a negative impact in adulthood with regards to trust, relationships, self-esteem, feeling of self-worth loneliness and isolation and the ability to express feelings. A model is suggested for identifying and supporting those that may be more vulnerable to less favourable outcomes in adult life. Conclusions The findings suggest that if the negative consequences are to be minimized it is crucial that guidelines for ‘best practice’ that recognize the complex nature of the bereavement experience are followed.

ObjectivesTo understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.DesignQualitative serial (4-12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development. Participants26 people with advanced (stage 3-4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers. SettingParticipants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013. Results45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies. ConclusionsOur findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

This study was conducted to explore the interrelationships among caregiver burden, emotional status and quality of life (QoL) in caregivers of lung cancer patients, and to identify whether caregiver burden and health status are associated with patient emotional status and QoL. Forty-three dyads of lung cancer patients and their caregivers were included for analysis. Caregiver-reported outcomes were measured by Caregiver Burden Scale (CBS), Caregivers Quality of Life Index-Cancer (CQOLC) and Hospital Anxiety and Depression Scale (HADS), while patient-reported outcomes were collected by HADS and Lung Cancer Symptom Scale (LCSS). The majority of the CBS and CQOLC scores were significantly higher in anxious and depressed caregivers than non-anxious and non-depressed caregivers (p < .01 or .05). Caregivers of depressed patients experienced significantly greater emotional distress than those of non-depressed patients (p < .01). Significantly positive associations were identified among most of the CBS, CQOLC and caregiver HADS scores. Patient LCSS scores were positively correlated with the CBS and caregiver HADS scores, and patient HADS scores were also positively related to caregiver HADS scores. The close interrelationships between caregiver and patient health outcomes provide evidence that lung cancer patients and their caregivers should be viewed as a unit in future supportive service models.

PurposePatients newly diagnosed with inoperable lung cancer experience a symptom distress burden that may impact upon functional performance in daily activities. This structured review examines empirical evidence to see how functional limitation and rehabilitation needs are represented in the supportive care literature in this population. Early access to rehabilitation services may ameliorate the impact, but evidence of need following diagnosis is required.MethodElectronic databases Medline, Web-of-Science, Cinahl, AMED and PsychINFO were searched in April 2014. Hawker's criteria were used to assess methodological quality. The World Health Organization International Classification for Functioning Disability and Health (WHO-ICF) guided framework analysis and narrative synthesis.ResultsThirty-two articles selected for further analysis included heterogeneous studies exploring the following conceptually diverse dimensions: quality of life, symptoms, functional performance and unmet supportive care needs at diagnosis and first treatment phase. Studies, mostly utilising patient self-report measures, reveal functional impairments, limitations and restrictions influenced by personal and environmental factors across all WHO-ICF domains. Two studies included objective evaluations of function. Six studies explored functional performance as a primary aim. Five studies suggested specific or general rehabilitation interventions to address identified needs.ConclusionsNeeds associated with a diagnosis of inoperable lung cancer impact on daily life in the peri and early post-diagnostic period across all WHO-ICF domains. Specific functional impairments, limitations and restrictions and the potential role of rehabilitation services are rarely explored objectively or discussed in the supportive care literature for this population. Research is needed to guide the development of effective rehabilitation interventions acceptable to patients, health care commissioners and providers that address the impact of a new lung cancer diagnosis on functional performance.

There are different groups in society who may be considered vulnerable, for example those experiencing mental or physical health issues, learning disabilities, prisoners or children. There are, however, other groups in society who may also be regarded as vulnerable, such as those who are bereaved. Vulnerability in relation to the bereaved occurs as a result of experiencing a normal life event, death or a loss. In this situation vulnerability may be transient and, depending upon the management of the bereavement, generally temporary. Unlike the aforementioned groups, participants required for this type of research (bereavement, death and dying) are able to consent themselves into projects, and the capacity to do so is not an issue. Undertaking research with those who may be considered vulnerable into sensitive, emotive topics such as death and dying can create difficulties for the National Research Ethics Service (NRES), making it difficult to get approval for such studies. It appears that the ethical issues are concerned with not wishing to cause distress to participants when asked for research purposes to recollect what for some may have been emotionally challenging and traumatic events. The article offers a narrative, reflective account of the above from several perspectives: being employed as a contract researcher in a university; having experience of being an active member of a National Health Service Research Ethics Committee; and later assuming the role of full-time postgraduate (PhD) student requiring ethical approval to undertake research with what may be considered a vulnerable group involving a sensitive and emotive topic. Valuable insights from participants – their views on participation in an emotive research project and good practice in research having been explored via questionnaire – are highlighted and discussed.

Background Spirituality is an important component of palliative care that is incorporated into practice and the subject of research. A literature review by the authors indicated that many studies into the spiritual needs of palliative care patients operationalised highly reductive constructs of spirituality and relied upon unexamined assumptions and concepts. Methods We examine the use of models as a strategy to explain how spirituality functions in the lives of patients and critically review examples of descriptive modelling and mathematical modelling. The explanatory and predictive potential of these techniques is considered along with methodological limitations in representing complex aspects of human nature in models. Proposal We propose a realistic synoptic model to explain how spirituality is lived and experienced in the wider context of a mental, personal and social world. We describe the essential conceptual apparatus and mechanisms of lived spirituality including beliefs, behaviour and experience, and we suggest that spirituality is a feature and capacity of the system as a whole. Conclusions The synoptic model provides an explanation of how spirituality operates in the totality of patients9 lives and aims to capture aspects of spirituality that remain neglected by researchers and practitioners. It is proposed as a corrective to reductionist approaches and supports the contribution of different disciplines and different ways of thinking about spirituality.

Context Spirituality is a distinctive subject within palliative care practice and literature, but research to date is relatively undeveloped in this field and studies often throw more light on conceptual and methodological issues than producing reliable data for clinical practice. Objectives To determine what is known about the spiritual needs of palliative care patients from the evidence presented in published research. Methods Specialist online databases were interrogated for primary empirical studies of patients with a chronic disease unresponsive to curative treatment. Studies that only used a proxy for the patient or reported expert opinion were excluded. Each study was critically appraised for quality and the strength of its evidence to determine if any data could be pooled. Results Thirty-five studies were identified, equating to a total of 1374 patients. Study populations were typically people with advanced-stage cancer, older than 60 years, who were English speaking, and with a Christian or Jewish religious affiliation, reflecting the predominance of Anglo-American studies. Studies fell into two groups: those that investigated the nature of spiritual experience and those that examined the relationship of spirituality with other phenomena. The evidence was insufficiently homogeneous to pool. Conclusion Relevant accounts of what spirituality means for palliative care patients and evidence of how it operates in the lives of people with life-limiting disease can be derived from research. Studies to date are limited by reductive representations of spirituality and the conduct of research by health professionals within health care communities demarcated from disciplines and interpretive traditions of spirituality.

IntroductionDepression is a frequent symptom among cancer patients but is rarely identified. The Brief Edinburgh Depression Scale (BEDS) is widely used within the United Kingdom to screen for depression among patients with advanced cancer, but its use elsewhere is limited by the lack of appropriate translations. We translated the BEDS into French and then validated the translated version with and assessed its acceptability by cancer patients in France.MethodsWe used back-to-back translation and standard European Organization for Research and Treatment of Cancer procedures to translate the BEDS into French. The French version was validated against Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) semi-structured psychiatric interviews with 48 patients with advanced cancer who were admitted to a palliative care unit. Acceptability was determined with these inpatients and with 95 outpatients at a Comprehensive Cancer Center.ResultsAmong inpatients, the prevalence of major depress...

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007–2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: ‘personal or personalised care’ and ‘expectations of truth and certainty’. We discuss these themes in the light of Illich’s critique of health care as a ‘technical response to a personal challenge’. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches.