Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

BACKGROUND: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. AIM: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. DESIGN: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. METHOD: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. RESULTS: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. CONCLUSION: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Social support services for dementia during the COVID-19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom.

OBJECTIVES: To understand how the delivery of dementia-related social support services across the UK adapted during the pandemic. METHODS: We devised a two-part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). RESULTS: A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty-six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in-person to remote or hybrid. While in-person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. CONCLUSIONS: Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in-person services. Thus, the provision of in-person and remote services needs to be carefully balanced amidst the current hybrid landscape. PATIENT OR PUBLIC CONTRIBUTION: Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia-related social support services before and or during the pandemic in the United Kingdom.

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.

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.

Peer Mentors for People with Advanced Cancer: Lessons Learnt from Recruiting and Training Peer Mentors for a Feasibility Randomized Controlled Trial.

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.

Comparing the hospital anxiety and depression scale to the Brief Edinburgh Depression Scale for identifying cases of major depressive disorder in advanced cancer palliative patients.

OBJECTIVE: This 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. METHODS: An 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. RESULTS: Eighty-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 RESULTS: The 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.

Peer support to maintain psychological wellbeing in people with advanced cancer: findings from a feasibility study for a randomised controlled trial.

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 .

Discussing end of life wishes - the impact of community interventions?

BACKGROUND: Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well. METHODS: A series of presentations and workshops (the intervention) were delivered to community groups and people working within health and social care. Participants were invited to complete a three-stage follow-up survey at Baseline, Post intervention and at three months' follow-up. RESULTS: Baseline questionnaires were completed by 498 individuals. Overall, 51% reported talking with close family or friends about their end of life care and 58% reported talking about what they would like to happen after their death. There was a significant positive relationship between increasing age group and having talked about end of life wishes. The majority of participants were already comfortable in talking about end of life (overall mean score 8.28/10). Post intervention, 73% stated that they planned to take action including 61% who planned a specific conversation and 55% who planned another action. At follow-up 64% reported that they had taken some action due to the intervention, including 43% who had talked about their own end of life preferences and 39% who had taken some other action. CONCLUSIONS: Well-designed community-based interventions can be successful in prompting people to consider and discuss their end of life preferences.

Validation of the Brief Edinburgh Depression Scale (BEDS) in a Mexican population with advanced cancer in a palliative care service.

OBJECTIVE: Depression 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. METHOD: We 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. RESULT: Seventy 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 RESULTS: Major 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.

A revised model for coping with advanced cancer. Mapping concepts from a longitudinal qualitative study of patients and carers coping with advanced cancer onto Folkman and Greer's theoretical model of appraisal and coping.

OBJECTIVE: To explore whether the Folkman and Greer theoretical model of appraisal and coping reflects the processes used by people living with advanced cancer. METHODS: Interview data from a longitudinal qualitative study with people with advanced (stage 3 or 4) cancer (n = 26) were mapped onto the concepts of the Folkman and Greer theoretical model. Qualitative interviews conducted in home settings, 4-12 weeks apart (n = 45) examined coping strategies, why people thought they were effective, and in what circumstances. Interviews were coded and analysed using techniques of constant comparison. RESULTS: Mapping coping strategies clearly onto the problem- or emotion-focused elements of the model proved problematic. Fluctuating symptoms, deterioration over time, and uncertain timescales in advanced cancer produce multiple events simultaneously or in quick succession. This demands not only coping with a single event but also frequent repositioning, often to an earlier point in the coping process. In addition, there is substantial ongoing potential for some degree of distress rather than purely "positive emotion" as the final stage in the process is death with several points of permanent loss of capability in the interim. CONCLUSIONS: The Folkman and Greer theoretical model is helpful in deconstructing the discrete "problem-focused" or "emotion-focused" coping mechanisms participants describe, but its formulation as a linear process with a single, positive, outcome is insufficiently flexible to capture the evolution of coping for people with advanced cancer.

Pilot randomised controlled trial of focused narrative intervention for moderate to severe depression in palliative care patients: DISCERN trial.

BACKGROUND: Depression is poorly detected and sub-optimally managed in palliative care patients, and few trials of psychosocial interventions have been carried out in this group of patients. AIMS: A pilot trial to determine the effect of a focused narrative intervention on depression in palliative care patients when used in addition to usual care. DESIGN: Patients scoring 10 or higher on Patient Health Questionnaire-9 randomised to focused narrative intervention in addition to usual care or usual care only and followed up at 2, 4 and 6 weeks. A reduction of five points on Patient Health Questionnaire-9 was regarded as clinically significant response to treatment. SETTING/PARTICIPANTS: Palliative care patients aged over 18 recruited from hospice day care services - exclusion criteria included an estimated prognosis of 6 weeks or less, cognitive impairment and unable to understand written or spoken English. RESULTS: Out of 57 participating patients (71% female), with mean age 65.1 years (range 36-88 years), 33 patients were randomised to the intervention and 24 to usual care only. Mean Patient Health Questionnaire-9 score at baseline was 16.4. Patients receiving intervention had greater reduction in Patient Health Questionnaire-9 score at 6-week follow-up ( p = 0.04). Median survival was 157 days for intervention and 102 days for control group patients ( p = 0.07). CONCLUSION: This pilot trial suggests a focused narrative intervention in palliative care patients with moderate to severe depression can reduce depression scores more than usual care alone. Patients receiving intervention appeared to have longer survival. These results support the need for a fully powered trial.

Palliative care in dementia: a fragmented pathway?

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.

Identifying functional impairment and rehabilitation needs in patients newly diagnosed with inoperable lung cancer: a structured literature review.

PURPOSE: Patients 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. METHOD: Electronic 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. RESULTS: Thirty-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. CONCLUSIONS: Needs 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.

Gaining consensus on family carer needs when caring for someone dying at home to develop the Carers' Alert Thermometer (CAT): a modified Delphi study.

AIM: To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home. BACKGROUND: Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support. Development of an alert tool to identify carers' needs in everyday practice required identification and consensus of the priority areas of need for inclusion. DESIGN: Multi-phase modified Delphi study and instrument development. METHOD: Qualitative and quantitative data collection took place between 2011-2013 with 111 carers and 93 professionals to identify carers' needs and gain consensus on the priority areas for inclusion in the alert tool. An expert panel stage and final evidence review post-Delphi were used. RESULTS: The Delphi panels had high levels of agreement and consensus. Ten areas of carer need across two themes of 'the current caring situation' and 'the carer's own health and well-being' were prioritized for inclusion in the alert tool. An optional end-of-life planning question was included following the final stages. CONCLUSIONS: The results provide evidence of carers' needs to be assessed, areas for consideration in the education of those who support carers and someone dying at home and targeting of services, while demonstrating the usefulness and adaptability of the Delphi method.

Management of the respiratory distress symptom cluster in lung cancer: a randomised controlled feasibility trial.

BACKGROUND: Breathlessness, cough and fatigue are distressing symptoms for patients with lung cancer. There is evidence that these three symptoms form a discreet symptom cluster. This study aimed to feasibly test a new non-pharmacological intervention for the management of the Respiratory Distress Symptom Cluster (breathlessness-cough-fatigue) in lung cancer. METHOD: This was a multi-centre, randomised controlled non-blinded parallel group feasibility trial. Eligible patients (patients with primary lung cancer and 'bothered' by at least two of the three cluster symptoms) received usual care plus a multicomponent intervention delivered over two intervention training sessions and a follow-up telephone call or usual care only. Follow-up was for 12 weeks, and end-points included six numerical rating scales for breathlessness severity, Dyspnoea-12, Manchester Cough in Lung Cancer scale, FACIT-Fatigue scale, Hospital Anxiety and Depression scale, Lung Cancer Symptom Scale and the EQ-5D-3L, collected at baseline, week 4 and week 12. RESULTS: One hundred seven patients were randomised over 8 months; however, six were removed from further analysis due to protocol violations (intervention group n = 50 and control group n = 51). Of the ineligible patients (n = 608), 29 % reported either not experiencing two or more symptoms or not being 'bothered' by at least two symptoms. There was 29 % drop-out by week 4, and by week 12, a further two patients in the control group were lost to follow-up. A sample size calculation indicated that 122 patients per arm would be needed to detect a clinically important difference in the main outcome for breathlessness, cough and fatigue. CONCLUSIONS: The study has provided evidence of the feasibility and acceptability of a new intervention in the lung cancer population and warrants a fully powered trial before we reach any conclusions. The follow-on trial will test the hypothesis that the intervention improves symptom cluster of breathlessness, cough and fatigue better than usual care alone. Full economic evaluation will be conducted in the main trial.

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.

BACKGROUND: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. METHODS: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers' Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011-2014). RESULTS: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer's own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel. CONCLUSIONS: The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

Development and evaluation of culturally sensitive psychosocial interventions for under-served people in primary care.

BACKGROUND: Psychological therapy is effective for symptoms of mental distress, but many groups with high levels of mental distress face significant barriers in terms of access to care, as current interventions may not be sensitive to their needs or their understanding of mental health. There is a need to develop forms of psychological therapy that are acceptable to these groups, feasible to deliver in routine settings, and clinically and cost effective. METHODS: We developed a culturally sensitive wellbeing intervention with individual, group and sign-posting elements, and tested its feasibility and acceptability for patients from ethnic minorities and older people in an exploratory randomised trial. RESULTS: We recruited 57 patients (57% of our target) from 4 disadvantaged localities in the NW of England. The results of the exploratory trial suggest that the group receiving the wellbeing interventions improved compared to the group receiving usual care. For elders, the largest effects were on CORE-OM and PHQ-9. For ethnic minority patients, the largest effect was on PHQ-9. Qualitative data suggested that patients found the intervention acceptable, both in terms of content and delivery. CONCLUSIONS: This exploratory trial provides some evidence of the efficacy and acceptability of a wellbeing intervention for older and ethnic minority groups experiencing anxiety and depression, although challenges in recruitment and engagement remain. Evidence from our exploratory study of wellbeing interventions should inform new substantive trial designs. TRIAL REGISTRATION: Current controlled trials ISRCTN68572159.

Innovative and best models of palliative and end-of-life care - with focus on rural and remote communities.

PURPOSE OF REVIEW: The review aims to synthesize the most recent innovative models of palliative care being delivered in rural and remote locations. RECENT FINDINGS: Worldwide, as the ageing population grows, more people will require palliative care. However, equal availability of high-quality palliative care services remains a significant challenge, particularly in rural and remote communities. Innovative models of palliative care have been developed to address the projected need of people in rural and remote areas. Models that leverage the use of digital healthcare (such as telecare and Artificial Intelligence), the non-specialized palliative care workforce (such as GPs, pharmacists, and family carers), and community driven approaches have demonstrated success in achieving positive palliative care outcomes, such as reduced physical and emotional distress, and family carers feeling more supported. SUMMARY: There is a need to support people to remain within their rural and remote communities towards the end-of-life (EOL). While some models of care have been identified to help with this, there continues to be significant difficulties in access to health and social care in rural and remote areas. It is important we build on this research to understand more broadly the models of support for those living in remote and rural communities at the EOL.