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BackgroundAdvance (anticipatory) care planning (ACP) requires discussions between patients and healthcare professionals about planning for future deterioration in health. ACP improves care coordination but uptake is limited and often deferred.AimTo assess the feasibility and acceptability to patients, carers, and GPs of a primary care ACP intervention for people with incurable oesophageal, gastric, or pancreatic cancer.Design and settingA 12-month feasibility randomised controlled trial (RCT) in a Scottish Cancer Network.MethodPatients aged ≥18 years starting palliative oncology treatment were randomised 1:1 to an ACP intervention or standard care. Patients in the intervention group received an oncologist letter supporting them to request a GP review along with a patient information leaflet about ACP. Pre-specified analyses with masking included trial recruitment and retention, ACP completion, and quality-of-life questionnaires (EuroQol EQ-5D-5L and ICECAP Supportive Care Measure) at baseline, 6, 12, 24, and 48 weeks. Qualitative interviews with purposive sampling explored patient, carer, and GP experiences.ResultsOf 99 eligible participants (269 screened), 46% were recruited (n = 46) and randomised; 25 to intervention and 21 to control. By 12 weeks, 45% (n = 9/20) of the individuals in the intervention and 59% (n = 10/17) in the control group had a documented ACP plan. By 24 weeks, 30% (n = 14) had died; in the remaining participants quality of life was maintained at 24 weeks except for physical symptoms. Social norms associating ACP with dying were prevalent among 23 participants interviewed. No psychological or clinical harms were identified.ConclusionAn RCT of ACP for people with incurable cancer in primary care is feasible. Patient, carer, and GP attitudes and behaviours determined acceptability and timing of care planning.

ObjectiveWe aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills.DesignThis is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach.SettingsWe identified children aged 7–12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre.ResultsNinety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents’ management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition.ConclusionChildren learnt the skills to self-manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self-management.Trial registration numberMalaysian National Medical Research Register (NMRR-15-1242-26898).

Background: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. Aim: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. Design: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. Setting: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. Results: People who died in Scotland in 2016 ( n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. Conclusion: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

We describe the findings of a qualitative longitudinal interview study of a group of initially community-dwelling frail older people, and their informal and formal carers. We used a narrative approach to explore the role that narrative may have for people living with frailty. This has been less explored comparative to the experiences of those living with chronic illness. The frail older people told stories of their experiences that revealed three distinct shapes or typologies. These were eitherstable,unbalancingoroverwhelmed, and related to how the person managed to adapt to increasing challenges and losses, and to reintegrate their sense of self into a cohesive narrative. Each is illustrated by an individual case story. Frailty is described as both biographically anticipated yet potentially biographically disruptive as older people may struggle to make sense of their circumstances without a clear single causative factor. Findings are discussed in relation to biographical disruption and reconstruction in chronic illness and the rhetoric around ‘successful ageing’. We conclude by drawing attention to the complex individual and social factors that contribute to the experience of living with frailty in later life.

Background Stroke is the second largest cause of death worldwide. Perceived poor communication is a major cause of healthcare complaint, yet information-sharing following stroke is little-researched. Aim To describe and explore: a) carers’ experiences of professional truth-telling in the 6 months following severe stroke b) how carers process uncertainty Methods Secondary analysis of semi-structured serial interviews with carers at 6 weeks and 6 months post-stroke, using Framework approach. Population: Informal carers of severely-dependent adult patients with Total Anterior Circulation Stroke in Lothian (Scotland), including carers of patients who died during the study. Sampling: Purposive sampling for maximal variation; secondary analysis sampled geographically. Rigor: Analysis of deductive and inductive themes; discussion of emergent themes with primary data collectors; examination of deviant, negative and extreme cases. Results 20 transcripts from 15 carers were analysed, including 6 bereavement interviews. All interviews referenced truth-telling by healthcare professionals, most frequently ‘construction of truth as a process’ and ‘value of honesty/frankness’. Some carers described professionals intending to deceive. Most carers described uncertainty as something negative, using behaviours to reduce uncertainty. A minority described uncertainty as a positive or ‘window for hope’, using behaviours to increase uncertainty. Carer, professional, patient and environmental factors influenced carers’ experiences. What carers said was complex and views changed over time. Discussion and conclusions We present a new visual model of truth-telling between healthcare professionals and carers. Truth-telling is a complex, two-way process. Carers and professionals view ‘the truth’ through ‘lenses’ of their own worldviews, experiences and knowledge. Carers’ views of uncertainty affect engagement with truth-telling. The truth-telling system is open, asymmetrical and dynamic: with access of external information and a gradient of knowledge and power within each professional-carer dyad, which changes over time. Poor communication has important fall-out. Our visual model could help professionals approach information-sharing following severe stroke more confidently.

BACKGROUND: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care.METHODS: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions.RESULTS: Data linkage (n= 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. "Palliative care" had connotations of treatment withdrawal and imminent death.INTERPRETATION: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term "palliative care" should be avoided or reframed.

In the United Kingdom, there are acknowledged short comings in allergy care provision for patients seen in primary care. There is a lack of allergy training for healthcare professionals and this leads to inappropriate referrals to the limited number of allergy specialists. The primary aims of this study are to assess the feasibility of delivering and evaluating a new nurse-led allergy service in primary care, measured by recruitment, retention and quality of life. This is a single arm feasibility trial in which up to 250 participants referred to the nurse-led allergy clinic will receive the intervention and complete 6–12 weeks follow-up before being referred back to their usual care. Primary outcomes for this study will be establishment of clinics, recruitment and retention rates, and estimates of change in disease-specific quality of life measures. Secondary outcomes will be acceptability of the new service to participants/carers and healthcare professionals. A sample of participants and professional stakeholders will take part in more in-depth semi-structured qualitative interviews. Data from this feasibility trial will be used to inform plans for a pilot randomised controlled trial of nurse-led allergy clinics.

Background: Qualitative interviews allow participants to articulate their views and experiences in their own words. [Taylor M. 2005] We are seeking to understand end-of-life considerations in COPD patients in Malaysia. This necessitates interviewing patients in GOLD stage 4, many of whom have intractable breathlessness. Aim: To explore the process of interviewing breathless patients. Method: Our qualitative study uses audio-recorded semi-structured interviews, which are transcribed. Data is analysed thematically. Interviewer field notes record observations of the interview process and challenges of data collection. Results: The following themes emerged: (1) participant disability; (2) environmental noise; (3) participant isolation and (4) interview technique. Participants’ symptoms require balancing of the longer time needed to converse and their inability to speak for long. This may require the use of short multiple interviews and additional input from carers. Ventilation machines such as oxygen concentrators and fans add to environmental noise making it difficult to hear and record voices. Participants’ disabilities require interviews to be conducted at their homes. The social isolation does not allow for ‘recruitment by snowballing’. The interviewer also observed changes in interview techniques towards using close-ended questions and the need for patience to allow participant time to answer. Conclusion: There are multiple challenges in interviewing breathless COPD participants, which may be addressed with prior preparation and proper handling of time. This study was sponsored by the NIHR RESPIRE Global Health Research Unit and is written on behalf of the RESPIRE collaboration.

Background: Self-management of asthma improves asthma control and reduces exacerbations. Children are expected to independently self-manage asthma, as they get older. However, the transition from parental to independent self-management among children remains unclear. Aim: To explore the views of children with asthma and their carers regarding self-management of asthma. Methods: We identified children aged 7-12 years, diagnosed with asthma from seven suburban primary schools in Malaysia. We used purposive sampling and conducted focus groups supplemented by interviews using a semi-structured topic guide in participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo, and analysed using a grounded theory approach. Results: 99 participants (46 caregivers, 53 children: 34 Malays, 45 Indians, 20 Chinese) contributed to 22 focus groups and 7 interviews. Carers’ view and actions emerged as an important influencer. Children mirrored their carers’ actions and views but in parallel learnt from their own experiences, and gained more confidence to independently self-manage. External influences e.g. support from school and healthcare also played a role in the transition. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. Conclusion: Children gain skills to independently self-manage asthma based on their experiences and influences of surrounding people. Thus, interventions to improve self-management of childhood asthma should include childrens’ networks and incorporate elements based on good understanding of cultural beliefs in the community. Funding: NIHR RESPIRE

Objective Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care. Design Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity. Participants We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life. Settings An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic. Results We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of ‘growing old’. Many used a ‘day-to-day’ approach to self-management that hindered engagement with advance care planning and open discussions about future care. ‘Palliative care’ and ‘dying soon’ were closely related concepts for many patients, carers and professionals, so rarely discussed. Conclusions Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

Background: Liver disease is an increasing cause of death worldwide but palliative care is largely absent for these patients. Aim: We conducted a feasibility trial of a complex intervention delivered by a supportive care liver nurse specialist to improve care coordination, anticipatory care planning and quality of life for people with advanced liver disease and their carers. Design: Patients received a 6-month intervention (alongside usual care) from a specially trained liver nurse specialist. The nurse supported patients/carers to live as well as possible with the condition and acted as a resource to facilitate care by community professionals. A mixed-method evaluation was conducted. Case note analysis and questionnaires examined resource use, care planning processes and quality-of-life outcomes over time. Interviews with patients, carers and professionals explored acceptability, effectiveness, feasibility and the intervention. Setting/participants: Patients with advanced liver disease who had an unplanned hospital admission with decompensated cirrhosis were recruited from an inpatient liver unit. The intervention was delivered to patients once they had returned home. Results: We recruited 47 patients, 27 family carers and 13 case-linked professionals. The intervention was acceptable to all participants. They welcomed access to additional expert advice, support and continuity of care. The intervention greatly increased the number of electronic summary care plans shared by primary care and hospitals. The Palliative care Outcome Scale and EuroQol-5D-5L questionnaire were suitable outcome measurement tools. Conclusion: This nurse-led intervention proved acceptable and feasible. We have refined the recruitment processes and outcome measures for a future randomised controlled trial.

BackgroundDespite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals.MethodsWe recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need.Results14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified ‘normative’ needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were ‘felt’ by patients and carers but articulated in response to the researcher's questions rather than actively ‘expressed’. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill.ConclusionsIn contrast to professionally-defined ‘normative’ needs, patients rarely perceived themselves as needy, accepting their ‘felt’ needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to ‘express’ needs that are amenable to help without disturbing the adaptive equilibrium they have achieved.Trial registration numberNCT01650480.

CONTEXT: Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care.OBJECTIVES: To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need.METHODS: We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland.RESULTS: The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying.CONCLUSION: These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.

BackgroundThough the majority of people could benefit from palliative care before they die, most do not receive this approach, especially those with multimorbidity and frailty. GPs find it difficult to identify such patients.AimTo refine and evaluate the utility of a computer application (AnticiPal) to help primary care teams screen their registered patients for people who could benefit from palliative care.Design and settingA mixed-methods study of eight GP practices in Scotland, conducted in 2016–2017.MethodAfter a search development cycle the authors adopted a mixed-methods approach, combining analysis of the number of people identified by the search with qualitative observations of the computer search as used by primary care teams, and interviews with professionals and patients.ResultsThe search identified 0.8% of 62 708 registered patients. A total of 27 multidisciplinary meetings were observed, and eight GPs and 10 patients were interviewed. GPs thought the search identified many unrecognised patients with advanced multimorbidity and frailty, but were concerned about workload implications of assessment and care planning. Patients and carers endorsed the value of proactive identification of people with advanced illness.ConclusionGP practices can use computer searching to generate lists of patients for review and care planning. The challenges of starting a conversation about the future remain. However, most patients regard key components of palliative care (proactive planning, including sharing information with urgent care services) as important. Screening for people with deteriorating health at risk from unplanned care is a current focus for quality improvement and should not be limited by labelling it solely as ‘palliative care’.

Objectives: This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive\ud and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions.\ud \ud Methods: A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individual’s account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential \ud triggers.\ud \ud Results: Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These\ud reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers. \ud \ud Conclusions: Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic\ud assessment when a trigger is detected.

Heart failure is a common cause of death and causes significant morbidity in its advanced stage. As the illness progresses, lack of physical health may overshadow psychological, social and existential distress.To explore the impact of advanced heart failure on other aspects of the patients' lives.We undertook a secondary analysis of interview data generated for a qualitative longitudinal study looking at the experiences of patients with advanced heart failure, and their family and professional carers. A sub set of patient, family and professional carer interview transcripts was selected for thematic analysis. The sample was chosen to reflect a range of age, gender and social situations.Eighteen transcripts from five cases were examined. Three key themes were identified: 1) social isolation; 2) psychological issues and coping strategies; and 3) existential concerns.Psychosocial and existential issues are important aspects of the lives of patients suffering from heart failure. Holistic management should encompass an awareness of exploration and support for these dimensions.

Coordination of care for individuals with advanced progressive conditions is frequently poor.To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life.A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service.Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed.Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators.Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

Background. Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. Objectives. To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. Methods. A two-phase mixed methods action research project. An electronic Cancer Ongoing Review Document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. Results. The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. Conclusions. Anticipatory cancer care from diagnosis to cure or death, ‘in primary care’, is feasible in the UK and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions.

Graphical displays of investigations are increasingly used in clinical care. Summaries of medical records for research or clinical review purposes can generate unmanageably large amounts of data, which may be helpfully summarised and displayed using timelines. During a prospective study of cancer care in primary care, care timelines were generated in Microsoft Visio, using data collected retrospectively from general practice records. Data from primary and secondary care consultations were included. Thirteen timelines were created, which proved valuable in summarising and analysing the data concerning the cases studied. Timelines provide a clear, concise way of displaying large amounts of diverse data, although some selectivity is required to facilitate interpretation. Generation of timelines in the software was time consuming: if they could be automatically generated within clinical IT systems, they would enable clinicians to generate useful summaries of care of complex cases, facilitating care reviews.

General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care.The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings.The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous.This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.

BACKGROUND: General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care.METHOD: The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings.RESULTS: The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous.CONCLUSION: This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.

Objective: To understand factors influencing the process of adjustment to a diagnosis of glioma. Methods: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. Results: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. Conclusions: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope. Copyright © 2012 John Wiley & Sons, Ltd.

Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD. Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives. Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients. Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9. Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a "way of life" rather than an "illness." Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a "chaos narrative" of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population. Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.

BackgroundAdvance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging.AimTo assess the feasibility of implementing advance care planning in UK primary care.Design of studyMixed methods evaluation of a pilot educational intervention.SettingFour general practices in south-east Scotland.MethodInterviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK.ResultsEnd-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a `good death'. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of `tick-box' approach. Following the workshop, participants' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care.ConclusionA clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes.

The objectives of this review were to assess the methods and approaches applied to end-of-life cancer research based on papers focusing on approaches or methodological issues related to seeking the views of people affected by terminal cancer. A comprehensive search of 10 databases (January 1980-February 2004) was undertaken. References were screened, quality assessed and data extracted by two reviewers. Analysis followed a meta-narrative approach. Fifteen papers were included. They discussed 'traditional' approaches, such as focus groups, interviews, surveys, as well as innovative approaches allied to the arts. They reveal that mixed methods are gaining popularity. The emotional demands placed on researchers and the ethical issues involved in this research area were also discussed. We concluded that researchers should embrace innovative approaches from other areas of social science, such as the use of arts-based techniques. This may facilitate recruitment of the hard-to-reach groups and engage with experiences that may be otherwise difficult to verbalize. Although researching the needs of the dying carries challenges, these are not the exclusive domain of the cancer field. This study reveals that diverse methods, from research-based drama to postal questionnaires, can enhance end-of-life research. However, this review reveals the need for more methodological work to be undertaken and disseminated.

Background The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Such information is lacking for frail older people approaching death, but could highlight how a palliative approach might be relevant for this population. Methods Cognitively intact, community dwelling adults considered to be moderately or severely frail were recruited from a medical day hospital. Those recruited nominated an informal carer and case-linked professional. Qualitative in-depth serial interviews with older people and their informal carers were conducted over an 18 month period, and single interviews with case-linked healthcare professionals. Interviews were recorded, transcribed and narrative analytical techniques were used to compile case studies. Results Thirty-four participants (13 patients, 13 informal carers and 8 healthcare professionals) completed 40 individual, 14 joint and 8 professional interviews. Five patients died during the study. The analysis highlighted a dynamic balance between losses and adaptations. Three typical patterns of multi-dimensional change emerged. 1) Maintenance of psychological and existential well-being with a gradual social decline mirroring the physical deterioration. 2) a gradual reduction in both psychological and existential well-being. 3) a marked downturn in social, psychological and existential well-being before death. Frail older people sustained their well-being through maintaining a sense-of-self, garnering support from carers and community structures, and focusing on living from day to day. Their well-being lessened when they lost their sense-of-self, feeling alienated from the world, and confused over the cause of their circumstances. Death remained distant and ‘undiagnosed’. Social and community frameworks were essential for supporting their well-being. Conclusions Multidimensional end-of-life trajectories for frail older people differed from those with other conditions. Alleviating psychological, social and existential distress should be a priority of care as frail older people reach the end of life. The current palliative care model is problematic for this group. Care should address future concerns and not necessarily involve a focus on death or place of death.

Background Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. Methods Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. Results Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. Conclusions The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals’ communication with each other and help may make identification and management of patients easier. Electronic supplementary material The online version of this article (doi:10.1186/s12875-015-0391-x) contains supplementary material, which is available to authorized users.

Background: Approximately 600,000 people die in the UK annually, usually after months or years of increasing debility. Many patients with advanced conditions are not identified for appropriate support before they die because they are not seen as having "palliative" care needs. General practice information technology systems can improve care by identifying patients with deteriorating health so that their healthcare needs can be reviewed more systematically and effectively. The aim was to develop and test a computerised search of primary care records in routine clinical practice as a tool to improve patient identification for a palliative care approach. Methods: An iterative process of search design and testing followed by implementation and extended testing of the search output in clinical practice. A three-phase feasibility study: developing a computerised search, determining its ability to identify patients with deteriorating health from any advanced condition, and assessing how primary care clinicians use the results to improve patient care. The setting was twelve primary care teams in two Health Boards in Scotland. Results: The search identified 0.6-1.7 % of patients in each practice who were not already on the palliative care register. Primary care clinicians judged that 30-60 % of these patients were at risk of dying or deterioration over the next 6-12 months. The most common action taken by GPs was to start an electronic anticipatory care plan. Conclusions: It is possible to significantly improve the identification of patients for palliative care needs assessment using a computerised search however barriers remain to GPs' finding it acceptable. Time-efficient systems were important as was a generic tool for anticipatory care planning not linked to 'palliative' care.

Objectives Loss of self and the transition to patient-hood have been widely discussed in relation to the experience of advanced illness. Individuals however often maintain identities or selves beyond those demanded by the circumstances of being a patient. This study explores the presentation of this personal identity and interactions between intrinsic and extrinsic elements that support or threaten its maintenance. In particular, this study examined the impact of uncertainty on the representations of self and the part played by the patient's health care professionals and the systems in which they are embedded, in limiting or reinforcing its effects. Methods Complementary methods of ethnographic observation and serial narrative interviews were adopted to explore both the lo"cal social and health care context and the changing presentation of self by patients with advanced multimorbidity, chronic illness, and cancer. In total, 36 interviews were undertaken with 16 patients. Analysis was guided by concepts of time and place, combining contextual data with the unfolding patient narrative. Results Good pain and symptom control was a necessary, but not sufficient, condition for the maintenance of a personal identity. Essential agentic elements included knowledge of appropriate and immediate sources of help. Also important were a sense of control achieved through a shared understanding with health care professionals of the condition and active management of uncertainty. In addition, the maintenance of self depended on keeping a connection with aspects of life associated with a pre–illness identity. Critically, this self was contingent on external recognition, acknowledgement, and validation. Conclusion Professional relationships that focus solely on the ‘person as patient’ may be insufficient for patients’ needs. Health care professionals should seek to recognize and acknowledge the personal identity that may be critical to their sense of self-worth. Through an ongoing relationship guiding the patient through the uncertainties they face, health care professionals may play an essential role in sustaining the ‘patient as person’. Statement of contribution What is already known on this subject? Loss of self or personal identity occurs in a range of serious conditions. The sick self is incorporated in a process of identity reconstruction. Uncertainty is an inherent aspect of serious and advanced illness. Unmanaged uncertainty results in a range of negative psychological consequences that contribute to the loss of personal identity. Information and communication with health care professionals help patients manage uncertainty. What does this study add? Sufferers may retain a personal identity continuous with a pre-illness self using internal and external resources. The pre-illness self may be subsumed by the patient self especially at times of transition and maximum uncertainty. Acknowledgement and facilitation by health care professionals can enable the preservation of the pre-illness self.

Background: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models. Aim: To describes how patients and carers view health and social care in the last year of life. Methods: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis. Results: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent. Conclusions: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.

Background Qualitative longitudinal research is an evolving methodology, particularly within health care research. It facilitates a nuanced understanding of how phenomena change over time and is ripe for innovative approaches. However, methodological reflections which are tailored to health care research are scarce. This article provides a synthesised and practical account of the advantages and challenges of maintaining regular telephone contact between interviews with participants in a qualitative longitudinal study. Methods Participants with metastatic colorectal cancer were interviewed at 3 time points over the course of a year. Half the group also received monthly telephone calls to explore the added value and the feasibility of capturing change as close to when it was occurring as possible. Results The data gathered from the telephone calls added context to the participants’ overall narrative and informed subsequent interviews. The telephone calls meant we were able to capture change close to when it happened and there was a more evolved, and involved, relationship between the researcher and the participants who were called on a monthly basis. However, ethical challenges were amplified, boundaries of the participant/researcher relationship questioned, and there was the added analytical burden. Conclusions The telephone calls facilitated a more nuanced understanding of the illness experience to emerge, when compared with the interview only group. The findings suggest that intensive telephone contact may be justified if retention is an issue, when the phenomena being studied is unpredictable and when participants feel disempowered or lack control. These are potential issues for research involving participants with long-term illness.

BACKGROUND: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.METHODS: We integrated findings from three data sources - a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.RESULTS: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a 'carer' - preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person's condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.CONCLUSIONS: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

Introduction Effective care planning and coordination is strongly associated with fewer hospital admissions in and out-of-hours. 1,2 Many people who die are not being identified consistently for such pro-active care. 3,4 Clinical indicators type tools (SPICT™ and GSF-PIG) help professionals identify people but more systematic screening is needed. 5 Aim To develop an electronic tool using GP surgery software to output a list of patients who might benefit from anticipatory palliative care. Methods Our prototype search was installed in GP software. It permitted “combination searches” generating a detailed set of outputs. The search was run 35 times in 10 practices over 9 months with iterated refinements to remove over-generation. The researcher attended 31 team meetings and conducted qualitative observations. The palliative care lead in each practice was interviewed. Results Over 2,500 patients were identified. After refinement, the search reliably identified around 0.7% patients per practice. Practice teams used the list to prompt patient/carer reviews and often started or updated a Key Information Summary: the Scottish electronic, anticipatory care planning record. Running the searches in practices enabled participating teams to integrate them into their normal working routines. Conclusions This ‘proof of concept’ study shows that systematic electronic searches of GP practice lists complements case-based identification by helping primary care teams identify more patients and carers who stand to benefit from a palliative care needs assessment, anticipatory care planning and having current information accessible out-of-hours. It informs future development of electronic primary and secondary care records across the UK. References Mason BL, et al . Coordination of care for people at risk of dying in the next 12 months: a multi-site prospective study and consensus seeking exercise. NIHR Service Delivery and Organisation programme: London; 2013 Addington-Hall J, et al . Variations in out of hours end of life care provision across primary care organisations in England and Scotland. Final Report, in NIHR Service and Delivery Organisation Programme, Southampton, UK; 2013 Scottish Government, The primary medical services directed enhanced services (Scotland) 2012 palliative care H.a.S.C.I. Directorate, Editor. NHS Scotland: Edinburgh; 2012 Murtagh FE, Bausewein C, Verne J, et al . How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med 2014; 28 (1):49–58 Mason BL, Boyd K, Murray SA, et al . Developing a computerised search to help UK General Practices identify more patients for palliative care planning: a feasibility study. BMC Fam Pract 2015; 16 (1):99

Background: Cerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease. Methods: We recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the illness: before receiving a formal diagnosis, at the start of initial treatment, after initial treatment was completed and at six months’ follow-up; caregivers were also interviewed postbereavement. We interviewed the patients’ general practitioners once, after treatment had been completed. We transcribed the interviews and analyzed them thematically using the constant comparative method of a grounded theory approach. Results: We conducted in-depth interviews with 26 patients, 23 of their relatives and 19 general practitioners. We saw evidence of physical, social, psychological and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment. Each patient’s individual course varied according to other factors including the availability of support and individual and family resources (e.g., personal resilience and emotional support). Interpretation: There are practical ways that clinicians can care for patients with glioma and their caregivers, starting from before a diagnosis is confirmed. Understanding the trajectories of physical, social, psychological and existential well-being for these patients allows health care professionals to predict their patients’ likely needs so they can provide appropriate support and sensitive and effective communication.

BACKGROUND:Despite a well-recognised burden of disabling physical symptoms compounded by co-morbidities, psychological distress and social isolation, the needs of people with severe chronic obstructive pulmonary disease (COPD) are typically poorly addressed. AIM:To assess the effectiveness of interventions designed to deliver holistic care for people with severe COPD. METHODS:We searched 11 biomedical databases, three trial repositories (January 1990-March 2012; no language restrictions) and contacted international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions to support patients with severe COPD in any healthcare context. The primary outcome was health-related quality of life (HRQoL). Quality assessment and data extraction followed Cochrane Collaboration methodology. We used a piloted data extraction sheet and undertook narrative synthesis. RESULTS:From 2,866 potentially relevant papers, we identified three trials: two RCTs (from United States and Australia), and one CCT (from Thailand): total 216 patients. Risk of bias was assessed as moderate in two studies and high in the third. All the interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the USA, or co-ordinating inpatient care in Australia). HRQoL improved significantly in the Thai CCT compared to the (very limited) usual care (p

To understand factors influencing the process of adjustment to a diagnosis of glioma.Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement.High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness.Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope.

The following quotes represent goals that most palliative nurses and researchers aspire to

Interviewing patients over the course of their illness can give a much better picture of their experience than single interviews, but the approach is rarely used. Scott Murray and colleagues explain how to get the most from it