bluuebunny/crossref_metadata_2025 huggingface dataset:
A LIVING COMMUNITY PRESENCE: TRAINING OF END OF LIFE CARE VOLUNTEERS
Authors: Doyle R , Nolan K , Gambles M , Roberts A , Smeding R , Mason S , Ellershaw JE
Published: February 2014

Introduction

In British healthcare the majority of people die in hospitals. Volunteering in this setting focuses on fundraising and practical tasks but excludes bedside care. OPCARE 9, an EU-FP7 funded project, highlighted how many European countries have utilized volunteers in caring for dying patients, providing support for patients and families, whilst re-introducing a valuable sense of ‘community’.

Aim(s) and method(s)

This project sought to distil existing international expertise and experience to develop and evaluate a Care of the Dying Volunteer Programme to support patients in the last hours or days of life in a hospital setting (North West of England). A bespoke training program, reflecting those delivered in the Netherlands, Germany and Italy, was developed for the UK, to enhance volunteer's existing skills and personal qualities by drawing on their life experiences. A mixed methods approach was engaged where, in addition to volunteers' longitudinal reflective assessments of the training and experience of providing support, clinical staff and patients' relatives provided qualitative and quantitative feedback where volunteers were engaged.

Results

19 volunteers completed the training programme and provided support to 14 patients in 6 wards. Data demonstrates that volunteers' confidence improved, that they found the training interesting, enjoyable and the content fit for purpose. Clinical staff welcomed volunteers on the whole, as did relatives, identifying the volunteers as filling an important “gap” in support.

Conclusion(s)

The training program proved effective in preparing volunteers. It has now been further developed in response to the findings of this research, and could be replicated in other clinical sites.
PALLIATIVE CARE FOR PATIENTS WITH ADVANCED HEART DISEASE: A RANDOMISED TRIAL OF EARLY VERSUS DELAYED INTERVENTION
Authors: Highet G , Reid J , Cudmore S , Robertson S , Hogg K , Murray S , Boyd K , Denvir MA
Published: February 2014

Introduction

Patients with advanced heart disease have a poor prognosis despite optimal disease-focused therapy, and rarely receive coordinated holistic assessment and care planning.

Aim(s) and method(s)

This project integrated professional and users' views into designing a complex intervention for people with advanced heart disease. The trial combines holistic needs assessment initiated by cardiology specialists with anticipatory care planning and nurse-led care coordination in the community. In the development phase, baseline interviews with healthcare professionals (11) and 2 focus groups comprising 12 patients and 5 carers were conducted. Data were transcribed and analysed for key themes important to the rationale and design of the proposed trial. Participants refined an established, patient-held “Future Care Plan”. Recommendations about integration into routine practice informed the final study design.

Results

Patients and carers highlighted fragmentation of services, difficulty accessing specialist care and inadequate time and opportunities for future planning. Inclusion of a generic patient-held plan with prompts about current and future priorities offered as part of ongoing support from key professionals was welcomed. Professionals highlighted challenges related to uncertainty of prognosis, explaining mortality-risk to patients, starting to introduce palliative care goals and continuity of care within and across settings. They endorsed patient selection based on prognostic and clinical indicators combined with specialist-initiated care planning continued in primary care and linked to existing patient record systems.

Conclusion(s)

A diverse group of patients, carers and healthcare professionals identified specific concerns about improving care for people with advanced heart disease and continue to inform a feasible, responsive randomised trial that is now recruiting patients.
IS END OF LIFE CARE AT HOME FOR PEOPLE WITH DEMENTIA POSSIBLE? VIEWS OF FAMILY CARERS
Authors: Davies N , Rait G , Iliffe S
Published: February 2014

Introduction

People with dementia can become confused and anxious in new environments, hospitals can be hazardous places, and transitions between settings at the end-of-life can be harmful. These reasons, together with the knowledge that most people would rather die at home, mean that there is a policy shift towards supporting people with dementia die at home.

Aim(s) and method(s)

The aim was to explore family carers' views of quality end-of-life-care for people with dementia. 46 in-depth interviews were carried out with family carers who were bereaved or currently caring for someone with dementia. Interviews were analysed using thematic and narrative analysis methods.

Results

Preliminary findings show families have many concerns caring for a relative in the community. The organisation of services and systems is difficult to understand and they are often left to navigate the systems alone, and become the bearer of responsibility. Some felt that having a cancer diagnosis as well as dementia increased the level of specialist services available, in particular Macmillan nurses. Families needed to trust care assistants as they may be left alone with the person with dementia and may provide intimate personal care. Finally, an individual point of contact such as a GP, social worker or admiral nurse was crucial, for information, reassurance and support, but this was often lacking.

Conclusion(s)

Home care is possible but families need a lot of support. Not all palliative care services are easily accessible for people with dementia and those services available are difficult to find without guidance.
HOW PREPARED ARE INFORMAL CARERS OF PATIENTS WITH ADVANCED COPD AND WHAT ARE THEIR SUPPORT NEEDS? BASELINE DATA FROM AN ONGOING LONGITUDINAL STUDY
Authors: Farquhar M , Ewing G , Moore C , Gardener AC , Butcher H Holt , White P , Grande G ,   on behalf of the Living with Breathlessness study team
Published: February 2014

Introduction

Advanced chronic obstructive pulmonary disease (COPD), a chronic progressive condition, can lead to high informal carer-burden. We lack good evidence on the needs of carers of patients with advanced non-malignant disease and how best to support them; particularly longitudinal evidence.

Aim(s) and method(s)

To describe preparedness to care and support needs of informal carers of patients with advanced COPD at baseline in an ongoing longitudinal study.

Mixed method baseline interviews with a cohort of approximately 100 informal carers of patients recruited from a primary care population base (East of England). The cohort forms part of the Living with Breathlessness study: a mixed-method 18-month Longitudinal Interview Study (3-monthly semi-structured interviews; flexible methodology to capture changing patient function, need and service-access, and carer need and support). Quantitative carer measures include Preparedness for Caregiving Tool and Carers Support Needs Assessment Tool analysed using descriptive statistics. Purposively sampled qualitative data analysed using framework approach and multiple-perspective case study methodology.

Results

The results will describe the preparedness of informal carers to care for patients with advanced COPD and the relationship between preparedness and carer support needs.

Conclusion(s)

The Living with Breathlessness study aims to provide new evidence on the trajectories of health and social care needs and service access of patients with advanced COPD and their informal carers to inform a new framework for care and support in advanced non-malignant disease.
A QUALITATIVE STUDY TO EVALUATE THE PROCESS OF IDENTIFYING PATIENTS AT THE END-OF-LIFE IN PRIMARY CARE
Authors: Pocock LV , Wye L , Purdy S
Published: February 2014

Introduction

Identification of patients at the end-of-life is the first step in the care planning pathway and many general practices now have palliative care registers. There is evidence these registers largely comprise of patients with cancer, but little is known about the way in which they are populated.

Aim(s) and method(s)

To explore GPs' views about the process of identifying patients at the end-of-life and their inclusion on palliative care registers. Methods: A qualitative study with twelve audio-recorded, semi-structured interviews. All interviews were taped and transcribed and data was analysed thematically. The participants were qualified GPs working within practices in three counties in South West England.

Results

Most general practices included in the study now have an end-of-life register, although these include mainly cancer patients. Participants discussed the challenges in identifying patients with a non-malignant diagnosis and felt that having end-of-life discussions with these patients was more difficult. Few of the GPs interviewed utilised formal prognostic tools to assist in this identification process. The participants would like more guidance regarding prognosis from secondary care colleagues to facilitate advance care planning. District nurses are central to the process of identifying and managing patients at the end-of-life.

Conclusion(s)

GPs struggle to prognosticate in non-malignant disease. Cultural change, in the healthcare professions and in the wider public, is necessary before discussion about death and dying from non-malignant disease becomes normal. Further education and training is required, ideally from undergraduate level, to enable doctors to identify patients appropriately and begin these conversations.
LIVING WITH CHRONIC HEART FAILURE
Authors: Flynn S , Ellery S , Mason L
Published: February 2014

Introduction

Patients with chronic heart failure (CHF) have a prognosis worse than many cancers. Despite national policy, those receiving specialist palliative care (SPC) remain low. This study provides an updated overview of CHF symptom burden as well as carer experience.

Aim(s) and method(s)

33 out-patients with NYHA class III/IV CHF were randomly selected from routine cardiology follow-up and completed the Minnesota Living with Heart Failure Questionnaire (MLHFQ) and the Hospital Anxiety and Depression Scale (HADS). Additional questions regarding advance care planning (ACP), community support and integration of SPC were asked. 16 informal carers completed a Modified Carer Strain Index (CSI).

Results

MLHFQ revealed high physical symptom burden, particularly: difficulty with hobbies (82%), dyspnoea (82%), needing rest (81%), restricted walking (79%), fatigue (79%), worry (73%) and difficulty sleeping (67%), with nearly half rating dyspnoea and fatigue as severe. 39% had anxiety and 24% depression as measured by the HADS. Evidence of ACP was poor (13%). 52% were in receipt of professional social support, 82% informal support and none received community SPC. Mean CSI score was 7 (of possible 26) with 63% having disturbed sleep, 63% finding the changes in the patient upsetting, and 56% feeling overwhelmed. All participants were supportive of an integrated SPC and CHF out- patient service.

Conclusion(s)

This study confirms that despite best practice recommendations, there remains unmet SPC need for patients/carers with CHF. Improved integration of services is needed to address both symptom burden and quality of life as well as ACP uptake; ultimately enhancing end of life care.
OPTIMISING PALLIATIVE CARE FOR FRAIL ELDERS IN COMMUNITY SETTINGS; PREFERENCES FOR CARE AND PALLIATIVE OUTCOMES IN THE LAST MONTHS OF LIFE
Authors: Evans CJ , Bone A , Morgan M , McCrone P , Gaoi W , Wright J , Hall S , Gomes B , Gordon E , Lindsey F , Bruni C , Taherzadeh S , Higginson IJ ,   on behalf of OPTCare Elderly
Published: February 2014

Introduction

People are living longer and increasingly die with frailty and complex co-morbidities. Many suffer unnecessarily because of limited recognition of palliative care needs, aggressive management and under treatment. Palliative care is advocated for frail older people with non-malignant conditions to improve assessment and treatment, but with little evidence of effectiveness.

Aim(s) and method(s)

Aim to determine the preferences for care and palliative outcomes for frail elders by place of death (own home, care home or hospital). Post-bereavement survey (QUALYcare) to carers (n=882) of people aged over 75 years or over via ONS. Survey examines quality of EoLC, preferences and palliative care outcomes for frail elders (malignant and non-malignant conditions). Data analysis using descriptive and inferential statistics to compare by place of death frequency of attainment of preferred place of death, prevalence of palliative outcomes, and formal and informal service use (no. and %, with 95% CI, Chi2 )

Results

443 (50.2%) participants mainly a son/daughter (68.2%). Majority deceased widowed (53.5%) and lived alone (41.8%). Most resided last months at home (42.9%), or care home (nursing home 22.8%; residential 12%). 35.7% died in hospital, mostly transferring from own home ()n=74/190) or a residential home (n=25/53), but few from nursing homes (15/101). Nearly half who died in hospital resided there for 1–4 weeks (45.6%).

Conclusion(s)

An opportunity to improve palliative care is responsiveness to timely discharge from hospital for people to die in preferred community settings. Nursing homes care for the majority of people until death, but residential care homes with no onsite nursing require greater support.
MEASURING THE QUALITY OF END OF LIFE USING ICECAP SCM: FEASIBILITY AND ACCEPTABILITY
Authors: Bailey CJ , Orlando R , Kinghorn P , Armour K , Perry R , Coast J
Published: February 2014

Introduction

Measuring the quality of end-of-life with generic health instruments has received criticism amongst palliative care researchers. The ICECAP Supportive Care Measure (ICECAP-SCM) is a self-complete questionnaire developed to evaluate palliative and supportive care. Using attributes involving autonomy, love, physical and emotional suffering, dignity, support and preparation, the instrument measures patients' wellbeing in terms of ‘capability’ when they are receiving supportive care.

Aim(s) and method(s)

To determine the feasibility of completion and the acceptability of the ICECAP-SCM amongst people receiving supportive care and their potential proxies. Using the ‘think-aloud’ technique, participants were asked to verbalise their thoughts whilst completing the ICECAP-SCM. This was followed by an exploration of the process of completion. All interviews were transcribed verbatim. Constant comparative methods were used to analyse the semi-structured data.

Results

Measuring the end of life is complex due to the ‘adaptive normality’ that patients experience as their illness trajectory changes. Despite this, the attributes of the ICECAP-SCM offer a comprehensive overview of quality of end of life to capture and measure capability. It is easy to conduct in a hospice setting and easily understood by participants, including patients who are very near the end of life. It is perceived as an appropriate measure by patients receiving supportive care and one that is able to accurately and appropriately record their quality of life.

Conclusion(s)

ICECAP-SCM is feasible for use at end of life and acceptable to patients and proxies. Subject to further investigation of validity and reliability, it appears to offer a promising means of evaluating interventions at the end of life.
“YOU ONLY HAVE ONE CHANCE TO GET IT RIGHT”: CARING AT HOME FOR A FAMILY MEMBER WITH TERMINAL CANCER
Authors: Totman J , Pistrang N , Smith S , Hennessey S , Martin J
Published: February 2014

Introduction

Relatives looking after a terminally ill family member at home often face numerous challenges. Studies into relatives' experiences of home caregiving have been criticised for their descriptive nature and lack of theoretical underpinnings.

Aim(s) and method(s)

This qualitative study explored the emotional challenges faced by home caregivers, and their experiences of professional services, from the perspective of existential psychology. Semi-structured interviews were conducted with 15 recently bereaved relatives who had cared at home for a family member dying of cancer. Transcripts were analysed thematically using the Framework approach.

Results

Participants' experiences of being a caregiver and of professional support were highly varied. The analysis generated 14 themes which were organised into a framework based on Yalom's (1980) four “existential conditions”: responsibility (e.g. “being the linchpin of care”; “you only have one chance to get it right”); isolation (e.g. “being on my own”, “being held in mind”); death (e.g. “knowing but not knowing”); and meaningfulness (e.g. “finding meaning and solace in caring”). Professionals' words and actions carried great significance for relatives at this time, impacting on their experiences with respect to all four thematic categories. Healthcare services were seen as influential in helping and, sometimes, hindering them in meeting the challenges they faced.

Conclusion(s)

This study highlights the crucial importance for home caregivers of reliable and proactive professional support. Existential psychology provides a theoretical perspective from which to understand some of the complex emotional challenges home caregivers face and a framework which may usefully inform clinical practice and future research.
PALLIATIVE CARE IN THE YOUNG PERSON'S COMMUNITY: SUPPORT FOR SCHOOLS
Authors: Craig F , Kelly P , Boden C , Samuel J
Published: February 2014

Introduction

Being part of a school community, where young people develop peer relationships and experience a sense of their value in society, is integral to childhood/young adulthood. Supporting terminally ill young people to maintain a role within this community can be crucial to their overall well –being. Essential to this is the ability of school staff to support their physical and psychological health while in school, yet little is known about the support they require to facilitate this.

Aim(s) and method(s)

We utilised survey methods to investigate the confidence and support needs of school staff.

Results

78% of the target population completed the survey. In discussions with students, staff were confident ascertaining concerns about the effect of their condition on schooling and participation in activities, but less confident discussing concerns about illness, death and dying. In discussions with parents, staff were relatively confident exploring concerns the child might have about illness and dying and symptoms they may experience. However, they were less confident discussing the option of the child staying at school. Respondents identified meetings in school with Health Care Professional's, the availability of telephone advice during the school day and written medical plans amongst the most valuable forms of support.

Conclusion(s)

School staff are confident when talking to parents/students about symptom progression and impact on education, but are uncertain what this means in terms of school participation. HCP's must work directly with schools to provide real-time advice and written plans, to enable our patients to be supported within their school community.
USING ANTHROPOLOGICAL METHODS TO UNDERSTAND STAFF EXPERIENCES OF TERMINAL AGITATION IN A HOSPICE
Authors: Tempest E
Published: February 2014

Introduction

Terminal agitation is a well recognised phenomenon. Unlike other symptoms at the end of life its pathophysiological basis is not well understood. Its presence may be disputed and it is therefore of interest because of its subjective nature.

Aim(s) and method(s)

I used auto-ethnography and participant observation to explore how healthcare professionals interpret and manage terminal agitation. The participant observation was conducted on a 17 bedded hospice ward in a large city. The field notes were recorded by hand and the data subsequently coded by theme. Observation stopped when no new themes emerged.

Results

4 themes emerged. Personal feelings: Agitated patients challenge our confidence in symptom management. Causes: While we only document biomedical causes of agitation staff discuss a wide range of existential causes for individual patients. Management: There is a pressure from relatives and within teams to “do something” when a patient is agitated.

Medication may be given for reasons other than undeniable agitation. Discordant narratives:

In situations where relatives and staff disagree about the presence or absence of agitation this can often be explained in the context of discordant narratives.

Conclusion(s)

There is a subjective component to the identification, cause and management of terminal agitation. We should embrace and acknowledge this. As well as being key to the concept of individualised care it is the expression of these ideas that enable health care professionals to understand and therefore manage terminal agitation.
HOME DEATHS ARE MORE COMMON AT WEEKENDS AND HOLIDAY PERIODS AMONG CHILDREN AND YOUNG PEOPLE (CYP) WHO DIE FROM CANCER
Authors: Gao W , Verne J , Davies JM , Peacock J , Gordon E , Morris C , Greenough A , Higginson IJ
Published: February 2014

Introduction

Healthcare staffing and service levels during weekends and holiday (WH) periods are lower than other periods. It is unclear if such configuration plays a role in place of death (PoD) for CYP cancer deaths. Healthcare staffing and service levels during weekends and holiday (WH) periods are lower than other periods. It is unclear if such configuration plays a role in place of death (PoD) for CYP cancer deaths.

Aim(s) and method(s)

To evaluate the relationship between CYP cancer deaths during WH periods and PoD. 5,432 CYP cancer deaths (≤24 years) in England in 2001–2010 were extracted from ONS death registration database. The outcome was PoD. WH periods were defined as Saturday or Sunday, two days before or after Christmas, and one day before or after New Year's Day or Easter.

Results

Overall, 30% of CYP cancer deaths occurred in WH periods. Compared to other periods (47.7% [46.2–49.3%], there was a reduced proportion of deaths in hospital during WH periods (−3.5% [−6.4 to −0.6%]), and an increased proportion of home deaths during WH periods (3.5% [0.6–6.3%]). Deaths in other places remained stable regardless of period. Multivariate log-binomial analysis (adjusting for age, gender, cancer site, year of death and deprivation) confirmed that CYP cancer deaths were more likely to occur at home during WH periods than in other periods (PR: 1.06 [1.01–1.12], P=0.017).

Conclusion(s)

Relatively more CYP cancer deaths occurred at home during WH periods than in other periods, mirroring a decrease in hospital deaths. Further research is needed to understand the reasons for this pattern, particularly the roles of service users' preferences, service provision and care quality. Our results highlight a need for well co-ordinated community palliative and primary care support at WH periods.
ENGAGING MINORITY ETHNIC COMMUNITIES TO IMPROVE ACCESS TO PALLIATIVE CARE: BARRIERS AND STRATEGIES
Authors: Baillie J , Harrop E , Hopewell-Kelly N , Stephens K , Byrne A , Nelson A
Published: February 2014

Introduction

A growing body of literature highlights that minority ethnic groups are underrepresented in accessing palliative care. The Big Lottery therefore funded one Marie Curie Hospice to employ a keyworker to improve minority ethnic communities' awareness of and engagement with palliative care services.

Aim(s) and method(s)

Project aim: to evaluate the Marie Curie keyworker project over three years. Presentation aim: to present interim findings from the community engagement work undertaken by the keyworker. University ethical approval was gained and data collection began in November 2012 and is on-going. Semi-structured interviews were undertaken with hospice staff and the keyworker. Focus groups were facilitated with community steering groups and project documents have been analysed. Data were managed in NVivo 10 and analysed thematically.

Results

Interim results demonstrate the links fostered between the keyworker and multiple minority ethnic groups, through community centres, charities, advocacy organisations, and religious groups. Barriers to engaging communities include awareness – minority ethnic communities are often unaware of palliative care; Gatekeeping – individuals in community organisations blocking the keyworker accessing groups. Strategies for engagement include creativity and flexibility – the keyworker attended community celebrations with information about Marie Curie services; Reciprocation – a hospice volunteering project for individuals from minority ethnic communities has been established; Advocacy – offering communities a voice through discussion groups to elicit their understandings of palliative care and perceptions of barriers to accessing services.

Conclusion(s)

To date the evaluation demonstrates the progress made by the keyworker to engage with, listen to and offer information to minority ethnic communities.
SHARING BAD NEWS: DEVELOPMENT OF AN INTERVENTION TO SUPPORT PATIENTS WITH LUNG CANCER SHARE NEWS OF THEIR CANCER DIAGNOSIS WITH FAMILY MEMBERS AND FRIENDS
Authors: Ewing G , Ngwenya N , Farquhar M , Gilligan D , Bailey S , Benson J , Seymour J
Published: February 2014

Introduction

Much research has focussed on breaking bad news (BBN) i.e. on how physicians communicate a cancer diagnosis to patients. There is little understanding of the subsequent process, when patients go home and share bad news (SBN) with family members/friends: a situation faced by 115 people every day in the UK who receive a lung cancer diagnosis.

Aim(s) and method(s)

To identify key components of an intervention to prepare/support people with sharing news of their lung cancer diagnosis with wider family members/friends. Stage 1: qualitative interviews with 20 patients with lung cancer and 17 family members/friends present at BBN consultations, interviews/focus groups with 41 clinicians to examine experiences with BBN and SBN. Stage 2: workshop with 6 service users, feedback to participating clinicians and interviews to explore feasible intervention strategies. Data digitally recorded, transcribed verbatim. Thematic framework analysis.

Results

Patients and family/friends found sharing bad news difficult and complex and a process that happens over time. A mismatch in perceptions of support with SBN between clinicians and patients indicated need for a pro-active and universal approach to offering support. Six core elements were identified in SBN (people to be told, timing of sharing, information to be told, responsibility for sharing, methods of telling others and reactions of those told).These core components have informed development of a supportive intervention for practice.

Conclusion(s)

Sharing bad news is a challenging process which is currently largely unsupported. An intervention to support patients with sharing news of a lung cancer diagnosis is highly relevant for palliative care.
HOW DO COMMUNITY NURSES DECIDE WHEN TO USE ANTICIPATORY PRESCRIPTIONS IN END OF LIFE CARE AND WHAT DO THEY WORRY ABOUT? FINDINGS FROM A QUALITATIVE STUDY
Authors: Wilson E , Morbey H , Brown J , Payne S , Seale C , Seymour J
Published: February 2014

Introduction

In the UK, a key approach to improving end of life care has been the introduction of ‘anticipatory’ or ‘just in case’ prescriptions (APs). Nurses are often responsible for deciding when to use APs, but little is known about their experiences.

Aim(s) and method(s)

To examine nurses' decisions, aims and concerns when using APs for patients cared for in the community. An ethnographic study in two UK regions, with community nursing teams and nursing homes. Observations and interviews were conducted with nurses involved in using APs.

Results

Observations (n=83) and interviews (n=61) with community nurses. Nurses identified five ‘conditions’ that needed to be established before they implemented an AP: a) irreversibility; b) no other methods of relief; c) patient unable to take oral medication; d) where the patient was able, they should consent; e) decision had to be independent of demands or request from patient's relatives. By using APs, nurses sought to: enable patients to be ‘comfortable and settled’ by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call out. Nurses sought to ‘do it by the book’, adhering strictly to local prescribing policies and guidelines. Some worried about: distinguishing between pain and agitation, balancing risks of under and over medication and the possibility of hastening death.

Conclusion(s)

Nurses have a leading role in the administration of APs. Nurses applied consideration and caution to the administration of APs with the expressed aim of relieving symptoms and distress.
FACILITATING A SHIFT TO COMPREHENSIVE CARER-LED ASSESSMENT IN PALLIATIVE HOME CARE: THE CSNAT APPROACH
Authors: Austin L , Ewing G , Grande G
Published: February 2014

Introduction

The Carer Support Needs Assessment Tool (CSNAT) is an evidence based tool for comprehensive assessment of carers' needs. Use of the tool in practice requires a shift from informal practitioner-led methods of identifying carers' needs to a carer-led, practitioner-facilitated approach.

Aim(s) and method(s)

To identify training requirements to enable practitioners to move from practitioner-led to carer-led carer support needs assessment. The CSNAT was implemented in six palliative home care services as part of a stepped wedge cluster trial. Pre-implementation training was provided to practitioners at each site. Qualitative data were obtained on practitioners' experiences of implementing the CSNAT via focus groups, interviews and site visits/contacts (where field notes were made). Ongoing analysis identified challenges in adopting carer-led assessment and was used to revise training materials for subsequent training sessions.

Results

The CSNAT was often perceived as a ‘form’ representing an ‘add on’ to usual practitioner-led practice. The training was therefore modified to promote the underlying principles of the ‘CSNAT approach’ (i.e. the process of carer-led assessment). The stages of the CSNAT approach comprise: Introducing the CSNAT, Carer's consideration of needs, The Assessment Conversation, Shared Action Plan and Shared Review. Each stage is facilitated by the practitioner, but led by the carer.

Conclusion(s)

Understanding of the CSNAT approach is fundamental to achieving carer- led assessment and support in palliative home care. The CSNAT approach resources are currently being tested as part of a CSNAT toolkit.
CHALLENGES TO IMPLEMENTING COMPREHENSIVE CARER ASSESSMENT IN PALLIATIVE HOME CARE: FINDINGS FROM A CLUSTER TRIAL
Authors: Ewing G , Austin L , Grande G
Published: February 2014

Introduction

The Carer Support Needs Assessment Tool (CSNAT) is evidence based and comprehensive. It helps structure an assessment process that enables carers to consider, express and prioritise support needs, then develop a shared action plan of support with practitioners. Previously reported research shows added benefits from CSNAT use for carers and practitioners.

Aim(s) and method(s)

To identify factors hindering implementation of CSNAT in palliative home-care to inform CSNAT trial results. CSNAT implementation in six palliative home-care services in a stepped wedge cluster trial to test for improved carer outcomes. CSNAT use was monitored. Qualitative data collection from trial sites on practitioners' experiences of using the tool using field notes (from CSNAT training sessions, post-training feedback, monthly CSNAT ‘champions’ contacts), focus groups/interviews with practitioners and service managers.

Results

Use of the CSNAT was low. Practitioners' main focus and time was on patients' needs. A paradox existed between a policy of ‘being there for the family’ not just the patient, and concerns about doubling workload if carers' needs were also assessed. Distinguishing carers' needs from patients' was problematic during joint assessment visits, particularly relating to carers support needs around patient care eg with managing medicines, areas also discussed with patients. CSNAT was used as an ‘add on’ to usual practitioner-led practice: a form to be completed rather than an integrated carer-led approach. Finally, service structures, procedures and the trial itself presented additional barriers.

Conclusion(s)

Barriers to CSNAT uncovered in the trial provide key insights into challenges for implementing comprehensive assessment of carer needs in palliative home care.
USE OF HOSPITAL SERVICES AMONG PALLIATIVE OESOPHAGO-GASTRIC CANCER PATIENTS
Authors: Groene O , Taylor A , Cromwell D
Published: February 2014

Introduction

A high proportion of patients on a palliative care pathway continue to use hospital services or die in hospital, despite calls for increased care in the community. Further research is required to distinguish hospitalisation near end of life for specific disease pathways, since a wide range of factors influence service utilisation and place of death. For oesophago-gastric cancer patients with palliative treatment intent, three treatment options exist: palliative oncological treatment, endoscopic treatment, and best supportive care.

Aim(s) and method(s)

This study sought to assess health service utilisation of patients diagnosed with oesophago-gastric cancer on a palliative care pathway. Patient data were obtained from the National Oesophago-gastric Cancer Audit and linked to the Hospital Episode Statistics (HES) dataset. For each patient, the method of hospital admission, date and mode of treatment intent was identified.

Results

8,499 palliative care patients were identified in the linked audit-HES dataset. 4,036 patients had an oncology treatment plan, 1,526 had endoscopic care, and 2,887 had best supportive care. 85.6% who received oncological care were re-admitted to hospital one or more times, in comparison to 76.3% and 50.7% who received endoscopic care and best supportive care respectively (p<0.001). Multivariate analysis suggests a six fold risk (OR 6.2; CI 95% 4.6–8.6) of hospital admissions for patients receiving oncological care, as compared to best supportive care. More than half (50.2%) of patients receiving palliative oncology experienced 4 or more emergency admissions before death.

Conclusion(s)

This study suggests that palliative treatment decisions must be carefully made with hospital re-admission risk in mind.
PATHWAYS FOR BLOOD AND BOWEL CANCER PATIENTS IN THE LAST YEAR OF LIFE: DESCRIBING INPATIENT CARE PATTERNS USING ROUTINE NATIONAL DATA
Authors: Kane EV , Howell DA , Morris E , Johnson M , Oliver SE
Published: February 2014

Introduction

The drive to deliver improved services for patients with cancer has highlighted the need for better information on care patterns. We examined the utility of linking different datasets for this purpose.

Aim(s) and method(s)

All acute myeloid leukaemia (AML) (ICD10 C92.0, C92.4, C92.5, C93.0, C94.0, C94.2, N=1771), myeloma (C90.0, N=2554) and colorectal cancer (C18-C20, N=18704) deaths in England during 2008 were identified from the National Cancer Data Repository (1990–2008) and linked to inpatient Hospital Episode Statistics. The numbers of admissions and days in hospital per month were calculated by disease type, and the occurrence of each patient's hospital visits relative to the time of death plotted on Gantt charts to show care patterns by consultant specialty.

Results

Inpatient durations for those dying within a month of diagnosis were similar across the three cancer types (23 bed-days), while the admission rate was higher for haematological (3 per month) than colorectal cancers (1.7 per month). Patients surviving longer than one month were admitted less often and spent less time in hospital across diseases – however, haematology patients were admitted more frequently and for longer durations than those with colorectal cancer. Gantt charts showed the intensity of inpatient activity, with frequent visits to haematology for AML and myeloma patients and to oncology or surgery for colorectal cancer patients.

Conclusion(s)

Routine national data provides useful insights into the disease-specific inpatient care patterns associated with AML, myeloma and colorectal cancer during the last year of life.
PROLONGED DWINDLING CHARACTERISES THE ILLNESS TRAJECTORY OF NURSING HOME RESIDENTS AT THE END OF LIFE
Authors: Finucane AM , Stevenson B , Murray SA
Published: February 2014

Introduction

Three illness trajectories have been identified: (i) a short period of evident decline typically experienced by patients with cancer; (ii) long term limitations with intermittent serious episodes typically experienced by patients with organ failure; and (iii) prolonged dwindling typically experienced by patients with frailty or dementia. An understanding of a patient's illness trajectory facilitates anticipatory care planning and decision-making as end-of-life approaches.

Aim(s) and method(s)

To determine the dominant illness trajectories of nursing care home residents. As a secondary aim we explored multimorbidity in this group. Data was collected by care home staff with support from community palliative care nurse specialists as part of a larger project to improve palliative care in South Edinburgh care homes.

Results

Data concerning 77 residents was collected. The dominant illness trajectory of 90% of residents was characterised by prolonged dwindling. Further analysis revealed that 30% of residents experienced mixed illness trajectories. About half of those with mixed trajectories experienced dementia and cancer while half experienced dementia and organ failure. 67% of residents experienced two or more chronic morbidities. Overall, 78% of deceased residents had dementia.

Conclusion(s)

The vast majority of nursing home residents experienced prolonged dwindling prior to death. Most had multiple morbidities and high symptom burden. Interventions to improve palliative care in nursing homes need to be modelled on patients who experience prolonged dwindling characterised by dementia and multimorbidity.
AFTER IWANTGREATCARE: SERVICE USER FEEDBACK AS A MEANS OF REFINING THE IWANTGREATCARE QUESTIONNAIRE
Authors: Bowyer A , Finlay I , Byrne A , McCarthy J , Sampson C , Snow V , Nelson A
Published: February 2014

Introduction

In 2009 the Palliative Care Implementation Board developed a survey to evaluate palliative care service provision in Wales. Through the use of the iWantGreatCare platform patients and carers, from inpatient and community settings, are able to share their experiences of care through 10 likert scales and a free-text section. Subsequently, qualitative analysis of the comments of patients and carers has highlighted areas of care not fully assessed in the scored results. Accordingly, this project now aims to use the qualitative findings to refine and test the questionnaire to ascertain whether the new iteration accommodates service users' priorities and concerns, whilst being pertinent and understandable.

Aim(s) and method(s)

Ethical approvals were gained in August 2013. The refined questionnaire was developed through an expert consensus day and is now being tested using semi-structured, cognitive interviews with patients (n=10) and carers (n=10) using palliative care services at two hospices in South Wales. The research sites aim to give a multifaceted insight in to the efficacy of the new questionnaire by gathering information from inpatient and community participants. Transcripts from interviews are being analysed thematically.

Results

It is expected that the interviews will highlight minor areas for change within the questionnaire, while also providing a broader insight into the experiences of patients using community and inpatient palliative care services.

Conclusion(s)

Study results will be presented to the Palliative Care Implementation Board for their consideration and potential adaptation of the existing questionnaire.
UTILITY OF THE ‘SURPRISE QUESTION’ IN A DAY THERAPY PALLIATIVE CARE PRACTICE; SHOULD SPECIALIST PALLIATIVE CARE BE FOCUSING ON TOTAL SYMPTOM BURDEN AND COMPLEXITY RATHER THAN PROGNOSTICATION?
Authors: Gishen F , Eades J , Tookman A
Published: February 2014

Introduction

There is recognition that the nature of palliative care may be changing, as cancer survival improves and long-term conditions increase the complexity of the case load. Previous work has examined the accuracy of expert prognostication in patients with a life expectancy of less than a year. This piece of work also considers the accuracy of prognostication in patients thought to have a longer prognosis, and who may therefore be largely excluded from referral to specialist palliative care services, based on current referral patterns. It questions whether the palliative care net should be widened to reflect uncertainties in prognostication, and thereby extend valuable end of life services to a broader range of patients.

Aim(s) and method(s)

A ‘snapshot’ cohort of the total number of patients accessing a palliative care day therapy unit on a given date was taken. Patients were categorised into the groups below using the ‘Surprise Question’ (Gold Standards Framework) by two experts in Palliative Care (one clinical nurse specialist/ one physician) and triple-read by a second palliative care consultant.End of life care=likely to have less than 12 month prognosis (malignant & non-malignant diagnoses).Cancer Survivorship= malignant diagnosis with a probable life expectancy of greater than 12 months.Non Malignant Survivorship=Patient has a non-malignant diagnosis with a probable life expectancy of greater than 12 months.

The patient group was re-analysed one year later, to assess the accuracy of prognostication.

Results

See Abstract P 37 Table 1.

Table 1Status after one yearOriginal classificationOriginal numberAliveDiedLost to F/UEnd of life care8836 (41%)49 (56%)3 (3%)Cancer survivorship188135 (72%)42 (22%)11 (6%)Non malignant survivorship2518 (72%)5 (20%)2 (8%)

Conclusion(s)

Our end of life predictions mirror other studies for those patients predicted to have a life expectancy of less than one year. We have also demonstrated that the cancer survivorship population (ie greater than 12 months life expectancy) had higher than predicted mortality rates within the first year. Is the surprise question an optimal tool? Does the surprise question promote ‘cherry picking’; should specialist palliative care be focusing on total symptom burden and complexity rather than prognostication?
EVALUATING AN NHS COMPLEMENTARY THERAPIES SERVICE
Authors: Briscoe J , Browne N
Published: February 2014

Introduction

A complementary therapies service was introduced at Whipps Cross University Hospital for patients with cancer and palliative care needs. The service was evaluated using an evaluation tool. A range of therapies are offered including aromatherapy, massage, reflexology, shiatsu and homoeopathy. They are provided on a one-to-one basis for patients and, to a lesser extent, for carers; a weekly relaxation class also serves as a drop-in support group. We support self-help in a range of ways, from providing simple items, such as aromasticks, to offering training on mindfulness and relaxation techniques.

Aim(s) and method(s)

National guidelines suggest the main purposes of service evaluation are to analyse patient views, wellbeing and outcomes, and measure symptom management. The Measure Your Concerns and Wellbeing (MYCaW) questionnaire meets these needs, and was designed specifically for evaluating supportive cancer care interventions, including complementary therapies. We use MYCaW to identify patients' own priorities for interventions and enable them to offer personalised feedback. Results can provide vital data about their experience and symptom management, particularly how this changes over time and how other aspects of patients' lives are affected.

Results

The results indicated a 30% perceived improvement of symptoms, including wellbeing. Results for male patients were slightly higher than female patients.

Conclusion(s)

The MYCaW questionnaire has generated a local evidence base that shows perceived improvements in symptoms and wellbeing following complementary treatments. It is important to undertake individualised qualitative evaluations as well as quantitative studies. Evidence demonstrating efficacy is vital in all areas of healthcare, including complementary therapies, to justify their provision.
BENEFITS OF HEALTH AND SOCIAL CARE INTEGRATION
Authors: Layden J , Nicol B , Connelly M , Hekerem Diana , Meade R
Published: February 2014

Introduction

Scotland's health boards and local authorities are moving towards integrated funding and service provision. Effective integration will depend on health, social care and third/independent sector partners pooling resources and planning care together, led by clinicians and other professionals. Working with a voluntary sector expert as a partner in service design can enable these principles to be put into practice in palliative care.

Aim(s) and method(s)

Marie Curie Service Development in Scotland's principles are whole system review and development of services; identifying opportunities for collaborative working; and implementing cross sector initiatives and partnerships. Demographic and activity data, stakeholder focus groups and workshops, service user survey and NHS and Scottish Government programme assurance have been used to design, review and improve integrated services and programmes.

Results

Integrated Health and Personal Care Community Support – Over 77 patients would have required hospital admission without the integrated service. 83% of respondents thought the service had enabled more input into decision making about their care; and 66% were able to spend more time with their loved ones, and have reported an improved quality of life. Redesign Programmes – The 3 redesign programmes collaboratively bring together health, social care and third/independent sector partners at both strategic and operational levels.

Conclusion(s)

The voluntary sector as a key partner in supporting the integration agenda with specific expert knowledge. For palliative care, Marie Curie can test new ways of working and develop community focused collaborations, with evidence of benefits to patients and families as well as the health economy.