bluuebunny/crossref_metadata_2025 huggingface dataset:
COMPETENCY BASED TRAINING IN THE NURSING HOME SETTING: PROMOTING QUALITY END-OF-LIFE CARE
Authors: McLaughlin Dorry , Hasson Felicity , Foster Sue , McCorry Noleen , Kernohan George , McIlfatrick Sonja , Watson Max , Waldron Mary
Published: February 2014

Background

The importance of good end-of-life care for older people in nursing homes is recognised internationally and competence based training has been highlighted to improve palliative care provision in this care setting.

Aim

This aim of this study was to evaluate a three day competency based, Regional Palliative and End-of-Life Care Learning and Development Programme targeted at nursing staff (n=1330) working within nursing homes (n=266) in Northern Ireland.

Methods

Both quantitative and qualitative methods were used in two key phases. In Phase 1 participants were asked to complete the Regional Palliative and End-of-Life Care Competency Assessment Tool before and after the training. The content of the programme was mapped to the domains of this tool. In Phase 2, following the programme, seven focus groups with registered nurses (n=29), telephone interviews with managers (n=8) and one focus group, which two managers chose, took place.

Results

619 participants completed the programme and 95.3% (n=590) completed the competency tool before and after the training. Descriptive statistics show participants self-reported a significant increase in core palliative care knowledge and skills across all five competency domains after training. Common themes emerging from focus groups and telephone interviews were: ‘Outcomes of attending the programme’, programme delivery and issues of access', challenges to palliative care in care homes' and ‘enablers to palliative care in the nursing home setting’.

Conclusions

This example of training mapped to a competency tool may have relevance given other national and international competency frameworks which exist. Factors relating to attrition have also been identified.
EXPLORING HOSPICE NURSES' EXPERIENCES OF IDENTIFYING CHILDREN'S BEREAVEMENT NEEDS BEFORE THE DEATH OF A PARENT
Authors: Clipsham Laura , Vostanis Panos , O'Reilly Michelle , Faull Christina
Published: February 2014

Background

NICE guidance and the National Service Framework for children recommend healthcare professionals consider the whole family's needs prior to a parent's death. Despite evidence that in the terminal phase of a parent's illness children experience elevated levels of stress and demonstrate distress at their parents impending death, there is little work focusing on how their needs are identified.

Aims

To explore how hospice nurses identify children's bereavement needs (aged 18 years or younger) when they have a terminally ill parent, and their experiences of supporting children.

Methods

Individual semi-structured interviews were conducted with ten hospice nurses recruited from a single inpatient unit to explore their practice of identifying the bereavement needs of children of terminally ill patients, and their experience of providing support to these children. Transcripts were analysed verbatim and coded thematically.

Results

Participants identified multiple factors impacting upon children's bereavement, but felt their knowledge was limited. The following key themes emerged:

Perception of need – indicated by distress in the well parent, changes in a child's behaviour, or when safeguarding concerns arose.

Communication – nurses expressed concern talking directly to children may cause distress.

Barriers to provision of support – these included parents blocking discussions, variable supportiveness of colleagues, lack of time and nurses not feeling ‘child-orientated’.

Personal experiences of illness and bereavement – nurses related to their own experiences when considering children's needs.

Impact on nurses – caring for patients with children was associated with negative emotions. Many felt unprepared, and some expressed concern about letting children down.

Education – nurses wanted further training and easily accessible resources.

Conclusions

Nurses identified professional and personal challenges in recognising and addressing children's bereavement needs and their requirements for support. Further work is needed to develop strategies to overcome these challenges, and address the requirement for additional training.
HELPING PATIENTS TO DIE AT HOME: CARERS' VIEWS ON HOME CARE WITH THE MIDHURST MACMILLAN SPECIALIST PALLIATIVE CARE SERVICE
Authors: Hughes Philippa , Winslow Michelle , Ingleton Christine , Noble Bill
Published: February 2014

Background

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team providing care in the home, community hospitals and care homes. Care includes specialist interventions. Case data review shows that over two thirds of patients referred to the service die at home.

Aim and Methods

As part of a multi-method evaluation study we conducted a survey of bereaved carers of patients referred to the MMSPCS, using the Views of Informal Carers- Evaluation of Services (VOICES) self-complete postal questionnaire.

Results

Response rate was 40.5% (102/252). 83%of respondents reported services at home to be excellent or good, and 78% reported receiving as much support as they wanted. 74% reported receiving care from two or more nursing services. 43% of respondents had given up or reduced their work to look after their relative. Confidence of informal carers in looking after their relative varied, with only 32% reporting feeling very confident. 49% reported the caring experience as rewarding, 7% as a burden, and 28% equally balanced (14% other replies/missing). There were 20 comments from those who found it rewarding: including on the value of maintaining family life, deepening relationships, enabling a wished for death at home, and on the tiring and difficult nature of providing care. There were five comments from those who found it a burden; including feeling they had not provided good enough care, and feeling frightened or sad. There were 25 comments from others, including feeling glad to provide care while acknowledging the sadness and anxiety of this; rejecting the terms ‘burden’ and ‘reward’; and the challenges and responsibility involved.

Conclusion

Good services are key to care at home, but also key are informal carers at home. Carers report difficulties and challenges alongside positive experiences at home, reflecting the complexity in this area.
Carer and Health Care Professionals' Views on caring for dying patients in their homes in North Wales
Authors: Pottle Jacqueline , Neal Richard , Poolman Marlise , Hiscock Julia
Published: February 2014

Background

Patients express a preference to die at home. This has influenced National Policies, with the focus in health care to support as many patients to achieve this as possible. Annual deaths are expected to rise, but less than one in ten people achieving home deaths before 2030.3North Wales has a wide geographical area with services to support palliative patients varying across the different areas. This research will enable effective methods of support and types of interventions in North Wales to be identified; and thus be a starting point towards increasing the numbers of patients able to die at home. The results will be helpful to other areas nationally and internationally.

Aims

To understand the experience of caring for dying patients at their own home in North Wales, and clarify which aspects enabled a ‘good death’ at home for patients who expressed a wish to die in their own home. To identify which support services were involved and to clarify the interventions that enabled or hindered a patient to remain at home to die.

Methods

A multi perspective qualitative study of semi structured interviews of 18 bereaved carers and 18 Health Care Professionals involved in patients' care to die at home. All interviews were recorded and transcribed.

Results

Thematic analysis of information has taken place and the benefits and challenges of caring for dying patients in their own home have been explored.

Conclusion

Recommendations regarding views on effective support mechanisms and interventions will be highlighted and provide guidance on supporting patients to die in their preferred place of home.
PALLIATIVE AND END OF LIFE CARE IN PRISONS IN GREAT BRITAIN AND NORTHERN IRELAND – EXPERIENCES OF PHYSICIANS WORKING IN SPECIALIST PALLIATIVE CARE SERVICES
Authors: Fletcher Andrew , Payne Sheila , Waterman David , Turner Mary
Published: February 2014

Background

The End of Life Care Strategy (2008) states: ‘high quality services should be available in all locations, including prisons,’ and recommends collaborative working across the prisons, coronial, healthcare and specialist palliative care services.

Aims and Methods

The aim of the study was to explore experiences of physicians working in specialist palliative care, in caring for prisoners and their views about facilitators and barriers, to providing high quality care. An online questionnaire was distributed to members of the Association of Palliative Medicine of Great Britain and Ireland.

Results

Two hundred and thirty-six completed questionnaires (23.3% response rate). One hundred and thirty-seven (58.1%) respondents had experience of caring for prisoners. The most common reasons for review included pain control (23.6%), symptom control (27.6%) and end of life care (20.5%). The interface between services in prisons was identified as complex by 173 (73.3%) of respondents–impacting on delivery of care, requiring a comprehensive interface between staff inside and specialist palliative care services outside the prison. Ninety-six (39.4%) respondents were willing to be involved in the delivery of an education programme and 128 (54.2%) were keen to learn about prison structures and healthcare. Ninety respondents were unsure if end of life care tools could be implemented within prisons.

Conclusions

There are consistent perceptions regarding factors that enhance palliative and end of life care in prisons. These include the need to develop working relationships, and enhance communication, within the prison as well as between the prison and outside agencies. The development of education and research, management of public perceptions and the review of policies, procedures and legal issues were highlighted. There is willingness by physicians to engage with the prison service to develop and support palliative and end of life care. Strategic development at local and national level is important due to the unique characteristics of each prison.
FRAILTY NARRATIVES TOWARDS THE END OF LIFE
Authors: Lloyd Anna , Kendall Marilyn , Murray Scott
Published: February 2014

Background

Palliative care services have widened beyond cancer in recent years yet frail older adults rarely receive such services. There is a need to understand the multidimensional end of life experiences of this group in order to assess how or if a palliative approach could be beneficial.

Aims

To describe the changing multidimensional experiences of frail older adults towards the end of life.

Methods

76 in-depth qualitative interviews were carried out with 13 core participants and their key formal and informal carers repeatedly for a period lasting up to 18 months. Core participants were cognitively intact, community dwelling older adults considered to be moderately or severely frail using a clinical frailty scale. The interviews were participant led, audio-recorded and fully transcribed. The ‘voice centred relational’ narrative method, incorporating analyses of multidimensional experience, was used to compile case studies.

Results

Narratives of frail older people approaching the end of life illustrate patterns of multidimensional experience that differ from the end of life trajectories of other groups. All participants experienced physical decline however three possible patterns of psychological, social and existential experience emerged. These were: stable; regressive and tragic; or regressive; according to the capacity to hold on to core values, and maintain a sense of self and of belonging in the world. Areas of greatest unmet need focused around psychological, social and existential dimensions while provision of care mainly focused on physical need.

Conclusion

The current palliative care model may not be appropriate to meet the needs of frail older people. Considering the core values and sense of self that are involved in adjusting to and coping with losses experienced at this stage may help to highlight where best to alleviate psychological, social and existential distress as frail older people reach the end of life.
EVALUATION OF SHORT AND LONGER-TERM SURVIVAL FOLLOWING NON-RESECTIONAL PALLIATIVE SURGERY FOR ADVANCED COLORECTAL CANCER
Authors: Oliphant Raymond , Dawson Camilla , Horgan Paul , McMillan Donald , Morrrison David
Published: February 2014

Introduction

Palliative surgery for advanced colorectal cancer is associated with high morbidity and mortality. Non-resectional palliative surgery can be useful in the management of malignant bowel obstruction or perforation where a conservative approach can be associated with high symptom burden and imminent death. The aim of this study was to evaluate short and longer-term outcomes after non-resectional palliative surgery for advanced colorectal cancer.

Methods

Patients undergoing non-resectional surgery for colorectal cancer in 16 hospitals from 2001–2004 were identified from a prospectively maintained regional audit database. Post-operative mortality (<30-days) and relative survival were used to examine short and longer-term outcomes.

Results

A total of 225 patients were included, of which 141 (62.7%) were male. The median age at surgery was 69.3 years (s.d. 11.2; range 30.8–95.9 years). A total of 107 (47.6%) patients had rectal cancer and 160 (71.1%) had evidence of distant metastases. Ninety (40.0%) patients presented for surgery as an emergency and 135 (60.0%) presented electively. One hundred and fifty nine (70.7%) patients underwent the creation of a defunctioning proximal stoma and 63 (28.0%) had a bypass procedure. The overall post-operative mortality rate was 20.9%. Post-operative mortality was higher among emergency compared to elective presentation (36.7% versus 10.4%; p<0.001). Overall 1-year relative survival was 27.1%. One-year relative survival was higher among elective compared to emergency presentation (37.1% versus 11.9%; p<0.001).

Conclusions

Short and longer-term outcomes after non-resectional palliative surgery for advanced colorectal cancer are worse after emergency compared to elective presentation. Therefore, members of the palliative care team must be alert to symptoms of impending complications of advanced colorectal cancer to enable timely referral for surgical intervention on an elective rather than emergency basis.
‘MY DOCTOR’: PATIENT AND CARER EXPERIENCES OF THE GP ROLE FOR PEOPLE IN THE LAST YEAR OF LIFE
Authors: Hardy Beth , Nigel King , Alison Rodriguez
Published: February 2014

Background

The General Practitioner (GP) is an important provider of care for people with advanced disease and at the end of life. The GP, in combination with other members of the primary health care team, occupies a pivotal position in delivering end of life care in the community (Thomas, 2009). However, little is known about how patients and spousal carers understand this role, and experience GP involvement in their care.

Aims

To describe patient and spousal carer experiences of the GP in their care, in the last year of life.

Methods

Phenomenological methodology was used to illuminate the lived experience of patients and carers in relation to the involvement of health care services. Twelve patients assessed as being in the last year of life and eight spousal carers participated in interviews which utilised the visual method ‘Pictor’ to promote reflection and discussion of roles and relationships with their care team. Data were analysed using phenomenological techniques supported by Template Analysis.

Findings

The GP role is important to patients and carers, who have a strong perception of the care that they feel the GP should be providing. The GP is often described as ‘my doctor’ and people desire regular GP involvement in their care, even where there is no acute need, and to feel that the GP recognises their illness experience and knows them as an individual. Where this relationship does not exist, dissatisfaction with the service can be present, even when people are confident that the GP would be involved in care if it was requested.

Conclusions

Patients and spousal carers have strong perceptions of the GP role in the care of people with advanced disease. Sometimes these perceptions do not match their experiences of care provision which can lead to dissatisfaction with care.
NURSES' ROLES IN ANTICIPATORY PRESCRIBING IN END OF LIFE CARE
Authors: Wilson Eleanor , Seale Clive , Payne Sheila , Brown Jayne , Seymour Jane
Published: February 2014

Background

In the UK, a key approach to improving symptom control in end of life care in the community has been the use of ‘anticipatory’ or ‘just in case’ prescriptions. There is almost no research on nurses' roles in this area.

Aim

To determine the roles and experiences of community nurses in end of life medication decisions involving anticipatory prescriptions.

Methodology

A mixed methods study in two UK regions. An ethnographic study was conducted with community nursing teams (4) and in nursing homes (4), engaging health care professionals involved in prescribing, issuing and using anticipatory medications. In addition, 1558 community nurses were surveyed.

Results

Observations (n=83) and interviews (n=72) were conducted with nurses, GPs and pharmacists. The overall response rate to the survey was 37% (n=574), with categories of nurses' response as follows: community (n=192/25%), care home (n=231/50%), specialist palliative care (n=151/48%). 84% of nurses reported having provided care to adult patients who were dying during the past year. 98% of these said that an anticipatory prescription was in place for at least one of those patients. Nurses took a key role in prompting GPs to consider anticipatory prescriptions, encouraging them to write prescriptions correctly and enabling timely dispensing. They took responsibility for recognising the need to implement the prescription and administering the medications. Most respondents (96%) agreed that when anticipatory prescriptions were in place they enabled them to improve the quality of end-of life care. However, nurses with less experience often found their responsibilities burdensome. Nurses were concerned about ‘over’ and ‘under’ medicating patients and using medication at the ‘right time’.

Conclusions

This study highlights the significant responsibilities of nurses in all aspects of the anticipatory prescribing process and identifies a number of areas where support for nurses could be improved to promote quality care at end of life care in community settings.
THE EMOTIONAL RESPONSES OF STAFF TO MOVING TO A NEW HOSPICE BUILDING
Authors: Murray Jane , Armour Kathy , Meystre Chantal
Published: February 2014

Background

Work relocation is a major change and stressful, not only due to change in layout and functional delivery (Peach, 2005) but particularly, in palliative care, where memories are attached to the original worksite (Murphy, 2012). Research applying attachment theory links places to identities, giving insight to the stress and loss of moving (Speller, 2000). Our hospice was relocating nearby to a bespoke unit from a building occupied for nearly 50 years. Project planning managed practical issues but psychological and emotional aspects of the move were undefined.

Aim

To explore staff and volunteers experiences of moving at the time of a hospice relocation.

Methods

All hospice staff were eligible for the study and invited to anonymously complete a modified adult attachment questionnaire (Brennan, 1998), with additional quantitative and semi-structured qualitative elements, in the week prior to relocating. Staff views were triangulated with returns from volunteers. As no conflicting themes emerged they are reported together.

Results

29 clinical staff, 5 non-clinical staff and 8 volunteers participated (31% return rate). Their average length of service was 6.2 years ranging from <1–23 years. Thematic analysis revealed major themes around memories and remembrance; atmosphere created by caring staff and volunteers; experiences with patients, families and colleagues; and a positivity regarding caring in the new environment. Some staff were experiencing anticipatory grief and some required ways of ending an era.

Conclusion

The study captured a unique exploration of staff emotional reactions to relocating. It demonstrated that anxiety was related to an unconscious anticipatory grief linked to memories and experiences within the existing hospice, not an attachment to the building as the quantitative results (Meystre, 2013) suggested. This realisation demonstrates the power of mixed method studies to investigate complex phenomena within palliative care.
INFORMATION AT DIAGNOSIS OF HUNTINGTON'S DISEASE (HD), MOTOR NEURONE DISEASE (MND) AND PROGRESSIVE SUPRANUCLEAR PALSY (PSP)
Authors: Scholes Carol
Published: February 2014

Introduction

People with a long term condition require information in order to self manage and make informed choices. Access to timely information can be challenging for people with rare conditions.

Aim

To document information given at diagnosis of HD, MND and PSP and ask whether people can now make informed choices.

Method

A postal questionnaire was sent to 150 people living with HD, MND and PSP in Hertfordshire regarding knowledge of their disease before diagnosis, information given at diagnosis including supporting services, and ability to make informed choices.

Results

62 (41%)–6 HD, 39 MND, 17 PSP- questionnaires were returned

1)Did you know anything about your condition before you were diagnosed?

Overall 19 (31%) Yes, 43 (69%) No

“Yes” by diagnosis–4 (66%) HD, 13 (33%) MND, 2 (12%) PSP

2)At diagnosis were you given information about your condition?

Overall 42 (66%) Yes, 16 (26%) No, 4 (7%) unsure.

“Yes” by diagnosis – 5 (83%) HD, 26 (67%) MND, 11 (65%) PSP

3)Were you told about services that could support/help you and how to access them?

Overall 40 (65%) Yes, 21 (33%) No, 1 (2%) unknown.

“Yes” by diagnosis – 6 (100%) HD, 28 (72%) MND, 6 (35%) PSP

Question breakdown revealed information on carer support/respite most frequently unavailable but needed (11 overall – 8 MND, 2 PSP, 1 HD)

4)Do you feel enabled to make informed choices about living with your condition?

Overall 41 (66%) Yes, 15 (24%) No, 6 (10%) unknown

“No” by diagnosis – 1 (17%) HD, 7 (18%) MND, 7 (41%) PSP

Conclusions

At diagnosis, people with HD feel the most and PSP the least informed about their condition and local support available. Lack of information and local support may have affected ability to make informed choices. Service development should reflect these findings.
EVALUATION OF OPIOID USE IN CANCER PATIENTS AT NATIONAL HOSPITAL AND CANCER RESEARCH CENTER, KATHMANDU, NEPAL
Authors: Piya Madan , Chapagain Sandhya
Published: February 2014

Background

Nepal is a developing country with an increasing burden of cancer. Coupled with increasing healthcare costs and lack of health insurance, the focus has always been on treatment of cancer, rather than pain or symptom relief. Opioids have recently become more readily available at low costs in Nepal.

Aims and Methods

The aim of this study was to assess the pain score in patients with advanced stage cancer, and the effectiveness of pain control in these patients with the use of simple opioids in outpatient clinics. Between January and July 2013, patients attending the outpatient clinic in National Hospital and Cancer Research Centre, Kathmandu, with a histological diagnosis of cancer with pain score of two or more (Wong Baker Scale, 0–5), were enrolled in the study following written consent. Patients were started on immediate release morphine 5mg in the outpatient clinic, and pain score was revaluated after one hour and after 2 days, to assess the need for other analgesia.

Results

40 patients were included in the study, 42.5% male, mean age of 55±10 years. Pain score out of five was two in 35%, three in 45%, and four in 20% of patients. Patients were given 5mg of immediate release morphine. As expected, after one hour, pain score reduced to one in 27% of patients and two in 73%. Patients were advised to take 5mg immediate release morphine every 4 hours and as required. After 48 hours, the pain intensity was significantly lower than baseline, with one in 22%, two in 35%, three in 39% and four in 2%, and only 48% of the patients required additional analgesia.

Conclusion

Opioid analgesia remains the standard of care in pain management. It is affordable, easily tolerated and can be delivered in outpatient settings, even in developing countries like Nepal.
WITHDRAWAL OF NIV AT THE PATIENT'S REQUEST IN MND: EXPLORATION OF THE ISSUES RELATED TO COMMUNICATION
Authors: Faull Christina , Phelps Kay , Regen Emma , Oilver David , Mcdermott Christopher , Rowe-Haynes Cassy
Published: February 2014

Background

Little is known about the withdrawal of NIV at the request of a patient who has become dependent on it. The NICE guidance on the use of NIV in MND (2010) identifies the lack of clarity in how this process should be facilitated, suggesting interviewing the professionals involved in such events as a focus of research.

Aims

To explore issues related to communication in decision making about the withdrawal of NIV.

Method

A retrospective qualitative interview study of the experiences of 20 Doctors including specialists in palliative care, respiratory, neurology and family practice.

Results

The loss of the ability to communicate was a trigger for many patients to request withdrawal of NIV. Other patients vacillated in making a decision or were more reticent about discussions on continuance and doctors narratives suggested increasing desperation to try and establish their wishes before communication was lost. In the context of profound difficulty in communication and high levels of fatigability for the patient this was often time extremely consuming.

Doctors required sophisticated communication strategies to ensure capacity was established and their impression of the patient's view was accurate and consistently expressed.

Family were often in the position both of identifying that patients wanted to request that NIV was withdrawn and providing the evidence for the doctor of the patients understanding of the consequences.

The loss of the ability of patients to communicate and move meant doctors needed to make judgments about the patients' level of distress and the efficacy of symptom management.

Conclusions

Loss of communication is a key trigger for requesting withdrawal of NIV. However many patients' wishes are not known before developing profound communication difficulties. Establishing the wishes and comfort of patients with communication difficulties is complex, time consuming and worrying for doctors who need high level skills.
IS LONG-TERM LOW-MOLECULAR-WEIGHT HEPARIN STILL ACCEPTABLE TO PALLIATIVE CARE PATIENTS IN THE TREATMENT OF CANCER-ASSOCIATED THROMBOSIS? A QUALITATIVE STUDY REVISITED
Authors: Seaman Siwan , Nelson Annmarie , Noble Simon
Published: February 2014

Background

The treatment of cancer-associated thrombosis (CAT) is well established as a daily injection of weight-adjusted low-molecular-weight heparin (LMWH). Previous qualitative research suggesting LMWH to be acceptable in the palliative care population had several recognised limitations including selection bias and limited time on LMWH treatment.

Aims

To revaluate acceptability of LMWH as a long-term treatment for patients with advanced cancer and venothromboembolic disease within the context of current clinical practice.

Methods

A qualitative study of advanced cancer patients who had been receiving daily treatment dose of LMWH for CAT for at least 3 months. Patients were recruited from dedicated CAT clinics. Semi-structured interviews were recorded, transcribed and analysed using thematic content analysis until theoretical saturation was achieved.

Results

Fourteen patients were interviewed who had been on LMWH for an average of 11 months (range 3–34 months). Major themes included the impact of CAT, acceptability of LMWH and practicalities of injection. Many participants described the symptoms of their CAT as more burdensome than their cancer. Despite some of the challenges described with LMWH therapy it was generally considered an acceptable treatment with the perceived benefit of prolonging life outweighing the discomfort and burden of daily injections. Participants described several practical measures they had implemented to simplify their treatment.

Conclusions

Long-term LMWH remains an acceptable intervention in patients with advanced cancer and venous thromboembolism. Whilst new oral anticoagulants may offer an alternative to daily injections they are yet to demonstrate non-inferiority to LMWH. LMWH therefore remains the drug of choice in the treatment of CAT in the palliative care setting.
RELATIONSHIPS AND SEXUALITY IN YOUNG ADULTS WITH LIFE-LIMITING CONDITIONS IN THE UK
Authors: Blackburn Maddie , Earle Sarah , Komaromy Carol
Published: February 2014

Background

Until recently surviving into adulthood with a life-limiting condition was rare, and as such, young(er) adults with life-limiting conditions are now a unique population about whom it is timely to explore their considerations about sexuality, relationships and reproduction. Young adults with chronic conditions diagnosed in childhood, especially those which are life-limiting or life-threatening may well be less mature than their healthy peers( Beresford, 2013) but may still desire to experience an intimate relationship. The' emerging adult's' survival into adulthood is due to advancements in medicine and technology (Craig & Lidstone, 2012). This research builds upon the first author's previous research into the sexuality of young adults with neural tube defects (Blackburn, 2002; Blackburn, 2008) and is the focus of her current PhD.

Aims

The research is exploring:

The views and experiences of young(er) adults with life-limiting conditions about relationships, sex and reproduction?

How young(er) adults with life-limiting conditions may best be supported in making relationships, sexual and reproductive choices?

The views of their carers, professional staff, family members and friends who support them?

Methodology

Semi- structured Interviews are being conducted with young people over 16 years with Cystic Fibrosis and Duchenne Muscular Dystrophy, as well as the carers and professionals who support them. The data will be analysed using NVIVO software.

Results

Pilot data and early findings from the main study will be addressed plus the ethical issues of undertaking sensitive research about sexuality with young adults with life-limiting conditions.

Conclusions

These will be addressed in 2014.
WHOSE DECISION IS IT ANYWAY? PLANNING FUTURE CARE AT THE END OF LIFE FOR CARE HOME RESIDENTS
Authors: McGlinchey Tamsin , Saltmarsh Philip , Bancroft Rebecca , Mason Stephen , Gambles Maureen , Corcoran Gerard , Ellershaw John
Published: February 2014

Background

Advance Care Planning (ACP) is a process of discussion and shared decision making between an individual and their care provider. Discussion takes place in the context of an anticipated deterioration of the individual's condition. Shared decision making promoted by ACP has been highlighted as a key component in coordinating care at the end of life. This has particular significance for people who may lose mental capacity, enabling them to discuss, plan and document their wishes for possible future care.

Greater understanding of how ACP may support patients and their families is required. Accordingly, a study is currently engaged in the Care Home (CH) setting to assess the impact that ACP discussions have on all participants; residents, relatives/friends and healthcare professionals.

Aim(s)

To examine; the timing of discussions around residents choices at the end of life and planning for future care the process of shared decision making in ACP.

Method(s)

Interpretive phenomenology underpin the research methods employed; In-depth semi-structured interviews with CH residents (where possible), relatives/friends of residents and health care staff are being undertaken using a longitudinal case study design (n=10):

Initial interview after first ACP discussion

Follow up interview(s) at 3 monthly intervals throughout the study period

Post bereavement interview with relative/friends and healthcare professionals

Results

Results to date show discussions about choices at the end of life and planning for future care are mostly happening between relatives and health care professionals due to a lack of mental capacity in care home residents at the time of ACP discussions.

Conclusion(s)

More understanding is required, why discussions about choices at the end of life and planning for future care with residents in Care Homes are not taking place earlier in the residents disease trajectory and whilst they have capacity.
IS PEER-LED PALLIATIVE CARE TEACHING EFFECTIVE AND ACCEPTABLE?
Authors: Porteous Anna , Paxton Ann , MacCormick Fiona
Published: February 2014

Background

Peer-assisted learning is an established and validated approach to undergraduate education. The peer approach to educating qualified doctors, however, is in its infancy. As such, evidence of the efficacy and acceptability of this educational model is only just emerging. A peer-led Palliative Care study day has been developed by Specialty Trainees in Palliative Medicine in the North East of England and has provided education to five cohorts of junior doctors.

Aims

To evaluate the efficacy of a peer-led Palliative Care teaching programme, in terms of knowledge and confidence gained. To evaluate the acceptability of a peer-led Palliative Care teaching programme, specifically in comparison with consultant-led teaching.

Methods

Participants' knowledge and confidence was assessed before and after the study day, using a Multiple Choice Questionnaire (MCQ). Participants in the most recent cohort completed a questionnaire evaluating the acceptability of peer-led teaching.

Results

Combining data from two consecutive study days, the MCQ knowledge scores of 48 participants rose from 50% to 87%. Participants' confidence in managing patients with palliative care needs rose by 38%. All participants reported the teaching to be comparable to, or more effective than consultant-led teaching. Twelve out of 13 participants found peer teachers to be more approachable than consultants. More than half found the relevance, content, preparation and organisation to be more effective than consultant-led teaching.

Conclusions

We demonstrate that peer-led teaching is an effective and positively evaluated method of teaching junior doctors. Successful education relies upon the ability to create a non-threatening atmosphere conducive to learning and the grounding of content in relevant, contextual material. This may be better judged by peers than consultants. Research to assess sustained educational impact, benefits to peer teachers, and economic advantages of this approach would further enhance the application of this developing model in postgraduate clinical education.
HOW CAN CHILDREN USING HOSPICE SERVICES CONTRIBUTE TO UNDERGRADUATE MEDICAL EDUCATION? AN ACTION RESEARCH PROJECT
Authors: Spalding Jess , Yardley Sarah
Published: February 2014

Background

Patients with life-limiting illnesses should have opportunities to contribute to medical education so that professional learning is relevant to their needs and priorities. The potential contribution of children and parents using hospice services to medical education has not been fully explored.

Aims

1. To explore perceptions of a ‘good doctor’ amongst children/parents using hospice services

2. To collaborate with children/parents and staff to develop materials for educating medical students about living with life-limiting illnesses

3. To assess feasibility of student-led action research projects in a children's hospice

Methods

An INSPIRE Award from the Academy of Medical Sciences funded an undergraduate medical student to undertake this work with clinical and academic supervision. Prospective ethical approval was received. Children (n=7), parents (n=5), and staff (n=6) volunteers were recruited from a hospice to participate in audio-recorded semi-structured focus groups, individual interviews or activity workshops. Participants discussed what newly qualified doctors needed to know about caring for children with life-limiting conditions and what makes a ‘good doctor’. Data were transcribed for qualitative thematic analysis. Findings were refined by participant feedback.

Results

Key themes among participants included the importance of treating children as individuals, communicating honestly and sensitively, ensuring two-way dialogue between clinicians and families and actively listening to all involved in children's care. Staff, parents and children in the hospice were willing and able to make valuable contributions to undergraduate medical education by sharing their knowledge and experiences. This paper will present methodological insights, thematic findings, and educational materials (for undergraduate medical students and service development) created from the project.

Conclusions

Parents, children and staff in hospices are willing to participate in action research. This project provided the student researcher with transferable qualitative research skills. Further work is required to fully explore and understand opportunities for collaboration between children's hospices and medical schools.
ORGANISATION, FUNDING AND REVIEW OF UNDERGRADUATE PALLIATIVE CARE (PC) TEACHING IN UK MEDICAL SCHOOLS: A SURVEY OF EDUCATIONAL LEADS
Authors: Walker Steven , Gibbins Jane , Burnett Mandy , Adams Astrid , Paes Paul , Barclay Stephen , Chandratilake Madawa , Lodge Philip , Wee Bee
Published: February 2014

Background

Some recently-qualified doctors report that undergraduate teaching has not sufficiently prepared them to manage PC patients. Individuals at UK medical schools trying to improve PC training may encounter obstacles1. Little is known about the current organisation, funding and review of courses nationally.

Aims

To investigate the organisation, funding and review of PC teaching across medical schools in the UK from the perspective of educational leads.

Methods

A web-based questionnaire was developed and sent to PC educational leads at all UK medical schools. This study received ethical approval.

Results

All 30 medical schools responded. In 20/30 (67%) there is a formal PC component to the medical course. PC teaching most commonly occurs in years 4 and 5. Most (28/30, 93%) offer a Student Selected Course in PC, this is taken up by <25%. Insufficient places may be a factor in 11/27 (41%).

In 20/30 (67%) development of the PC course was planned, in 33% development was ad hoc. In 26/30 (87%) a PC lead(s) co-ordinates the course whilst 4 (13%) report no clear lead. Sixteen of 28 (57%) respondents had a teaching qualification/specific experience. An academic department of Palliative Medicine exists in 12/30 (40%). The mean hours per week spent on PC education was 3.3 hours (22 respondents). Funding/ financial recognition is not provided for PC course leads in 12/22 (55%), their organisation in 10/21 (48%) or PC teaching providers in 6/24 (25%). The PC course is regularly reviewed internally in 25/29 (86%). All universities seek medical student feedback.

Conclusion

Variations exist in the organisation and development of PC training across UK medical schools. Lack of leadership and resource allocation may hinder ability to provide PC teaching to medical students.
WHAT'S THE ‘E’ IN E-LEARNING FOR SPIRITUALITY: A COMPARISON OF ONLINE AND FACE TO FACE COURSE VERSIONS FOR HEALTHCARE WORKERS
Authors: Groves Karen , Baldry Cath , Sherrat Cathy
Published: February 2014

Background

Healthcare staff feel unprepared for dealing with spiritual and religious needs of patients and families. Indeed many are uncertain whether it is part of their role at all. However the NICE Supportive & Palliative Care Improving Outcomes Guidance 2004, in dedicating a whole chapter to this topic, made it clear that this part of holistic assessment and care falls squarely within the remit of healthcare staff. Subsequent national documents confirm this.

Aims

To assess the impact on frontline clinical staff, of face to face (F2F) and online versions, of a course designed to raise spiritual awareness.

Method

A qualitative study involving thematic analysis of semi structured, mainly open question, interviews, offered to the last 100 each of online and F2F course attendees. Interviews were offered to 54 (27%) respondents and 24 agreed a mutually convenient time. This part of the evaluation reports the analysis of the interviews with 20 frontline clinicians (4 chaplain interviews form part of another study).

Results

Spiritual awareness was achieved independently of the mode of course delivery, although participants articulated preferences. A diverse participant group enjoyed varied learning methods, resources and discussion. Good IT support and lack of technical hitches was important to smooth running online. Positive use of grouping, skilled facilitation (crucial) and the flexibility and anonymity of online learning suits a mixture of clinicians regardless of role and hierarchy. Confidence and structure in conversations with patients, empowering patients to seek innate solutions and strategies for dealing with questions about personal beliefs helped clinicians to address spiritual needs.

Conclusions

‘e’=experiential regardless of mode of delivery. Enthusiastic, more confident, participants recognised significant barriers, requiring organisational recognition for training to address spiritual needs and provide compassionate care.
THE USE OF SEDATION FOR DYING PATIENTS: ETHNOGRAPHIC STUDY IN THREE HOSPICES
Authors: Arolker Milind
Published: February 2014

Background and aims

Palliative care philosophy, which simultaneously promotes a symptom-control focus and a rejection of intentions to hasten death, underpins recent frameworks guiding sedative use. This PhD-based study explores three research questions: 1. How do hospice doctors and nurses use drugs with sedative effect for their inpatients nearing the end of life? 2. What rationale, or justifications, are necessary in the deployment of these drugs? 3. What are the similarities or differences between three different inpatient hospice units when prescribing and administering these drugs?

Methods

Three datasets were used: ethnography, through 150 hours of participant observation, of inpatient ward work undertaken by doctors and nurses in each of three hospices; audio-recorded, semi-structured interviews arranged with individual doctors and nurses; and Â two focus groups organised at each hospice, one comprising doctors and one comprising nurses (6–10 participants in each). The stimulus materials used in the focus groups concern anonymised clinical case-vignettes based on observed data. The collection and analysis of all data has been underpinned by a thematic qualitative approach and took place between May 2011 and January 2013.

Results and conclusions

The empirical data reveal patterns in the repertoires and communication strategies clinicians use during clinical processes involving drugs with sedative effect: prescribing and administering drugs; handling of relatives' impressions; and discussing patients and/or relatives amongst themselves as a team. Differences were noted between hospices concerning the degree of latitude doctors gave to nurses when prescribing sedation, but an emergent theme uniting data from all hospices concerns the “emotion work” staff do with relatives to promote and maintain a state of calm in hospices. I argue that sedation is not necessarily solely deployed for the index patient, and that using drugs with sedative effect facilitates a negotiable need for nursing staff to keep ward order, helping to calm clinical situations which might threaten this.
HIGH FIDELITY SIMULATION: A MODALITY FOR TEACHING END OF LIFE CARE?
Authors: Reed Nikki , Boulstridge Lisa , Nelson Annmarie
Published: February 2014

Background

The hospice model of care is held as the model of excellence for delivering high quality care to dying patients. However, only a small number of patients in the UK actually die in a hospice with the majority of patients dying in hospital. The major challenge faced by specialist palliative care services has been the transfer of best practice from the hospice setting to other care settings such as the acute hospital. At the Hollier Simulation Centre an end of life care course has been developed for all band 5 and 6 nurses within the Heart of England NHS Foundation Trust, using the novel teaching modality of high fidelity simulation.

Aim

To look at the impact high fidelity simulation teaching has on participant confidence and their perception of their knowledge and skills in end of life care.

Method

The study used a mixed method approach with a combination of pre and post course focus groups and pre and post course questionnaires. The focus groups transcripts were analysed using thematic analysis. The free text information from the questionnaires were used to support the themes developed from the focus group analysis. Two separate cohorts were used for this study.

Results

Analysis of the data revealed that the use of high fidelity simulation to teach end of life care did have a significant impact on the participants confidence, knowledge and skills. Additionally, the facilitated debrief sessions within the course were found to be beneficial these encouraged self reflection, peer teaching and constructive feedback within a safe environment.

Conclusion

The use of high fidelity simulation to teach end of life care does have a positive impact on the participants' confidence and their knowledge and skills. Further studies are needed to compare the use of high fidelity simulation to teach end of life care with other teaching modalities.