bluuebunny/crossref_metadata_2025_split huggingface dataset:
P142 Discussing preferred place of death with patients: Staff experience in a palliative care setting
Authors: Fields Anna , Finucane Anne , Oxenham David 
Published: October 2013

AimsTo qualitatively explore staff members’ experiences of discussing preferred place of death (PPD) with patients at the Marie Curie Hospice Edinburgh (MCHE).IntroductionNational end-of-life care policies propose that health-care professionals should have regular end-of-life discussions with patients wishing to talk about such issues. In 2007 the process of identifying patient end-of-life preferences was formalised at the MCHE; and staff now routinely discuss and record PPD. This study explores staff experiences of these discussions.MethodSix members of medical and nursing staff were recruited from the inpatient, day-service and community teams at the MCHE. Participants took part in an in-depth, audio-recorded, semi-structured interview. Interviews were transcribed verbatim and analysed using Interpretative Phenomenological Analysis (IPA), an approach to phenomenology which aims to capture and understand lived experience.ResultsFour themes were identified as being integral to participants’ accounts: “The importance of discussing preferences at the end of life”- staff recognise the importance of discussing and trying to achieve patients’ final wishes; “Identifying how and when to discuss PPD”- staff identify cues from patients to ensure discussions occur at a time and pace suitable for the individual; “Reflecting on the emotional aspects of discussing PPD”- discussing PPD is challenging but important and rewarding; “A journey from expectations to experience”- discussing PPD becomes easier over time through practice and learning from others.ConclusionThese findings highlight that although PPD discussions can be difficult, staff feel that discussing future plans, including place of death, with patients is important and beneficial for both patients and their families. With time, staff members have developed communication strategies that allow them to discuss PPD in an effective, sensitive and patient-centred way.
P143 Memories matter: Facilitating expression though creativity
Authors: Ho Debbie , Davies Andrea , Bailey Val , Carr Susie , Maxwell Sarah , Rendell Charlie 
Published: October 2013

IntroductionIn 2012 the Hospice extended the reach of its traditional family support services with two dedicated events for children and families. Each event was designed to facilitate remembrance, and promote self care and confidence within families whose lives had been inextricably changed though loss.AimTo create a bespoke event for children and adults (both) independently and collectively through providing a range of creative and therapeutic activities.To test simple strategies for engagement and interaction, and evaluate the quality of the experience through simple discovery techniques.To reduce the sense of isolation experienced by children following the loss of someone loved by them.Method28 children in total attended the events which took place in July and November 2012. Led by the family support and bereavement care service, and supported by the art therapist and trained volunteers, children and families who had previously engaged in pre-bereavement support, or post bereavement 1:1 or small group support were invited to the events.A range of activities were developed in consultation with the art therapist with a view to engaging children across a broad range of ages. Some sought to unify children and adult involvement. Activities included:Making memory feltsMaking a web of support using a ball of wool to create a shared bondMaking an interactive advent calendar which featured on the Hospice website throughout December creating a meaningful focus as families faced a first Christmas.ResultsChildren and families unanimously placed a high value on the quality of the event in terms of:Therapeutic valueFacilitating dialogue which acknowledged the loss of the person who had diedMaking meaningful memoriesReducing the sense of isolation within familiesStaff and volunteer experience was enriched through their involvement.
P144 Meet Mr Foul! An innovative approach to get to the heart of distress: A therapeutic tool to work with patients in ‘externalising’ illness, symptoms and their consequences
Authors: McLaughlin Kimberley 
Published: October 2013

ContextIntroduced to the field of family therapy in the 1980s, ‘externalising’ practice aims to enable people to realise that they and the problem are not the same thing. Externalising the problem encourages a separation from the problem - ‘the person is not the problem, the problem is the problem’ (White 2007:9). A space is created between the person and whatever is troubling them. Often problems become ‘internalised’; with patients seeing illness as something wrong with them, that they or something about them is problematic.In PracticeExternalising helps us to shift self-blame. A patient living with Parkinson’s disease said ‘I’m so pathetic, so incompetent and such a burden…’. Externalising questions helped to reshape the relationship with Parkinson’s e.g. ‘How long has Parkinson’s been influencing you?’, ‘What does Parkinson’s tell you about yourself?’, ‘When is Parkinson’s not so strong?’. Questions enabled collaborative exploration of the effects and tactics of problems and helped to reduce their influence.This encouraged separation from the problem, the patient began to see her symptoms as external to themself. Contributing to this process was her renaming Parkinson’s as ‘Mr Foul Disease’. Self-blame decreased and ‘Mr Foul’ became more manageable and less powerful. A sense of relief was experienced as the patient realised she was not the problem and became more able to reconnect stories about herself as ‘capable, insightful and determined’.DiscussionExternalising conversations can be flexible, creative and encourage patients to use their own problem-solving strategies, skills. They provide palliative practitioners with a tool, which positions them alongside their patients’ problems, jointly exploring of new ways of relating to illness and symptoms rather than a position of expertise.
P145 Life stories: Rebuilding self esteem through sharing and recording biographical stories
Authors: Pattenson Doreen , Quinney Miranda 
Published: October 2013

IntroductionIn 2012 we were approached by a local storyteller. We experimented with a simple programme, offering patients the opportunity to tell their stories on an informal basis and produced a series of summaries of the stories they told. We are now piloting a closed group version of Life Stories offering a 5 – 6 week course of story sharing sessions to day patients and patients in the community. The results observed to date have been overwhelming – we want to share these with you.AimsThe aims of Life Stories are to provide a space for reflection and story telling for patients who are low in mood or anxious.MethodsThe weekly 1.5 hour sessions are facilitated by the storyteller and attended by the social worker. Each session is structured using common life experiences, e.g. seasons, senses, celebrations. Using a mix of group, individual and pair work, all participants are invited to explore the theme and its meaning for them before sharing a related life story with a session partner. Next the stories are shared out loud with the whole group giving the facilitator a chance to record them all.ResultsThe reaction of the patients and their families to this experience is very positive; patients visibly brighten and do not want to leave. They report enhanced feelings of wellbeing, happiness and a generally improved quality of life. A family member reported: “my mother is talking again and painting again – thank you”.ConclusionPositive feedback from patients, their carers and hospice staff suggest that Life Stories workshops should be made available as part of a patient’s individual care plan and be a regular part of the hospice day services.
P146 Who matters to me? - using ecomaps in patient assessment & care
Authors: Gallagher Bernadette 
Published: October 2013

When doing good quality assessments for patients at St Joseph’s Hospice it was recognised that genograms did not tell the whole story – so I looked to EcomapsDr Ann Hartmann developed the ecomap as part of her social work practice in 1975. Initially it was used as a tool to show family life but Dr Hartmann then recognised that it was a useful tool to show a diagrammatic picture of a person’s life and helped clients view their situation from an outside perspective.The term eco is derived from the Greek ecology - the pattern of relationships between plants, animals & people to each other & their surroundings.The ecomap is a graphical representation of an individual or family and their interaction with other people & their environment. It is underpinned by the Systems Theory as described by Pincus & Minahan (1973)Informal Systems e.g. family, friends & neighbours. Providing emotional support & advice.Formal systems e.g. clubs, societies & other groups that can provide support.Public systems e.g. hospitals, schools & local government.The systems theory is useful in looking at an individual’s systems (their support network) to recognise & promote strengths and to sustain relationships that are under strain, it is at the heart of person centred planning. It is therefore used for assessment, planning & intervention.The ecomap is as individual as the person and a positive is that it can show spiritual domains that are very important to the person to help cope with illness this can include transpersonal beings (angels, demons, ancestors).Ecomaps are now included in St. Joseph’s Hospice Core Assessments & each patient’s ecomap will be displayed in our Multi-Disciplinary meetings to ensure that the patient & their world are kept the centre of our focus.
P147 The social universe - getting beyond genograms to map patient networks
Authors: Taylor Ros 
Published: October 2013

ContextForecasts of profound demographic change and diminishing health care resources together with patient preferences to be cared for at home, suggest that future community support will need to be shaped very differently, identifying new sources of resilience.Networks around people could be harnessed to offer social and practical support, and in many cases healthcare support. This underpins the public health approach to palliative care.ProposalThere is a presumption by practitioners that the traditional genogram describes the support network – this may be the case but it seems important to understand a more inclusive and interactive network, the strength and weakness of the links, potential for change and the conversations needed to facilitate strengthening of these links. Network ‘poor’ patients will also be identified.The Social Universe Tool(based on Macy’s support map)The palliative patient is given a blank sheet with their name in the centre and is asked to map all those people in their ‘universe’.These may include :Relatives, friends and neighboursFacebook friendsWork colleaguesMembers of groups or clubsThe thickness of arrows drawn in both directions between the patient and each name determines the strength of support given and received.Reflections on conversations that need to happen to strengthen key relationships are formulated togetherFor example – there may be a thin line from a friend towards the patient – the patient feels this friend would like to help more – what conversation needs to happen to strengthen the universe ?Initial resultsThe Social Universe map has been piloted to look at acceptability and usability with 20 patients of different ages and backgrounds.All patients have found it a creative and relevant way to understand their networks and to think about tactics to strengthen relationships !Next StepsFormal evaluation with professionals and patients, followed by training of hospice practitioners to launch as part of routine holistic assessment.
017 Any Qualified Provider - A positive experience for a hospice Lymphoedema service
Authors: Stevens Alison , Sueur Janet Le 
Published: October 2013

Background/contextHistorically the hospice had provided a lymphoedema service for patients who had predominantly cancer related lymphoedema. However, over time it became apparent that the condition for many of these patients had stabilised and they were living with chronic lymphoedema. This posed a dilemma for the hospice as to whether hospice funds should continue to be used to treat this category of ‘non-palliative’ patients. The hospice undertook a detailed activity analysis of the lymphoedema service and presented this to the NHS commissioning managers. This led to the hospice working with one PCT area to establish an NHS community based non-palliative lymphoedema service. A further, newly formed CCG decided to take a different route to offer a non-palliative service under an Any Qualified provider (AQP) contract.AimTo establish a non-palliative lymphoedema service under an AQP contract as an extension to the existing experienced hospice lymphoedema service.Approach usedHospice managers attended AQP stakeholder meeting.Submission of tender documentation.Acceptance of contract.Redesign of current service to accommodate new contract for wider geographical area.Recruitment, training of additional staff.Set up of data collection to meet requirements of contract.Setting up good working relationships with the other 3 commissioned AQP providers.OutcomesPatients who are classed as non-palliative have the benefit of an excellent well established palliative lymphoedema service.Application to hospice practice.The hospice now receives full funding for non-palliative patients.The hospice lymphoedema team are able to access additional training and gain knowledge of different conditions, this ultimately extends the range of skills and experience that they have to hand to support palliative patients.Non-palliative patients more prepared to accept hospice care should they have further disease recurrence or their condition deteriorates.Opportunity for hospice managers to gain experience in AQP commissioning process.
P148 Mirroring family identity through documentary filmmaking: innovative ways of working with families in a hospice setting.
Authors: Erna Haraldsdottir , Maril Amy Hardie Kendall 
Published: October 2013

BackgroundExpressive arts are increasingly being used within Palliative Care (PC) to add to desired outcomes. We wished to develop these techniques working with families in a hospice setting.AimsTo explore & evaluate the use of documentary film making techniques in PC to support families and patients.MethodA film artist, resident in a hospice for a year, worked with staff, patients & families using & teaching camera & editing skills to produce documentary films. They took part in a series of qualitative interviews to explore their experience. 30 interviews were completed, transcribed verbatim & entered into Nvivo 7 for thematic analysis.Results12 families made films in an iterative process that included reflective listening & screening, which this paper will analyse as ‘mirroring’. These films had various purposes such as ‘legacies’, made for those facing bereavement, ‘portraits’ allowing the family to see & take stock of their life stories; ‘play spaces’, where family members could express the parts of themselves that may get submerged in the problem-solving ethos of dealing with illness.ConclusionThe families found making a documentary film about their life brought them together, allowing them to ‘tell their story’ & leave a legacy of family archive. Patients reported they enjoyed specifically seeing the closeness between the family members & the positive functioning of the family reflected in the film. The legacy aspect of the film is of particular importance to patients with young children. Documentary film goes further than the traditional ‘memory box’, it captures the day-to-day life of the family together reflecting the relationship the patient has with his/her family as well as mirroring the family identity. Working with a film artist in a hospice has equipped the staff with new technical knowledge & a ground-breaking documentary intervention to use with families in a PC setting.Funding : Creative Scotland
P149 Discourse on method: testing a methodology for use in understanding what spiritual care specialists mean by ‘spiritual need’
Authors: Nolan Steve 
Published: October 2013

AimTo test a methodology for use in understanding what is meant by ‘spiritual need’BackgroundNurses are required routinely to conduct spiritual assessments (NMC 2010). Yet, despite a growing literature around spiritual assessment (McSherry & Ross 2010; Hollowayet al2011), knowledge about what constitutes spiritual needs remains limited. Without this knowledge, nurses are ill-equipped to make their assessments (McSherry & Jamieson 2011). The methodology is intended to be used in a lager study aimed at building a spiritual need typology.MethodThe pilot study – an interpretive study using a form of discourse analysis – worked with 9 spiritual care specialists, each of whom shared, in depth, one encounter with a person they considered had been in ‘spiritual need’. Working in focus groups and using semi-structured questions, the method aimed to:gather narrative accounts about the experience of people in spiritual need;generate descriptive vocabulary articulating those experiences.Participants orally described their encounter, which they then documented on a specially designed form. Participants next discussed their written accounts with colleagues to identify and record:key wordsthat characterise the experience of spiritual need; andindicators(objective and subjective) of spiritual need.Finally, participants wrote a brief, summary description of the spiritual need, which they further refined with their colleagues.ResultThe pilot identified refinements to improve the methodology as an effective way of gathering data useful in building a typology of spiritual need.Application to hospice practiceWith evidence growing that attending to spiritual needs has a beneficial effect on health outcomes (Koenig et al 2012), a clearer understanding of what constitutes ‘spiritual need’ is likelyto have direct impact on patient care and health outcomes.
P150 Death anxiety recognition in a palliative care setting
Authors: Nemeth Erzsi , Taylor Ros , Russell Sarah 
Published: October 2013

Death anxietyis the "feeling of dread, apprehension or solicitude (anxiety) when one thinks of the process of dying, or ceasing to ‘be’." (1)IntroductionRecognition of death anxiety is important in hospice care, but assessment and management is often down to subjective interpretation and personal skills.There are a number of formal death anxiety scales (2, 3) with an acceptable level of reliability, but these are not routinely used in hospice work. Informal assessment of death anxiety is based on narrative disclosure within a holistic assessment and covert death anxiety is often missed. (4). Generalised anxiety often masks the more specific concerns of ‘death anxiety’ – and the treatment may differ.Death anxiety can be managed with psychological interventions specifically aimed at existential distress, spiritual support, and facilitation of open discussions regarding death. These include ‘meaning- based’ interventions and legacy work.Standard health anxiety approaches within a cognitive behavioural approach (CBT) have been adapted to treat death anxiety with good effect (5); however a specific death anxiety model is not available.As part of a Masters Degree in Cognitive Behavioural Therapy I plan to research and design a model of care for death anxiety that can be used in front-line palliative practice. The following work is a baseline survey to underpin the research.AimTo establish current level of understanding, assessment and management of death anxiety at the Hospice of St Francis.MethodInpatient staff completed an anonymous questionnaire to highlight :their understanding of the concept of death anxietyconfidence staff feel in diagnosing and assessing death anxiety.subsequent management of death anxiety.These questions consisted of rating scales and narrative responses.Future workTo develop an assessment tool to detect death anxiety in a hospice setting,To develop a CBT model specifically for the treatment of death anxiety.
P151 Real time reporting pilot in end of life care
Authors: Bake Jane , Cooper Marie 
Published: October 2013

BackgroundIt is acknowledged that to date, capturing meaningful and timely feedback from patients within the last year of life, and their families, remains a challenge.Project aim and objectivesThe objectives of the project were to ascertain the acceptability and usefulness of a real time survey and reporting system to capture the experience of patients, families and carers receiving end of life care.Organisations within Lincolnshire were invited to join the pilot and four different care settings, where end of life care is commonly provided were engaged; care home, persons own home, hospice and hospital.ApproachSurvey questions were tailored to each care setting with volunteers and staff inviting participants to use a hand held ‘ipad’ device to feedback their experience of care; alternative options, such as web link and paper survey, were also offered.Outcomes and applicationThe pilot was successfully implemented across all four different care settings.The use of the devices and the length of the survey were acceptable to individual receiving care and their family member.The trial of a reworded ‘family & friends ‘question with those at the end of life proved acceptable to the majority of usersThe role of the volunteer was instrumental in engaging participants. Volunteers expressed satisfaction and reported back on the added value of one to one engagement with survey participants.Anecdotal feedback from the volunteers and staff suggested that patients and carers were happy to participate and expressed enjoyment in taking part. “Patients appreciate the opportunity to speak to someone and to have their voice heard as well as trying new technology”Provides timely, concise and meaningful information to service providersProvides opportunities for organisations to benchmark end of life care county-wideNext phase will seek to inform on further learning for a national roll out