bluuebunny/crossref_metadata_2025 huggingface dataset:
P136 Journey for Men - A support Group
Authors: Benson Kevin , Gillespie Dorothy
Published: October 2013

The Journey for Men group was started to provide a safe place for men to explore their feelings.

The group consists of men who have either lost a child or are facing the loss of their child.

Aims

To provide a safe environment for men to openly discuss their feelings about their experiences of having a child with shortened life expectancy or losing a child.

To encourage open discussion on life issues, family dynamics, coping strategies

To encourage male friendships, social networking and an opportunity to feel a part of an informal support group.

Approach Used

A person centred counsellor facilitates the group providing monthly sessions in the evening at an agreed time.

Sessions are no more than two hours, unless a planned activity occurs. The sessions have no fixed agenda. Chip butties are provided as the men often arrive after work.

Attendance is open ended which encourages growth but also allows men to move on.

Once a quarter an activity is provided away from the hospice to encourage relationship building and social networking.

To date the men have discussed very challenging issues such as:

Support, caring and friendship among men.

Facing and working on restrictive and destructive aspects of the male gender role

Opportunity to discuss supportive roles usually filled by women in the home and in professional settings.

Attention to unfinished business with our fathers and contemplation of the ways we have related to significant men in our lives.

Outcomes

The group is 2 years old and over 30 men have accessed this service and have reported the following changes as a result of attending the group:

Increased coping mechanisms

Increased ability to talk about their feelings with their partner

Greater ease in discussing difficult issues

Greater ease in exposing vulnerability.

Application to Hospice Practice

This is a tried and tested model in engaging a hard to reach group, lessons learnt from this experience are transferable to other hospices.
P137 A Whole School Approach to Loss, Grief and Bereavements
Authors: Miller Jane , Lindsay Jacquie , Kelly Jane , Guthie Michelle , McCurrie Emily
Published: October 2013

Many children and young people will experience bereavement, through the loss of a parent, sibling, grandparent, friend or pet. The term ‘bereavement’ refers to the process of grieving and mourning, and is associated with a deep sense of loss and sadness. It is a natural process; however its effects can be overwhelming.

During bereavement, children and young people can experience a great number of emotions, including sadness, anger, anxiety, guilt, fear, denial, disbelief and confusion. With the right help and support, most children and young people will not require professional help. According to the Child Bereavement Charity, what they do need is people who care and the understanding of familiar and trusted adults. Schools are well placed to provide such support.

A working group has been established with representation from GCC Education Services, Educational Psychology, NHS GG&C Health Improvement and Glasgow Hospice staff. The purpose of the group is to promote a planned and progressive approach to teacher training around supporting children and young people experiencing bereavement, loss and change in line with a Curriculum for Excellence, across educational settings to ensure consistency in relation to Bereavement & Loss. To support and equip staff to take forward learning around bereavement, loss and change with access to high quality resources and training. and to develop an online resource that can be updated as new information becomes available.

To date two study days have been facilitated each with 30 delegates from a range of early years, primary secondary and special needs schools. The evaluations were extremely positive. Future study days are in the planning process with the aim that these days will be ran twice yearly for the foreseeable future. The online resource is complete with a launch date planned for Summer 2013.
016 Barnsley Hospice - “Mapping Our Communities”
Authors: Barnett Richard , Carey Ian , Conrad Laura
Published: October 2013

Barnsley Hospice offers a broad range of services to an adult population of approximately 177,000 individuals across 127 square miles of the borough.

As in many hospices, there exists a wealth of data that, if extracted, analysed and presented in the appropriate manner, has the potential to streamline operations, help focus valuable resource and improve outcomes across all areas. A recent move by the Local Authority to create six new ‘Area Councils’ with localised budget and decision-making responsibilities has been seen by the hospice as an opportunity to take a more focused approach on community engagement with a key aim being to extract and merge relevant data to deliver an overall ‘view’ of demographics, patient activity, fundraising and key stakeholders within each area.

In order to engage with our communities, the hospice primarily needed to engage itself in the process and value of data. Data from different systems was cleansed, refined and combined into a single set and uploaded into the Google Fusion Tables product in order to display it visually on a Google Map. In addition to this, additional datasets were mined from public sites such as Health & Social Care Information Centre in order to enrich and validate the view. The map is layered, allowing various elements to be enabled/disabled according to what the individual viewer wishes to see.

The opportunity to interact with data in a ‘visual’ way has realised several key outcomes with some specific examples including:

Enhanced engagement in data across the hospice

Identifying geographic areas that may need additional focus on patient referrals

Defining targeted fundraising activity

Producing an overall picture of activity across the different areas

The tools used are, at the time of writing, currently free for non-profits and can significantly assist hospices to realise the potential of the information they hold.
P138 Cooking with chris: The teenager programme
Authors: Brocklehurst Tania , Sears Gill , To Chris
Published: October 2013

Strobe and Schut’s (1999), Dual Process Model suggests that a healthy grieving process involves oscillating between life restoration and grief orientation activities. Following the success of the Hospice of St Francis, 2012 bereaved adults “Cooking with Chris” programme, we developed a 5-week teenagers course. This is a difficult age group to connect with. Food was used as a therapeutic bridge. Vital cooking skills were learnt and the experience and feelings of loss and grief addressed.

Bereaved teenagers between 11 and 18 years from the Hospice fortnightly ‘drop in’ took part. They had experienced the death of a close family member. Ideally, they attended with a significant adult.

After introductions and a practical induction to the hospice kitchen, weekly themed menus such as ‘Amazing Mince’ and ‘Sausage Surprise’ were produced. Undertaking the course was not without its challenges. There were no existing guidelines. One aspect was the emotional impact on the facilitators. A robust debriefing process was crucial for promoting understanding and resilience in the course staff and volunteers. Further anxiety was overcome about teens messing around if bored and how to control such behaviour in a busy working kitchen, whereas the previous adult groups have been very noisy, the teens were relatively quiet, probably as they were so busy concentrating!

Highlights included seeing the teens coming out of their shells and observing the parents working with the children. Parents found support in each other. Feedback commented how important it had been for their teen to come back to the hospice to do something enjoyable, adding positive memories to the sad ones she held of her Father dying there.

We believe that this programme provides innovative bereavement support for teenagers in a therapeutic, meaningful and fun way. Guidelines for others doing similar have been produced.
P139 Building capacity and compassion: piloting a collaborative project to enable young people to support others who experience death, bereavement and loss
Authors: Archer Nikki , Owen Pat , Beckett Jane
Published: October 2013

St Giles Hospice has worked in collaboration with a local secondary school to pilot a 1hour workshop for Year 8 pupils as part of their PSE programme. The work shop was accredited by Education Transformation, Staffordshire Education Authority and was facilitated by trained volunteers. Students were invited to create a young person through whom they were able to explore issues relating to death, bereavement and loss. Over 200pupils participated.

Peer support is a key aspect of the support young people identify as being helpful in enabling them to adapt and cope with bereavement. Building capacity and compassion within our community is a key strategic aim.

Evaluation

A number of key themes were identified from the students feedback. The students felt it enabled them to:

listen to each other

understand others feelings

respecting difference

talk safely about death, bereavement and loss.

understand the impact on the listener

Only 5 students stated they felt they had gained nothing from the session

The facilitators feedback indicated that generally students were:

engaged and eager to share their ideas and experiences.

enabled to understand issues relating to death, bereavement and loss.

enabled to identify how they might support a friend who had suffered a loss

The role of the teacher and the need for the practicalities to have been agreed was highlighted.

Teachers feedback indicated that the workshop was well delivered, helpful and informative giving an opportunity for young people to understand the issues.

The project forms part of the Hospice’s programme for building compassion and capacity within our local community. Additional opportunities for fundraising and volunteering were identified. We plan to build on the success of the project by exploring opportunities to work in partnership with other local organisations to deliver the workshops.
P140 Kylie, Jason, Chantelle and Jess: creating characters as a catalyst for change. Enabling the community to understand and meet the needs of young people experiencing loss and bereavement
Authors: Archer Nikki , Coleman Jenni , Rodgers Carol , Chetwynd Helen
Published: October 2013

A collaborative project between St Giles Hospice and Lichfield District Safer Community Partnership was undertaken which aimed to

build sustained confidence and capacity of community staff to enable them to help and support young people who are coping with loss and bereavement.

For children and young people within our local community to be better supported and understood through their loss experiences

There is strong evidence that bereavement and the changes that accompany it can make children and young people vulnerable to poor outcomes, particularly in disadvantaged circumstances. Many children and young people are able to accommodate and adjust to their loss if they receive the right help and support through their usual networks, however, those who work with young people tell us they feel ill equipped to support young people who have experienced loss and bereavement.

During a half day workshop participants were afforded an opportunity to explore death, dying, bereavement and loss through the creation of a character based within their own experiences.

Pre and post workshop participants were asked to rate how confident they felt

talking to young people about death and dying?

supporting a young person who has been bereaved?

The results were very positive.

58 attended

94% assessed themselves with a higher post workshop score, the average score increased from 5 to 8 for both questions. All valuedthe workshop.

A follow up focus group was held 9 months after the initial workshop. Feedback demonstrated the ripple effect the workshop had ona personal and professional level. There was evidence that the increased confidence had been sustained.

This project demonstrates how the hospice is engaging with it’s local community to build capacity and better equip everyone in supporting young people experiencing loss and bereavement.
P141 A Review of The Multi Disciplinary Team’s (MDT) perception of the psychosocial services team’s (PST) intervention on the in patient unit (IPU)
Authors: Riley Martin
Published: October 2013

This project considered how counselling is offered, accessed, received and perceived on the In-Patient Unit (IPU) at Hospice in the Weald. Questions were formed about adapting and modifying the existing service to better meet the needs of our service users.

Unstructured interviews were held with professional MDT groups, inviting them to discuss perceptions of psychosocial care and how patients’ needs are met on the IPU. Sessions were audio recorded, transcribed and analysed.

A new model of care was proposed. Counsellors rotated through IPU for 6 weeks. At the end of the rotations, each counsellor was interviewed, as was the larger MDT (in one collective group). Interviews were recorded and salient learning points identified. After each rotation, questionnaires were given to IPU staff to identify the benefits, things to change and give feedback.

We learned that traditional methods of referral, assessment and practice of counselling are inappropriate to the specialist setting of in-patient care. Questions about ownership of psychosocial care, referral processes, multidisciplinary aspects of collaborative working, audit/review and IPU admissions for psychological care were asked and partially answered in the study. Interviewing staff after the change in practice revealed much more satisfaction with the counselling service and many advantages arising from the change in practice. Improved MDT working and speed of access to counselling were cited most frequently.

The wider implications include considering how we modify our practice to better meet the needs of our service users. Working differently may lead to investigations about what we call this approach to the provision of psychological support to in-patients and their relatives. For some it’s still counselling, for others it’s an exciting challenge to expand both their practice and capacity to offer support to those facing the end of a life; particularly those who otherwise reject talking therapy.
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

Aims

To qualitatively explore staff members’ experiences of discussing preferred place of death (PPD) with patients at the Marie Curie Hospice Edinburgh (MCHE).

Introduction

National 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.

Method

Six 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.

Results

Four 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.

Conclusion

These 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

Introduction

In 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.

Aim

To 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.

Method

28 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 felts

Making a web of support using a ball of wool to create a shared bond

Making an interactive advent calendar which featured on the Hospice website throughout December creating a meaningful focus as families faced a first Christmas.

Results

Children and families unanimously placed a high value on the quality of the event in terms of:

Therapeutic value

Facilitating dialogue which acknowledged the loss of the person who had died

Making meaningful memories

Reducing the sense of isolation within families

Staff 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

Context

Introduced 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 Practice

Externalising 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’.

Discussion

Externalising 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

Introduction

In 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.

Aims

The aims of Life Stories are to provide a space for reflection and story telling for patients who are low in mood or anxious.

Methods

The 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.

Results

The 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”.

Conclusion

Positive 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 Ecomaps

Dr 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

Context

Forecasts 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.

Proposal

There 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 neighbours

Facebook friends

Work colleagues

Members of groups or clubs

The 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 together

For 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 results

The 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 Steps

Formal 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/context

Historically 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.

Aim

To establish a non-palliative lymphoedema service under an AQP contract as an extension to the existing experienced hospice lymphoedema service.

Approach used

Hospice 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.

Outcomes

Patients 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

Background

Expressive 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.

Aims

To explore & evaluate the use of documentary film making techniques in PC to support families and patients.

Method

A 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.

Results

12 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.

Conclusion

The 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

Aim

To test a methodology for use in understanding what is meant by ‘spiritual need’

Background

Nurses 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.

Method

The 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; and

indicators(objective and subjective) of spiritual need.

Finally, participants wrote a brief, summary description of the spiritual need, which they further refined with their colleagues.

Result

The 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 practice

With 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 anxiety

is the "feeling of dread, apprehension or solicitude (anxiety) when one thinks of the process of dying, or ceasing to ‘be’." (1)

Introduction

Recognition 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.

Aim

To establish current level of understanding, assessment and management of death anxiety at the Hospice of St Francis.

Method

Inpatient staff completed an anonymous questionnaire to highlight :

their understanding of the concept of death anxiety

confidence staff feel in diagnosing and assessing death anxiety.

subsequent management of death anxiety.

These questions consisted of rating scales and narrative responses.

Future work

To 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

Background

It 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 objectives

The 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.

Approach

Survey 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 application

The 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 users

The 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 providers

Provides opportunities for organisations to benchmark end of life care county-wide

Next phase will seek to inform on further learning for a national roll out
P152 Making user involvement happen
Authors: Dee Frankie , Widlake Jutta
Published: October 2013

Background

Stakeholders need a voice that is focussed on the quality of a service rather than numbers. They want to provide feed-back and make recommendations developing a true partnership. User involvement can provide this process. A group was set up 3 years ago to develop this and has now moved from “meeting” to “making happen”

Aim

Help in identifying areas requiring improvement

Demonstrate the patient’s right to have a say in their care. (NICE, 2004).

Demonstrate compliance with the End of Life Care Strategy (DoH, 2008).

Legal imperative for all organisations providing NHS funded services. (National Health Services Act 2006, Local Government and Public Involvement in Health Act 2007, Equity and Excellence: Liberating the NHS, 2008)

Materials and methods

A steering group was set up incorporating senior members of staff including a Trustee and the Chief Executive. This group identified various methods for involving our stakeholders which included

Interviewing patients, carers, volunteers and paid staff

Listening exercise with carers

Questionnaires

Productive Ward Series

a template for writing reports on these activities

a leaflet to hand-out giving an explanation of “Involvement”

Results

As a result of this we are now:-

Piloting Nurse Led Clinics

Opening Day Care to bereaved carers

Using a new discharge planning template on the inpatient unit

Implementing a “Carer’s Break” scheme via Day Care

Developing a complementary therapy strategy based on user feedback about the value of this service to them

Conclusions

The moving from “meeting” to “happening” has helped to promote the principles of equality, fairness and inclusiveness by actively seeking to engage with our stakeholders including our staff.

The identification of services valued by patients and their carers has ensured that our finances are spent in addressing the needs of our patients rather than what we consider their needs to be.
P153 Service User Group (SUG) - From inception to beyond
Authors: Thompson Doreen
Published: October 2013

Background

To establish a SUG giving patients, carers, staff and members of the public opportunity to engage in improving hospice services.

Involvement covers a range of activities, from consulting service users about their views in partnership, to aid the development of projects or services.

Ensures the views of patients, carers and the public are listened to, ensuring that we continue to maintain excellence within our service now and into the future.

Aims and objectives

SUG established to enable the hospice to provide evidence of consultation on matters directly related to patient care.

SUG involved in consultation on available information for service users.

Review and approve production of literature to ensure service users receive relevant information.

SUG involved in fund raising and promotion of hospice services.

SUG ensures service users input into service provision, promoting standards of excellence in patient care

Approach used

IPU Sister identified as project lead.

Advertised to promote development of Service User Group. Invited participants to join via appropriate communication channels.

Guest speaker utilised to drive engagement.

Outcomes

The SUG is involved in decision making on hospice improvements and have participated in workshops with a local Cancer Network Group. A service user and the Network group leader were key speakers at the group conference. The SUG have worked on patient feedback and audit tools and information leaflets for patients and families.

The SUG were runners-up in the Patient Experience Network (P. E. N.) awards 2012.

SUG has forged links with the local Hospital patient partnership forum. Representatives attend the meetings of both groups.

With a diverse, growing local population the SUG helps to reflect our local community needs. Their unique input helps the organisation see new perspectives on service development.
P154 Food and nutrition in a hospice: From audit to action
Authors: Tsiompanou Eleni , Day Teresa , Knight Andrew
Published: October 2013

In 2011, Princess Alice Hospice (PAH) participated in the test phase of the Nutrition and Hydration Audit tool which was created jointly by the Help the Hospices Food and Nutrition Group (FNG) and the National Audit Tools Group (NATG)1. Since this pilot audit was completed a number of steps were taken to reach standards that were highlighted by the audit:

A ‘Nutrition Requirements Tool’ was introduced on the ward. Further work has been undertaken to develop this tool.

Understanding the patient experience is at the heart of hospice care. We asked patients on the ward and in Day Hospice to tell us what they thought of our food service. Patients told us that the food and drink service that we provide is excellent. Areas of potential improvement are: protected mealtimes; attending to cultural & religious requirements, allergies and intolerances, special diets; giving written information re: food service; menus and food portions.

We provided regular teaching/training sessions for internal and external staff and volunteers. Our training enables healthcare professionals to become more involved in establishing nutrition as part of the patient’s care plan and actively listen to patients and carers, offering support for their needs in relation to foods and lifestyle.

An eight-week support and education programme for patients and carers was designed in Day Hospice, offering up-to-date information from our multi-disciplinary team on nutrition and diet, lifestyle and symptom control.

Our Nutrition Steering Group meets to promote the role of the multidisciplinary approach to nutritional management and care of our patients.

Princess Alice Hospice is committed to delivering safe and high quality nutritional care to people with life-limiting illnesses, their families and carers. We are keen to share our results and experience with others and to improve further our service.
P155 Making sense of shades of grey!: Impact of hospice ultrasound use on patient care
Authors: Jones Tim , Groves Karen
Published: October 2013

Background

Patients with advanced disease require transportation to hospital for ultrasound identification of abnormal fluid and location marking. This is not only exhausting, but introduces service delays, increases work for an already overburdened hospital radiology service and reproducing the exact position of original scan is difficult.

Aim

Does the introduction of portable ultrasound improve patient, carer & health professional experience and co-ordination of care?

Method

Two hospice doctors underwent the necessary ultrasound scanning training for non radiologists. Following a selection process, an appropriate portable ultrasound machine was purchased, and support agreed with one of the local radiologists.

Results

A retrospective review of thirty months ultrasound use was undertaken. One hundred and four patients have had one hundred and sixty eight separate scanning episodes resulting in eighty five procedures. Uses have included confirmation of presence & location of abdominal ascites prior to paracentesis, confirmation of location of pleural fluid prior to aspiration, confirmation of full bladder prior to catheterisation (urethral or suprapubic), monitoring the growth of large intra-abdominal malignant cyst, confirmation of hydronephrosis, biliary stent placement & locating nerve in real time neural blockade. The poster includes detailed analysis of use.

Conclusion

On each occasion a definitive clinical question was answered. Patients report greater satisfaction from a speedier service, families feel that patients are less fatigued by the interventions and staff feel able to give a better, more responsive, safer service, adhering to current best practice guidance. Being able to ultrasound patients in the home or in outpatients has prevented unnecessary admissions where the cause of abdominal distension had previously been in doubt.
P156 Lung clinic to meet the needs of patients with non malignant lung disease at Garden House hospice
Authors: Wallis Diane
Published: October 2013

Introduction

In 2011 the Department of Health Outcomes strategy for COPD suggested that the needs and preferences of patients for care at the end of life were not being met.

The model of Day Hospice did not meet the needs of this group of patients; therefore a proposal was put forward with the support of the local chest physicians to provide a service accessible to COPD patients and their carers.

A pilot clinic was set up for twelve months. Staffed by a nursing Sister, a physiotherapist and trained volunteers.

Aims

The aim was to develop an accessible multidisciplinary service that met the individual needs of the patients, family and carers. This included transition to palliative care services, psychosocial support, symptom management and advanced care planning.

Method

During the pilot and the following year the numbers of patients attending was monitored. Also the source of referrals was examined. Some anecdotal feedback was gained from the referrers. The service was adjusted overtime to maximise accessibility for the patients.

A qualitative questionnaire was produced in December 2012 to find out the perceived benefits for patients attending the clinic and if there was anything else that could be provided. Nine questionnaires were completed.

Results

The results of the questionnaire suggested that the patients were fearful of attending the hospice beforehand, however, once attendance had commenced their psychosocial and symptom control needs were being met. The results of the questionnaire will be made available.

Conclusion

The clinic is meeting the patients’ needs, therefore it will continue in its current format. There is a need to discuss and consider strategies to educate the referrers on Hospice philosophy and the aims of the clinic so they can help change the fearful expectations of the patients on referral.