bluuebunny/crossref_metadata_2025 huggingface dataset:
Occupational stress, job characteristics, coping, and the mental health of nurses
Authors: Mark G. , Smith A. P.
Published: September 2011

Objectives. This study investigated the relationships between job characteristics and coping in predicting levels of anxiety and depression in nurses. The study was based on current theories of occupational stress, and predictors included job demands, social support, decision authority and skill discretion control, effort, over‐commitment, rewards, and ways of coping. It was predicted that job demands, extrinsic effort, over‐commitment, and negative coping behaviours would be positively associated with depression and anxiety, and social support, rewards, decision authority, skill discretion control, and positive coping would be negatively associated with depression and anxiety.

Methods. Participants were 870 nurses, who responded to a bulk mail sent randomly to 4,000 nurses from the south of England.

Results. The results showed that job demands, extrinsic effort, and over‐commitment were associated with higher levels of anxiety and depression. Social support, rewards, and skill discretion were negatively associated with mental health problems. Few interactions were found between the variables. Coping behaviours significantly added to the explanation of variance in anxiety and depression outcomes, over and above the use of demand–control–support, and effort–reward factors alone.

Conclusion. The results from the study demonstrated the importance of coping factors in work‐stress research, in accordance with the multi‐factorial premise of transactional stress models. It is argued that multi‐factor research is needed to help develop effective organizational interventions.
Negative self‐conscious emotion and grief: An actor–partner analysis in couples bereaved by stillbirth or neonatal death
Authors: Barr Peter
Published: September 2011

Objectives. The purpose of the present study was to examine the intrapersonal (actor) and interpersonal (partner) relationships of personality proneness to negative self‐conscious emotion (shame and guilt) to grief in couples 13 months after a perinatal death.

Design. A cohort study using self‐report questionnaire measures of grief, shame, and guilt.

Methods. The participants were 63 Australian couples bereaved by stillbirth (N= 31) or neonatal death (N= 32). The actor and partner relationships of chronic shame (Personal Feelings Questionnaire‐2), situational shame (Test of Self‐Conscious Affect‐2), and survivor guilt and omnipotence guilt (Interpersonal Guilt Questionnaire‐67) to grief (Perinatal Grief Scale‐33) were explored using the Actor–Partner Interdependence Model (APIM) method of dyadic analysis.

Results. The correlations between the self‐conscious emotions and grief were invariably larger in men compared with women. Chronic shame had a significant actor relationship with grief in women and men and a non‐significant partner relationship in both sexes. Situational shame and survivor guilt had significant actor relationships with grief in men and significant partner relationships in women. Omnipotence guilt had a significant linear actor relationship with grief in men and a significant U‐shaped quadratic actor relationship in women.

Conclusions. Negative self‐conscious emotions had intrapersonal relationship with grief in men and both intrapersonal and interpersonal relationships with grief in women. A moderate level of omnipotence guilt was associated with lower grief in women. APIM dyadic analysis furthers understanding of the relationship between personality and parental grief following a perinatal death.
Termination of psychotherapy: The journey of 10 psychoanalytic and psychodynamic therapists
Authors: Fragkiadaki Evangelia , Strauss Susan M.
Published: September 2011

Objectives. Literature on termination originates mainly from clinical and theoretical accounts as well as practitioners’ autobiographical reports. There is, however, a paucity of psychological research on termination. The purpose of this study is to examine the process of termination of therapy based on therapists’ narratives of experiences of endings with patients.

Design. Grounded Theory methodology has been applied in this study in order to conceptualize the process of termination from the therapist's perspective.

Methods. Ten psychoanalytic and psychodynamic therapists were interviewed for this study.

Results. Grounded Theory analysis of the data revealed five central categories: therapist as a person, therapist's awareness of termination, development of therapeutic relationship, working through termination, and the aftermath (post‐termination phase).

Conclusions. The results offer a Grounded Theory model of the therapist's journey through termination of therapy with patients. Subcategories and their relationships will be explored. Implications for clinical practice, limitations and suggestions for further research will be discussed.
Early maladaptive schemas in bipolar disorder
Authors: Ak Mehmet , Lapsekili Nergis , Haciomeroglu Bikem , Sutcigil Levent , Turkcapar Hakan
Published: September 2011

Objective. According to the cognitive model of depression, negative schemas, formed in early life, increase susceptibility to depression. The objective of this study was to investigate schemas that are proposed to increase susceptibility of depression in bipolar disorder patients who have had depressive episodes.

Method. Eighteen patients diagnosed with bipolar disorder according to DSM‐IV and a healthy control group (N= 20) constituted the sample of the study. The Beck Depression Inventory, Young Mania Rating Scale, and Young Schema Scale were applied to patients in order to determine the level of symptoms and schemas.

Results. When the scores obtained from Young Schema Scale were compared between groups, significant differences were observed between bipolar patients and control group on all the schemas except abandonment, emotional deprivation, defectiveness, vulnerability to harm or illness, and approval seeking. The negative schema scores of bipolar patients were significantly higher than those of the control group.

Conclusion. Of all schemas included in the Young Schema Scale, the scores of bipolar group were higher than the scores of the control group. These findings suggest that, in cognitive‐based psychotherapeutic approaches for patients with bipolar disorder, it would be more effective to focus on schemas related to the perception and allowance of feelings at the proper time and the instability of self‐perceptions.
Compassionate community networks: supporting home dying
Authors: Abel Julian , Bowra Jon , Walter Tony , Howarth Glennys
Published: September 2011

How may communities be mobilised to help someone dying at home? This conceptual article outlines the thinking behind an innovative compassionate community project being developed at Weston-super-Mare, UK. In this project, a health professional mentors the dying person and their carer to identify and match: (a) the tasks that need to be done and (b) the members of their social network who might help with these tasks. Network members may subsequently join a local volunteer force to assist others who are network poor. Performing practical tasks may be more acceptable to some family, friends and neighbours than having to engage in a conversation about dying, and provides a familiarity with dying that is often lacking in modern societies, so in this model, behavioural changeprecedesattitudinal change. The scheme rejects a service delivery model of care in favour of a community development model, but differs from community development schemes in which the mentor is a volunteer rather than a health professional, and also from those approaches that strive to build community capacity before any one individual dying person is helped. The pros and cons of each approach are discussed. There is a need for evaluation of this and similar schemes, and for basic research into naturally occurring resource mobilisation at the end of life.
RACE (Rapid Access to Carers at End of Life)
Authors: Biggs Julie , Westwood Debbie
Published: September 2011

Introduction

The Rapid Access to Carers at End of Life service aims to provide a rapid response Hospice at Home night service for the whole of Worcestershire for patients at the end of life when all other appropriate sources of support are unavailable.

Aims

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To provide support for carers who are struggling to cope and so enable patients to remain at home

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To prevent avoidable admissions and readmissions to hospital and to enable rapid discharges

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To allow time to review and establish suitable packages of care To support district nursing teams at times of patient crisis by providing rapidly accessible end of life nursing care.

Methods

Carers are on-call to provide care at any time of the night. Requests for shifts will be generated by a District Nurse or Community Practitioner who will have completed a risk assessment of the patient and home environment. The service will provide care up until an alternative care package is arranged, up to a maximum of 48 h.

Success will be analysed by the number shifts provided, feedback from patients, patients' families and referrers to the service and analysis of intervention outcomes, for example number of admissions avoided or discharges expedited.

Results

The feedback we have had from referrers and patients has been positive and supportive of the scheme. We have received a total of 41 referrals which resulted in the provision of a total of 61 nights of care which equates to over 535 h of patient support.

Current conclusions

Initial findings suggest that the service will continue to expand and the number of referrals increase as the Community Practitioners and other referring staff become more familiar with the service. This is a 6 month pilot and we will be conducting a full evaluation at the end of this period.
Evaluation of a current 24/7 service provided by a community palliative care team
Authors: O'Halloran Helen , Hetherington Linda
Published: September 2011

Introduction

The ‘End of Life Care Strategy’ recommends the importance of 24/7 community support enabling people to be cared for in their place of choice. The hospice has provided this service since 1986. The service provides support for patients, carers and healthcare professionals. Literature shows that there is little research into out of hours (OOHs)palliative care provision.

Aims

To evaluate a long established service by exploring views of stakeholders.

Methods

A qualitative approach through focus groups, structured, semi-structured, telephone and face to face interviews. A purposive sample was used to select specific stakeholders. Interviews and focus groups with clinicians from the hospice and local district nursing teams, GP service representatives and hospice in patient unit staff. Analysis of key documents; service level agreements with PCTs, operational policy and record book of all contacts made to the service.

Results

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Total number of calls received 614

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Weekend/Bank Holiday calls 401

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On call calls 213

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Visits undertaken 34.

Primary reason for calls from healthcare professionals was for symptom management with 35.91% (weekend/bank holiday) from district nursing staff. 58.39% of calls were from carers.

Stakeholders were positive about the present service model.

Discussion

There were recurring themes around more effective cross service boundary communication and improved knowledge and skills transfer to improve community staff competence and confidence.

Conclusion

The service model used is valuable for community healthcare professionals, patients and carers. The service responds to need and provides continuity of care over the weekend/bank holiday and OOHs period. Data collected from hospice nursing, medical staff and local healthcare providers ascertains what works well in practice with recommendations towards potential service development and improvement.
Partnership working to deliver seven day access to specialist palliative care
Authors: Foster Alison , Livingstone Tracy , Cadell Gail
Published: September 2011

Introduction

Provision of 7-day specialist palliative care services in all care settings has been identified as a key standard for statutory sector providers for a number of years. In 2009, in response to the recommendations of the All Wales Palliative Care Review and the Palliative Care Implementation Board, a Ministerial Letter was issued throughout Wales, requiring implementation of 7-day working for specialist palliative care.

Aim

This paper will firstly, discuss the development of partnership working between a statutory sector specialist palliative care team (SPCT) and independent sector Hospice to deliver 7 day access to specialist palliative care assessment and intervention, across all healthcare settings; secondly, it will discuss the benefits for patients, families, services, the wider health community and economy.

Method

The SPCT Clinical Nurse Specialists (CNS) base their service from the Hospice at weekends and Bank Holidays, where out of hour's advice calls from primary and secondary care have historically been received. This decision was made to support safe lone working, governance, access to medical and hospice support for CNS's, and streamline access to the service.

Results

Evaluation of this initiative provides evidence of:

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Closer integration and team working

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Rapid access to specialist palliative care, across primary and secondary care, improving outcomes and experiences for patients and their families, and increasing quality and standards of care

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Access to hospice inpatient admission for patients requiring urgent transfer into a specialist palliative care bed, at weekends and Bank Holidays

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Prevention of unscheduled acute hospital admissions

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Support for providers of general palliative care, throughout primary and secondary care.

Conclusion

Partnership working between the SPCT and Hospice has enabled an innovative approach to the delivery of 7 day working that benefits patients, their families, and service providers.
Helping the developing world…..the story of an outward looking hospice
Authors: Collins Karilyn
Published: September 2011

A hospice in the UK became linked with Africa when one of the medical staff left in 2001 to set up a hospice in Tanzania. The aim was to extend some of the ethos and philosophy of the hospice movement to the developing world. The link has involved six staff visits from the UK to Tanzania and six staff visits the other way. These visits have been of great benefit to both sides. A description of this link won an essay prize from the Tropical Health Education Trust in 2007.

The original hospice in Tanzania has been the centre for a roll out programme, using the Help the Hospices Toolkit and mentoring, to set up teams in many other district and regional hospitals. The UK hospice has encouraged this mentorship by allowing their staff sabbaticals to assist in setting up palliative care teams, to give confidence in prescribing morphine and help in making community links to establish home visiting. The latest Tanzanian hospital to receive mentorship has been the control site in research, as yet unpublished, showing the difference that palliative care training makes to the quality of life of patients in HIV care and treatment.

The benefits of this link to Tanzania are obvious, education, books, equipment and experience but those to the UK hospice are less immediately evident. For the staff, they include life changing experiences, and relationships, for patients and relatives, the distraction of hearing about the struggle to get palliative care and pain relief into the developing world. Hospices have often been inward looking, patient orientated places that need to raise funds and keep up standards but this need not preclude involvement worldwide. This link is a replicable model that proves the benefits can be mutual without jeopardising standards or fund raising at home.
Bridging the gaps: a hospice's response to the needs of people living with advanced heart failure
Authors: Longton Katie , Laverty Diane , Richardson Heather
Published: September 2011

Problem identified

Heart failure (HF) affects millions of people worldwide in almost epidemic proportions with higher morbidity and mortality than many cancers presenting a major burden on individuals, families and healthcare resources. The unpredictable nature makes HF difficult to manage, to identify when referral to supportive and palliative care (PC) is appropriate, and when end of life is nearing. The national agenda is beginning to acknowledge the importance of addressing these issues. Healthcare professionals need to adapt their care, practice and services to reflect this. Work is required to address the common misconception that Hospices are only for people dying from cancer.

Solution

A major grant from Help the Hospices and The Burdett Trust enabled an inner-city hospice to employ a Heart Failure Nurse Specialist to address the above issues. The work aims to:

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Improve awareness of benefits and appropriateness of supportive and PC within the HF community (patients and professionals)

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Establish a new model of care to suit clients needs and illness trajectory

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Establish joint working and shared learning opportunities between PC and HF professionals

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Development of a HF Wellbeing Clinic (HFWBC) opening access to the Hospice, introducing support and services earlier in patients' pathway.

Findings

The project already has significant findings:

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Patients with suspected HF are referred to the hospice with advanced symptoms prior to formal diagnosis or treatment optimisation as per NICE guidelines

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HF patients have embraced the HFWBC and other hospice services

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Communication and collaboration is improving between PC and HF professionals.

Future plans

The project plans to:

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Re-audit referral patterns, numbers and patient outcomes for HF patients

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Conduct training needs analysis to formally highlight gaps in knowledge

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Develop a trigger tool and referral pathway into PC services

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Review of alternative models of care.
The breathing space clinic: a pilot to support the holistic needs of patients with advanced COPD
Authors: Hodson Matthew , Jennings Rebecca , Martin Jonathan
Published: September 2011

The Breathing Space Clinic: a multi-disciplinary, inter-organisational hospice-based pilot clinic to support the holistic needs of patients with advanced chronic obstructive pulmonary disease (COPD).

Introduction: In contrast to many other conditions, mortality trends indicate that the prevalence of COPD is increasing. Studies show that COPD patients' symptoms are at least as severe as those of patients with lung cancer and that this group is underserved by specialist palliative care.

There are currently no reliable means of identifying when COPD patients enter their last year of life. Breathing Space combines the specialist expertise of both COPD-specific and palliative care teams to provide information, non-pharmacological and pharmacological interventions, advance care planning etc. The clinic thus aims to maximise quality of life for patients with very severe disease in response to need rather than prognosis.

Aims

This presentation will outline the development and function of the Breathing Space Clinic, focusing on the rationale for our referral criteria and pathway.

Methods

Clinic development involved collaboration between the hospice, COPD patients, primary care teams and specialist respiratory teams across three London boroughs. It targets those patients with very severe COPD who have complex needs, including those arising from co-morbidities. Referral criteria are designed to reflect this approach and are grounded in an alternative model to that of palliative care provision for cancer patients. The referral pathway is designed to ensure NICE compliance. Relevant metrics are collected.

Results

Our presentation will include reflection upon early data from the pilot.

Discussion

Significant time and multi-disciplinary effort was required to develop the clinic concept to an operational level. Challenges were encountered in developing explicit referral criteria and these will be reviewed in light of the clinic metrics.

Conclusion

Collaborative interventions have potential to greatly improve patient care but require commitment and learning from all involved.
Breaking bad news to people with learning disabilities
Authors: Tuffrey-Wijne Irene , Giatras Nikoletta , Cresswell Amanda , Butler Gary
Published: September 2011

Introduction

Current models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this.

Aims

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To explore how people with LD understand and communicate about illness

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To explore the experiences and preferences of people with LD, families and professionals around breaking bad news

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To identify the factors that affect breaking bad news to people with LD.

Methods

96 participants took part in nine one-to-one interviews and 13 focus groups (including 3 on-line groups) across England. Participants included people with LD (21), family carers (37), LD professionals (26), general nurses including cancer and palliative care nurse specialists (13), doctors including GPs and palliative care consultants (8).

Results

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People with LD have wide-ranging views about whether and how they want to be told bad news

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Both LD and healthcare professionals lack confidence in communicating bad news to people with LD

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Many family carers want to protect people with LD from bad news

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Bad news should be given in chunks, depending on the person's abilities and needs. All those around the person with LD can and should contribute to this. Most people with LD make sense of bad news within their social context, rather than in a doctor's office.

Discussion

Rather than ‘breaking bad news’, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with LD has been produced and will be presented as a poster.
Transdermal opioids: are we plastering over the cracks?
Authors: Whyte Graham , Coackley Alison , Powell Paula , Clare Littlewood , Steven Simpson , Thompson Anthony
Published: September 2011

Introduction

Transdermal opioids such as Fentanyl and Buprenorphine are recognised as effective analgesics in the treatment of moderate to severe pain in patients with both malignant and non-malignant disease. However there is evidence to suggest that the knowledge of appropriate indications, pharmacokinetics, and dose equivalencies of transdermal opioids is poor, particularly among non-specialist prescribers. This is supported by drug safety alerts from the Medicines and Healthcare products Regulatory Agency highlighting reports of life threatening adverse effects and even death from unintentional overdoses.

Aim

To explore the prescribing patterns of transdermal opioids in palliative care patients in a UK Cancer Network.

Methods

A prospective audit was conducted over a 6 month period at 3 different sites. This incorporated palliative care patients in hospice, hospital and community settings. Data was collected following the initial specialist palliative care assessment of patients already prescribed transdermal opioids at the time of referral. Information was recorded relating to the original prescriber, documentation of indications, evidence of toxicity and use of breakthrough medication.

Results

A total of 50 case notes were audited. Key findings revealed that indications for the use of transdermal opioids were only documented in 26% of patients. Over a quarter of patients had evidence of adverse effects, mainly opioid toxicity. The toxicity correlated with the strength of the transdermal opioid preparation rather than incorrect prescribing of breakthrough medication. However, results also showed that there appeared to be a lack of understanding as to appropriate doses of breakthrough medication.

Conclusion

There are clear situations in which transdermal opioids can be effective and well tolerated alternative step 3 opioids. However these audit results would suggest that there is a need for more education and training particularly among non-specialist prescribers in order to ensure the safe prescribing and administration of transdermal opioids.
Learning from adult services: expert patients to expert parents
Authors: Twomey Christine , Busk Mary
Published: September 2011

A project funded under DH £30 million for children's palliative care.

Introduction

The Expert Parents project was based on the adult expert patients programme to give self-confidence to adult patients to take responsibility for the management of their own long term condition while encouraging them to work collaboratively with health and social care professionals.

Haven House Children's Hospice and Interface (a parent led forum in Redbridge) worked together in partnership to deliver 30 knowledge and skills training sessions in 3 months across Redbridge. The project aimed to help parents manage their child's condition effectively.

Aims

The sessions aimed to empower, inform and educate parents/carers to become more expert in the care of their own children.

The project aimed to raise the profile of disabled children and views them to be both a local and national priority.

The project was aimed at all groups of children with disability and palliative care needs. The project aimed to provide knowledge, skills and information for parents about services so that they can make informed choices.

Information was provided about care pathways and transition.

The project aimed to build supportive relationships between parents and professionals

Method

Parents and carers completed a standard questionnaire to evaluate each session

Results

Parent's valued learning with other parents, gaining support and experience diminished isolation. They had an increased awareness of the services available and started to develop a new network of contacts. There were 287 attendances by parents/carers overall.

Discussion

It was felt that the sessions allowed parents to open up and discuss issues, gave them hope for the future and made them feel positive. The project surpassed the expectations of the project team.

Conclusion

Many parents requested further training and highly rated the value of their sessions to become Expert parents.
Home based volunteers – bridging the gap between respite visits
Authors: Cook Amelia
Published: September 2011

Introduction

The project was conceived as a result of two observations. The hospice receives many applications from people keen to volunteer directly with children and young adults. Secondly the Care Team and Family Support Team observe that often simple practical matters can overwhelm families with a life limited child.

Aims

Practical and emotional support provided by volunteers could be a cost efficient means to offer ongoing support between hospice respite stays. The project both fulfills our vision that, “No child or young person with a life-shortening condition should journey alone or unsupported,” and considers the DH's end of life strategy championing the “Preferred Place of Care.”

Methods

Patient and family demand for home based volunteers was ascertained using a survey and semi-structured interviews.

Results

31% of service users responded, of which 97% (60 families) welcomed volunteer support at home. Numerous needs were identified that could be met by volunteers.

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Practical services – gardening, laundry or cleaning – especially during difficult times such as hospital admissions or another illness in the family

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Befriending – supporting the family on outings, spending quality time with siblings or the patient

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Specialist services – legal advice, for example, arranging power of attorney or writing a will, hairdressing, massage.

Recommendations for service development

Findings indicate that a home volunteer co-ordinator is essential to match volunteers with families appropriately, liaise with other hospice teams and support volunteers. To ensure the safety of the scheme risk assessments, managing families expectations and an extensive volunteer training and support programme will be necessary.

Project evaluation will involve eliciting feedback from volunteers, patients and families on the impact of home based volunteering. It is hoped that home volunteers will relieve the burden on families with a life limited young person reducing isolation, depression and anxiety and encouraging normalisation.
Part of the team? The experiences of support staff in British hospices
Authors: Turner Mary , Hemmings Rachel , Payne Sheila
Published: September 2011

Background

British hospices employ a wide range of support staff to provide services to patients and families. Support workers make an enormous contribution to the success of the organisation in which they work; however, little previous research has focused on these staff. The aim of this study was to explore the perceptions of support staff in relation to their roles and relationships with other groups of hospice staff.

Methods

Semi-structured interviews were conducted with 14 support workers from two hospices in the North West of England. Participants included gardening, maintenance, clerical, domestic and kitchen staff. Two managers were also interviewed to explore their views of support workers in the hospice. Site visits and non-participant observation were carried out in both hospices. A thematic analysis of the interview and observational data was conducted.

Results

Support workers perceived their roles to be vital to the care offered to patients and families. They reported substantial interaction with patients and families, and put patients' needs first. They were willing to be flexible in carrying out their duties, recognising the need to show consideration to patients and families, who they believed valued their contribution. However, although support staff perceived themselves as an important part of the wider hospice team, they sometimes experienced isolation and division from other staff groups.

Conclusion

In some cases support staff felt that they were invisible workers within the hospice. Despite the importance they and their managers placed on their roles, this was not always reflected in the acknowledgement and appreciation they received, nor in support and training offered to them. In order to fully utilise this group of staff, their roles and contribution to patient care need to be acknowledged by hospices.
The impact of the action learning set approach in nursing homes
Authors: Swani Tina
Published: September 2011

Introduction

Effective leadership is necessary to meet end-of-life care needs in Nursing Homes. This requires appropriate training and support.

An action learning set (ALS) was set up for this purpose, funded by the SHA, in partnership between a Hospice and University, facilitated jointly by Hospice CEO and University Senior Lecturer.

The presentation sets out:

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Process

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Rationale for the ALS over competency-based approaches

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Resulting outcomes for staff, clients and families

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The significant impact of a simple framework

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Sustainability issues

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Insight into QIPP agenda and preferred place of care.

Methods

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12 participants from 10 homes took part over 8 months

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Participants worked on real problems and met on equal terms as a peer coaching group for goal setting, planning and reflection

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Impact was evaluated by compiling changes and improvements.

Results

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Linking professional and personal attitude to mortality

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More confident conversations about future planning

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Greater engagement of residents and families

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More consistent care planning – improved systems

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Improved bereavement support

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Night staff better equipped to support residents' wishes

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Residents and families better heard.

Discussion

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As only eight homes were finally involved, successes and difficulties provide an incomplete picture.

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Good quality changes in practice have been sustainable due to culture, attitude and confidence being addressed.

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It has been difficult to sustain the ALS without ongoing facilitation. Attendance issues constantly challenge.

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Trust developed quickly in the ALS and proved an empowering factor.

Conclusion

The ALS approach provides an empowering, safe environment for setting stretch goals and achieving sustainable change. Ongoing improvement may require a longer period of facilitated support. The partnership of Hospice and University proved effective for developing trust for issue sharing and exploration.
A toolkit to support ventilated children and young people in children's hospices
Authors: Cooke Alison , Harris Sam
Published: September 2011

Children and young people who require Long Term Ventilation have heralded a new challenge for children's hospices across the UK. There has been growing recognition of the increasing numbers of those who are ventilator dependant and ongoing discussion about the appropriateness of their referral to children's hospice services. In addition there has been concern about the lack of consistency in caring for these children and young people and the need for further advice and guidance.

A significant and growing number of young people with long term palliative conditions are now receiving Long Term Ventilation as part of their palliative care trajectory. Many of these young people are now surviving into adult life and are likely to transition into adult hospice care as their disease progresses.

It is therefore likely that the issues, teaching pack, templates and information contained within the toolkit will also be highly relevant to adult hospice services.

The Children's Hospices UK (CHUK) Ventilation Toolkit has been funded through money from the first round DH £30 Million for Children's Palliative Care. It has been created by a team of professionals from across the UK, led by Alison Cooke, Director of Care at Rainbows Hospice for Children and Young People in Leicestershire and David Widdas, Consultant Nurse for Children and Young People with Complex Health Needs in Coventry and Warwickshire.
Better together carers programme
Authors: Lawless Sandra , Townshend Briony
Published: September 2011

Carers of palliative patients will often put their needs second to those for whom they are caring, but we know that their needs are great. Rapid changes in patients' condition and the emotional and relationship changes this brings are hard, requiring constant adaptation and emotional resilience.

The ‘Better Together Carers Programme’ was developed in consultation with carers, as a structured weekly programme which aims to bring support and education to carers.

Each 2 h session is facilitated by two qualified, experienced Palliative Care Social Workers, to promote a safe and stable environment for carers to build relationships with each other and the facilitators.

The sessions offered:

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An informal ‘check in’ and ‘check out’ from all

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Guest speakers to give carers practical advice/signposting, and also tools to aid them in their caring role

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Simple complementary therapy massage and relaxation techniques

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Nutritional advice – for patient and carer

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Creative therapies

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Managing difficult and crisis situations

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Self care

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Social time with refreshments, allowing space to build relationships and peer support networks.

The final session took the form of a candlelit supper for both carer and cared for person; this provided a positive ending to the course and also affirmed the value of the carer's role.

Evaluation showed carers had gained greater confidence and skills in their caring role, had improved knowledge of resources available and had set up informal ‘buddy’ systems, which had improved their psychological well being. They valued the balance between information and emotionally charged discussion/sharing and social time/checking in and out, which gave opportunity and permission to be light hearted and sociable. For them it made a real difference in being able to cope and we feel this to be an important model to share.
Clinical and marketing teams working in partnership to improve access to services
Authors: Sutherland Jane , Frame Jane
Published: September 2011

Improving access to palliative care has been high on the agenda for hospices for a number of years. Barriers to access are many and varied. Much work has been done to identify and reduce them but still evidence suggests that barriers remain.

In 2008 our marketing team carried out a consultation exercise to gain a better understanding of the challenges the hospice faced in improving access for our locality. Over 400 local people, service users and providers were asked their views. A range of methods were used including key stakeholder focus groups and one-to-one interviews with the general public.

Results

demonstrated significant barriers to accessing our services. Many were not aware of services on offer nor who could use them; and there was a real need for literature that clearly communicates the work of the hospice and the range of services it provides.

The consultation exercise resulted in a rebranding in 2009. Since then our marketing and clinical teams have worked in partnership to raise the profile of the hospice and reduce barriers to access through a range of promotional and marketing initiatives. We have produced a range of service information leaflets and clinical literature and have successfully developed networks and collaborative working relationships with colleagues in non-cancer specialities.

Some 3 years on we are beginning to see the results of our partnership working. We have achieved more by combining our marketing and clinical expertise than we could have achieved singularly. Statistics suggest that we are beginning to improve access to people not previously accessing our services well. While there is still a long way to go we can see that our joint working and enhanced information giving is raising the profile of our hospice and the services it provides, paving the way for more patients to access them.
Extending services and enhancing systems: working together to manage increased numbers of referrals
Authors: Sutherland Jane , Midgley Corinna
Published: September 2011

Improving access to palliative care for all patients with life limiting illness has resulted in a significant increase in referrals to specialist palliative care services. Expanding services to keep pace with increasing demand and ensure that all referred patients have access to specialist advice and clinical assessment in a rapid and timely manner has posed a challenge and placed greater emphasis on the importance of prioritising referrals according to need.

Extending services to cope with growing numbers of referrals has required innovative thinking and enhanced systems. Our service has seen a 24% increase in referrals over the last 3 years. As referrals have risen in number it has become increasingly necessary to look at referrals management and review our processing of them. Our key aim being to ensure that referrals are prioritised according to need and dealt with as quickly as possible.

We reviewed our management of referrals in a number of stages using a variety of methods including process mapping, audit and focus group work. Methods were chosen based on the size, needs and processes within each department. The review exposed a number of gaps, bottlenecks and inequities.

Finding solutions to our bottlenecks and to better manage referrals has been well supported by our use a standardised holistic assessment tool across the organisation. We use an organisationally adapted version of the Support Team Assessment Schedule -STAS (Higginson, 1989) to structure our assessment of patients against 30 factors across all required domains.

We are now working creatively to expand our use of the tool to prioritise referrals and manage departmental waiting lists. Evaluation has shown that using STAS within clinical departments has enabled us to enhance our method of processing and prioritising referrals according to need and ensure that we are better placed to meet demand.
Fireworks and feelings – reaching out creatively to young people through the storm of bereavement
Authors: Gardner Dee , Sullivan Paul
Published: September 2011

Children and young people are often shielded from the initial trauma of a terminal diagnosis of a parent or significant care giver, resulting in less time to come to terms with an imminent death than older family members. This may affect their bereavement. Fireworks and Feelings children's project encourages early, open support among peers.

To enable a sharing of experiences between bereaved young people, using choice and free expression, young people were invited to attend an art day.

They used creative arts as a medium for expression within a safe environment with clear expectations and a choice of artistic materials for all levels of ability; we had a shared, social lunch in the middle of the day, and they each chose one art work from the day for display in an exhibition of their works, later, continuing the sharing theme. The day was faciliated by volunteers with support and encouragement to express, with minimal instruction. The follow-up exhibition and celebration is for all participants and their families.

A positive experience of peer sharing which extended beyond the day with many of the young people swapping email address and phone numbers. Keeping in touch, sharing, understanding individual grief feelings and developing peer support enhanced well being and psychological health. The Exhibition reunited this group, and shared with family and friends the celebration of the special person and their achievement of expression.

Involvement in the arts assists in the development of mental and social health and well-being. It allows freedom of expression and playfulness. Young people create social and psychological bonds and relationships extending beyond the art day. There is exploration and expression of deeper levels, without words, providing an alternative method for those who may struggle to put words to the feelings around such an important and significant loss.
Sharing innovation to improve access to specialist palliative care: making a triage DVD training tool
Authors: Burrows Lesley , Toland Louise , Godfrey Sarah , Sen Michaela , Miah Yvonne
Published: September 2011

The widening access agenda and quest to extend palliative care services to all has resulted in a significant increase in referrals for community support. Working innovatively to create flexible, accessible and responsive services to meet increasing demand, our hospice developed an enhanced telephone triage service.

The telephone triage service plays an invaluable role in providing high quality specialist palliative care advice to increasing numbers of patients in the community. Audit of the clinical activity of both our community palliative care and triage services demonstrates that the addition of the telephone triage service has enabled us to deliver quality specialist support to 67% more patients in the community.

The success of the service and the outcomes it achieves has attracted much interest from other providers of palliative care. Requests for information, and for facilitated visits to observe the service in action were so frequent that we decided to produce a DVD and accompanying training package to support others in establishing a similar service.

A project group was formed to guide DVD production from the writing of the bid, to the marketing of the final product. The remit of the group was to work collaboratively with partners and service users to produce an informative learning tool to support others in setting up a telephone triage service.

The production of the DVD and accompanying training package brought many positives, from the benefits of partnership working to demonstrate the value of services were clearly evident, to the role of education in sharing ideas and best practice. Most importantly though, the project gave us hope that in developing an educational tool to facilitate the sharing of our innovative service design, we would be playing a part – albeit a small one – in advancing rapid access to palliative care and improving outcomes for patients.
Compassionate communities: from reaching people to working in partnership with communities at EoL
Authors: Murungu Diana , Welch Daphne , Swani Tina
Published: September 2011

Introduction

Birmingham St. Mary's Hospice (BSMH) is working to increase access to excellent EoLC services to patients and their families from minority communities in Birmingham. Through this work we are aware that communities provide support to their members at end of life and during bereavement. Communities appear to take their contribution for granted as their ‘way of life.’

Aims

Increase awareness and use of palliative care services for minority communities. Increase conversations around death, dying and bereavement. Identify and work with compassionate communities to support patients and families in the community through partnership working with clinicians. Create a forum for sharing care ideas between communities and service providers.

Methods

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Qualitative methods: Purposive and snowballing sampling. Education for clinicians at the hospice.

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'Sharing Care' Conference.

Results

Compassionate communities exist in Birmingham who support their own members at end of life. They are willing to work in partnership with clinicians to support patients. A Reference group made up of community members has been set up at the Hospice. Community leaders participate in our training programme for clinicians to raise awareness of how culture and spirituality can impact on access to services.

Discussion points

The extent of commitment to partner communities by service providers is still to be tested. The Hospice is carrying out further work to establish whether this will support more patients to achieve their preferred place of final care.

Evaluation by Worcester University demonstrates communities willingness to engage with service providers and commissioners.
An innovative model for delivering end of life care education
Authors: Lansdell John , Mahoney Mary
Published: September 2011

Introduction

The care of patients at the end of life and their families has had an increasing profile since the publication of the End of Life Care Strategy. A central aspect of the strategy is education to improve the delivery of care at the end of life. Studies have shown that inadequate education and training results in suboptimal care at the end of life. Moreover, there are increasing difficulties in releasing staff to attend educational events. Therefore, we need to provide a more adaptable and responsive approach to the delivery of end of life care education.

The model

The End of Life Care Education and Training Model provides a flexible approach to supporting structured learning with an opportunity for reflective practice, enhancing professional development. Within this model we can tailor individual, departmental or organisational development plans that build competent practice to enhance end of life care. The model uses Bloom's taxonomy – a classification of the different levels of learning, advancing from basic levels of knowledge and application through to higher levels of analysis and evaluation – as the central building block for all professional development. Each aspect of the model provides a variety of options to support learning, for example: study days, seminars and courses considering different elements of a single topic; taking what has been learned and applying it to practical aspects of patient care; enabling staff to develop an outline of a skill set that supports competent practice.

Conclusion

The intention of the model is to provide a framework for all healthcare practitioners working with people at the end of their lives to promote lifelong learning and therefore enhance patient care.