bluuebunny/crossref_metadata_2025_split huggingface dataset:
‘BEING A CONDUIT’: EXPERIENCES OF BEREAVED CARERS AND HEALTH CARE PROFESSIONALS ABOUT USING HOSPITAL BASED MACMILLAN DISCHARGE FACILITATOR SERVICE
Authors: Venkatasalu Munikumar Ramasamy , Clarke Amanda , Atkinson Joanne 
Published: February 2014

BackgroundThe drive in policy and practice is to enable individuals to achieve their preferred place of care during their last days of life. A local NHS Trust implemented a pilot project to establish a Macmillan Discharge Facilitator Service that aimed to offer individuals at the end of their lives the choice to die at home or another preferred place of care. Although the routine clinical audit provided quantitative data regarding the use of the service and associated outcomes, little is known about the service in terms of its quality, scope and impact on service users and other stakeholders.AimsA qualitative evaluation was undertaken to explore stakeholders' views and perceptions concerning the Macmillan Discharge Facilitator Service.MethodsAfter gaining ethical approval, semi-structured interviews were conducted with bereaved carers (n=5). A focus group and individual interviews were undertaken with Healthcare Professionals who had used the service since its inception (n= 5). We also conducted individual interviews with the Discharge Facilitator and Service Manager.ResultsFramework analysis revealed five key themes: achieving preferred place of care; the Discharge Facilitator Service as the “conduit” between hospital and community settings; the personal attributes of the Discharge Facilitator; delays in hospital discharge; and, stakeholders' perceptions of the way forward for the service. Bereaved carers reported that the Discharge Facilitator helped to facilitate choice through the exploration of the patient's wishes, advocacy and the coordination of seamless discharge across care delivery settings.ConclusionsStakeholders reported that the Discharge Facilitator acted as a reliable resource and support in order to facilitate fast tracking for patients at the end of life. Recommendations for future service development were suggested by all stakeholders; these included: increased profile of the service, expansion of service provision, further development of education opportunities, and the Discharge Facilitator's earlier involvement in the discharge process.
KNOWLEDGE AND EXPERIENCE WITH HOSPICE AND PALLIATIVE CARE IN SLOVENIA AMONG HEALTHY ADULTS
Authors: Bobnar Albina 
Published: February 2014

BackgroundIn Slovenia we started with the process of working and informing the public about palliative care as an integral part of the health care system after 2003, in preparation for entry into the European Union. The National Palliative Care Program was published in 2010. For the patients and relatives had organized palliative care in the same year in two hospitals and hospice care in one Hospice house. Due to the lack of palliative services, very few people involved in hospice or palliative care.AimThe aim of this study was to identify differences between healthy adults' knowledge of and experience with hospice and palliative care.MethodsIn the academic year 2010/2011, students of nursing to do interviews with 695 healthy adults. Bivariate analysis were made to determine statistically significant differences among healthy adults about the knowledge and experience with hospice and palliative care regarding of gender, age, place of residence, employment status, education, marital status.ResultsAmong the 59,4% women and 40,6% of men aged 18–59 years (56,3%) and 43,7% of those aged >60 years, living in the city (49,9%) and villages (51,1%), the women in the younger age group who live in the city, better known hospice and palliative care. Greater knowledge among employees (47,6%) and participants with education >13 years (21%). Marital status does not affect their knowledge of hospice and palliative care, as well as no differences in experience with this type of care among healthy adults.ConclusionThe healthy adults know little about hospice and palliative care, much less they have experience in this field. Might on this affect the satisfactory implementation of health services to all parts of Slovenia and the healthy adults are not interested in the other alternative forms of care at the end of life.
CLARITY THROUGH THE KALEIDOSCOPE: GAINING CONSENSUS ON THE MAIN CAUSES OF CARER BURDEN FROM PROFESSIONAL AND CARER PERSPECTIVES
Authors: Knighting Katherine , Jack Barbara , Roe Brenda , O'Brien Mary , Nolan Mike , Lloyd-Williams Mari , Pine Kirsty , Gandy Rob 
Published: February 2014

BackgroundFamily caregivers of patients with cancer and other advanced progressive illnesses, especially during the final year of life, can incur increasing burden, affecting their health, ability to care and likelihood of hospital admission for the patient. It is essential carers' needs are assessed to alert health and social care professionals to their increasing level of burden and trigger additional support. This multi-phase study developed and piloted a Carers' Alert Thermometer (CAT), for use by the generalist healthcare workforce, to alert staff to increasing carer burden and provide guidance on appropriate interventions.Aim of the studyTo gain consensus on the most important burdens raised by carers for inclusion in the CAT (Phase 1) subsequently rated and ranked by professionals and carers (Phases 2 and 3).MethodsPhase 2: A two-round Delphi survey was conducted with carers, health and social care professionals and organisations supporting carers. Round 1 involved 44 burdens in eight main themes. Round 2 contained 29 burdens which had been rated as‘extremely important’or where a high level of disagreement between carers and professionals existed.Phase 3: A virtual panel, comprised of carers together with professionals from national and regional organisations with strategic roles in end-of-life care and carer support, commented on the Delphi findings ranking their top 10 burdens for inclusion in the CAT.ResultsThere was a high level of agreement between the professionals and carers on the main burdens for inclusion in the CAT. Understanding the current caring situation and supporting carer's health and well-being were the main priorities. Interestingly, end-of-life planning was ranked lowest by both groups.ConclusionsDespite the complex needs of carers clear consensus on the main burdens exists which can be utilised in an alert tool to identify increasing burden and guide appropriate targeting of support and resources.
TICKING THE BOXES FOR CULTURAL CARE AT END-OF-LIFE
Authors: Batten Lesley , Holdaway Maureen , Clark Jean , Allan Simon , Randall Clare , Marshall Bridget 
Published: February 2014

BackgroundClinical pathways including the Liverpool Care Pathway for the Dying Patient (LCP) construct the documentation of care in ways that can have benefits and consequences. In New Zealand unique cultural goals related to the care of patients and their families were added to the LCP, and research into their use is underway.AimsAs part of an investigation into the utility, comprehensiveness and cultural appropriateness of the cultural goals, the aim was to examine the content of cultural care documentation to ascertain documentation practices.MethodsA retrospective chart audit of 100 LCP documents, with 25 each from home care, aged residential care, hospital and hospice, and semi-structured interviews with stakeholders including clinical staff and managers.ResultsA number of patterns emerged including: very high rates (99% of 1360 entries) of the goals being recorded as ‘achieved’, even when one of the goals related to family needs and the family was not present; minimal documentation of cultural needs; and minimal variance documentation. In addition a further pattern related the use of the yes or no format in version 11 (rather than achieved or variance in version 12). A variance was documented only 1% of the time, however when the yes or no format was used, goals were documented as not met 20% of the time.ConclusionsTicking the box, or in this case, documenting an ‘A’ for achieved provides little information or evidence that the cultural goals have been addressed in an appropriate and comprehensive manner. In addition, the variance-reporting format appears to be misunderstood when documenting the care of patients who are unconscious, or families who are not present. The constraints placed on writing a holistic patient story potentially impede the meeting of cultural needs based on beliefs and values.
DEVELOPMENT OF A HOSPICE RESEARCH STRATEGY THROUGH ORGANISATIONAL CONSENSUS
Authors: Reed Liz , Todd Jennifer 
Published: February 2014

BackgroundA strategic approach to the development of a portfolio of research gives direction and enables an organisation to plan, fund and conduct research systematically. At Princess Alice Hospice, a strategic approach to research development across the organisation was tailored from the 5 year strategy, as a focus to improve the quality of the palliative and end of life care provided locally, as well as contributing to the wider evidence base.AimsIdentify gaps in palliative and end of life care evidence Develop an research strategy in line with organisational strategy.MethodsA gap analysis of evidence in palliative and end of life care was undertaken though a review of relevant literature, focussing on the key areas previously identified through the organisational strategy. The analysis was then circulated to managers from different disciplines, both clinical and non-clinical, along with an open invitation to attend a research workshop. The workshop was used to facilitate consensus decision making in order to prioritise the focus of research over the next 2–3 years. The outcome of the workshop and key areas identified for research were then conveyed to the user group.ResultsThe workshop was attended by 17 staff members with good multiprofessional representation. Priorities identified in order were: partners and families; non-malignant disease and health promotion. Workshop discussion highlighted compassion and dignity as additional research areas, both topical and relevant across the organisation, and they were subsequently added to the priorities.ConclusionsUndertaking a gap analysis, with an overview of current evidence in palliative and end of life care research, alongside the 5 year strategy, provided focus for our organisational research priorities. A multiprofessional consensus approach allowed diversity and representation which translates into a richer decision making process as well as interest and engagement throughout disciplines in future research activity at the Hospice.
MUSIC AS A HEALTH PROMOTION AGENT IN PALLIATIVE CARE: THE ST CHRISTOPHER'S COMMUNITY CHOIR
Authors: Tsiris Giorgos , Dives Tamsin , San Mick 
Published: February 2014

Traditionally, health promotion has focused on illness prevention, and is addressed to people who are ‘fit’ and ‘well’. In recent years however, there has been an increased interest in health promotion's relevance within the palliative care field. Although death cannot be prevented, health promotion initiatives can provide education and social support regarding death and dying, and help change death-denying health policies and attitudes. These initiatives gradually become a key aspect of hospices' work, and a new emerging area for music and other arts practitioners.Drawing from the example of St Christopher's Community Choir (and its Band), this presentation focuses on music's role as a health promotion agent in palliative and bereavement care. Run by two music therapists, the choir was founded in 2011 as part of St Christopher's wider death education and social initiatives; today it has more than 80 members including people from the local community, patients, families, bereaved people, staff and volunteers. Through brief case studies, different people's pathways and social stories within and beyond the choir are explored. This presentation shows how music's power to build community can become a key element within health promotion initiatives in palliative and bereavement care, while new potential prospects for music therapists working in the field are outlined.
UNDERTAKING A BEREAVED FAMILY SURVEY IN A LARGE TEACHING HOSPITAL
Authors: Iwaniszak Claire , Kite Suzanne , Rees Elizabeth , Henry Karen , Gibson Kathryn , Hicks Fiona , Stothard Christopher 
Published: February 2014

AimTo give relatives the opportunity to provide feedback on their experience of their relatives care received in the last days/hours of their lives in an acute hospital.BackgroundResults from the National Views of Informal Carers Evaluation of Services (VOICES) survey (DH, 2012) was informative at PCT level but did not provide feedback on individual organisation. Leeds Teaching Hospitals Trust (LTHT) adapted a bereaved family survey (Worcestershire Acute Hospital NHS Trust, 2012) for feedback on the quality of end of life care and communication.Method627 surveys given out over 10 weeks (March to May 2013) to the bereaved relative/carer via the bereavement liaison office.ResultsResponse rate 23% (146/627). Majority of responses from bereaved daughters (40%) of older adults. Results indicated that ward staff are delivering excellent or good care for the followings aspects; communication (Excellent 45%, Good 28%); respect and dignity (Excellent 55%, Good 26%) and emotional support (Excellent 46%, Good 30%). An adapted version of Burnard (1991) content analysis was used to establish themes from the comments. Emerging themes highlighted issues with hospital/ward facilities for relatives and lack of understanding regarding caring for patients with dementia. Overall the comments were mainly positive (70% positive versus 30% negative) regarding care their relatives received.ConclusionThis Bereaved Family Survey has provided valuable insight into where the care we provide is of high quality, and where we need to improve. Work is required to: understand how we can involve patients more in decision-making; improve facilities for families, and establish links with other work in development, such as improving care for patients with dementia. Timing of the survey needs to be reconsidered to gain a more representative population of bereaved relatives.
WHEN SHOULD WE TELL THE CHILDREN?
Authors: Foulkes Margaret , Hampton-Matthews Julian , Coackley Alison 
Published: February 2014

BackgroundIn recent years, there has been growing recognition that the needs of dependent children should be considered when dealing with a parent with a life-threatening illness, Much patient distress can be associated with worries about the children and also, many children welcome the opportunity to talk with parents or professionals about the illness, treatments, survival and coping strategies. Many Hospices/Palliative Care Units in the UK provide support for dependent children, however, there is very little face-to-face support at diagnosis or subsequent care, in the acute setting.AimTo provide an individualised service for families and children, depending on age, stage of development, family values, patterns and culture, from diagnosis to bereavement.MethodDuring the past five years, this tertiary Cancer Centre has provided a family service for patients with children. There is a weekly specialist service where patients can discuss the needs of their children or can access individual support for the children themselves. Parents are helped to discuss issues with their children and provided with resources such as leaflets, books, internet sites, discussion of memory boxes and DVDs. Some children may prefer to talk to a professional on their own or with a family member/friend. They are encouraged to ask questions about what is happening, look at options for support and have a point of contact if they wish to return at any future date.ResultsPatients and their families have benefitted from support in all stages of their cancer journey. Education and advice has been available for generalist staff and support has been augmented by the Specialist Palliative Care Team. A wide range of resources for children and their relatives are available in the Unit.
THE CHALLENGES OF PROVIDING A CARERS' ASSESSMENT FOR PALLIATIVE CARE PATIENTS IN A TERTIARY CANCER CENTRE
Authors: Hampton - Matthews Julian , Coackley Alison , Noble Agnes , Griffiths Ann , Foulkes Margaret , Howarth Susan 
Published: February 2014

BackgroundThe author works in a tertiary centre in the UK, caring for over 7,000 new patients per year. Carers play a central role in providing support to patients. However, many carers do not experience a cohesive integrated system of social support. Optimal input for carers will depend on a comprehensive assessment of the situation and their needs.AimTo develop an assessment tool that can be used by all health care professionals to assess the carers' needs and provide appropriate intervention to support the carers.MethodA multi-professional group was set up to establish the baseline needs of carers. The assessment and documentation of carers' concerns and needs was evaluated using the documentation recorded on the Trust's electronic system. The Cancer Centre joined a major research project untaken by a local university and another NHS Trust to develop an assessment tool for carers who care for palliative patients. Staff took part in an on-line questionnaire to prioritise the issues they feel result in an increase in carer stress which could affect their ability to provide care.ResultsThe research showed that carers' concerns and needs were not being formally assessed. From the information collated a draft Carers' Needs Assessment Thermometer was produced and piloted to carers. The evaluation from carers and health care professionals who have used this tool will help finalise the tool which can be used for carers.RecommendationsCarers' Needs Assessment Thermometer will be used at the Cancer Centre to assess the needs of carers supporting palliative care patients. The tool will be used in conjunction with a carers' directory which was also developed at the Cancer Centre, which gives information on advocacy support, carers' allowance, national support organisations and supported is available in the carer's area.
AND WHAT IF THERE IS NO ADVANCE CARE PLANNING? A REVIEW OF THE LITERATURE IN SHARED DECISION MAKING WITH FAMILY AS PROXY IN DYING HOSPITAL PATIENTS
Authors: Khodabukus Andrew F , Mason Stephen , Ellershaw John 
Published: February 2014

BackgroundAdvance care planning (ACP) is an example of Shared Decision Making (SDM). Of particular concern in palliative care is the significance of both family and non-family relationships and the patient's social environment. Together, these influence the patients decisions and can significantly impact the direction of care. Proxies can be all that healthcare professionals (HCP) have to guide them in a patient with insufficient capacity or where (ACP) discussions have not happened. The place of SDM outside of the classical HCP-individual patient consultation is being increasingly explored to address these additional factors behind decision-making.AimsTo appraise and evaluate the literature on SDM with family as proxy in dying adult patients.MethodsA literature search was done using MEDLINE, EMBASE, CINAHL and SDM internet resources up to 7th December 2012. Studies were identified using inclusion & exclusion criteria and study quality appraised using Popay et al's “Rationale and Standards for the Systematic Review of Qualitative Literature in Health Care”. Summary themes were then identified using content analysis.ResultsFifteen research studies fulfilled inclusion criteria. Nine predominantly researched family experience and six the HCPs experience. There was a paucity of studies from the UK and non-intensive care wards and no studies met Popay's standards. Themes that arose from these studies included the disagreement on what constituted SDM in this context, difficulty of conversations about dying and family and HCP reported burden on families who had been involved in decisions.ConclusionsThe findings are similar to studies examining difficulties in communication about a dying patient. There is no consensus on what decisions can be shared by families and this will differ between different healthcare settings, cultural and legal systems. Therefore there is insufficient evidence in the literature to show how we can incorporate SDM with family as proxy in dying patients into clinical practice.
WHO RESPONDS TO A BEREAVED FAMILY SURVEY ABOUT ACUTE HOSPITAL CARE AT THE END OF LIFE?
Authors: Iwaniszak Claire , Kite Suzanne , Rees Elizabeth , Henry Karen , Hicks Fiona , Gibson Kathryn , Stothard Christopher 
Published: February 2014

AimTo explore who responded to the Leeds Teaching Hospitals Trust (LTHT) bereaved family survey.BackgroundThe LTHT Specialist Palliative Care Team (SPCT) locally adapted a bereavement survey for families (Worcestershire Acute Hospital NHS Trust, 2012). This was developed to give bereaved relatives the opportunity to provide feedback on their experience of the care their relative received at the end of life in the acute setting. The LTHT SPCT Bereaved Carers Service User (BCSU) group contributed to the design of the survey at the outset.MethodOver a 10 week period, March to May 2013, the survey was given to bereaved relatives of adult patients when they collected medical cause of death certificates from the bereavement office. Patients who died in A&E were excluded.ResultsThere were 146 respondents (response rate 23%).Trends identified from the demographics were that respondents tended to be from children of the deceased (son 23%, daughter 40%) and most responses came from older peoples' services (27%). The most prevalent age of death was 86–90. There was a low response rate from oncology wards (1%). Results were presented to the BCSU group.ConclusionThe highest response was from daughters of older adults. Further exploration is needed into the low response rate from oncology, and spouses of the deceased. The timing of the survey may have influenced the group of respondents. It may have been too early on in their bereavement. Delaying the time that the survey is sent to bereaved relatives/carers may help increase the response rate. Opinions from the BCSU group and experience from other hospital trusts will be considered to inform changes to the next survey to gain feedback from a more representative population and improve the care patients receive at the end of life.