bluuebunny/crossref_metadata_2025_split huggingface dataset:
WHAT DOES PALLIATIVE CARE MEAN TO YOU? AN INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS OF THE UNDERSTANDING, EXPERIENCE AND PERCEPTIONS OF PALLIATIVE CARE IN THE GYNAECOLOGY SETTING
Authors: Stewart Claire , Archer Stephanie , Bali Anish , Hay Daniel 
Published: February 2014

BackgroundSignificant deficiencies in care for patients approaching the end of life have been reported nationwide, particularly for patients managed in the non-specialist settings. Specialist palliative care teams are known to improve patient and family satisfaction but due to limited resources, they cannot care for every patient, and therefore most patients dying in hospitals are under the care of generalist teams, including surgeons and gynaecologists. Gynaecologists may play an important role in 'breaking bad news' and treatment planning for patients with advanced or incurable gynaecological cancer and it is therefore essential that they are competent and confident in the recognition and management of palliative needs.AimsPrevious quantitative research has shown differences in how healthcare professionals understand and perceive palliative care, but they do not help explainwhythese differences exist. This study therefore aims to bridge this gap by using qualitative methods to obtain rich, detailed data on the understanding, experiences and perceptions of palliative care amongst gynaecology healthcare professionals.MethodsIndividual interviews were carried out with 10 healthcare professionals from the gynaecology department of a large tertiary hospital, including consultants, registrars and nursing staff. The data was analysed using Interpretative Phenomenological Analysis to identity relevant themes.Results and ConclusionsThree main themes were identified including Difficult Terminology, Emotional Aspects and “I'm not sure I 'm the right person for the job” These significant human factors must be addressed when planning further education and training in palliative care.
HOW MEDICAL STUDENTS LEARN TO CARE FOR THE DYING: RESULTS FROM A QUESTIONNAIRE STUDY
Authors: Rayment Clare , O'Rourke Rebecca 
Published: February 2014

AimsTo explore the exposure medical students have across clinical placements in learning to care for dying patients, with a particular focus on whether there are perceived differences relating to learning in different settings.MethodsAll 4th and 5th year medical students at one UK medical school were invited to complete a short online questionnaire. Data was analysed with descriptive statistics and thematic analysis.ResultsResponse rate was 4%. 22 students responded, 15 from fourth and 7 from fifth year. 18 perceived they had been involved in the care of a dying patient and 15 had completed a module including palliative care during medical school. Students described many varied experiences across a broad range of specialities of caring for patients dying but many also had prior experience outside their medical training. Students described learning through role modelling from both perceived positive and negative encounters. Students identified similarities in underlying principles across care settings but described differences related to staff attitudes and priorities. The Liverpool Care Pathway was often mentioned as a framework for understanding how to care for the dying. Many students described the considerable impact of being involved, even on the periphery, of caring for a dying patient. Despite 4 students stating they had not been involved in the care of a dying patient, in subsequent questions they described these experiences; they were all final year medical students.ConclusionAcross undergraduate training students have exposure to a broad range of experiences in which care of the dying is demonstrated. However, students may not always recognise when they are witnessing care of the dying. Different settings provide different experiences but consolidate common principles. These experiences have considerable impact and students expressed a need for further support. Our low response rate may affect our findings.
HOW DO SURGEONS AND ANAESTHETISTS MAKE DECISIONS ABOUT SURGERY FOR PATIENTS WHO ARE FRAIL, AND WHAT FACTORS INFLUENCE THESE DECISIONS?
Authors: Kitchen Richard , Patel Rakesh , French Gordon , Faull Christina 
Published: February 2014

BackgroundFrailty is a concept that describes decreased physiological reserve. Evidence shows that frailty is a risk factor for post-operative complications including sepsis and delirium, increased length of stay and the inability to be discharged home after surgery. Frailty is also a risk factor for increased mortality in the setting of cardiac surgery. Little is known about how decisions are made about surgery in frail patients.AimsTo explore how surgeons and anaesthetists make decisions about surgery in patients who are frail.To identify what training surgeons and anaesthetists would find useful in helping them to make decisions about surgery in patients who are frail.Methods of Data CollectionIndividual interviews were conducted with three surgical consultants, three anaesthetic consultants, three surgical trainees and three anaesthetic trainees. A paired interview was also carried out to gauge the thoughts of a surgeon and an anaesthetist together about these issues.Methods of Data AnalysisInterview transcripts were coded and codes collapsed progressively using a constant comparative approach allowing themes to emerge, with subsequent mapping to a decision-making framework.Results Key findings▸Most participants preferred a shared decision making approach.▸Communication challenges and issues around capacity presented problems with decision making.▸There was a lack of understanding of the term ‘advance care planning’.A theoretical decision making model was developed from the interview data and a preceding literature review.ConclusionsSurgeons and anaesthetists accepted that working with frail patients was a common but challenging scenario. Specific education in this area was thought to be lacking. A tailored learning intervention for core surgical and anaesthetic trainees is subsequently being designed.
DEVELOPING SKILLS IN COMMUNICATION IN END OF LIFE CARE: EVALUATION OF A 3 DAY PILOT COURSE FOR CORE MEDICAL TRAINING
Authors: Feathers Luke , DeCaestecker Sharon , Norrie Peter , Fowler John , Faull Christina 
Published: February 2014

BackgroundEffective communication is a core skill for professionals. Skilled communication is also regarded as one of the key domains of leadership that doctors should develop. Postgraduate training in communication skills is not embedded within training programmes other than GPs. This pilot study examines the feasibility and outcomes of communications skills training for doctors in their Core Medical Training.MethodsDoctors completed a pre and post training questionnaire at three months to rank, knowledge and understanding of palliative care issues and their confidence in the ‘talking and supporting’ aspects of end of life care.ResultsDealing with anger & confrontation was the training need identified most. Although some identified the general need to develop skills in ‘breaking bad news’ or ‘discuss sensitive topics’, many cited needs in specific scenarios:“Dealing with patients who don't understand the prognosis/or who don't want to know”“Increase in confidence discussing death with patients”“Discussing sensitive topics like DNR(sic)in terminally ill patients”“How to discuss end of life issues without being bogged down by clichés”There was an increase in confidence and knowledge in all areas evaluated in the questionnaire and 86% evaluated the course as very useful and 14% as useful. Trainees valued the way the simulation exercises broke down difficult aspects of communication and the ability to try diverse communication strategies. Rehearsal of a listening approach rather than a defensive approach with ‘difficult’ patients allowed trainees to feel they had new ideas to utilise within their practice.ConclusionThis blended method course was found to be useful and increased confidence in a range of end of life care communication tasks. It may also have promoted an increase in knowledge in other areas of end of life care.
EMPATHY AGAINST DISGUST: AN INTERPRETIVE PHENOMENOLOGICAL ANALYSIS OF HEALTHCARE PROFESSIONALS' EXPERIENCES OF CARING FOR PALLIATIVE PATIENTS WITH DISGUSTING SYMPTOMS
Authors: Muggleton Joshua , Guy Helen , Howard Ruth 
Published: February 2014

BackgroundDisgusting symptoms are common in healthcare settings. Previous research has identified that healthcare professionals systematically avoid contact with patients with disgusting symptoms (Kray, 2004) potentially compromising patient care. Furthermore, Whitby and Gracias (2013) highlighted disgust in healthcare professionals as a possible contributory factor to dehumanization, and the abuses documented in the recent Francis report (Francis, 2013).Disgust may also have a detrimental effect on the wellbeing of healthcare professionals. Given that showing disgust is thought to be unprofessional (Holmes, Perron and O'Byrne, 2006) healthcare professionals may feel unable to express or process disgust in their work. The suppression of emotions, such as disgust, has been associated with poorer emotional health (Gross and Oliver, 2003). Therefore, healthcare professionals may be at risk of developing long-term emotional difficulties, or burning out.AimGiven the ubiquity of disgust in palliative care (MacLeod, 2011), we investigated how palliative healthcare professionals' experience and cope with disgust in their work, and how they are supported in doing so.MethodsWe interviewed six palliative healthcare professionals and analysed their transcripts using Interpretive Phenomenological Analysis (Smith, 1996)AnalysisFifteen themes were identified and explored. These includedthe importance of being an empathetic professional, thatdisgust damages relationships with patients, and that stafftalk about ‘difficulties’, not disgust.ConclusionsThree key findings emerged. Firstly, participants were uncomfortable talking about disgust at work, and were unable to access support for disgust. Secondly, in focusing on their patient's needs, participants often neglected their own emotional needs. As a result, it appeared that some participants projected their own emotions onto their patients, or else linked their own emotional wellbeing to the wellbeing of their patients. Finally, participants were at risk of reducing vital socio-emotional support for patients with disgusting symptoms. Based on our analysis, we suggest interventions to counteract these effects.
PALLIATIVE CARE RESEARCH ON THE ISLAND OF IRELAND OVER THE LAST DECADE: A SYSTEMATIC REVIEW
Authors: McIlfatrick Sonja , Murphy Tara 
Published: February 2014

BackgroundAs palliative care research continues to expand across Europe, and the world, questions exist about the nature and type of research undertaken in addition to the research priorities for the future. This systematic review examined palliative care research conducted on the island over the last decade.MethodsA comprehensive search strategy was implemented and strict eligibility criteria were applied in order to identify relevant peer-reviewed journal articles. Inclusion criteria were all of the palliative care studies undertaken on the island of Ireland and published between January 2002 and May 2012. These were assessed in relation to year, setting, sample size, research methodology, and relevant findings.Results412 publications were identified for screening and their abstracts obtained. After eliminating articles that did not meet the inclusion criteria, 151 remained for further analysis. A thematic analysis of 128 studies published between 2006 and 2012 revealed eight core themes: (1) specific groups/ populations; (2) services and settings; (3) management of symptoms (physical, psychological, social); (4) bereavement; (5) communication and education; (6) death and dying; (7) spirituality; and (8) complementary and alternative medicine/intervention (CAM). There was an upward trend in the number of publications in palliative care research over the last ten years with over 72% of studies being published within the previous four years. A slightly higher number of studies were quantitative in nature followed by qualitative, mixed methods, and systematic reviews.ConclusionWhilst there has been a welcome growth in palliative care research across Ireland, this has largely been needs-based and small scale studies. In contrast, international researchers and decision makers recommend the need for more outcomes focused multidisciplinary research. An examination of palliative care research is an essential first step in seeking to develop future priority areas for further research, highlighting opportunities for future collaboration both nationally and internationally.
PATIENT AND PUBLIC INVOLVEMENT IN SCOPE DEVELOPMENT FOR A PALLIATIVE CARE HEALTH TECHNOLOGY ASSESSMENT IN EUROPE
Authors: Brereton Louise , Goyder Elizabeth , Ingleton Christine , Gardiner Clare , Chilcott Jim , van der Wilt Gert Jan , Oortwijn Wija , Mozygemba Kati , Lysdahl Kristin B , Sacchini Dario , Lepper Wojciech 
Published: February 2014

BackgroundPatient and Public Involvement (PPI) helps to ensure that study findings are useful to end users but is under-developed in Health Technology Assessment (HTA). "INTEGRATE-HTA, (a co-funded European Union project -grant agreement 30614) is developing new methods to assess complex health technologies and applying these in a palliative care case study. Having experienced the intended and unintended consequences of palliative care services, which vary widely across Europe, patients in six countries (England, Germany, Italy, Netherlands, Norway and Poland) provided valuable insights and advice for scope development.AimsTo establish PPI in a palliative care HTA.MethodsAs PPI to assist early scope development in HTA is novel, each country implemented PPI methods as appropriate locally. One of two advocated methods was used, either a qualitative research approach or seeking the views of patients, relatives, carers or patient representatives as research partners. Using a qualitative approach, 21 individual, face-face patient interviews were conducted and analysed thematically. When patients were research partners, an adapted version of the EUnetHTA core model guided 30 face-face discussions. Thematic analysis and conceptual mapping identified key issues.FindingsPPI in palliative care requires researchers to have cultural awareness of the acceptability of engaging in discussions around dying in each country. Ensuring positive PPI experiences and effective participation by acknowledging patient knowledge and experience whilst establishing a two-way flow of information in the HTA process is essential. Partnership working between researchers and patients, stakeholder evaluation and remuneration when involved as partners is important.ConclusionsPPI was successfully implemented in each country, assisting patient-centred scope development and identification of important issues related to palliative care. Although there is much to be gained from PPI, methods of PPI engagement require further development. All PPI methods have advantages and limitations which must be considered in light of local needs, resources and culture.
ARCHAEOLOGICAL RESEARCH AND CONTEMPORARY ATTITUDES TO DEATH AND DYING
Authors: Croucher Karina 
Published: February 2014

BackgroundThe disciplines of palliative care and archaeology have rarely had the means or incentive to engage. This research introduces a new project which initiates dialogue between the study of the ancient and the contemporary. The project is in its exploratory stages and participation in PCC will inform future research direction. Archaeological evidence provides new information which challenges culturally-constructed notions of acceptable mourning behaviour, providing new insights into grief and mourning, and the anticipation of death and loss. For instance, Neolithic case studies include the phenomena of plastered skulls (the recreation of faces of the deceased onto crania, using clay or plaster), a practice which, rather than being abhorrent or disrespectful, suggests deep-rooted reactions to death, dying, and a need to keep the dead physically and emotionally close.AimsTo bring archaeological case studies into the Palliative Care profession to:▸Provide evidence for the longevity and deep-rooted experiences of grief and loss (including Continuing Bonds)▸Provide a tool for facilitating discussion around death and mortality using a removed yet compelling data set (currently problematic with contemporary attitudes and near-taboo status of death)MethodsThe archaeological analysis is qualitative and has taken a case-study, contextual approach. In addition, data from excavation sites has been analysed to determine age, sex, cause of death, use, display, decoration, damage, repair and location. Presenting archaeological data at PCC is a preliminary stage of the project, inviting responses from PCC delegates which will inform future research direction and collaboration.ResultsArchaeological research demonstrates strong evidence of Continuing Bonds in archaeological contexts, yet this is rarely communicated outside of archaeological discourse. Engagement through PCC will provide further incentive for collaborative research between Humanities and Health Care professionals in exploring the potential role of the past in informing contemporary practice around death, dying and end of life care.
OLDER PEOPLE'S CANCER PAIN EXPERIENCE, PRELIMINARY FINDINGS FROM A QUALITATIVE STUDY
Authors: Dunham Margaret , Collins Karen , Allmark Peter 
Published: February 2014

AimsDespite knowing that cancer and cancer treatment can cause pain there is limited knowledge of how older people experience cancer pain and how this affects their daily lives. Here presented are some methodological insights and early findings from a PhD study that aims to consider how older people construct the experience of cancer pain and how this is informed by expectations and experiences.MethodA qualitative diary-interview study was conducted with purposively selected older people who had been diagnosed with cancer and were in receipt of specialist palliative care. A two week page-a-day diary informed a subsequent interview to ensure holistic and person focused data about experience.FindingsOlder people are willing participants but tend to adopt a stoic role when living with cancer pain. Preliminary results show that older people are reluctant to self identify as living with worsening cancer pain and unwilling to express and discuss their pain as a problem, rather something to adapt and live with. Carers and or health care professionals may reinforce vulnerable and stoic stereotypes through gate keeping with associated stances of protection and advocacy. The participants appeared to be satisfied with the care provision for symptom management. However, the convention of stoic ageing is knowingly maintained with occasional glimpses of vulnerability. This image contrasts with the presented and perceived representation of older people with cancer as vulnerable.ConclusionsRepresentation of the voice of older people through a diary may help the individual to present their experience more effectively to a third party. Awareness of older people's experience of cancer pain, through diary use and shared experiences, may give health care providers a greater understanding of the older persons support needs.
USING QUALITATIVE EVIDENCE TO HELP UNDERSTAND COMPLEX PALLIATIVE CARE INTERVENTIONS: A NOVEL EVIDENCE SYNTHESIS APPROACH
Authors: Candy Bridget , Jones Louise , King Michael , Oliver Sandy 
Published: February 2014

BackgroundMany palliative care interventions that aim to enhance patient or family wellbeing are complex. This is often because the intervention involves multiple elements and it is unclear which of these elements contribute to its success. For example, an intervention that aims to support family caregivers may involve both emotional support and education. Different interventions, while being the same over-arching type of supportive intervention, may differ in what is provided to the caregiver. This makes it difficult in a systematic review to provide conclusions for palliative care practice. Qualitative evidence has potential in intervention design.AimsUsing a case example on promoting adherence to therapy, we present novel approaches that may help enhance understanding of complex interventions.MethodsIn a table we combined (1) qualitative evidence synthesis on patients' suggestion on adherence promotion, with, (2) the content of interventions from multiple trials that aim to promote adherence. This created new data relationships, where the intervention content did and where it did not correspond with the content of effective interventions. We summarised the relationships narratively, statistically and using set-theory. We did this to compare techniques.Main resultsAcross the techniques we found consistent evidence that certain patient suggestions, if taken up in the intervention, may enhance its success. Many of these related to positive activities, such as clear instructions or emphasising the value of treatment. Suggestions absence in effective interventions were those in relation to more challenging aspects to adherence.ConclusionsOur approach of summarising pooled evidence on patients' views and intervention content provided new evidence on how to develop interventions. Our findings are strengthened as similar results, were found using different analytical techniques. Our approach provides a potential opportunity to make greater use of qualitative evidence on patients' and families' perspectives in relation to palliative care. The method may help accelerate better supportive interventions.
A QUALITATIVE STUDY EXPLORING THE VIEWS OF INTENSIVE CARE UNIT STAFF ON THE USE OF A SUPPORTIVE CARE PATHWAY TO GUIDE THE CARE OF PATIENTS WHO MAY NOT SURVIVE THEIR ICU ADMISSION
Authors: Radcliffe Christina 
Published: February 2014

BackgroundThe need to provide quality palliative care within the intensive care unit (ICU) is increasingly recognised. Mortality and morbidity are high, and studies have noted benefits to providing palliative care support within ICU; however, there remain barriers to achieving quality end of life care.AimsWithin a large tertiary referral centre ICU, a Supportive Care Pathway (SCP) was introduced with the aim of providing holistic care to patients and families where it was recognised that the patient may not survive their admission. This study aimed to explore the perceptions of intensive care doctors and nurses regarding the advantages and disadvantages of the SCP.MethodsThis was a qualitative study. Sampling was purposive. Semi structured interviews were conducted by the primary researcher and transcribed verbatim. Interviews continued until data saturation was reached. Analysis was by grounded theory.Results10 face to face interviews were conducted, with 5 doctors and 5 nurses working on ICU. The study found that the SCP aided in reaching a consensus between team members caring for an individual patient. It was felt to empower staff to question the trajectory of care, and it was useful in helping to manage the expectations of family members, and at times, of colleagues, about ICU care. Participants found that dealing with uncertainty was a difficult part of managing care on ICU, and there were concerns voiced that it was difficult to identify the correct patients to put on the SCP, and that the SCP could become a self fulfilling prophecy. There were also concerns about the SCP becoming a euphemism for dying.ConclusionsParticipants were generally positive about the SCP and felt that it provided a useful mechanism for communication of the goals of care. There may be a role for similar care pathways more widely within intensive care units.