bluuebunny/crossref_metadata_2025_split huggingface dataset:
Inner peace in palliative care patients: a qualitative study using grounded theory
Authors: Tan Seng Beng , Ng Chong Guan , Subramaniam Pathmawathi , Lim Ee Jane , Loh Ee Chin 
Published: March 2012

BackgroundInner peace is a state of mind that is free from suffering. Despite facing life-limiting diseases, it is still possible for patients to experience moments of inner peace in the midst of their pain and illnesses. The authors conduct this study to find out these moments of inner peace and the various paths eading to inner peace in palliative care patients.PurposeThe purpose of this study is to (1) understand the types of inner peace in palliative care patients, to (2) understand the paths leading to inner peace in palliative care patients and to (3) construct a theory of inner peace in palliative care patients.MethodGrounded theory is used in gathering, synthesising, analysing and conceptualising the data to achieve the above purpose.ResultsRegarding the types of inner peace, the study reveals four categories: (1) physical peace, (2) psychological peace, (3) social peace and (4) spiritual peace. Regarding the paths leading to inner peace, six categories are revealed: (1) self awareness, (2) positive thought, (3) positive emotion, (4) positive behaviour, (5) positive attitude and (6) self regulation.ConclusionThe former categorisation of the types of inner peace enables us to understand inner peace in a systematic manner. It helps clinician in recognising the types of inner peace in patients. The latter categorisation gives us a deeper understanding of the various paths leading to inner peace. It provides a guide in developing various mechanism-based approaches that help patients to achieve inner peace. From these two findings, the authors construct a model of inner peace that can be generalised to all patients in the field of medicine. This model of inner peace can help clinician to facilitate patients in achieving inner peace in spite of their illnesses.
Exploring the carers experience of the symptoms of prion disease
Authors: Ford Liz , Gorham Michele , O'Donnell Veronica , Knox Jane 
Published: March 2012

BackgroundPrion diseases, also known as transmissible spongiform encephalopathies (TSE's) are a group of progressive neurodegenerative conditions for which there is no current treatment or cure. Human prion diseases include sporadic CJD, variant CJD and inherited prion disease. The National Prion Clinic (NPC) is the national referral centre for prion disease. The NPC provides diagnosis and care for all forms of prion disease and also plays a key role in facilitating research to promote early diagnosis and the development of potential therapies. Currently the NPC run the National Prion Monitoring Cohort, an observational study which aims to build up a detailed understanding of the complex symptoms of prion disease and establish which tests most accurately measure disease progression. A symptomatic measurement tool has been developed to assist with monitoring patients' condition.Aim1) Establish the face validity of the symptomatic measurement tool. 2) Explore carer experience of caring for someone with prion disease.MethodTwenty family members of people with prion disease who had the role of main carer for the duration of their illness were selected. The sample included carers of deceased patients and those currently caring. Each carer was interviewed for up to 2 h. Interviews were recorded. Carers were asked to describe each symptom as it presented from the onset of illness to the present day. Carers were encouraged to describe the impact each symptom had on their relationship with the patient and wider family relationships.ResultsThe project is on-going. Early interviews suggest that symptoms such as personality and behaviour change, and mood disturbance are difficult to capture and score quantitatively, yet these are the problems which affect carers, and in turn patients the most. These symptoms are most likely to lead to carer burn out and breakdown of care package and therefore require careful monitoring.
Identifying the priority support needs of older care givers of people with advanced cancer
Authors: Kennedy Sheila , Seymour Jane , Bird Lydia , Cox Karen , Clarke Amanda 
Published: March 2012

BackgroundIncreasing numbers of people first facing a cancer diagnosis, and many cancer survivors, are older people with significant co-morbidity. Support for these people is provided mainly by family and friends, most often by spouses, themselves often older people with health problems. Although many people prefer to be looked after and die at home this is achieved only by a minority, with carer breakdown recognised as the primary reason for crisis admissions of the dying to hospital. Understanding the support needs of older carers may help end-of-life-care and dying at home become feasible for more of those who want it.AimsTo explore end-of-life-care giving and support experiences of older people looking after someone with advanced cancer. To identify older carers priority support needs.MethodsA UK community study involving focus groups and interviews with older carers with experience of providing end of life care to someone with cancer. Participants reported their experiences of care giving and carer support. Using a modified ‘nominal group technique’, group participants recorded the most important support they received and the main problems encountered. Priorities for support of older carers generally were reached by consensus. Qualitative and descriptive quantitative data analysis was undertaken.Results35 older carers (56–82 years) were recruited. Five were interviewed, 30 attended a group. Findings illustrate the profound and enduring impact of care giving and show that some difficulties are accentuated in old age. While a few participants described positive end-of-life-caring experiences, most found them difficult. The participants' prioritised support needs and factors contributing to the diversity of experiences are presented, including those relating to the care dyad and those external to it, for example the accessibility and co-ordination of support.ConclusionsWhile our findings are reflected in research about carers of all ages, particular problems and support needs are accentuated in old age.
Who cares? A prospective study to develop an alert system for informal carers
Authors: Knighting Katherine , Jack Barbara , Roe Brenda , O'Brien Mary , Nolan Mike , Lloyd-Williams Mari 
Published: March 2012

BackgroundInformal family carers have vital roles caring for patients with cancer and advanced progressive illness, especially during the final year of life, which can incur an increasing burden compromising their physical and psychological health. Understanding how to prevent these stresses is vital to meeting the increasing demands for home-based care and to prevent inappropriate hospital admission of patients. Carers require regular assessment to alert health and social care professionals to their increasing level of burden and to trigger additional support.AimThe project has four phases which will culminate in the development and evaluation of an assessment thermometer to assess carers' needs. The thermometer will act as an alert indicator to the increasing burden experienced by carers in order to trigger referral of carers to appropriate support or services.MethodThe first phase of the project is an interview and focus group study with carers in Northwest England. Interviews will be conducted with carers who are currently supporting patients registered on the Gold Standard Framework or palliative care registers held by general practices in order to gather prospective data about carers' experiences and needs. These interviews will be conducted longitudinally where possible in order to capture the changing needs of the carers during the last 12 months of the patient's life. The focus groups will involve current and bereaved carers to capture a broader perspective on the issues faced.Results and conclusionsThe main themes identified from the interview and focus group study with carers will be presented, along with a discussion of the future development of the assessment thermometer.
Prepared to care: managing home based care and the information needs of carers at end of life
Authors: Harrop Emily , Nelson Annmarie , Byrne Anthony 
Published: March 2012

BackgroundThe physical care needs of patients approaching the end of life are considerable and require specialist knowledge and skills among those who care for them. However, while health professionals receive extensive training and guidance on how to manage such needs when hospice patients are discharged back home families often express concern as they themselves receive no formal training or guidance on practicalities of physical care and instead adopt a ‘trial and error approach’ to palliative care. Such experiences create barriers in terms of the families' self-perception of the care they can provide, and can precipitate re-admission to hospital. This is not only problematic for the patient but also impacts upon carer wellbeing. A variety of psychological and physical health problems have been identified for carers, some of which are associated with carers' perception of competence and the quality of care that they provide.AimsTo explore carers perceptions of their experiences of caring and to identify unmet needs to inform a subsequent intervention.MethodsWe carried out four focus groups in September 2011, two focus groups with nurses at a local hospice and two focus groups with carers/former carers of patients at the hospice. The group discussions explored experiences of, and views on, the challenges of providing care in the home setting, the information and training needs of carers and the feasibility and practicalities of possible interventions.ResultsThis paper will report the main themes to emerge from the data, following a thematic analysis of the focus group transcripts.
The location of community palliative care nurse specialist patient assessments: patient perceptions
Authors: Carby Jo 
Published: March 2012

BackgroundIt is current practice for the Community Palliative Care Nurse Specialist (CPCNS) service at Wigan & Leigh Hospice (WLH) to provide all assessments in patients' own homes. While the value that patients place upon CPCNS services has been extensively explored in the literature, their views regarding the location of assessments have not been considered.AimsTo explore the value that patients who are functionally able to attend clinics, place on the location of their CPCNS assessments.MethodsSemistructured interviews of CPCNS service users assessed as functionally able to attend a clinic. The interviews were transcribed and thematically analysed. Ethical approval was obtained through The Department of Health Research Ethics Committee at Lancaster University and the research panel at WLH.ResultsHome-based assessments add a distinct quality to the CPCNS assessment, positively facilitating communication, empowerment, information and advice provision as well as responsiveness and flexibility. Concerns regarding clinic environments included confidentiality, unpleasant waiting room environments, long waiting times, inflexibility and the burden of travelling. Clinics enveloping principles of ‘at-homeness’, such as friendly staff and pleasant waiting areas were perceived as more helpful than those described as more clinical.ConclusionsThe cost-effectiveness of CPCNS clinics for current service users is questionable due to their perceived burden of travel and fluctuating clinical conditions, which may impact upon higher levels of appointment non-attendance. CPCNS clinics may offer an opportunity for the wider access of people for short term, multidisciplinary interventions earlier in their disease trajectory. Such clinics should envelop the principles of ‘at-homeness’, responsiveness and flexibility, that are so valued by service users. Further research is required into how CPCNS, Palliative Medicine and the wider multidisciplinary team can better integrate to continue in the quest for high quality, needs appropriate, timely and cost-effective palliative care for all who require it.
Achieving preferred place of care and death: Results from a post bereavement survey
Authors: Hunt Katherine , Shlomo Natalie , Addington-Hall Julia 
Published: March 2012

BackgroundA key aim of the End of Life Care Strategy is to enable more people to die in their preferred place; this is often their own home. However, hospital remains the most common place of death, particularly for people dying from causes other than cancer.AimsTo explore end of life care preferences and determine predictors of achieving preferred place of death, home death and hospital death.MethodsThe Office for National Statistics drew a proportionally allocated stratified sample of deaths registered in two PCTs between October 2009 and April 2010. Coroner-registered deaths and deaths under the age of 18 years were excluded. The VOICES questionnaire was sent to each informant (n=1422, usually bereaved relative) 6–12 months after the death. As planned, data were weighted to account for response bias.Results473 returned questionnaires (33%). 35% of respondents reported that the deceased had said where they wanted to die (mainly home 68%). This was apparently recorded for 36% of those expressing a preference. Only 1% was reported to have changed their mind about where they wanted to die. Cancer patients were significantly more likely to die at home than those who died from any other condition (p<0.001) and significantly more likely to have a record of preferences (OR=5.86). Having a record of preferences was significantly associated with both achieving preference (OR=21.0) and home death (OR=15.9) when adjusting for age, sex, deprivation, knowledge of imminent death, relationship of informant, cause of death and number of home services used. Conversely, a reduction in the odds of having recorded preferences was associated with hospital death (OR=0.20).ConclusionsAlthough, out of all causes, cancer deaths were most likely to occur at home, having a record of preferences was the only independent predictor of achieving preferred place of death.
How do doctors decide whether it is appropriate to treat people with VTE and advanced cancer?
Authors: Sheard Laura , Dowding Dawn , Johnson Miriam , Prout Hayley , Noble Simon , Maraveyas Anthony 
Published: March 2012

BackgroundStudies have shown that long-term LMWH (low molecular weight heparin) is superior to warfarin for ambulant, good performance status cancer patients with venous thromboembolism (VTE) and is standard care. Patients with poor performance status are largely excluded from these studies. We explored the barriers for doctors in their investigation and treatment of advanced cancer patients with VTE.MethodQualitative in depth interview study conducted with 45 participants (oncologists, palliative medicine doctors and GPs) working across a range of grades in Yorkshire, England and South Wales.ResultsA strong theme emerged from the data about whether doctors considered it ethically appropriate to investigate and/or treat a patient with advanced cancer for VTE. The expected prognosis of the patient was a pivotal factor in decision making. Doctors were more willing to investigate and treat if the patient had a better prognosis. There was considerable debate whether LMWH should be used in patients likely to die within days/weeks and whether these patients should be moved for investigation, with concerns about inflexible ambulance transport and worries that hospital was not able to manage such unwell patients. Uncertainty existed about when LMWH injections should cease with some feeling a sense of over-caution in their own and others' treatment of patients as a result. Participants diverged on whether dying of a PE was ‘a good way to go’ with a minority viewing LMWH treatment as ‘overmedicalisation’. The lack of evidence base in this patient group was observed. Illustrative quotations will be employed.ConclusionThe personal ethical framework of doctors plays a large role in medical decisions. Acknowledging this via empirical research informs a scant evidence base about how decisions are made for VTE management.
Understanding integrated care pathways in palliative care – context, approaches, outcomes
Authors: Dalkin Sonia , Jones Diana , Lhussier Monique , Cunningham William 
Published: March 2012

BackgroundPolicy and evidence based guidelines have aided in identifying a greater need for advanced palliative care services. However, there is still evidence of individuals dying undignified deaths with little pain control, therefore inflicting unnecessary suffering. In West Northumberland use of new commissioning powers have enabled an innovative Integrated Care Pathway (IPC) to be created in order to improve arrangements for individuals with life limiting illnesses who require palliative care. The ICP itself is novel as it aims to begin palliative care in the last 6 months of life, therefore intervening early to ensure a good death. What is not known is if this ICP works, how it works and who it works for.DesignA realistic evaluation will identify context, mechanism and outcome (CMO) configurations within the ICP and facilitate exploration of how the ICP works and who it works for. Mixed methods and small sample sizes will be used in each section of research to capture the breadth of the ICP. Phase 1 will identify if the ICP works through analysis of NHS MIQUEST data, the Death Audit and the Quality of Death and Dying Questionnaire. Phase 2 employs soft systems methodology with data from focus groups with health professionals to identify how the ICP works. Phase 3 involves use of the Miller Behavioural Style Scale for analysis on communication in palliative care, and interviews with palliative care patients and bereaved relatives.DiscussionThis study will benefit West Northumberland by providing objective data on the palliative care ICP which will aid in developing and improving the ICP via feedback as the research occurs. The research will benefit any national implementation as it will highlight the contexts crucial for successful implementation, the mechanisms that facilitate implementation and the outcomes that can potentially be achieved by this novel approach.
Culture understanding of the discrepancy in end-of-life care implementation in China
Authors: Gu Xiaoli , Cheng Wenwu 
Published: March 2012

BackgroundConsidering the particularity of Chinese culture, with a long history of traditional ethics rooted in Confucianism, significant differences between Chinese and Western cultures exist in clinical practice. Following the western recommendations is a tough process for palliative care implementation in China. Therefore, it is essential to present some important experience for implementing the palliative care for Chinese terminally ill cancer patients from the aspect of culture understanding.Method648 patients received palliative care in our department between 2007–2011 (342 patients died in the ward). The authors summarised the understanding of Chinese culture difference as physician servicing in palliative care Department in Shanghai Cancer Centre Fudan University since March, 2007.ResultsThe authors rooted the Chinese cultural differences from four aspects: the truth telling, the decision-making, issues about the survival length, the acceptance of death of cancer. Concealing the serious diagnoses from patients in China is common. The decision-making occurred always together with the patients' family. For serious diagnoses or fatal prognoses, physicians usually first inform a close member of the patient's family. It then becomes the family's decision whether to tell the patients the truth. So this is actually a barrier to conduct the research to understand the perception about death among Chinese terminally ill cancer patients themselves. As for acceptance of death, nearly 43% patients' caregivers asked for not resuscitate medication and asked for stopping the hydration, 26.90% died patients' relatives asked for sedation to relieve the suffering on their own initiative.ConclusionThe discrepancy do existed in the implementation of palliative care between China and Western countries. The rooted cultural reasons maybe: the value and appreciation of filial duty connotation, obscurity, responsibility and the deep-rooted traditional Chinese death attitudes.
Feasibility study of the sheffield profile for assessment and referral for care
Authors: Ahmed Nisar , Hughes Philippa , Winslow Michelle , Bath Peter , Collins Karen , Noble Bill 
Published: March 2012

BackgroundSheffield profile for assessment and referral for care (SPARC) is a multidimensional holistic screening tool which provides a profile of needs (ie, physical, psychological, social, spiritual) to identify patients who may benefit from additional supportive or palliative care, regardless of diagnosis or stage of disease.Aim(s)A feasibility study (randomised controlled trial) is being undertaken to establish whether using SPARC improves care (impact on quality of life, interventions, consultations and referrals within supportive and palliative care), and to compare experience between patient groups.Method(s)The study is carried out within inpatients, out-patients, day care and in community settings, and is developed, piloted, evaluated, reported and implemented in accordance with the Medical Research Council framework for developing and evaluating complex interventions. Patients are randomised to receive SPARC at baseline or after a period of 2 weeks (waiting list control). Care continues as normal; SPARC responses are communicated to the care team to ensure identified needs are addressed. Participants are asked to complete three short research questionnaires as part of the study, repeated after 2, 4 and 6 weeks. A subgroup of participants were invited to participate in interviews.ResultsIn the first 6 months of data collection, 318 patients were invited to take part, 100 patients have consented (31.4% response rate). The number of completed questionnaires returned at the following time points are as follows; baseline: n=82, 2 weeks: n=65; 4 weeks: n=51; and 6 weeks: n=37. Sixteen patients have been interviewed. Interim results and methodological issues will be presented at the conference.Conclusion(s)Data generated from this feasibility study will guide the development of a further, larger definitive multi-centre study to define the clinical utility of SPARC.