bluuebunny/crossref_metadata_2025_split huggingface dataset:
The preferred place of death between terminally ill cancer patients and their families in Shanghai
Authors: Gu Xiaoli , Cheng Wenwu , Cheng Menglei , Liu Minghui 
Published: March 2012

PurposeWhere people die may influence the quality of their death, little is known about the choice for place of death of cancer patients in Shanghai, China. Considering the culture difference and palliative care implement, we organised a prospective questionnaire based on the choice death place between terminally ill cancer patients and their families. Methods: Among 4 years, 352 Patient-family care giver dyads were surveyed. The main outcome variables of the study were age, sex, income, marital status, living condition, religious beliefs, medical resources, the choice of the place of death and its reason. Descriptive statistics, χ2, κ coefficients were used. Determinants of congruence on preferences were identified by multivariate logistic regression.ResultsThe majority choice of death place was home (82.5% and 72.3%). Patient-care giver dyads achieved 68.5% agreement on the preferred place of death. The κ coefficient of congruence was 0.59 (95% CI 0.54 to 0.66) For patients, worries of being a burden to others is the first reason for the choice of home; for families, the first reason was culture concerns. The Logistic regression analysis revealed the following independent predictors of preferring to die at home: age and living conditions.ConclusionThis study described the preference of the death place choice and potential influencing factors and revealed the possibility for the integration of effective home care model in Shanghai Palliative Care programs. Effective interventions need to be developed avoid unnecessary re-hospitalisations and unfavourable hospital deaths, and improve accordance with the patients' wishes. Acknowledge for the funding form helped the hospice: The preference of place of death between terminally ill cancer patients. (Funding NO: 2005383)
Medical identity in psychotherapy training: effect on medical practice
Authors: Meystre Chantal 
Published: March 2012

BackgroundMedical identity is formed intrapsychically and intrapersonally during training. Maintaining empathy in students and doctors in senior years is challenging. Empathy loss and use of defences may cause stress and isolation. Palliative care doctors become involved with patients and relatives more than other specialties. Integration of psychotherapy theory with medical knowledge has demonstrable benefits.AimsTo explore the effect of a pre-existing medical identity on the experience of training and working as an integrative psychotherapist and the effect of psychotherapy training on medical practice.MethodsInterpretative phenomenological analysis (IPA) explores daily events given meaning. The hermeneutic uses reflection and cyclical bracketing allowing preconceptions to rise to consciousness. As analysis arises from within the text, it is a robust method for working with identity. IPA has an ideographic base so the method supports small sample size research. Four medical consultants who also worked as integrative therapists, (two palliative medicine, one haematology, one diabetes and endocrinology) gave 90 min semistructured interviews. Ethical code and confidentiality followed the practice of UKCP. Interviews transcribed with prosodic information were analysed line by line demonstrating emergent patterns. Data coding linked themes into super-ordinate groups. Supervision and collegial interaction encouraged reflexivity.ResultsEmergent themes were Unpreparedness for medical school experiences and relating with patients prior to a medical identity; vulnerabilities were not discussed and defences against them formed a medical ‘shell’ psychotherapy training permitted expression of vulnerabilities, boundary setting, and personal closeness to patients and family. Transferences, resistances and the archetypal shadow of the medical profession were avoided by suppression of medical qualifications. The emergent true therapist self benefited both medicine and psychotherapy.ConclusionPsychotherapy training may benefit palliative care doctors retain empathy by limiting the use of unconscious defences, enhancing boundaries and maintaining holistic professionalism.
Facing death with a loved one
Authors: Lowes Julia 
Published: March 2012

BackgroundThis study explored the experience of caring for a loved one with terminal cancer who had expressed a wish to die at home. Interest was both professional, and personal from the experience I had supporting my mother with her terminal cancer diagnosis. End of life care is a major discussion point and is central to service improvements on an international scale. Literature reviewed, revealed some statistical data related to preference and actual place of death, together with limited research of the study topic. Studies note that carers are concerned with facilitating a home death, but rarely relate to the participants having expressed a wish themselves to die at home.Aim and methodologyThe aim was to explore carers' dilemmas in relation to facilitating dying at home for a close relative who had terminal cancer and expressed a wish to die at home, whether this was achieved or not. This was a qualitative, retrospective, phenomenological study, using the heuristic approach to investigate the true meaning of caring for a dying person at home. Data were collected through six unstructured interviews with bereaved carers. Ethical approval was received from the relevant bodies. Data were analysed using Collaizis procedural steps.ResultsThe overarching theme was that the experience was that of a journey, and this journey was not being taken alone, but was integral to the relationships that the dying person had with others. The descriptions were of a situation that was wholly influenced by and impacted on the individuals involved and their relationships with one another. Four key themes emerged and were divided into sub themes these are interlinked and described through the participants own words.ConclusionInformal carers play a significant role in facilitating dying at home, without this support this would be more difficult and distressing.
Perceptions of specialist psychology services for minority ethnic groups in East Berkshire
Authors: Ryninks Kirsty , Smith Paula , Bebb Katie 
Published: March 2012

BackgroundSpecialist Palliative Care Services (SPCS) face many challenges as palliative care expands to support people from different ethnic, cultural and religious backgrounds. In spite of high populations of Minority Ethnic Groups (MEGs) in East Berkshire, an audit of referrals to the Specialist Psychological Service for Oncology and Palliative Care (SPSOPC) accounted for only 8% of total referrals to the Psychology Service from 2010–2011.AimsTo investigate referring Healthcare Professionals' (HPs) perceptions and experiences of cultural issues when working in oncology and palliative care. A further aim was to explore potential reasons behind low referrals of MEGs to SPSOPC.MethodSemistructured interviews with a purposive sample of nine HPs (consultants, clinical nurse specialists, advanced nurse practitioners, social worker) who had referred to SPSOPC were conducted and analysed using Interpretative Phenomenological Analysis.ResultsHealthcare Professionals reported a number of tensions in their work with MEGs and SPCS. This included difficulty treating patients from MEGs, assumptions and misconceptions about their care, and a conflict between traditional eastern values and western medicine. They also reported challenges to their sense of professionalism, feeling overwhelmed and out-of-their-depth and fear of causing offence when treating MEGs. There was an apparent lack of understanding of SPCS and of Specialist Psychological Services in particular, which could result in a ‘conveyor belt mentality’ in respect of service delivery.ConclusionsHealthcare Professionals would benefit from increased education about MEGs and ways to accommodate cultural differences in service delivery. It is vital that SPCS and Specialist Clinical Health Psychology become more culturally competent and language-appropriate in today's multi-ethnic society. Enhancing understanding, awareness and delivery of culturally appropriate psychological services for MEGs has the potential to increase referrals of MEGs to SPSOPC, and to improve the quality of end-of-life care for this patient population.
Male carers' perceptions of support for themselves: findings from a national survey
Authors: Sibley Andrew , Payne Sheila , Addington-Hall Julia 
Published: March 2012

BackgroundMultiple sclerosis (MS) is more prevalent in women than men. Men are particularly likely to take on the role of carers in MS but this has been rarely researched. The EAPC Carer White Paper notes the paucity of research into carer subgroups' support needs.AimTo identify the perceptions of support for themselves of men caring for adults severely affected by MS.MethodQuestionnaire survey design. Questionnaire developed from initial qualitative interviews. Widely disseminated via UK MS Society.Findings231 men completed the questionnaire. The majority cared for an adult with secondary progressive MS (44.2%) or primary progressive MS (36.8%). Men lived in 45 UK counties and the mean age was 60 years. Most men stated it was ‘quite easy’ (45.8%) to access support for their own needs but a quarter said it was ‘quite difficult’ (26.0%). Older (p=0.05) and retired (p=0.012) men had significantly less difficulty. Many reported ‘no need’ (67.5%) but a quarter ‘would like’ (25.5%) some training. Men still working (p=0.05) and from Southern England (p=0.004) reported a greater desire for training. Half the men had to initiate contact with ‘most’ of the services (50.0%) they needed and a quarter with ‘some’ (25.5%). Few received pro-active support from ‘some’ (15.5%) or ‘most’ (9.5%) of the services they needed. Men still working had significantly less pro-active support (p=0.05). Men were divided having ‘no encouragement’ (38.1%), ‘some encouragement’ (34.1%), and ‘have encouragement’ (27.9%) respectively. Most men (69.3%) had not taken a break from caring, for more than 24hrs, in the last year but many that did were ‘very satisfied’ (50.0%) or ‘extremely satisfied’ (19.2%).ConclusionsMany men appear isolated and unable to take a break. Younger men still working had more difficulties and needs. Interventions are required to support health professionals pro-actively engage with male carers' needs.
The West Northumberland Palliative Care Pathway – a primary care centred pathway
Authors: Cunningham Bill , Williamson Ian , Shovlin David , McNamara Paul 
Published: March 2012

AimTo describe the development and implementation of an Integrated Care Pathway (ICP) for those with life-limiting illness in one locality utilising continuous quality improvement (CQI) and chronic disease management (CDM) principles; commissioned by and centred in primary care.BackgroundThere is a need to develop an evidence-based, effective, sustainable primary care-centred model for those with life-limiting illness which starts well in advance of the terminal phase, links together other key providers of care and identifies and addresses patient care preferences.MethodFollowing an NHS Improvement Foundation course a palliative care steering group was formed in West Northumberland involving all key organisations to plan the pathway. New commissioning powers were used to develop local enhanced services and the principles of CDM and CQI to identify and manage patients and promote change. Quantitative data was collected about important pathway processes and outcomes using Miquest software and an annual locality death audit.ResultsA locality partnership group oversaw three phases of commissioning and implementation: 1) The development of Palliative Care registers and data recording 2) Home care and community palliative care beds 3) Detailed pathway interventions. Improvements resulted in many clinical process and outcomes measures including an increase in registrations, the identification of patient preferences, use of ‘just in case’ drugs and Liverpool Care Pathway and a reduction in hospital deaths. However the use of advance care plans was suboptimal. Wide variations exist between practices.ConclusionsIt is feasible to commission and deliver an ICP centred in primary care to a defined population for those with life-limiting illness linking key providers of care. The use of CDM and CQI processes has enhanced this implementation. The authors need to increase the use of effective pathway interventions earlier to more patients and reduce variations between practices. Further research and work on cost-effectiveness is being planned.
Delayed discharges – staff views
Authors: Frampton Emma , Wee Bee 
Published: March 2012

TitleNursing staff and allied health professionals perceptions of delayed discharges from a specialist palliative care unit.BackgroundDischarge delays from specialist palliative care units are a common problem for patients. A delay in discharge, for whatever reason, can have significant implications for patients, and can mean that they are not cared for in their preferred place. There has been little research looking specifically at discharge delays from specialist palliative care units. Nursing staff and allied health professionals are often at the forefront of discharge planning, and little is known on their beliefs about this.AimTo investigate the perceptions of nursing staff and allied health professionals about discharge delays from a specialist palliative care unit.MethodsThe participants (nursing staff and allied health professionals) worked in a specialist palliative care unit in South Central England, and were involved in discharge planning for inpatients. The critical incident technique was used as the methodology. One-to-one interviews were audio taped, and analysed by the process of thematic analysis. Six participants were interviewed in total (five nursing staff and one allied health professional). The critical incident was defined as the ‘delayed discharge’, and participants talked about actual cases where a patient's discharge from the unit had been delayed.ResultsThe results were broadly split into six themes: patient and family issues, staff issues, communication, community care, equipment and ethical issues. Communication was raised so frequently by participants and was so pervasive that it was separated into a stand-alone theme.ConclusionsThe results illustrate the complexities of the discharge planning process and discharge delays, and there is unlikely to be a single causative factor in a patient's delayed discharge. It is a source of distress to patients, families and staff. Practical issues need to be addressed, and communication is vital at all stages.
Macmillan end of life discharge project: experiences of health professionals and carers
Authors: Jones Susan , Hamilton Sharon 
Published: March 2012

BackgroundMany patients nearing the end of life (EoL) express a wish to be cared for outside the acute hospital environment. However, hospital discharge processes often cannot offer a quick transfer, with the result that valuable time is lost for the patient and their family. This, along with the national need for Trusts to save acute bed days, were drivers for the introduction of a Macmillan discharge pilot project at one acute hospital.AimTo identify the experiences of professional staff and carers who had been involved with the new service. To inform future developments of the service.MethodsAn action research approach informed the study design. Data was collected through seven focus groups and two individual interviews with professional staff from the hospital and community (n=53) and interviews with six carers. Data was thematically analysed using the approach of Braun and Clark (2006).ResultsA key finding was how small the window of opportunity was for achieving a good EoL discharge. This window formed part of a discharge continuum that not only comprised a rapid transfer from hospital but started with timely communication with patients and their families regarding preferred place of care. The new service brought a more co-ordinated approach along this continuum which made an impact on the timeliness of the discharge process. Aspects where improvements could be made were identified from the data and informed an action plan which was devised by the service.ConclusionA complex mesh of factors need to be drawn together to effect a good discharge. This requires an emphasis on co-ordination combined with expertise in EoL care. The new service was successful in promoting a good discharge for many patients. However, further development of the service is needed so that more patients are able to achieve their preferred place of care.
‘Many hands make light work’ or ‘too many cooks spoil the broth’? Achieving the tricky balance of appropriate involvement in palliative care for cancer
Authors: Porter Katerina , Jarrett Nikki , Addington-Hall Julia , Corner Jessica , Davis Carol , Duke Sue , Lathlean Judith 
Published: March 2012

BackgroundAddressing the care needs of people with advanced cancer is often complex, requiring communication between different professional and lay care providers, across different geographical and professional boundaries. Achieving the right balance of support and autonomy can be difficult, needing to be tailored to each patient.AimIdentify and quantify the number of people involved in the care of people with cancer and palliative care needs, and explore the network of communication pathways between these different people.MethodCase study methodology was employed, each case involving one patient and the (patient-identified) people involved in their care (PIPCs) within the past 6 months. During indepth interviews with patients (n=24; mean length 65 min) and PIPCs (n=100; mean length 30 min), respondents identified and described the network of communication pathways surrounding the patient's care. A map of each patient's care network was drawn during each interview, and was subsequently redrawn using social networking software.ResultsPatients (15 female, 9 male; age range: 48–85) had a range of primary tumours (mean time since diagnosis: 9.5 months; range: 0.5–61 months). All were described as receiving or needing specialist or generalist palliative care at the time of recruitment (through General Practice (n=5); Hospital Specialist Palliative Care Team (n=8); Specialist Palliative Care Unit (n=11)). Patients identified 9–45 (mean:26) different people/teams as being involved in their care; an average of six PIPCs per case (range:0–11) were subsequently interviewed about their contribution to the communication surrounding this patient.ConclusionSample cases and selected communication maps are presented to illustrate the range of possibilities in numbers of PIPCs involved and the complexity of, and patient and PIPC satisfaction with, some patients' communication networks. The methodological utility of the mapping technique, and its potential contribution to achieving the right balance of involvement in palliative care, are considered.
Patients' experiences of oxygen therapy and dyspnoea: a qualitative study in home palliative care
Authors: Jaturapatporn Darin , Moran Erica , Obwanga Chris , Husain Amna 
Published: March 2012

BackgroundDyspnoea is a common and distressing symptom in advanced cancer patients. Our preliminary work shows that in the home palliative care population sampled for this study, the prevalence of dyspnoea is 29.5% and of those, 26.2% used oxygen therapy. Previous studies suggested that oxygen therapy can be a burden to patients.PurposeThis study seeks to report the prevalence and describe the experience of dyspnoea, pattern of oxygen use, and patients' perceived benefits and/or burdens of oxygen therapy in home palliative care patients receiving oxygen therapy.MethodsQualitative indepth interviews, using an interview guide, were conducted with eight participants in their homes. Thematic analysis was performed using a framework approach.ResultsAll patients in this project used oxygen most of the time. The descriptions of shortness of breath varied and were non-specific. The patients identified more advantages than disadvantages. The advantages of oxygen use included increased functional capacity, patients' perceiving oxygen as a life-saving intervention, as well as a symptom-management tool. The identified disadvantages were decreased mobility, discomfort related to the nasal prongs, barriers to accessing oxygen therapy and noise related to the equipment.ConclusionThe advantages of oxygen usage outweighed the disadvantages for this sample of patients in the home palliative setting.
The role of percutaneous cordotomy for management of severe cancer pain
Authors: Hugel Heino , Sharma Manohar , Goebels Andreas , Frank Bernhard 
Published: March 2012

BackgroundPercutaneous cervical cordotomy (PCC) is a nerve-destructive procedure for severe unilateral cancer pain related to mesothelioma and other cancers.AimsProspective case series of patients undergoing percutaneous cordotomy for cancer pain.MethodsProspective data collection for consecutive patients who underwent percutaneous cordotomy through a joint pain/palliative care clinic at a large regional pain centre in the Northwest between 2/2008 and 6/2011. Patients were assessed 1 day prior, 2 days post procedure as well as 4 weeks postprocedure. Average and maximum pain scores on a numerical rating scale (NRS) ranging from 0 to 10 of pain 24 h prior and 48 h and 28 days post procedure, the global impression of change scale, morphine equivalent 24 h prior to and percentage reduction after procedure and side effects from procedure were recorded.Results39 patients underwent PCS. Most common diagnoses were mesothelioma (19 patients) and bronchial carcinoma (10 patients). 29 patients had chest wall pain. Mean pain max score 24 h prior to procedure was 8.5 (SD 1.7) and 1 (SD 2.1) and 2 (SD 3.1) 48 h and 28 days post. Average pain score was 6.5 (SD 1.8), 0.85 (SD 2.1) and 1.9 (SD 2.98). Morphine equivalent dose median 140 mg prior to procedure and 50% reduction post procedure. Nine patients felt very much better, 23 patients much better on global impression of change scale 2 days post procedure. No patient had irreversible side effects from procedure.ConclusionPCS is a highly effective procedure for unilateral refractory cancer pain due to mesothelioma and other cancers in well selected palliative patients.