bluuebunny/crossref_metadata_2025_split huggingface dataset:
Non-professional carers' views on the care of the dying in an acute trust; the impact of a simple end of life tool
Authors: Bloor Sophia , Reid Colette , Burcombe Melanie , Gibbins Jane , McCoubrie Rachel , Forbes Karen 
Published: March 2012

AimsThe Department of Health's End of Life strategy promotes integrated care pathways for the dying as a means of improving end-of-life (EOL) care. The authors designed a pilot study to determine whether a simple EOL care tool could improve the dying experience in an acute hospital setting as perceived by carers.Methods40 patients received usual EOL care and 30 patients had their EOL care directed by the EOL care tool. Bereaved carers were contacted a month after the patient's death and asked to complete the validated VOICES questionnaire.Results20/40 questionnaires were returned by carers whose relatives received usual care and 18/30 by carers whose relative received care directed by the tool. Although numbers are small and therefore changes are not statistically significant, improvements were seen in the responses regarding medical and nursing care (43.8% of relatives rated nursing care as excellent in the usual care group compared to 83% in the EOL tool group). Benefits were seen in pain management (56.3% of carers perceived their relative had pain when receiving usual care vs 28% in the EOL tool group). Improvements were also seen in communication with more relatives feeling they were kept informed about the patient's condition in the EOL group than in the usual care group. (64% vs 38%). More carers were present when their relative died following introduction of the tool (43.8% in the usual care group vs 67% in the EOL tool group).ConclusionNon-professional carers reported improvements in some aspects of end-of-life care following the introduction of a simple EOL care tool. This needs further testing in an adequately powered trial.
Family care giving at end of life among older South Asians living in East London: a qualitative inquiry
Authors: Venkatasalu Munikumar Ramasamy , Arthur Antony , Seymour Jane 
Published: March 2012

BackgroundWith the increasing reliance on family care giving at the end of life, we need to know more about views, experiences and understandings among different cultural and ethnic groups that make up the UK population.AimThis paper examines the perspectives of older South Asians living in East London on family care giving at the end of life.MethodsFive focus groups and 29 indepth, semistructured interviews were conducted with 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used to analyse the data.FindingsPerspectives on family care giving at end of life among older South Asians living in East London are complex and seem to relate to inherited socio-cultural values. Value was placed on ‘honour’ within the family and upon the extended family and social network. Honour within the family was related to experiences of providing end of life care within marriage and the expectations of ‘filial responsibility’ in the provision of care. The extended family and the wider community were considered key in supporting the dying person and his or her immediate family.ConclusionThis study sheds light on family care practices and understandings of ‘family’ within South Asian minority groups that may help service providers and practitioners who have responsibility for health and social care in the community. Future research is needed to observe family care giving in ‘action’ among these ethnic minorities.
Can palliative care services reduce futile treatment? A systematic review
Authors: Harris Iain , Murray Scott 
Published: March 2012

BackgroundPalliative care interventions have the potential to reduce costs to the health service by reducing intensity of treatments intended to have curative effect while concentrating on quality of life and, in due course, quality of death. A patient receiving treatment inspired by curative intent during the end stage of their life is potentially exposed to medical futility.AimTo conduct a systematic review of evidence for palliative interventions' ability to reduce cost without impacting on quality of care.MethodElectronic search of MEDLINE, EMBASE, AMED and CINHAL databases; augmented by hand searching techniques. We selected only randomised controlled trials, cohort studies and case controlled studies where palliative care was the intervention or observation, with cost and either patient satisfaction with care or quality of life as an outcome measure.ResultsOf 1964 sources identified, 13 met the inclusion criteria by measuring both cost and at least one quality outcome. Evidence supported existing research that palliative care interventions generally reduce health service costs: only one study reported costs increasing during a palliative intervention. Evidence regarding quality of life outcomes was not conclusive, not least because small sample sizes hampered statistical assessments of data within trials. All sources had at least one methodological limitation identified within: these included failure to report measures taken with regard to blinding, no explanation of randomisation process, insufficient detail for some outcome measures and incomplete accounting for losses to follow-up.ConclusionsEvidence that palliative interventions cut costs by minimising futile medical acts, while not reducing quality of life is negligible. Further research, possibly using observational methods in view of some limitations inherent in trials, should be conducted.
An evaluation of attitudes of hospice staff to organ and tissue donation
Authors: Wale Jane , Faull Christina 
Published: March 2012

BackgroundEvidence suggests that organ and tissue donation is viewed positively by the donors' family including a small amount of evidence related to palliative care. The subject of organ and tissue donation is not routinely discussed with patients referred to Leicestershire and Rutland Organisation for the Relief of Suffering (LOROS) and very few patients donate.AimsTo investigate the attitudes of hospice staff to donation and to look at the perceived challenges of discussing such issues with terminally ill patients and their families.MethodsA questionnaire based on the questionnaire developed by Vrtis (1993) was mailed to all hospice staff. Staff were then invited to participate in focus groups so their views on discussing organ and tissue donation could be explored in greater depth.Results76/94 questionnaires were completed. 43/76 people wanted to donate their own organs when they died, 11/76 did not. 46/76 had discussed these wishes with their family. 39/76 members of staff had discussed donation with patients in the hospice and most of them felt comfortable doing so. Most staff (49/76) only discussed the subject if it was raised by the patient, 20/76 never discussed it, one discussed this matter routinely. The majority of staff thought that the topic was best discussed when the patient was well. Most staff felt that discussing tissue donation in the hospice would cause patients and families to be uncomfortable, and that families were more likely to feel horrified than pleased if the subject was brought up.ConclusionsThe study shows that staff are hesitant about discussing tissue and organ donation with patients; reasons include a fear of increasing distress, a perception that the discussions should take place when the patient is well and it being a subject that staff ‘do not even think about’ unless the patient instigates the discussion.
A comparison of cognitive function and activity levels in disease-free breast cancer patients
Authors: Minton Ollie , Stone Patrick 
Published: March 2012

BackgroundChronic fatigue is a feature in a subset of women successfully treated for breast cancer. The clinical features of this group are not well characterised. This study examines differences in objective cognitive function, activity levels and sleep in disease-free women who do and do not meet the criteria for CRFS.MethodsWomen between 3 months and 2 years after completion of any primary therapy were recruited from a nurse-led follow up clinic at a cancer centre. On the basis of a diagnostic semistructured interview they were classified as being cases of CRFS or non-fatigued controls. Participants underwent objective cognitive testing using a computerised battery and were asked to wear an activity monitor for a 1 week period. They also completed quality of life and fatigue questionnaires.Results114 women were recruited (69 controls and 45 cases of CRFS). There were significant differences between groups on fatigue, mood, sleep and quality of life scores. There were also significant differences in objective cognitive testing (tests of sustained attention, reaction time and verbal memory). There was an overall difference in daytime activity from actigraphy recordings. There were no differences on objective measures of sleep or in routine laboratory measures.ConclusionsOur study suggests that disease-free women with CRFS after successful treatment for breast cancer have a significantly lower subjective quality of life and mood. In addition, objective cognitive impairment in certain domains may play an important part in the subjective manifestation of these symptoms. There is also objective evidence on actigraphy of differing levels of activity. The subjective sleep disturbance and higher prevalence of insomnia do not correlate with objective measures.
How to approach advance care planning in severe COPD: a qualitative study of patients' views
Authors: MacPherson Anna , Walshe Catherine , O'Donnell Valerie , Vyas Aashish 
Published: March 2012

BackgroundAdvance care planning is recommended for patients with chronic obstructive pulmonary disease (COPD), aiming to reduce unwanted interventions, improve communication and influence place of death. Currently this is rarely done. Healthcare professionals' perspectives on the reasons for this have been sought, but there is little information about patients' views.AimsTo explore the views of patients with severe COPD on advance care planning and how they feel it could be best integrated into their care.MethodA qualitative interview strategy was adopted, drawing from grounded theory. Patients with severe COPD (gold standards framework criteria) were recruited from primary and secondary care until saturation was reached (n=10, 9M, 1F). Interviews using a broad topic guide were conducted in participants' homes, audio recorded and transcribed verbatim. Analysis was inductive, generating themes using techniques of constant comparison.ResultsParticipants wanted to discuss their future preferences and concerns with healthcare professionals, but did not feel comfortable making binding advance decisions and wanted to revisit these discussions regularly. Participants were not distressed by these discussions. Some participants felt more comfortable discussing future preferences with healthcare professionals they knew, others were comfortable with any healthcare professional involved in their care. Participants identified wanting more information about their diagnosis including prognosis early in their illness, but thought advance care planning would be more appropriate later. They expected their healthcare practitioner to initiate advance care planning discussions.ConclusionsAdvance care planning discussions could have a useful role in the care of patients with severe COPD, and fit with what patients expect from their healthcare team. Distress could be minimised by sensitive exploration, ideally within an established healthcare relationship. Regular discussion of disease status and likely progression, identified as being wanted from an early stage, could establish a good background to later discussion of advance care planning.
The relative importance of support domains in explaining adverse effects from family care giving
Authors: Grande Gunn , Ewing Gail , Sawatzky Rick 
Published: March 2012

BackgroundFamily carers play a central role in supporting patients at home towards the end of life. However, they often suffer considerable adverse effects from care giving. To improve care provision for carers the authors need to understand the predominant domains of support associated with adverse effects from care giving, where lack of support may have the greatest negative impact.AimsTo investigate the relative importance of different support domains in explaining adverse effects from care giving.MethodsSix hospice home care services in the UK identified and sent a postal survey to the main carer of all patients active on their caseload. N=225 carers participated (25% response rate). Survey measures included carer Preparedness (Archboldet al), Global Health (EORC QLQ-C30), Strain and Distress (FACQ-PC). Lack of support was measured through 14 core support domains of the Carer Support Needs Assessment Tool (CSNAT). Linear regression analysis was conducted to examine the associations between the support domains and carers' perceived preparedness, global health, strain and distress. The Pratt Index was used to evaluate relative importance.ResultsLack of daytime and night-time respite and not knowing what to expect in the future, were the most important CSNAT domains in explaining adverse effects from care giving. Overall lack of support explained the greatest variance in Strain (47%) and Global Health (35%), followed by Distress (29%) and Preparedness (27%). Further details of the relative importance of each support domain on each type of adverse effect will be presented.ConclusionsWhile the authors know general support for carers is likely to be beneficial, our analysis demonstrates the importance of understanding the relative importance of different domains of support in preventing adverse effects, in particular respite and reducing uncertainty about what to expect in the future.
Are health and social care professionals prepared for palliative care in parkinson's disease?
Authors: Kernohan W George , Waldron Mary , Foster Sue , Hasson Felicity , Cochrane Barbara 
Published: March 2012

BackgroundAlthough palliative care has been advocated in the care of patients with chronic diseases such as parkinson's disease (PD) they do not always receive it in a timely fashion.AimThe authors sought to identify the health and social care professionals; self-assessed levels of training and confidence to deal with palliative care in PD.MethodsWithin an exploratory research design, 32 health and social care professionals completed a survey on their levels of training and confidence in providing palliative care to people with PD. Descriptive statistical analysis was used to explore the data.ResultsNine doctors, nine nurses, seven Allied Health Professionals (AHPs) and seven social workers completed questionnaires. Half of the participants (n=16) had cared for over 30 patients with advanced PD. Over half (n=17, 53%), had received some training in both parkinson's disease and palliative care, while 13, (40%) had training in one or the other. Over half (n=17, n=53%) of participants were confident or very confident in managing or providing palliative care to patients with advanced PD. Four (13%) participants had low or no confidence in providing such care: three of this group were social care professionals. Those who had had training in PD (n=27 84%) tended to rate themselves as being more confident. Similarly, those who had training in palliative care (n=21, 66%) rated themselves as confident or very confident in providing palliative care to patients with PD and caregivers.ConclusionsMost respondents showed an acceptable level of readiness to manage and deliver palliative care in PD. Attendance at training sessions in PD and in palliative care leads to greater confidence in dealing with this condition.
Hospice staff perceptions of caring for patients with a non-malignant illness in the UK
Authors: Balasubramanian Sundaravadivel , Read Sue 
Published: March 2012

IntroductionPalliative care nurses who have been traditionally caring for patients with cancer (CP) have started to care for non-cancer patients (NCP) as specialist hospice environments are broadening their patient criteria to accept a range of non-malignant conditions outside of cancer within the UK.AimThe overarching aim of this qualitative research study is to explore the perceptions of registered nurses working in a hospice in Staffordshire, caring for NCPs. Specifically this involved: exploring how confident nurses feel while caring for NCPs; identifying and describing the similarities and differences when caring for this population and those with cancer; highlighting the educational needs related to understanding the natural history of symptoms and problems in non-cancer patients; and recognising nursing perceptions on what supports/disables confidence in caring for patients with a non-malignant disease.MethodFocus groups were conducted in this qualitative research study (n=8; n=8). The discussions were digitally recorded, transcribed verbatim and analysed using content/thematic analysis.ResultsFive key themes evolved from the research, namely: the importance of preparation; the differences and similarities between treating NCPs and CPs; the importance of collaborative working was crucial; staff and patient perspectives; and the associated challenges in terms of time, skills needed and interestingly, what the future holds for NCPs within the hospice context.ConclusionsFocus groups were used successfully to explore perceptions of registered nurses around caring for NCP within one hospice environment within the UK. While there were many challenges and tensions identified, these were well balanced with the tensions of positive and constructive comments around the integration of patients with non-malignant diseases within a traditionally cancer driven organisation. Such a change in direction will impact upon how staff manage this within existing palliative and end of life care provision.
Differences in perceptions of palliative care needs for children with neurological conditions
Authors: Yeo Tong Hong , Brooks Lynda 
Published: March 2012

ObjectivesTo explore paediatric subspecialities' roles and their perceptions of the need for palliative care among children with long term neurological conditions (LTNC) compared with paediatric palliative care specialists. To examine the ease of access to healthcare services among children with LTNC.DesignElectronic questionnaire survey of members of BPNA, BPPM, BACD, and BACCH. 24 questions evaluated different aspects of practices and attitudes of palliative care among children with LTNC by linear analog scale and multiple choice responses.ResultsTotal of 130 respondents from different specialities completed the questionnaire: 38 (29%) paediatric neurology, 18 (14%) general paediatrics, 26 (20%) community paediatrics, 24 (18%) paediatric neuro-disability, 18 (14%) paediatric palliative care and 6 (5%) other specialities. Majority respondents, 111 (85.4%) often look after and provide end of life care to children with LTNC and 118(91%) believe palliative care would be appropriate. Most non-palliative care respondents would refer children with life-shortening (104/112, 92.9%), progressive (110/112, 98.2%) or stable (90/112, 80.4%) neurological conditions to palliative care. However, most non-palliative care respondents (74/112, 66%, p=0.013) would not refer children with life-threatening conditions to palliative care. There is notable overlap in the palliative care related activities of each subspecialty. Both palliative care and non-palliative care respondents recognised core elements of palliative care specialists to include symptom management, psychosocial and spiritual support, and management of death and bereavement support. Many respondents reported difficult or no access to specialist palliative care (62/130, 47.7%) and specific services such as clinical psychologists (84/130, 64.6%) and social services (42/130, 32.3%).ConclusionsThis survey highlighted the appropriateness of palliative care among children with LTNC, and revealed a gap between established palliative care guidelines and perceptions of many paediatricians. Paediatricians should recognise that every life-shortening or life-threatened child should have access to palliative care and support. To avoid duplicating care provision and competing for limited resources, there is a need for close co-ordination of services.
Factors affecting quality of life of patients with advanced cancer of oesophagus with feeding gastro
Authors: Muganga Jessica , Kolya Frida , Basemera Jacquilline , Leng Mhoira , Namukwaya Elizabeth 
Published: March 2012

Management of patients with inoperable oesophageal cancer is challenging. The challenges to quality of life among patients with advanced cancer of oesophagus require a detailed investigation. Experience has shown that patients with advanced cancer of the oesophagus, who have a gastrostomy tube, have many concerns including; physical, social, psychological and spiritual. Very little is known about the quality of life of patients with advanced cancer of oesophagus with a feeding gastrostomy in Mulago hospital. This study will attempt to investigate and document the factors affecting quality of life of patients with advanced cancer of oesophagus with a feeding gastrostomy tube in mulago hospital.MethodsCross-sectional descriptive, qualitative study in Mulago hospital on patients with advanced cancer of the oesophagus, who are 18 years and above and have a feeding gastrostomy. Patients will be recruited until there is thematic saturation. Patients who are too unwell (unconscious) to participate will be excluded. The study will be compiled by end of June 2012 and will be ready for presentation in August.ResultsThe authors hope to identify physical, psychological, social and spiritual factors affecting quality of life of patients with advanced cancer of the oesophagus with feeding gastrostomy. Factors affecting the quality of life of patients with advanced cancer of oesophagus with a feeding gastrostomy in Mulago Hospital, will be established, and results will be used in future; In planning for management of Cancer of Oesophagus patients To improve health service delivery in cancer of oesophagus patients To increase public awareness The results will also be used for further studies.