bluuebunny/crossref_metadata_2025_split huggingface dataset:
‘We all talk about it as though the authors are thinking about the same thing’: healthcare professionals' goals in the management of pain due to advanced cancer – a qualitative study
Authors: Bhatia Rebecca , Reid Colette , Forbes Karen , Gibbins Jane 
Published: March 2012

Background and aimsCancer pain remains a significant problem worldwide. As well as challenges relating to the assessment and measurement of pain, barriers still exist which impede the successful treatment and there is no consensus as to what constitutes good pain control. Despite the plethora of research tools available to assess pain, little is known about what patients and healthcare professionals (HCPs) feel is important in pain management. This study aimed to explore what goals HCPs hold when managing pain.MethodsHCPs involved in the management of cancer pain were purposively sampled and interviewed using a semistructured technique. Data were analysed using the constant comparison technique, based on the principles of grounded theory.ResultsAnalysis of the interviews revealed four main themes: assessing pain, managing pain, managing expectations and building relationships. Managing pain included helping patients to maintain function and sleep, but also involved finding the meaning of the pain, being with, educating and empowering, and maintaining hope and a sense of self for the patients. HCPs used different terms when managing pain, such as ‘pain control’, but found it difficult to define these terms. Managing patients' expectations was seen as an important goal for HCPs in managing pain but it wasn't always clear how these expectations had been elicited. The HCPs discussed the importance of building therapeutic relationships but alluded to the tension between being patient-centred and controlling pain, particularly when patients were reluctant to increase opioids.ConclusionThe interview findings suggest that the use of goal setting, a technique used commonly in the management of chronic pain, would allow explicit joint identification of goals and expectations and a negotiated patient-centred outcome measure. The setting of realistic targets may also protect HCPs from burnout by preventing a sense of failure.
Education and training in end of life care for health and social care professionals in north west England
Authors: Duxbury Joy , Obrien Teri , Pulsford Dave , Yates Sue 
Published: March 2012

BackgroundEducation and training in end-of-life care is recommended for health and social care staff at a range of levels. Such education should embrace an understanding of contemporary policy, best practice initiatives, care pathways and key interpersonal skills.Aims of studyTo scope the nature and content of education and training in end-of-life care for health and social care professionals in one region of England; To identify gaps in existing provision and priorities for future educational initiatives.MethodsAn online survey of University-based educational provision in North-West England (n=7 Universities) and health and social care provider-based training initiatives (n=48 provider organisations); An online survey of health and social care professionals (n=446) to ascertain their views regarding their preparedness for delivering end-of-life care and perceived gaps in their education and training; Focus groups of health and care staff (n=21); people receiving end-of-life care (n=16) and carers of such people (n=16) to provide further information regarding staff's preparedness for end-of-life care and education and training needs.ResultsEducation and training was wide-spread but varied widely in extent and content. Key learning methods were discourse and discussion but skills' training was less formally evident. Contemporary best practice and policy initiatives were widely but not universally addressed. Staff's preparedness for end-of-life care varied with role but many staff identified additional learning needs, particularly those is non-specialist roles. Awareness of policy and best practice was not universal. Patients and carers reported mixed experiences of care which they perceived to be the result of poor skills preparation, attitudinal barriers and a lack of co-ordination.ConclusionWhile much education and training related to end-of-life care is on offer in North West England, best practice is not always being addressed. Staff overall require greater awareness of contemporary policy and practice initiatives and enhanced interpersonal skills.
Exploring attention restorative theory and its use in fatigue management
Authors: Kirshbaum Marilyn N Y , Purcell Brigid , Graham Joanne , Phillips Stephen , Malone Jackie , Kaye Vicky 
Published: March 2012

BackgroundFatigue is a common and distressing symptom of long term illness, palliative care conditions and cancer, and a concern for families, carers and healthcare practitioners. Attention Restorative Theory (ART) was developed by Kaplan (2001) following his interest in restoring mental attention within the ‘person-environment interaction’. Within this framework, restorative activities have aspects of ‘being away’ (ie, distinct from routine), ‘fascination’, ‘extent’ (ie, scope) and ‘compatibility’.AimsTo explore the routines and activities of fatigue suffers to determine which activities are enjoyed and could be seen to reduce mental fatigue. To analyse identified activities within an ART framework to determine core attributes of potentially beneficial interventions.MethodA qualitative ethnographic approach was used to obtain knowledge about a discrete population of people who suffer from fatigue as a result of a long term illness or palliative care condition. A purposive sample of 25 participants was selected according to diagnosis, age and disability from identified contacts within the local hospice, a podiatry clinic and service user representative groups. Those who had severe mental illness, a chronic fatigue syndrome or were under 18 years of age were excluded.Semistructured interviews lasting no more 45 min were conducted using an interview guide where the emphasis was on describing activities that are enjoyed, rather than dwelling on the limitations of fatigue.ResultsEarly analysis has identified activities such as: involvement in creative arts, baking, reading (all sorts), watching motor bike racing, singing or having a facial, as would be expected based upon individual personalities and characteristics. Upon further examination, two clear attributes emerged; activities had to have an aspect of assured safety or social interaction. Mental restoration attributes were also prominent.ConclusionsThe ART approach has interesting prospects and scope within fatigue management. Further research is required to explore and test potential implications.
Advance care planning in dementia and severe and enduring mental illness
Authors: Bass Madeline , Jackson Helen 
Published: March 2012

BackgroundDementia diagnoses are set to increase rapidly in the UK and this means that services need to be aware of the ethical issues associated with end of life care. The National Council for Palliative Care in the UK has worked hard to increase the knowledge of specialist palliative care professionals around issues relating to end of life care for people with dementia and their families. However, the bulk of the work will fall to generalist staff. This project looked at educating staff in a local mental health unit in Suffolk, as well as the patients and family carers of those with dementia, about this. It also looked at patient documentation, how staff approach such conversations and related ethical issues.AimThis project looked at educating mental health staff about advance care planning in a local mental health unit and extending this into all mental health services across the county. The project would also produce specific documentation to ensure sustainability in the future.MethodsFive subjects of education occurred on a weekly basis each for 30 min between July and December 2010: (1) what is advance care planning?, (2) use of SPIKES model in communication, (3) how to communicate ACP information to other healthcare professionals, (4) issues around DNAR in end of life care for people with dementia and (5) five important points to know when caring for someone with dementia. During the education sessions, staff were asked for their opinions about formats for documentation and guidelines.ResultsBy early 2011 documentation, guidelines, staff information, patient information and competences had all been completed. The documentation will be piloted in mid 2012.ConclusionAll staff were supportive and recognised the benefits of this care, not only for the patient and family carers but for them as well.
Hospital2home: face to face conferences and telephone conferences, is the outcome different?
Authors: Cave Lyn , Smith Clare , Stevens Anna-Marie , Riley Julia 
Published: March 2012

The Hospital2home (H2H) Service was initiated to improve handover communication between the Royal Marsden NHS Foundation Trust and the primary care team. Patients who are no longer receiving active anti-cancer treatment are offered a face to face meeting in their home, with key members of the community team invited. Sometimes, due to a change in the patient's condition or patient preference, a telephone handover is conducted instead. The aim of this service is to create a care plan including current and anticipated problems and identify a community key worker. This includes discussions around preferred place of care (PPC) and preferred place of death (PPD). Aim: The aim of this audit was to compare outcomes in the 2 groups. Specifically, actual place of death and achievement of PPDMethodData were collated between February 2011–August 2011 by H2H staff as part of routine clinical practice Results: A total of 105 case conferences took place between February 2011-August 2011, 67 face to face (FtF) and 39 telephone case conferences (Tcc). In the FtF group 38 patients (57%) have died and in the Tcc group 24 patients (62%) have died. The median survival was 12 days (interquartile range 8-35) in the FtF group and 16 days (IQR 12–33 days) in the Tcc group. Average Palliative Performance Status in each group was 50. Place of death (%): FtF Telephone National Home 53 63 18 Hospice 29 29 4 Nursing Home 8 0 17 Hospital 11 4 58 Not known 0 4 PPD was achieved for 93% of the ftf group and 86% of the Tcc group.ConclusionHigh home death rates are achieved in both groups. More patients in the FtF group achieved their PPD. Both services may be viable options. By 2012, we will have collated more data to confirm the preliminary findings.
Audit of delayed discharges from a specialist palliative care unit
Authors: Thompson Sara , Frampton Emma 
Published: March 2012

BackgroundEffective discharge planning is vital for palliative care patients so they can be cared for, and ultimately die, in their preferred location. Delayed discharges can result in ineffective use of resources and cause distress to patients. This audit looked into causes of delayed discharge from a specialist palliative care unit, and examined ways to improve the discharge process to ameliorate these factors.MethodsNotes from the first 26 admissions to a specialist palliative care unit from 1 January 2011 were examined. Incomplete or missing notes were excluded, as were admissions for end of life care. Information recorded included patient demographics, reason for admission, discharge destination, proposed and actual date of discharge, and reasons for any delay.Results44% of patients' discharges were delayed 3–57 days, leading to 164 extra bed days, with an average of 10 days delay per admission. Three patients were delayed due to medical causes; each of these had multiple reasons for their delay. Four of the five patients delayed for non-medical reasons were held-up by delayed package of care (POC) provision; late referral to social services was implicated in 75%. Men are 2.1 more times likely to be delayed than women and patients over 75 years of age are 2.1 times more likely to be delayed.ConclusionCauses for delayed discharge are varied and complex. Improvements in POC provision would reduce this major cause of delay. Discharge planning should begin early, with adequate information for patients to be able to make an informed decision. Increased efficiency in the multi-disciplinary team would increase the effectiveness of the discharge process. Identification of certain higher risk demographics should help to focus improvements in the discharge process. This audit has identified important trends, which, if improved, may save resources and improve patient satisfaction.
Hospice staff perceptions of caring for patients with a non-malignant illness
Authors: Balasubramanian Sundaravadivel , Read Sue 
Published: March 2012

IntroductionPalliative care nurses who have been traditionally caring for cancer patients (CP) have started to care for non-cancer patients (NCP) as specialist hospice environments are broadening their patient criteria to accept a range on non-malignant conditions outside of cancer within the United Kingdom (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 a 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 CNP 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.
Hospital palliative care team survey of symptom control requirements of pancreatic cancer patients
Authors: De Vos Sarah , Badgery Karen , Noble Sophie , Metcalfe Matthew , Steward William , Cooke Caroline 
Published: March 2012

BackgroundPancreatic cancer often presents late, treatment being palliative from diagnosis. Distressing symptoms are common, making quality of life and effective symptom control crucial.AimTo examine elements of care relating to symptom control of patients referred to hospital palliative care teams (HPCTs) associated with a tertiary hepatobiliary unit, to determine how the service could be improved.MethodThe Hepatobiliary MDT identified 78 patients presenting with advanced pancreatic cancer who died from July to December 2010. Data were gathered from hospital and HPCT notes using a proforma.ResultsMean survival from diagnosis was 6.6 months. 65% were referred to HPCTs, most commonly for symptom control (84%), particularly pain (63%), nausea (12%) and anorexia (10%). 12% were referred for psychological support. 53% were reviewed as inpatients, 47% as outpatients. 78% were seen on the day of referral. Physical symptoms highlighted at first assessment were pain (67%), constipation (26%), nausea (20%), anorexia (16%) and fatigue (16%). 88% of those with pain were on an opioid at first assessment; 29% on a regular strong opioid. Others were on regular weak opioids (38%), prn strong opioids (15%) or prn weak opioids (6%). The HPCT recommended an increased dose in 60% of those on regular strong opioids. In 75% of others, commencing a regular strong opioid was advised. 15% of those with pain were on a regular non-steroidal anti-inflammatory drug (NSAID) when first assessed. A regular NSAID was recommended for 10% of remaining patients. 59% had jaundice, 67% of whom underwent biliary drainage procedures. 27% had proven or symptoms suggestive of venous thromboembolism.ConclusionPatients with advanced pancreatic cancer often have rapidly progressive disease with multiple symptoms, pain being commonest. Strong opioids were underused, possibly reflecting lack of confidence among staff. Consideration should be given to education and pre-emptive discussion, plus possible prescribing, from diagnosis.
Planning the first national end of life care survey
Authors: Hunt Katherine , Shlomo Natalie , Addington-Hall Julia 
Published: March 2012

BackgroundThe End of Life Care Strategy highlighted a need to evaluate care experiences by accessing the views of those who use end of life care services. The Strategy identified the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire, which is completed by bereaved relatives, as a potential method of evaluating these experiences. The DH commissioned this study to explore the feasibility of a national VOICES survey.AimsTo develop the most appropriate methods for a national end of life care survey by considering recruitment, sampling, online methods, ethics, increasing participation and support for participants.MethodsVOICES was re-designed following user/professional discussion groups and analysis of existing VOICES datasets. 1422 deaths registered in two PCTs were identified by the Office of National Statistics using stratified sampling methods. Coroner-registered deaths were excluded. Deaths were assigned to one of two trial groups to determine the most appropriate recruitment approach (opt-in vs opt-out). Online completion was offered to all informants. Local organisations representing minority ethnic groups collaborated in publicising the survey, interpreting services were provided and advertising posters were translated into five languages. A series of support structures was initiated.ResultsResponse rate was 33% and response was significantly higher in the ‘opt-out’ trial group (40%, p<0.001). There were no complaints in either group: only two informants called the support line. 19% of responders completed online. Minority group responses were low. As planned, data weighting was used to account for non-response bias. Excluded coroner-registered deaths were significantly different to included deaths on a series of parameters.ConclusionsThe opt-out method is the recommended recruitment approach. Experiences of minority groups should be gathered using alternative methods. Coroner-registered deaths should be included and data should be weighted. VOICES detected differences between PCTs. It will be used in 2011/2012 together with these methods in the first national end of life care survey.
Achieving preferred place of care or death
Authors: Kreeger Lulu , Smith Karen , Tame Gillian , Todd Jennifer 
Published: March 2012

Background and aimsStudies support that the majority of patients want to die at home, yet in London, 66% die in hospital and Nationally, only 35% die in their home/care home. We therefore audited referrals to the hospital palliative care team over a period of 6 months, looking at documentation of and outcomes for preferred place of care/death (PPoC / D). Reasons why preferences were not achieved were documented using a locally adapted version of a model devised by the Health Sciences Research Institute, University of Warwick to measure the constraints to enabling patients to die at their preferred place (Mundayet al2009).Results83% of patients had a record of PPoC/D. 79% of patients who expressed a preference achieved this. Unpredictability of illness/rapid deterioration and lack of recognition of the potential for dying, were the main barriers that prevented patients achieving their preferences (41% of patients). For the 17% of patients where there was no record of PPoC/D, 45% was due to cognitive impairment and 31% due to rapid and unexpected deterioration. For patients where rapid and unexpected deterioration was the main factor to not recording/not achieving PPoC/D, discussions had not taken place prior to admission in the acute illness.ConclusionBetter identification of the potential for dying through the use of models such as the Gold Standard Framework in acute hospital's, might reduce barriers to achieving PPoC/D. Conversations about the future and about preferences can be initiated once the potential for dying is recognised. There is also a wider societal need to encourage more open discussion of these difficult issues and thereby address the taboos that surround attitudes towards death and dying to support decision making at the end of life.
A solution to the problem of clinical supervision for lone allied health professionals within a hospice setting
Authors: Andrew Inga , Worsfold Caroline , Storey Frances , Tibbett Sue 
Published: March 2012

BackgroundClinical supervision has long been an integral part of practise within the nursing profession, and more recently with allied health professions, the benefits of which have been demonstrated in the literature. Within the Hospice setting, allied health professionals (AHPs) often work alone within their professional group. During informal discussions, AHPs at St. Benedict's Hospice found they were experiencing similar challenges and changes to their clinical practise.AimsTo establish a peer-led, AHPs, clinical supervision group. Method: All AHPs working for the Hospice, were invited to attend; chaplain, occupational therapist, physiotherapist (community), physiotherapist (Hospice), lecturer/practitioner, pharmacist, social worker. The social worker declined to participate due to different management structures. Monthly, hour long meetings were planned, with each member agreeing to facilitate sessions on a rota for a year. A basic structure was established, including that brief notes would be taken on the following; What were the issues/problems? Analyse the event Proposed actions following the event What is the main learning taken away from the event?OutcomesOver the first year the mean number of participants per meeting was 4 (66%). The percentage of meetings participants attended ranged from 100 to 38%. The brief notes demonstrated participants sent apologies if unable to attend. After a year, participants all gave positive feedback, particularly about the benefits of supporting one another through times of great change within the NHS. The group was keen to continue and formally agreed an ‘AHPs clinical supervision contract’ including details of; ground rules, structure, documentation and evaluation. The success of the group continues, the mean percentage of AHPs at meetings this year is 75%.ConclusionThis well attended model of multidisciplinary clinical supervision could prove to be a solution to the problem of supervision for lone allied health professionals within a Hospice setting.