bluuebunny/crossref_metadata_2025 huggingface dataset:
26 ‘What matters to me?’ staff perspectives on the identification and documentation of ‘what matters’ and the role of values-clarification in palliative care settings
Authors: Irvine Jack , Spiller Juliet , Finucane Anne
Published: August 2018

Introduction

Values-clarification has an important role in palliative care for clinical staff and their patients (Edwards 2014). The question ‘What matters to me?’ seeks to support patients in voicing their values and forms part of the daily assessment of each patient at the Marie Curie Hospice Edinburgh.

Aims

Explore staff perspectives on the role of understanding patient values and their interaction with clinical practice in a palliative care setting.

Method

The current study was a service evaluation investigating the practical application of ‘What matters to me?’ as a proxy question for values identification using a retrospective casenotes review and focus group discussion with 12 clinical staff. Data was analysed using a qualitative method thematic analysis.

Results

Doctors recorded ‘What matters to me?’ information most frequently (52%) and nurses second (36%). Focus group results indicated widespread understanding of the importance of values to staff personally and person-centred care but revealed varying approaches to electronic documentation. Multidisciplinary team meeting electronic records were found to be less useful than intended. Quality of evidence of community documentation of ‘What matters’ being transitioned to the inpatient setting was overall positive. Casenotes analysis gave rise to patient values core themes including family being at home and general health.

Discussion

This evaluation found extensive agreement regarding the positive impact of using the ‘What matters to me?’ question to elicit patient values. Implications for hospice practice will be discussed including clarifying electronic documentation practices increased healthcare assistant access to electronic records and regular updating of the nursing handover sheets.

Reference

. Edwards AW. Therapeutic values clarification and values development for end-of-life patients: A conceptual model.American Journal of Hospice and Palliative Medicine®2014;31(4):414–419.
33 Development of an intervention to support lung cancer patients and their clinicians when considering systematic anti-cancer therapy: the pact study, a prospective multi-centre multi-methods five-stage qualitative study
Authors: Nelson Annmarie , Byrne Anthony , Sivell Stephanie , Longo Mirella , Noble Simon , Lester Jason , Anagnostou Despina , Sampson Catherine
Published: August 2018

Background

The NHS aspires to place patients’ needs wishes and preferences at the heart of a clinical decision-making; however it is not clear how this can be routinely implemented. One example is the patient clinical care pathway for patients diagnosed with advanced non-small cell lung cancer (NSCLC) where there may be misunderstanding of the extent of disease prognosis and aims of treatment.

Aim

To understand how treatment decisions are made for NSCLC patients and map the decisions pathway.

Methodology

PACT is a prospective multi-centre multi-methods five-stage qualitative study. Non-participant observation of MDT meetings (n=12) determined patients’ allocation to treatment. Non-participant observation of patient-clinician consultations (n=14) explored communication of treatment options and decision-making. Interviews with patients/companions and clinicians (n=27) explored perception of treatment options and involvement in decision-making. Mediated discourse thematic framework and narrative analysis were used to analyse the data. An expert consensus meeting (n=33) finalised the content and format of a proposed intervention.

Results

For NSCLC patients decision making was a process rather than a single event. Patients’ priorities and preferences were not routinely or intrinsically part of the clinical pathway and arose according to the skills/attitudes of the clinician and the confidence/awareness of the patient. The interviews illustrate the uncertainty for patients around treatment considerations and highlighted the importance of knowing patients’ priorities and preferences.

Conclusion

Current pathway for NSCLC patients focuses on clinical management at the expense of patient-centred care. However clinicians’ attitude towards hope for patients with non-curative diagnosis is instrumental to any process change.
34 Specialist palliative care providers’ perspectives on how to meet the service delivery challenges in adult care homes in england: a national survey
Authors: Newman Alisha , Allnatt Gemma , Bowtell Nicola , Archer-Dutton Kerry , Hayes Anita , Longo Mirella , Pring Andy , Read Amanda , Taylor Ros , Verne Julia , Nelson Annmarie
Published: August 2018

Introduction

Care homes (CHs) play a vital role in the delivery of care towards the end of life (National Institute for Health Research 2017; Public Health England 2017) yet little is known about specialist palliative care (SPC) support in this setting.

Aim

To increase understanding of how SPC services support adult CHs in England and identify from a SPC provider perspective the challenges and enablers to good quality SPC.

Method

SPC services working directly with CHs in the community in England were invited to complete an online survey. Content analysis enabled qualitative data to be described.

Results

108 services participated. A range of challenges were identified including CH staff turnover lack of funding and retention of CH staff knowledge skills and competency.

Proposed ways to reduce/resolve challenges included:

Increased commissioning of SPC staff to work directly with CHs particularly to provide education/training

Strategic centralised and longer–term approaches to funding to facilitate continuity of support to CHs

Mandatory SPC core competencies and accessible training for CH staff to facilitate the prioritisation and uptake of training

Increased collaboration within and across organisations including regulators commissioners and providers of SPC CH and GP services to increase consistency and quality of SPC education and resident care

Conclusions

The data are of national relevance and enhances our understanding of the challenges and potential enablers to CH support from a SPC provider perspective. Increased funding and cross-organisational collaboration are thought to be important instruments for change. The views of others including CH staff should be sought.

References

. National Institute for Health Research.Advancing care – Research with care homes2017. Available at: https://www.dc.nihr.ac.uk/themed-reviews/care-home-research.htm [Accessed: 29th May 2018]

. Public Health England.Briefing 1 – Care home bed provision and potential end of life care need in people aged 75 or older in England2017. Available at: http://www.endoflifecareintelligence.org.uk/resources/publications/carehomes [Accessed: 29th May 2018]
35 Online randomised controlled trial to improve clinical estimates of survival (ORACLES): study design
Authors: Oostendorp Linda , White Nicola , Harries Priscilla , Yardley Sarah , Tomlinson Christopher , Ricciardi Federico , Gokalp Hulya , Stone Patrick
Published: August 2018

Introduction

Clinicians often struggle to recognise whether palliative care patients are imminently dying.1 2A previous study identified the factors that expert palliative care doctors (with demonstrated prognostic skills) had used to judge the probability of patients dying within 72 hours.

Aim and methods

To evaluate whether an online training resource can teach medical students to formulate survival estimates for palliative care patients that are more similar to experts’ estimates. In this online randomised controlled trial we will recruit 128 students in the penultimate/final year of medical school. Participants are asked to review three series of vignettes describing patients referred to palliative care and provide estimates (0%–100%) about the probability that patients will die within 72 hours. After the first series of vignettes students in the intervention arm are given access to the training resource showing how experts weighted the various symptoms/signs. Participants are asked to complete a second series of vignettes and then a third series after two weeks to assess if any effect has been maintained.

Results

Students’ survival estimates will be correlated with experts’ estimates to determine the baseline level of agreement and any changes following the intervention. The primary outcome will be the survival estimates provided in the second series of vignettes. Secondary outcomes include the estimates provided at the follow-up the weighting of symptoms/signs and levels of discrimination and consistency.

Conclusion

This study will provide evidence about whether a brief low-cost online training resource can influence how medical students make prognostic decisions in an experimental setting.

References

. Neuberger J. More care less pathway: A review of the liverpool care pathway.Department of Health2013. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf [Accessed: 30thMay 2018]

. White N, Reid F, Harris A, Harries P, Stone P. A systematic review of predictions of survival in palliative care: How accurate are clinicians and who are the experts?PLoS One25 August 2016;11(8):e0161407. Available from: http://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0161407&type=printable [Accessed: 30th May 2018]
4 Designing dying well: toward a new architectural approach of in-patient palliative care environments
Authors: Bellamy Annie
Published: August 2018

Neither a ‘hospital’ nor a ‘home’; the in-patient hospice has a unique architectural identity remaining largely undocumented. There is a plethora of architectural research regarding more common-place healthcare buildings such as hospitals and care-homes. (RIBA n.d) However the architecture of in-patient hospices is misunderstood in the role it can play in supporting the holistic principles of palliative care as backdrops for ‘not just a good death but a good life to the very end’ (Gawande 2014, pg. 245).

Reconciling the social and spatial this research aims to establish an authentic identity for in-patient hospices; developing opportunities and situations for environments that become ‘sympathetic extensions of our sense of ourselves’ (Bloomer KC + Moore CW 1977, pg. 78) enabling those at the end of their life to dwell with dignity.

An ethnographic study involving practise led design research; the research engages with experiences of the researcher and users of Welsh in-patient hospices alongside interrogations of existing architectural strategies. This inter-disciplinary methodology will provide a ‘back and forth’ movement to reflect with the community of practise upon design projects and fieldwork.

Foundation work concluded that ‘homely’ is a too broad and subjective concept with which to define meaningful architectural responses for the variety of users and uses of in-patient hospices. Building upon this initial visits to Welsh in-patient hospices and design primers of key moments of inhabitation aims to provide conclusions on how architecture can create and balance the individual phenomenological experiences and needs of patients family and staff.

References

. RIBA.Health buildings and hospitals[Online] (n.d). Available at https://www.ribabookshops.com/books/health-buildings-and-hospitals/010503/ (Accessed: 31 May 2018)

. Gawande A.Being mortal: Medicine and what matters in the end2014;245. New York: Metropolitan Books Henry Holt and Company.

. Kent BC, Charles MW.Body memory and architecture1977;78. New Haven & London: Yale University Press.
40 Detailing public involvement (PI) within a study of bereavement support services for adults bereaved through advanced illness
Authors: Seddon Kathy , Fitzgibbon Jim , Harrington Barbara , Morgan Fiona , Scott Hannah , Sivell Stephanie , Pickett Sara , Longo Mirella , Byrne Anthony , Nelson Annmarie , Harrop Emily
Published: August 2018

Introduction

Adults experiencing a loss might develop complicated grief reactions which is associated with mental and physical health problems. This study included a systematic review of the evidence and the development of a core outcome set for bereavement research in palliative care. Public involvement was integral throughout. The collaborative relationship with the research partners (RPs) was fully planned and then documented through reflective log sheets.

Aim

To detail the research partners’ contribution to the study.

Methodology

RPs helped refine the RQ. The study protocol set out the steps needed to ensure that:

Research design and methods used were appropriate for bereaved adults

Study documentation and outputs were accessible to ‘lay’ readers

RPs ‘experience based’ expertise was embedded in ongoing project planning outputs and future research design

The experience for RPs was worthwhile leading to new skills and knowledge

Reflective log sheets were used to capture how well this was achieved. These were completed independently by the researcher and RPs. Their reflections were shared at quarterly meetings.

Results

The reflective logs confirmed that steps one to five were carried out. RP inputs achieved the planned impact (e.g. the questionnaires held hardly any missing data reflecting content and face-validity). Enhancement of the bereavement research through planned documented collaboration was thus confirmed.

Conclusion

Well planned and documented PI enhances the quality of health care research. Researchers felt that the solid collaboration with the research partner broadened their perspective and signalled a clear departure from a simple tick box exercise.
41 ‘We should not shy away from asking what it is that patients want’ a supplementary qualitative analysis of the jla peolcpsp free text data
Authors: Sivell S , Baillie J , VanGodwin J , Byrne A , Nelson A
Published: August 2018

Introduction

Palliative and end-of-life care is under-researched (Higginson 2016) with stakeholders likely to have a range of unmet communication information and support needs. The James Lind Alliance (JLA) Priority Setting Partnership (PeolcPSP) identified the pertinent ‘treatment uncertainties’ for palliative and end-of-life care focusing on interventional based research (JLA PeolcPSP Survey 2015). Respondents also submitted comments that were out of scope of the JLA methodology.

Aim

To undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.

Methods

A supplementary thematic qualitative analysis of the JLA PeolcPSP free-text data was undertaken in the final dataset of 1403 responses. The original coding framework was reviewed and refined until agreement was reached (Nelson 2016).

Results

Approximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:

Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.

Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.

Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.

Spiritual and psychosocial needs:providing emotional and psychological support for patients carers and professionals.

Conclusions

We identified a wide range of communication and decision-making concerns as well as psychosocial support adding further insight to the survey results. Both quantitative and qualitative approaches are recommended if we are to meet all stakeholders’ needs in palliative and end-of-life care.

References

. Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.

. Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care.Summary ReportJuly 2016. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf

. Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015).Final Report15 January 2015. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf (Accessed: 30 May 2018)
42 Bittersweet life in the face of loss: the experience of parenteral nutrition for women with ovarian cancer and their relatives
Authors: Sowerbutts Anne Marie , Lal Simon , Clamp Andrew , Jayson Gordon C , Todd Chris , Raftery Anne-Marie , Hardy Lisa , Sutton Eileen , Sremanakova Jana , Burden Sorrel
Published: August 2018

Introduction

Patients with advanced ovarian cancer can develop bowel obstruction. Oral intake is limited in these patients and home parenteral nutrition (PN) may be used to meet nutritional requirements.

Aim

To explore patient and family experience of home PN.

Method

Ninety-three longitudinal in-depth interviews were conducted with 20 women with ovarian cancer and inoperable bowel obstruction receiving PN, their lay-carers and healthcare professionals. Interviews were transcribed verbatim and analysed thematically influenced by the techniques of Van Manen (1990).

Results

Women and their relatives viewed PN as increasing length of life and allowing the women to live at home with some normality. However, the treatment was not without problems which may not be acknowledged by healthcare professionals. These included difficulties with activities of daily living, incursions of physical freedom as patients were attached to heavy PN bags and dealing with the bureaucracy associated with PN. Healthcare professionals were working to a patient-centred rather than a family-centred palliative care model, which could be problematic for some families with frail relatives. However, carers coped but emotionally were often left in a vulnerable state.

Conclusions

For patients and carers the treatment was a life line and they appreciated the extra time the women received. However this was gained through many losses which healthcare professionals need to portray accurately and implement a family-centred palliative care model when appropriate. Nevertheless, patients are prepared to suffer losses in order to continue living.

Reference

. Van Manen M.Researching lived experience: Human science for an action sensitive pedagogy1990. London Ont: Althouse Press.
43 Decision making about prognoses in multidisciplinary teams: an ethnographic study
Authors: Fordham Florence Todd , McCullagh Angela , Stone Paddy
Published: August 2018

Introduction

This study uses ethnographic methods to explore multidisciplinary team decision-making with a focus on prognoses at the end of life.

Previous research highlights that patients carers and clinicians value accurate prognostication. Both the recognition of dying and communicating this to patients and carers were acknowledged as key unanswered research questions in the PeolcPSP.

Providing quality palliative care requires different specialisms to meet the needs of the whole person – medically but also spiritually emotionally and socially. Multidisciplinary teams are considered vital to ensure that care is of the highest quality and that decisions made are evidence-based.

Aim

This study aims to understand how palliative multidisciplinary teams form collective judgements about prognoses.

Methods

Ethnography provided an appropriate methodology for this study as it facilitates the documentation of prognostic estimates in MDTs capturing insights into the perspectives and practices of team members exploring the influences of the structure location and nature of the meetings. Through observations and semi-structured interviews ethnography allowed an interrogation of the issues in decision-making.

Results and next steps

Preliminary findings have highlighted that different disciplines use prognoses in diverse ways. For example social workers and discharge administrators use prognoses to fast-track care decisions and funding favouring an accurate numerical score whilst the medical team use prognoses as a suggestion of appropriate care preferring fluid descriptive terms.

The findings will be used to will inform recommendations for future guidelines to MDTs to improve communication and decision making while discussing the prognoses of patients at the end of life.

References

. Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: A systematic literature review.Patient Education & Counseling2009;77(2):179–86.

. Steinhauser KE, Christakis NA, Clipp EC, et al.Preparing for the end of life: Preferences of patients families physicians and other care providers.Journal of Pain & Symptom Management2001;22(3):727–37.

. Kutner JS, Steiner JF, Corbett KK, et al. Information needs in terminal illness. Social Science & Medicine1999;48(10):1341–52.

. Steinhauser KE., Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients family physicians and other care providers. JAMA2000;284(19):2476–82.

. The Palliative and end of life care Priority Setting Partnership (PeolcPSP). Final Report (January 2015). https://palliativecarepsp.files.wordpress.com/2015/01/peolcpsp_final_report.pdf

. Blazeby J, Wilson L, Metcalfe C, et al. Analysis of clinical decision making in multi-disciplinary cancer teams. Annals of Oncology2006;17:457–60.
45 Maximising recruitment to clinical trials in hospices- experience of a multicentre study using the ‘social marketing mix framework’
Authors: White Clare , Noble Simon , Watson Max , Swan Flavia , Johnson Miriam
Published: August 2018

Introduction

Research in specialist palliative care units (SPCUs) has traditionally been considered difficult and studies are limited with poor recruitment and high attrition rates making interpretation of results challenging.

Aims

To analyse recruitment from a UK multisite study in 5 SPCUs which recruited above target and compare recruitment strategies with recommendations from the ‘Social Marketing Mix Framework’ (SMMF) and learn lessons for future research in SPCUs.

Methods

Recruitment data from the HIDDen (Hospice Inpatient DVT Detection) Study was analysed and compared with SMMF recommendations for improving recruitment to trials in palliative care.

Results

Over 17 months 1390 patients with cancer were screened for HIDDen study inclusion in five SPCUs (three in N. Ireland, one in England and one in Wales) 797 (57%) patients were ineligible. 206 (35% of those eligible) declined participation with 387 (65% of those eligible) recruited. When compared with the ‘6Ps’ of SMMF the study protocol addressed ‘Participants’ with broad study eligibility criteria ‘Product’ by replicating clinical practice with no change to routine clinical care and no competing trials ‘Price’ through minimising patient and carer burden and easing the consent process ‘Place’ by being done in patients own room in the SPCU and using five sites ‘Promoting’ through role play and maintaining the research profile and ‘Partners’ by addressing gatekeeping and minimising input from clinical staff by having on-site research staff.

Discussion

Good recruitment to trials is possible in a SPCU setting and use of the ‘6Ps’ of SMMF can help in trial design and recruitment.

Reference

. Dunleavy L, Walshe C, Oriani A, Preston N. Using the ‘social marketing mix framework’ to explore recruitment barriers and facilitators in palliative care randomised controlled trials? A narrative synthesis review.Palliative Medicine2018;32(5):990–1009. doi:10.1177/0269216318757623
47 The impact of supportive-expressive group therapy (SEGT) as an intervention on health-related outcomes and social support for people with advanced disease: a systematic review
Authors: Bei Eva , Kupeli Nuriye , Candy Bridget
Published: August 2018

Introduction

SEGT has been found to be a valuable manualised model of therapy for reducing emotional distress facilitating the person’s management of the disease-related symptoms and improving quality of life in cancer populations (Butleret al. 2009; Classenet al. 2001; Lemieuxet al. 2007). The fundamental domains covered by this model include promoting emotional expression confronting existential issues and optimising social support (Classenet al. 2001; Spiegel Bloom and Yalom 1981). Despite trials there are to our knowledge no systematic reviews that have sought to critic and pool evidence from all Randomised Controlled Trials (RCTs) on SEGT for people with advanced disease.

Aims

To critique and pool the evidence from RCTs on the effectiveness of SEGT as a palliative care intervention for patients with advanced disease.

Methods

Four databases (Pubmed Medline CINAHL PsycINFO) conference proceedings and grey literature were searched for relevant studies in April 2018. A combination of MeSH and free-text terms on SEGT and end-of-life were used. Key review processes will be undertaken in duplicate. If appropriate meta-analysis will be considered.

Results

The search identified unique 2291 citations. Screening these identified 27 potential relevant studies. Following full text review and contact with the authors of not-available full text papers five RCTs on SEGT met our inclusion criteria.

Conclusions

This review is at data extraction phase it will be completed by September. Further understanding of the quality of evidence impact of SEGT on health-related outcomes and social support will allow conclusion to be made for clinical practice.

References

. Butler LD, Koopman C, Neri E, Giese-Davis J, Palesh O, Thorne-Yocam KA, Dimiceli S, Chen X, Fobair P, Kraemer HC, Spiegel D. Effects of supportive-expressive group therapy on pain in women with metastatic breast cancer. Health Psychology2009;28(5):579–587.

. Classen C, Butler LD, Koopman C, Miller E, DiMiceli S, Giese- Davis J, Fobair P, Carlson RW, Kraemer EC, Spiegel D. Supportive-expressive group therapy and distress in patients with metastatic breast cancer: A randomized clinical intervention trial. Archives of General Psychiatry2001;58:494–495.

. Lemieux J, Beaton ED, Hogg-Johnson S, Bordeleau JL, Hunter J, Goodwin PJ. Responsiveness to change to change due to supportive-expressive group therapy improvement in mood and disease progression in women with metastatic breast cancer. Qual Life Res2007;16:1007–1017.

. Spiegel D, Bloom JR, Yalom I. Group support for patients with metastatic cancer. A randomized outcome study. Archives of General Psychiatry1981;38:527–533.
49 The use of patient-held records by children and young people managing a health condition: a realist review of the literature
Authors: Diffin Janet , Byrne Bronagh , O’Halloran Peter
Published: August 2018

Introduction

Patient-held records (PHRs) are proposed to improve communication and coordination of care amongst young people with life-limiting conditions their families and health professionals. However implementation of PHRs has proved difficult due to technical organisational and professional barriers.1

Aims

To identify the factors which help or hinder the use of PHRs by young people with life-limiting conditions.

Method

Systematic realist review. Literature was sourced from six databases: Medline Embase CINAHL PsychInfo The Cochrane Library Science Direct (from 1946 to December Week 1 2016). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme (CASP) tool.

Results

Nine articles were included each reporting on a different PHR. Young people (and/or parents/carers) with conditions of higher severity requiring ongoing care more medications and frequent appointments with multiple providers were more engaged with the PHR. Service providers need sufficient knowledge about the PHR and organisations need to ensure staff can see the benefits of using the PHR for implementation success. Mechanisms triggered by the PHR included improved self-advocacy and young people becoming empowered to self-manage their condition.

Conclusion

Clear definitions of which young people would benefit from using a PHR must be established in order to direct resources accordingly. These definitions will help inform which organisations and service providers would see the most reward from PHR implementation.

Reference

. Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: A scoping review.Journal of American Medical Information Association2011;18(4):515–522.
55 Palliative care for people with motor neurone disease. An integrative literature review
Authors: Hollowood Lorna
Published: August 2018

Motor neurone disease (MND) is a rare progressive neurodegenerative disease which results in muscle weakness reduced mobility dysphagia and speech and breathing difficulties with no curative treatment or remission where 50% of patients die within three years of their first symptom and many dying within a year of diagnosis (Whiteheadet al.2012 Wood-Allum 2014). Access to palliative care for people with motor neurone disease (MND) is an area of concern for the person with the condition as well as the carers supporting them (NICE 2016). This literature review examines the specific challenges in palliative care for people with MND and their carers.

A systematic search was undertaken of the literature yielding 534 articles. This was reduced by inclusion and exclusion criteria to 43 articles which were selected for critical appraisal for their relevance to the topic using MacKenzie et al’s (2010) quality review tool resulting. 16 articles were themed using Thomas and Harden’s (2008) thematic analysis approach.

Four themes emerged from the literature: the specific needs of carers of people with MND; Service provision; hope and depression and ethical decision-making.

Despite a lack of quantifiable data relating to specialist palliative care to improve palliative outcomes in people with MND the literature shows that MND patents and their care-givers have a great need for integrated services which are equipped to deal with their very specific needs. The management of hope and depression should form an integral part of the palliative care provision. Advance care planning offers a framework to support communication between services and families. The symptoms experienced at end of life require specialist skills to manage and needs the support of a multidisciplinary team.

References

. Whitehead B, O’Brien MR, Jack BA, Mitchell D. Experiences of dying death and bereavement in motor neurone disease: a qualitative study.Palliative Medicine[online] 2012;26(4):368–78. Available from: MEDLINE

. Wood-Allum CA. Unanswered questions and barriers to research in the palliative care of motor neurone disease patients.Journal of Palliative Care[online] 2014;30(4):302–306. Available from: Academic Search Complete

. NICE.Motor neurone disease: assessment and management NICE guidelines[NG42] [online]2016. Available from: https://www.nice.org.uk/guidance/cg105
56 Rapid review of dissemination strategies and activities as listed in published protocol papers
Authors: Palmieri Maria Giovanna , Morgan Fiona , Longo Mirella , Gregory Clive , Nelson Annmarie , Hepburn Julie
Published: August 2018

Background

Dissemination of research results is now recognised as an important part of the research process. UK funding agencies and the Health Research Authority require that researchers have a clear plan about how findings should be reported back to patients and members of the public. Wider dissemination using a range of mechanisms specifically targeting the lay community enables the work to have impact outside its academic base and accelerate implementation. The study evolves over three stages: a review of the literature surveys of key stakeholders (research partners study participants members of the public and researchers) and a consensus meeting.

Aim

To present a literature review of dissemination activities planned by researchers as reported in published protocol papers.

Methodology

The MEDLINE electronic database was searched to identify study protocols published in 2017 and covering a range of study designs.

Results

138 papers published in 2017 were reviewed. Most papers lacked a clear and detailed dissemination plan. In general descriptions of dissemination plans were short and listed a very limited number of stakeholder groups targeted for dissemination and few dissemination channels. A few papers contained additional information on dissemination strategies and activities. Four papers mentioned specific feedback to participants by newsletter or other methods. A full and detailed dissemination plan was present in three protocol papers.

Conclusion

Most of the previous research has focused on the researchers’ perspective. The guidelines will embed the views of other stakeholders including the general public patient participants in research trials funding bodies and policy makers.
58 Support needs of informal carers of patients with copd and implications for improving carer support
Authors: Micklewright Kerry , Farquhar Morag
Published: August 2018

Introduction

Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease (COPD) but with considerable impact on their health and wellbeing.1 2The literature on support needs of these carers has not been fully synthesised and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool3(CSNAT) for carers of patients with COPD is limited.

Aim

To identify relevant carer support needs from the published literature in order to explore the comprehensiveness of the CSNAT for carers of patients with COPD.

Methods

English language studies published between 1997–2017 were identified against predetermined inclusion/exclusion criteria through searches of MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to CSNAT items.

Results

24 studies were included in the review. Preliminary results (synthesis ongoing: completes September 2018) indicate that carers have support needs in a range of domains that include physical psychological spiritual and social needs. Early findings suggest additional CSNAT items may be required in order to encompass the full range of needs of this group particularly relating to difficulties within the patient-carer relationship and accessing services.

Conclusion

Based on preliminary results there is evidence to suggest the need for additional CSNAT items for COPD carers and that these carers would benefit from identification and response to their support needs by healthcare professionals to improve carer support.

References

. Cruz J, Marques A, Figueiredo D. Impacts of COPD on family carers and supportive interventions: A narrative review.Health and Social Care in the Community2017;25(1):11–25.

. Grant M, Cavanagh A, Yorke J. The impact of caring for those with chronic obstructive pulmonary disease (COPD) on carers’ psychological well-being: A narrative review. International Journal of Nursing Studies2012;49:1459–1471.

. Ewing G, Grande G.The CSNAT2018. Available at: http://csnat.org/ (Accessed: 29/05/18)
6 Compassionate neighbours – an innovative model building caring communities
Authors: Attridge Carly , Richardson Heather
Published: August 2018

Introduction

In 2014 St Joseph’s Hospice set up compassionate neighbours (CN) to address social isolation for those experiencing a chronic or terminal illness. Built on foundations of community development principles the neighbours provide emotional and social support to community members. With significant funding from Nesta we are upscaling the project with seven other hospices.

Aim

Our aim is to build a wider network of CN who are supporting people in their local communities; we will test and learn how the project can be replicated in other areas. Our ultimate aim is to create a social movement establishing a network of CNs across the country.

Method

We are training and mentoring other hospice adopters to replicate the project in their own areas whilst testing which ingredients are key to the success of the project. Our review of the programme including formal evaluation will form the basis for a potential national roll out across the country.

Results

Review of our progress including a recent conference for CN feedback from hospice CEOs and project leads describes ongoing interest in the CN programme. There is additional interest from other hospices and other organisations outside of the Nesta programme. That said challenges exist around local implementation of a model shaped elsewhere translation of particular principles underpinning the CN programme and concerns around long-term sustainability and ownership of the network.

Conclusion

Further thought is required about how to build the social movement and whether this effort should sit within the hospice sector or within a community development context in the future.
9 Using what people value to develop new interventions in palliative care: a multilevel level review approach
Authors: Candy B , Armstrong M , Amey R , Booth J , Flemming K , Kupeli N , Maclean V , Preston J , Stone P , Wilkinson S
Published: August 2018

Introduction

Complex interventions are common in palliative care (PC) but are difficult to evaluate. Complementary therapies (CT) are one type of widely-used complex intervention for which there is inconclusive evidence. No systematic review has been conducted in PC of trials or of qualitative studies of patients’ views of CTs. There are novel approaches with established exemplars of using both types of reviews to help develop more clinically appropriate interventions. These approaches are in their infancy in PC research and have much to offer the specialism.

Aims

Using our on-going review on CT we present as an exemplar in PC an approach to draw together the findings of trials and qualitative studies in a data table (matrix) to contrast what patients value and want with how the intervention is tested.

Methods

We sought trials on the effectiveness of CT and qualitative studies on patients’ perspectives about these therapies. Our primary outcomes for trials included anxiety. Eight databases were searched in 2017. Citations and full-text papers were reviewed to identify relevant studies. Meta-analyses pooled trial data where appropriate and a thematic synthesis is being undertaken to understand patient experience. These findings will be combined in a matrix to explore similarities and differences.

Results

19 trials and five qualitative studies were included. Data analysis and development of the matrix which includes intervention content and patients’ needs is currently underway. We will present the final matrix framework.

Conclusions

Our approach demonstrates a potential way in PC to enhance development of practice appropriate complex interventions.
Eighty-nine-year-old woman with abdominal pain and vomiting
Authors: Schramm Joerg , Rickenbacher Andreas , Keller Dagmar Iris
Published: August 2018

Clinical introduction

An 89-year-old female patient presented to the ED with mild abdominal pain and a history of vomiting for 3 days. Because of dementia, further history was unclear. Vital signs were normal. Clinical examination revealed mild abdominal pain without defence or signs of peritonism. Bowel sounds were normal. Lab results showed a white cell count of 16x109/L, otherwise normal. There was no episode of vomiting during the ED consultation. A supine AXR was performed (figure 1).

Figure 1

Supine AXR.

What is the diagnosis?

Foreign body

Gallstone ileus

Colon obstruction

Intestinal volvulus
Man with severe abdominal pain
Authors: Chen Chia-Wei , Lee Wei-Jing
Published: August 2018

Clinical introduction

A 59-year-old man with no medical history presented to the ED with abdominal distension, vomiting and diffuse abdominal pain after drinking seven cups of white gourd drink (an authentic Asian drink composed mainly of white gourd). A chest radiograph was performed (figure 1).

Figure 1

Chest radiograph. AP, anteroposterior.

Question

What is the most likely diagnosis?

Crescent in doughnut sign, intussusception

Falciform ligament sign, pneumoperitoneum

Stepladder sign, small bowel obstruction

Coffee-bean sign, sigmoid colon volvulus
BET 1: Prehospital cardiac troponin testing to ‘rule out’ acute coronary syndromes using point of care assays
Authors: Alghamdi Abdulrhman , Body Richard
Published: August 2018

A shortcut review of the literature was carried out to establish whether prehospital point of care (POC) troponin tests are reliable and accurate enough to detect acute coronary syndrome (ACS) in adult patients.

Nine papers were found to be relevant to the clinical question following the below-described search strategies. The author, date and country of publication, patient group studied, study type, relevant outcomes, results and study weaknesses of those best papers are tabulated. It is concluded that based on the currently available evidence, POC troponin assays are insufficiently sensitive to ‘rule out’ ACS in the prehospital environment.
BET 2: Twist score in cases of suspected paediatric testicular torsion
Authors: Ridgway Alex , Hulme Peter
Published: August 2018

A shortcut review of the literature was carried out to establish whether the Testicular Workup for Ischemia and Suspected Torsion (TWIST) score was reliable and accurate enough to rule out testicular torsion in the paediatric population.

Four papers were found to be relevant to the clinical question following the below-described search strategies. The author, date and country of publication, patient group studied, study type, relevant outcomes, results and study weaknesses of those best papers are tabulated. It is concluded that based on the currently available evidence, a low-risk TWIST score has a high sensitivity and can be used in line with clinical judgement to rule out testicular torsion.
Prospective assessment of the diagnostic and prognostic utility of rotational thromboelastometry for canine disseminated intravascular coagulation
Authors: Barthélemy Anthony , Pouzot‐Nevoret Céline , Rannou Benoît , Goy‐Thollot Isabelle
Published: August 2018

This study compared the haematological, haemostatic and thromboelastometric (TEM) parameters between dogs with and without suspected disseminated intravascular coagulation (DIC). Seventy‐six dogs with a medical condition known to predispose to DIC were prospectively included in the study. Thirty‐eight dogs (50 per cent) presented with haemorrhagic diatheses. DIC was diagnosed in 32 dogs (42 per cent). Thirty‐five dogs (46 per cent) had a normal TEM profile, 25 dogs (33 per cent) had a hypercoagulable profile and 16 dogs (21 per cent) had a hypocoagulable profile. Except for the lysis parameters, all TEM parameters were significantly correlated with the presence of DIC in univariate and multivariate analyses. Mortality rates were significantly higher in dogs with DIC (50 per cent) than in dogs without DIC (27 per cent, P=0.043; OR 2.667, 95 per cent CI 1.049 to 6.701), and mortality rates were significantly higher in dogs with a hypocoagulable profile (69 per cent) than in dogs with a hypercoagulable (24 per cent, P=0.017; OR 4.800, 95 per cent CI 1.241 to 16.220) or a normal profile (31 per cent, P=0.046; OR 3.429; 95 per cent CI 1.006 to 11.470). All TEM parameters were significantly associated with mortality in univariate and multivariate analyses. Thromboelastometry appears to be a valuable tool for the diagnosis and prognosis of dogs with suspected DIC, especially those with a hypocoagulable profile that was associated with increased risk of death and increased risk of haemorrhagic diatheses.
Kernza intermediate wheatgrass (Thinopyrum intermedium) grain production as influenced by legume intercropping and residue management
Authors: Dick C. , Cattani D. , Entz M.H.
Published: August 2018

Intermediate wheatgrass yielded 519 and 446 kg seed ha−1in years one and two after establishment. Autumn grazing increased seed yield compared with post-harvest residue removal or chopping. Inter-seeding legumes (alfalfa (Medicago sativa), sweet clover (Melilotus officinalis), and white clover (Trifolium repens) did not affect intermediate wheatgrass seed production.
A model for training undergraduate students in collaborative science
Authors: Casson Nora J. , Whitfield Colin J. , Baulch Helen M. , Mills Sheryl , North Rebecca L. , Venkiteswaran Jason J.
Published: August 2018

Engagement of undergraduate students in research has been demonstrated to correlate with improved academic performance and retention. Research experience confers many benefits on participants, particularly foundational skills necessary for graduate school and careers in scientific disciplines. Undergraduate curricula often do not adequately develop collaborative skills that are becoming increasingly useful in many workplaces and research settings. Here, we describe a pilot program that engages undergraduates in research and incorporates learning objectives designed to develop and enhance collaborative techniques and skills in team science that are not typical outcomes of the undergraduate research experience. We conducted a collaborative science project that engaged faculty advisors and upper year undergraduates at four institutions and conducted a review to assess the program’s efficacy. Students developed a broad suite of competencies related to collaborative science, above and beyond the experience of completing individual projects. This model also affords distinct advantages to faculty advisors, including the capacity of the network to collect and synthesize data from different regions. The model for training students to conduct collaborative science at an early stage of their career is scalable and adaptable to a wide range of fields. We provide recommendations for refining and implementing this model in other contexts.
Theories with maximal acceleration
Authors: Torromé Ricardo Gallego , Nicolini Piero
Published: August 2018

Maximal accelerations are related to the existence of a minimal time for a given physical system. Such a minimal time can be either an intrinsic timescale of the system or connected to a quantum gravity induced ultraviolet cutoff. In this paper, we pedagogically introduce the four major formulations for kinematics accounting for a maximal acceleration. Some phenomenological repercussions are offered as hints for future investigations.
HaLoop Approach for Concept Generation in Formal Concept Analysis
Authors: Chunduri Raghavendra K. , Cherukuri Aswani Kumar
Published: August 2018

This paper describes an efficient algorithm for formal concepts generation in large formal contexts. While many algorithms exist for concept generation, they are not suitable for generating concepts efficiently on larger contexts. We propose an algorithm named as HaLoopUNCG algorithm based on MapReduce framework that uses a lightweight runtime environment called HaLoop. HaLoop, a modified version of Hadoop MapReduce, suits better for iterative algorithms over large datasets. Our approach uses the features of HaLoop efficiently to generate concepts in an iterative manner. First, we describe the theoretical concepts of formal concept analysis and HaLoop. Second, we provide a detailed representation of our work based on Lindig’s fast concept analysis algorithm using HaLoop and MapReduce framework. The experimental evaluations demonstrate that HaLoopUNCG algorithm is performing better than Hadoop version of upper neighbour concept generation (MRUNCG) algorithm, MapReduce implementation of Ganter’s next closure algorithm and other distributed implementations of concept generation algorithms.