Katherine Knighting

Prioritisation of future research topics for children’s hospice care by its key stakeholders: a Delphi study.

The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritise future research priorities for children’s hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children’s hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritised research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children’s hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children’s hospice and palliative care research and optimise the delivery of children’s hospice services that are underpinned by valid and robust research.

Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care

The main objective of this study is to generate a list of priority topics for children’s hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children’s hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children’s palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.

Development of the Carers’ Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study

BackgroundThere is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff.MethodsA mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers’ Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011–2014).ResultsA number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer’s own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel.ConclusionsThe CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

Improving end of life care in care homes; an evaluation of the six steps to success programme

BackgroundThere are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives. One educational initiative is The Six Steps to Success programme.MethodIn order to evaluate the implementation of Six Steps with the first cohort of care homes to complete the end-of-life programme in the North West of England., a pragmatic evaluation methodology was implemented in 2012–2013 using multiple methods of qualitative data collection; online questionnaire with facilitators (n = 16), interviews with facilitators (n = 9) and case studies of care homes that had completed the programme (n = 6). The evaluation explored the implementation approach and experiences of the programme facilitators and obtain a detailed account of the impact of Six Steps on individual care homes. Based upon the National Health Service (NHS) End of Life Care (EoLC) Programme, The Route to Success in EoLC – Achieving Quality in Care Homes.ResultsThe programme was flexibly designed so that it could be individually tailored to the geographical location and the individual cohort requirements. Facilitators provided comprehensive and flexible support to care homes.Challenges to programme success were noted as; lack of time allocated to champions to devote to additional programme work, inappropriate staff selected as ‘Champions’ and staff sickness/high staff turnover presented challenges to embedding programme values.Benefits to completing the programme were noted as; improvement in Advance Care Planning, improved staff communication/confidence when dealing with multi-disciplinary teams, improved end-of-life processes/documentation and increased staff confidence through acquisition of new knowledge and new processes.ConclusionsThe findings suggested an overall positive impact from the programme. This flexibly designed programme continues to be dynamic, iteratively amended and improved which may affect the direct transferability of the results to future cohorts.

Research priorities for respiratory nursing: a UK-wide Delphi study

Respiratory nurses make a significant contribution to the delivery of respiratory healthcare, but there is a dearth of nurse-led, practice-focused, published research. Using a modified three-round Delphi, this study sought to identify research priorities for respiratory nursing to inform a national research strategy. Study information and the survey link were sent electronically to members of UK professional respiratory organisations. Round 1 had 78 items across 16 topics, informed by a systematic literature review. Respondents suggested additional items which were content analysed to inform Round 2. Respondents rated all items and ranked the topics in all rounds. To ensure rigour, rounds had an explicit focus with pre-determined criteria for consensus (70%). In total, 363 responses were received across Rounds 1, 2 and 3 (n=183, 95 and 85, respectively). The top five research priorities were: 1) “Patient understanding of asthma control”; 2) “The clinical and cost-effectiveness of respiratory nurse interventions”; 3) “The impact of nurse-led clinics on patient care”; 4) “Inhaler technique”; and 5) two topics jointly scored: “Prevention of exacerbations” and “Symptom management”. With potential international significance, this is the first UK study to identify research priorities for respiratory nursing, providing direction for those planning or undertaking research. UK-wide Delphi survey identifies nursing research priorities to enhance respiratory care for patients and carers http://ow.ly/ekGt30iXYXt

Short break and emergency respite care: what options for young people with life-limiting conditions?

BACKGROUND Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care. OBJECTIVE To explore alternative short break and emergency respite care options to childrens hospice care. METHODS A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only. RESULTS There were few, or no, appropriate short break and emergency respite care alternatives when childrens hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for childrens hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the childrens hospice eligibility criteria. CONCLUSION Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of childrens hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from childrens hospices.

Bereavement support needs of family carers of people with Motor Nerone Disease (MND)

ISSN 2167-8421 print/ISSN 2167-9223 online

No other choice” when children’s hospice care is unavailable: An Emergency Care Impact Assessment for Claire House Children’s Hospice 2016 2016-03-06 0 0 0 2016-06-24 11860952 26842 supernova 1993j erste modelle Supernova 1993J : erste Modelle. 1993 1993-01-01 0 0 0 2016-06-24 948883885 25511 public participation in the environmental decision making Public participation in the environmental decision-making 2006 2006-03-01 Hart 0 0 0 2016-06-24 2396457501 25931 Journal treatment and prognosis in vertebral fractures in children and adolescents Treatment and prognosis in vertebral fractures in children and adolescents 1976 1976-08-01 Chirurg 61376629 47 8 458 0 3 3 Chirurg 2016-06-24 11860981 26227 lutte contre la pollution de l eau inventaire des traitements Lutte contre la pollution de l’eau - Inventaire des traitements 1999 1999-07-10 Editions T.I. | Techniques de l'Ingénieur 0 0 0 Ref : TIP860WEB - Technologies de l'eau"

1Ewing, G & Grande G on behalf of the NAHH (2012). Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine; 27(3):244-256. 2Ewing G, Brundle C, Payne S and Grande G (2013). The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home; A validation study. Journal for Pain and Symptom Management; 44(3):395-405. 3Ewing G, Austin L, Diffin J, Grande G. (2015). Developing a person-centred approach to carer assessment and support. British Journal of Community Nursing; 20(12):580-584.Background: Previous systematic reviews of evidence of the (cost) effectiveness of palliative care day services (PCDS) have been limited due to a lack of primary research and self-imposed limitations on included studies. Furthermore, the last reviews were published in 2011. As the sustained growth in PCDS was likely to have an associated research output, another review was timely to update the evidence base.Aims & Methods To evaluate the effectiveness of clinical, psychological, social and spiritual interventions offered to adults attending PCDS, we adopted a fully systematic approach, involving independent review within a research team. We included primary and review level evidence; published and grey literature; papers in languages other than English, and studies that focus on adults with both malignant and non-malignant disease. We searched a comprehensive range of electronic databases, as well as hand-search other sources and contacted relevant authors and content experts. Included studies were quality-appraised and the certainty of evidence assessed. We used expert advice to synthesise quantitative data; the framework approach to synthesise qualitative data; a narrative synthesis for cost-effectiveness data, and; an overarching narrative synthesis to bring together the quantitative and qualitative evidence in the form of a logic model.Results: Our logic model identifies relevant components of the intervention and context in which it is implemented, and links these to specific impacts or outcomes through the identification of moderators and/or short-term outcomes. This process enables the development of theoretical propositions concerning which factors, and mechanisms of interaction, are likely to lead to which outcomes.Conclusions The review represents an innovative integration of quantitative and qualitative data that provides a rigorous, systematically derived evidence base concerning the effectiveness of interventions currently offered within PCDS, including evidence concerning the circumstances in which effectiveness is (not) achieved.

The engagement of young people in their own advance care planning process: A systematic narrative synthesis:

Background: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their own advance care plan is important to shape future practice and facilitate young people’s wishes. Aim: To identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process. Design: A systematic narrative synthesis according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using a quality assessment framework previously used in similar research. Data sources: CINAHL Complete, MEDLINE, PubMed and PsycINFO were searched for articles published between 1 January 1990 and 31 October 2017. Grey literature was searched using Google Scholar and Open Grey. Results: Most studies related to the engagement of young people were conducted in hospitals or other institutions. Research reported not only the aim to include young people in their own advance care planning but also potential barriers to engagement. Barriers include poor communication, conflict within relationships of those in the planning process and patchy education and training for healthcare professionals. Some existing studies are characterised by a lack of rigorous, high-quality research, limiting their impact. Conclusion: Irrespective of setting, engagement of young people would benefit their advance care planning. More detailed, high-quality research is needed to understand the extent of the barriers to young people’s engagement in their own advance care plan and how to facilitate their involvement.

M12 A uk survey on the experiences and views of respiratory nurses (rns) on their role in delivering cognitive behavioural therapy (cbt) for patients with chronic obstructive pulmonary disease (copd)

Background COPD is a progressive, irreversible condition. Anxiety and depression are two common, yet least treated co-morbidities, in COPD. RNs frequently encounter patients with distressing symptoms hence are ideally placed to address these. CBT delivered by RNs reduces symptoms of anxiety, depression, improves quality of life and is cost -effective.1 A UK-wide Delphi survey conducted with RNs in 2016–2017 identified that the topic of psychological interventions, including CBT, was ranked in the top five areas of care for future research.2 Aim To explore views of RNs on the importance of screening/providing integrated psychological treatment into routine care and the feasibility of undertaking education and training in CBT. Method A UK-wide electronic survey was conducted to gather respiratory nurses views on the importance of addressing psychological well-being, current practice, feasibility of education and training in CBT from a personal and organisational perspective. The Results were collated and analysed. Results Ninety-six responses were received. The majority (58%) of respondents had ≥10 years’ experience in respiratory care and represented a diverse spread of regions across the UK. The Results are presented in Table 1. Conclusions There is a clear recognition from RNs of the importance of screening respiratory patients for symptoms of anxiety/depression and undertake further education to deliver psychological treatment such as CBT. RNs with skills to address both physical and psychological symptoms of COPD may be more beneficial and acceptable to patients. References . Heslop-Marshall K, Stenton C, Newton J, Carrick-Sen D, Baker C, Burns G, De Soyza A. A RCT of CBT delivered by respiratory nurses to reduce anxiety in COPD. ERJ2016;48:OA289. doi:10.1183/13993003.congress-2016.OA289 . Kelly C, Knighting K, Kirkcaldy A, Pilkington M. A delphi study to identify research priorities for respiratory nursing. Report for the Association of Respiratory Nurse Specialists (ARNS). Edge Hill University2017. Abstract M12 Table 1 Survey results 92% of RNs stated they should screen for symptoms of anxiety and depression. 78% of RNs stated they should help manage symptoms of anxiety and depression. 70% of RNs surveyed currently screen for symptoms of anxiety and depression. 51% of those who screen refer to psychological services. 91% of RNs felt that they should be trained to identify psychological difficulties. 77% of RNs agreed they should be trained in CBT. 63% of RNs felt that support from management would be given to access training 65% of RNs felt support to deliver CBT would be provided. 55% of RNs felt they would have capacity to deliver this service and 23% were unsure.