Publications by authors named "Lisa Jane Brighton"

22 Publications

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Integrating Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation: the Breathe Plus feasibility trial protocol.

ERJ Open Res 2021 Jan 29;7(1). Epub 2021 Mar 29.

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.

One in five people with COPD also lives with frailty. People living with both COPD and frailty are at increased risk of poorer health and outcomes, and face challenges to completing pulmonary rehabilitation. Integrated approaches that are adapted to the additional context of frailty are required. The aim of the present study is to determine the feasibility of conducting a randomised controlled trial of an integrated Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation. This is a multicentre, mixed-methods, assessor-blinded, randomised, parallel group, controlled feasibility trial ("Breathe Plus"; ISRCTN13051922). We aim to recruit 60 people aged ≥50 with both COPD and frailty referred for pulmonary rehabilitation. Participants will be randomised 1:1 to receive usual pulmonary rehabilitation, or pulmonary rehabilitation with an additional Comprehensive Geriatric Assessment. Outcomes (physical, psycho-social and service use) will be measured at baseline, 90 days and 180 days. We will also collect service and trial process data, and conduct qualitative interviews with a sub-group of participants and staff. We will undertake descriptive analysis of quantitative feasibility outcomes (recruitment, retention, missing data, blinding, contamination, fidelity), and framework analysis of qualitative feasibility outcomes (intervention acceptability and theory, outcome acceptability). Recommendations on progression to a full trial will comprise integration of quantitative and qualitative data, with input from relevant stakeholders. This study has been approved by a UK Research Ethics Committee (ref.: 19/LO/1402). This protocol describes the first study testing the feasibility of integrating a Comprehensive Geriatric Assessment alongside pulmonary rehabilitation, and testing this intervention within a mixed-methods randomised controlled trial.
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http://dx.doi.org/10.1183/23120541.00717-2020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005693PMC
January 2021

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

Palliat Med 2021 Jan 11;35(1):151-160. Epub 2020 Sep 11.

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.

Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness.

Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement.

Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers.

Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK.

Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects.

Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
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http://dx.doi.org/10.1177/0269216320956819DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797607PMC
January 2021

COVID-19 and 'conversations not had' with people with frailty in acute settings.

J Health Serv Res Policy 2020 10;25(4):211-212

Health services researcher, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, UK.

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http://dx.doi.org/10.1177/1355819620943236DOI Listing
October 2020

Supportive and palliative care for people with chronic respiratory disease and frailty.

Curr Opin Support Palliat Care 2020 09;14(3):206-212

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Purpose Of Review: Frailty is a multidimensional syndrome associated with increased risk of poor outcomes. It is estimated that at least one in five people with chronic respiratory disease is also living with frailty. In this review, we consider recent advances in how frailty can be recognized, and its associated impact on people with chronic respiratory disease. We then discuss advances in supportive and palliative care for those with both chronic respiratory disease and frailty.

Recent Findings: The interconnectedness of chronic respiratory disease and frailty is being better understood. An increasing number of factors associated with frailty in respiratory disease have been identified, from increased symptom burden (e.g. breathlessness, fatigue) to increased exacerbations and higher mortality. These contribute to accumulating multidimensional losses in reserve, and unpredictable health. Recent advances in respiratory research, while not always with people with frailty, may inform supportive and palliative care to address frailty in chronic respiratory disease. These include rehabilitation interventions to strengthen reserves, advance care planning interventions to help manage unpredictable trajectories, and integrated models of care (e.g. incorporating respiratory, geriatric, and palliative care) to address multidimensional needs.

Summary: Recent evidence supporting the role of rehabilitation, advance care planning, and early palliative care, may be of benefit to people living with chronic respiratory disease and frailty. Models showing integration across multiple specialities and professionals may have the most potential to meet the multidimensional needs of this group. Future research should develop and test models of care that address frailty and/or explore the role of frailty in triggering integrated multidisciplinary input.
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http://dx.doi.org/10.1097/SPC.0000000000000523DOI Listing
September 2020

Experiences of Pulmonary Rehabilitation in People Living with Chronic Obstructive Pulmonary Disease and Frailty. A Qualitative Interview Study.

Ann Am Thorac Soc 2020 10;17(10):1213-1221

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, and.

People living with both chronic obstructive pulmonary disease (COPD) and frailty have high potential to benefit from pulmonary rehabilitation but face challenges completing programs. However, research to understand ways to optimize participation in this group is lacking. To explore the experiences, needs, and preferences of people with COPD and frailty referred for outpatient pulmonary rehabilitation. Semistructured interviews with people with COPD and physical frailty, purposively sampled by age, living status, level of frailty, and completion of pulmonary rehabilitation. Thematic analysis with a critical realist perspective was used, involving relevant stakeholders with clinical, academic, and lived experience for interpretive rigor. Nineteen people with COPD and frailty were interviewed, with a median age of 78 years (range, 58-88). Nine did not complete their pulmonary rehabilitation program. Four themes were identified: striving to adapt to multidimensional loss, tensions of balancing support with independence, pulmonary rehabilitation as a challenge worth facing, and overcoming unpredictable disruptions to participation. Participants described constantly adapting to their changing health and resulting multidimensional losses (e.g., functional abilities, relationships, confidence). This involved traversing between independence and seeking support, set against a mismatch between their needs and what support is available. People with COPD and frailty can be highly motivated to participate in pulmonary rehabilitation, despite the physical and mental demands it entails, and report a range of benefits. Yet in the context of changeable health, they must often overcome multiple unpredictable disruptions to completing rehabilitation programs. Participant determination and flexibility of services can facilitate ongoing attendance, but for some, these unpredictable disruptions erode their motivation to attend. People with COPD and frailty experience accumulating, multidimensional loss. This group are motivated to complete pulmonary rehabilitation but often require additional support and flexibility owing to fluctuating and unpredictable health. Person-centered approaches should be considered to minimize disruptive health events and support pulmonary rehabilitation participation and completion. Service adaptations could allow more flexibility to meet the changing needs of this group and enable communication around how pulmonary rehabilitation might align with their priorities.
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http://dx.doi.org/10.1513/AnnalsATS.201910-800OCDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7640624PMC
October 2020

Improving Exercise-Based Interventions for People Living with Both COPD and Frailty: A Realist Review.

Int J Chron Obstruct Pulmon Dis 2020 20;15:841-855. Epub 2020 Apr 20.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background: People living with both chronic obstructive pulmonary disease (COPD) and frailty have high potential to benefit from exercise-based interventions, including pulmonary rehabilitation, but face challenges completing them. Research to understand ways to optimise exercise-based interventions in this group is lacking. We aimed to understand how exercise-based interventions might improve outcomes for people living with both COPD and frailty.

Methods: This realist review used database searches and handsearching until October 2019 to identify articles of relevance to exercise-based interventions for people living with COPD and frailty. A scoping search explored what is important about the context of living with COPD and frailty, and what mechanisms might be important in how exercise-based interventions result in their intended outcomes. Through discussion with stakeholders, the review scope was refined to areas deemed pertinent to improving care. We retained articles within this refined scope and identified additional articles through targeted handsearching. Data were extracted and synthesised in a narrative, prioritised by relevance and rigour.

Results: Of 344 records identified, 35 were included in the review and 20 informed the final synthesis. Important contextual factors to consider included: negative beliefs about themselves and exercise-based interventions; heterogenous presentation and comorbidities; decreased reserves and multidimensional loss; and experiencing unpredictable health and disruptions. In these circumstances, mechanisms that may help maximise outcomes from exercise-based interventions included: trusting relationships; creating a shared understanding of needs; having the capacity to address multidimensional concerns; being able to individualise approaches to needs and priorities; and flexible approaches to intervention delivery. Mixed-methods research and explicit theorising were often absent.

Conclusion: Building trusting relationships, understanding priorities, using individualised and multidisciplinary approaches, and flexible service delivery can improve the value of exercise-based interventions for people living with both COPD and frailty. Development and evaluation of new and adapted interventions should consider these principles.
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http://dx.doi.org/10.2147/COPD.S238680DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7182688PMC
April 2020

Interdisciplinary management of chronic breathlessness.

Curr Opin Support Palliat Care 2019 09;13(3):193-199

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London.

Purpose Of Review: Breathlessness is a common yet complex symptom of advanced disease. Effective management will most likely draw upon the skills of multiple disciplines and professions. This review considers recent advances in the management of chronic breathlessness with regards to interdisciplinary working.

Recent Findings: There are growing data on interventions for chronic breathlessness that incorporate psychosocial mechanisms of action, for example, active mind-body treatments; and holistic breathlessness services that exemplify interprofessional working with professionals sharing skills and practice for user benefit. Patients value the personalized, empathetic and understanding tenor of care provided by breathlessness services, above the profession that delivers any intervention. Workforce training, decision support tools and self-management interventions may provide methods to scale-up these services and improve reach, though testing around the clinical effects of these approaches is required.

Summary: Chronic breathlessness provides an ideal context within which to realize the benefits of interdisciplinary working. Holistic breathlessness services can commit to a comprehensive approach to initial assessment, as they can subsequently deliver a wide range of interventions suited to needs as they are identified.
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http://dx.doi.org/10.1097/SPC.0000000000000435DOI Listing
September 2019

Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.

Milbank Q 2019 03;97(1):113-175

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation.

Policy Points We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.

Context: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.

Methods: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.

Results: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.

Conclusions: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
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http://dx.doi.org/10.1111/1468-0009.12373DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422603PMC
March 2019

Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers.

Patient Educ Couns 2019 03 17;102(3):494-502. Epub 2018 Oct 17.

King's College London, Cicely Saunders Institute of Palliative Care, Policy, and Rehabilitation, London, UK; Sussex Community NHS Foundation Trust, Brighton General Hospital, Brighton, UK. Electronic address:

Objective: To explore generalist palliative care providers' experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.

Methods: Semi-structured interviews conducted with generalist staff (those providing 'primary' or 'general' palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication.

Results: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion 'display rules'; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing 'human' and 'professional' expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training.

Conclusion: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being.

Practice Implications: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.
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http://dx.doi.org/10.1016/j.pec.2018.10.013DOI Listing
March 2019

Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation.

Chron Respir Dis 2019 Jan-Dec;16:1479973118816448

1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.
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http://dx.doi.org/10.1177/1479973118816448DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313262PMC
August 2020

Predicting outcomes following holistic breathlessness services: A pooled analysis of individual patient data.

Palliat Med 2019 04 15;33(4):462-466. Epub 2019 Feb 15.

1 Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.

Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.

Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.

Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.

Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).

Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43-0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35-2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.

Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.
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http://dx.doi.org/10.1177/0269216319830299DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6439935PMC
April 2019

Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis.

Thorax 2019 03 29;74(3):270-281. Epub 2018 Nov 29.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background: Breathlessness is a common, distressing symptom in people with advanced disease and a marker of deterioration. Holistic services that draw on integrated palliative care have been developed for this group. This systematic review aimed to examine the outcomes, experiences and therapeutic components of these services.

Methods: Systematic review searching nine databases to June 2017 for experimental, qualitative and observational studies. Eligibility and quality were independently assessed by two authors. Data on service models, health and cost outcomes were synthesised, using meta-analyses as indicated. Data on recipient experiences were synthesised thematically and integrated at the level of interpretation and reporting.

Results: From 3239 records identified, 37 articles were included representing 18 different services. Most services enrolled people with thoracic cancer, involved palliative care staff and comprised 4-6 contacts over 4-6 weeks. Commonly used interventions included breathing techniques, psychological support and relaxation techniques. Meta-analyses demonstrated reductions in Numeric Rating Scale distress due to breathlessness (n=324; mean difference (MD) -2.30, 95% CI -4.43 to -0.16, p=0.03) and Hospital Anxiety and Depression Scale (HADS) depression scores (n=408, MD -1.67, 95% CI -2.52 to -0.81, p<0.001) favouring the intervention. Statistically non-significant effects were observed for Chronic Respiratory Questionnaire (CRQ) mastery (n=259, MD 0.23, 95% CI -0.10 to 0.55, p=0.17) and HADS anxiety scores (n=552, MD -1.59, 95% CI -3.22 to 0.05, p=0.06). Patients and carers valued tailored education, self-management interventions and expert staff providing person-centred, dignified care. However, there was no observable effect on health status or quality of life, and mixed evidence around physical function.

Conclusion: Holistic services for chronic breathlessness can reduce distress in patients with advanced disease and may improve psychological outcomes of anxiety and depression. Therapeutic components of these services should be shared and integrated into clinical practice.

Registration Number: CRD42017057508.
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http://dx.doi.org/10.1136/thoraxjnl-2018-211589DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6467249PMC
March 2019

Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research.

Res Involv Engagem 2018 1;4:14. Epub 2018 May 1.

1Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, Bessemer Road, London, SE5 9PJ UK.

Plain English Summary: Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods.

Abstract:

Background: Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk).

Methods: We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean's model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases.

Results: Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed.

Conclusions: When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.
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http://dx.doi.org/10.1186/s40900-018-0097-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5928583PMC
May 2018

End-of-life education in the acute setting.

Future Healthc J 2018 Feb;5(1):21-24

Hospice UK, London, UK and visiting fellow, University of Southampton, Southampton, UK.

End-of-life care (EoLC) should be seen as everyone's business in acute hospital settings; a focus on targeted education and training in EoLC has the potential to improve the delivery of care for, and experiences of, patients and their families. We discuss the challenges associated with providing EoLC education in acute settings, and make recommendations around what should be delivered, to whom, when and how, including the measurement of impact of educational interventions. To deliver excellent education, content and delivery needs to be multifaceted, tailored to the needs of staff, and, importantly, led by the voices of patients and their families. We call on senior trust executives to resource and support the development and delivery of an EoLC education strategy to improve competencies of all staff, fostering an organisational culture of person-centred EoLC throughout any acute setting.
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http://dx.doi.org/10.7861/futurehosp.5-1-21DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6510044PMC
February 2018

'Difficult Conversations': evaluation of multiprofessional training.

BMJ Support Palliat Care 2018 Mar 8;8(1):45-48. Epub 2017 Nov 8.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Objectives: Evidence-based communication skills training for health and social care professionals is essential to improve the care of seriously ill patients and their families. We aimed to evaluate the self-reported impact of 'Difficult Conversations', a multidisciplinary half-day interactive workshop, and gain feedback to inform future development and evaluation.

Methods: Service evaluation using questionnaire data collected before and immediately after workshops from February 2015 to August 2016 regarding participant self-assessed confidence, knowledge and skills. Qualitative free-text comments provided feedback about the workshop and were subjected to content analysis.

Results: Of 886 workshop participants, 655 completed baseline questionnaires and 714 postworkshop questionnaires; 550 were matched pairs. Participants were qualified or trainee general practitioners (34%), community nurses and care coordinators (32%), social care professionals (7%), care home staff (6%), advanced practice/specialist nurses (5%), care workers (5%) and allied health professionals (3%). All groups demonstrated significant increases in mean self-assessed confidence (2.46, 95% CI 2.41 to 2.51; to 3.20, 95% CI 3.17 to 3.24; P<0.001), knowledge (2.22, 95% CI 2.17 to 2.27; to 3.18, 95% CI 3.14 to 3.22; P<0.001) and skills (2.37, 95% CI 2.32 to 2.42; to 3.09, 95% CI 3.05 to 3.12; P<0.001). Qualitative findings showed participants valued role play, the communication framework acronym and opportunities for discussion. They commended workshop facilitators' skills, the safe atmosphere and interprofessional learning. Suggested improvements included more prepared role play and greater coverage of the taught topics.

Conclusions: 'Difficult Conversations' workshops were associated with improvements in participants' self-assessed confidence, knowledge, and skills. Our findings identify workshop characteristics that are acceptable to multidisciplinary trainees. Further testing is warranted to determine effectiveness and accurately identify workshop components leading to change.
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http://dx.doi.org/10.1136/bmjspcare-2017-001447DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867425PMC
March 2018

Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.

Palliat Med 2018 01 12;32(1):216-230. Epub 2017 Oct 12.

13 Patient Representative, UK.

Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.

Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.

Design: Focus group study.

Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.

Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs.

Conclusion: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.
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http://dx.doi.org/10.1177/0269216317734954DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5758929PMC
January 2018

A Systematic Review of End-of-Life Care Communication Skills Training for Generalist Palliative Care Providers: Research Quality and Reporting Guidance.

J Pain Symptom Manage 2017 09 4;54(3):417-425. Epub 2017 Aug 4.

Department of Palliative Care, Policy, and Rehabilitation, King's College London, Cicely Saunders Institute, London, UK; Population Health Sciences, University of Bristol, Bristol, United Kingdom.

Context: End-of-life care (EoLC) communication skills training for generalist palliative care providers is recommended in policy guidance globally. Although many training programs now exist, there has been no comprehensive evidence synthesis to inform future training delivery and evaluation.

Objectives: To identify and appraise how EoLC communication skills training interventions for generalist palliative care providers are developed, delivered, evaluated, and reported.

Methods: Systematic review. Ten electronic databases (inception to December 2015) and five relevant journals (January 2004 to December 2015) were searched. Studies testing the effectiveness of EoLC communication skills training for generalists were included. Two independent authors assessed study quality. Descriptive statistics and narrative synthesis are used to summarize the findings.

Results: From 11,441 unique records, 170 reports were identified (157 published, 13 unpublished), representing 160 evaluation studies of 153 training interventions. Of published papers, eight were of low quality, 108 medium, and 41 high. Few interventions were developed with service user involvement (n = 7), and most were taught using a mixture of didactics (n = 123), reflection and discussion (n = 105), and role play (n = 86). Evaluation designs were weak: <30% were controlled, <15% randomized participants. Over half (n = 85) relied on staff self-reported outcomes to assess effectiveness, and 49% did not cite psychometrically validated measures. Key information (e.g., training duration, participant flow) was poorly reported.

Conclusions: Despite a proliferation of EoLC communication skills training interventions in the literature, evidence is limited by poor reporting and weak methodology. Based on our findings, we present a CONSORT statement supplement to improve future reporting and encourage more rigorous testing.
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http://dx.doi.org/10.1016/j.jpainsymman.2017.04.008DOI Listing
September 2017

Primary care physicians' educational needs and learning preferences in end of life care: A focus group study in the UK.

BMC Palliat Care 2017 Mar 9;16(1):17. Epub 2017 Mar 9.

King's College London, Cicely Saunders Institute, Bessemer Road, Denmark Hill, London, SE59PJ, UK.

Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation.

Methods: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour.

Results: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly.

Conclusions: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training.
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http://dx.doi.org/10.1186/s12904-017-0191-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5343378PMC
March 2017

'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

Palliat Med 2017 Oct 6;31(9):842-852. Epub 2017 Jan 6.

1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy, and Rehabilitation, London, UK.

Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care.

Aims: To explore hospital volunteers' end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods.

Design: Qualitative focus groups.

Setting/participants: Volunteers from a large teaching hospital were purposively sampled.

Results: Five focus groups were conducted with 25 hospital volunteers (aged 19-80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to 'refresh' training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each.

Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.
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http://dx.doi.org/10.1177/0269216316679929DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5613806PMC
October 2017

Communication in palliative care: talking about the end of life, before the end of life.

Postgrad Med J 2016 Aug 6;92(1090):466-70. Epub 2016 May 6.

King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy, & Rehabilitation, London, UK.

Increasing evidence demonstrates the benefits of early end-of-life care discussions with patients with life-threatening illness and their families. However, these conversations often do not occur. This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations. The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of palliative care in this task is key. With careful preparation, fears of undertaking these discussions should not be a barrier to initiating them.
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http://dx.doi.org/10.1136/postgradmedj-2015-133368DOI Listing
August 2016