Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.

Developing a care home data platform in Scotland: a mixed methods study of data routinely collected in care homes.

BACKGROUND: care homes collect extensive data about their residents, and their care, in multiple ways, for multiple purposes. We aimed to (i) identify what data are routinely collected and (ii) collate care home managers' views and experiences of collecting, using and sharing data. METHODS: we examined data collected in six care homes across Lothian, Scotland. We extracted the meta-data, cross-referenced definitions and assessed the degree of harmonisation between care homes and with data sets currently in use in Scotland and internationally. We interviewed care home managers about their views and experiences of collecting, using and sharing data. RESULTS: we identified 15 core data items used routinely, with significant heterogeneity in tools and assessments used, and very limited harmonisation. Two overarching themes were identified of importance to the development of a care home data platform: (i) the rationale for collecting data, including to (a) support person-centred care, (b) share information, (c) manage workforce and budget and (d) provide evidence to statutory bodies and (ii) the reality of collecting data, including data accuracy, and understanding data in context. DISCUSSION: considerable information is collected by care home staff, in varied formats, with heterogeneity of scope and definition, for range of reasons. We discuss the issues that should be considered to ensure that individual resident-level form the strong foundations for any data platform for care homes, which must also include, robust infrastructure and clear interoperability, with appropriate governance. It must be co-produced by academics, policy makers and sector representatives, with residents, their families and care staff.

Pain assessment and management in care homes: understanding the context through a scoping review.

BACKGROUND: Internationally, 2-5% of people live in residential or nursing homes, many with multi-morbidities, including severe cognitive impairment. Pain is frequently considered an expected part of old age and morbidity, and may often be either under-reported by care home residents, or go unrecognized by care staff. We conducted a systematic scoping review to explore the complexity of pain recognition, assessment and treatment for residents living in care homes, and to understand the contexts that might influence its management. METHODS: Scoping review using the methodological framework of Levac and colleagues. Articles were included if they examined pain assessment and/or management, for care or nursing home residents. We searched Medline, CINAHL, ASSIA, PsycINFO, EMBASE, Cochrane Library, and Google Scholar; reference lists were also screened, and website searches carried out of key organisations. Conversations with 16 local care home managers were included to gain an understanding of their perspective. RESULTS: Inclusion criteria were met by 109 studies. Three overarching themes were identified: Staff factors and beliefs - in relation to pain assessment and management (e.g. experience, qualifications) and beliefs and perceptions relating to pain. Pain assessment - including use of pain assessment tools and assessment/management for residents with cognitive impairment. Interventions - including efficacy/effects (pharmaceutical/non pharmaceutical), and pain training interventions and their outcomes. Overall findings from the review indicated a lack of training and staff confidence in relation to pain assessment and management. This was particularly the case for residents with dementia. CONCLUSIONS: Further training and detailed guidelines for the appropriate assessment and treatment of pain are required by care home staff. Professionals external to the care home environment need to be aware of the issues facing care homes staff and residents in order to target their input in the most appropriate way.

Care home residents who die in hospital: exploring factors, processes and experiences.

BACKGROUND: Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. METHODS: This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. RESULTS: During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%.Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. CONCLUSIONS: Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes.

A framework for cross-cultural development and implementation of complex interventions to improve palliative care in nursing homes: the PACE steps to success programme.

BACKGROUND: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar. METHODS: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support. RESULTS: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention. CONCLUSIONS: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

BACKGROUND: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. METHODS: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). SECONDARY OUTCOMES: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. DISCUSSION: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. TRIAL REGISTRATION: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.

Fixing the broken image of care homes, could a 'care home innovation centre' be the answer?

The UK has many excellent care homes that provide high-quality care for their residents; however, across the care home sector, there is a significant need for improvement. Even though the majority of care homes receive a rating of 'good' from regulators, still significant numbers are identified as requiring 'improvement' or are 'inadequate'. Such findings resonate with the public perceptions of long-term care as a negative choice, to be avoided wherever possible-as well as impacting on the career choices of health and social care students. Projections of current demographics highlight that, within 10 years, the part of our population that will be growing the fastest will be those people older than 80 years old with the suggestion that spending on long-term care provision needs to rise from 0.6% of our Gross Domestic Product in 2002 to 0.96% by 2031. Teaching/research-based care homes have been developed in the USA, Canada, Norway, the Netherlands and Australia in response to scandals about care, and the shortage of trained geriatric healthcare staff. There is increasing evidence that such facilities help to reduce inappropriate hospital admissions, increase staff competency and bring increased enthusiasm about working in care homes and improve the quality of care. Is this something that the UK should think of developing? This commentary details the core goals of a Care Home Innovation Centre for training and research as a radical vision to change the culture and image of care homes, and help address this huge public health issue we face.

A practice development initiative supporting care home staff deliver high quality end-of-life care.

BACKGROUND: The global population is changing with an increasing percentage of the oldest old, many of whom in the UK are looked after in care homes. Care homes now provide care for a fifth of the UK population who die each year. However, most nursing care homes are privately owned and not part of the NHS, which exposes staff to a lack of skills/knowledge in relation to end-of-life care. METHODS: To implement the Gold Standards Framework in Care Homes Programme and audit outcomes within nursing care homes across five Clinical Commissioning Groups over a 7-year period using a research-based model of facilitation. RESULTS: The percentage of residents dying in nursing care homes increased from 57% to 79%, with improvement in other outcomes. CONCLUSIONS: A 'high' facilitation model, including a sustainability initiative and ongoing audit, contributed to significant improvements when implementing the Programme. Reciprocity and trustworthiness underpin the success of this initiative.

The Namaste Care programme can reduce behavioural symptoms in care home residents with advanced dementia.

OBJECTIVE: The objective of the study was to evaluate the effects of the Namaste Care programme on the behavioural symptoms of residents with advanced dementia in care homes and their pain management. METHODS: Six dementia care homes collaborated in an action research study-one withdrew. Inclusion criteria were a dementia diagnosis and a Bedford Alzheimer's Nursing Severity Scale score of >16. Primary research measures were the Neuropsychiatric Inventory-Nursing Homes (NPI-NH) and Doloplus-2 behavioural pain assessment scale for the elderly. Measures were recorded at baseline and at three 1-2 monthly intervals after Namaste Care started. RESULTS: Management disruption occurred across all care homes. The severity of behavioural symptoms, pain and occupational disruptiveness (NPI-NH) decreased in four care homes. Increased severity of behavioural symptoms in one care home was probably related to poor pain management, reflected in increased pain scores, and disrupted leadership. Comparison of NPI-NH scores showed that severity of behavioural symptoms and occupational disruptiveness were significantly lower after initiation of Namaste Care (n = 34, p < 0.001) and after the second interval (n = 32, p < 0.001 and p = 0.003). However, comparison of these measures in the second and third intervals revealed that both were slightly increased in the third interval (n = 24, p < 0.001 and p = 0.001). CONCLUSIONS: Where there are strong leadership, adequate staffing, and good nursing and medical care, the Namaste Care programme can improve quality of life for people with advanced dementia in care homes by decreasing behavioural symptoms. Namaste is not a substitute for good clinical care.

The provision of care for residents dying in U.K. nursing care homes.

OBJECTIVES: to identify the care currently provided to residents dying in U.K. nursing care homes. METHOD: study participants were residents who had died within 38 nursing care homes in southeast England over a 3-year period. The nursing care homes had been recruited to take part in a cluster randomised controlled trial looking at different models of facilitation while implementing the Gold Standards Framework in Care Homes (GSFCH) programme. Two researchers examined the notes and daily records of all residents who died in each of these homes between the 1 June 2008 and the 31 May 2011. RESULTS: a total of 2,444 residents died during the 3-year period. Fifty-six percent of these residents died within a year of admission. The support from specialist healthcare services to residents during their last 6 months of life was variable. CONCLUSIONS: nursing care homes have established links with some external healthcare providers. These links included the GP, palliative care nurses and physiotherapy. As dependency of resident increase with 56% residents dying within a year of admission these links need to be expanded. The provision of health care that meets the needs of future nursing care home residents needs to be 'proactively' obtained rather than left to chance.

Current prevalence of dementia, depression and behavioural problems in the older adult care home sector: the South East London Care Home Survey.

BACKGROUND: a large and increasing number of older people in the UK are living in care homes. Dementia is a frequent reason underlying admission and determining care needs, but prevalence data are becoming increasingly outdated and reliant on brief screening instruments. OBJECTIVE: to describe the prevalence and severity of dementia, depression, behavioural problems and relevant medication use in a representative sample of residential and nursing care home residents. DESIGN/SETTING: a survey conducted in 15 randomly selected South East London care homes. Consensus clinical dementia diagnoses were made from multi-source information, and the Clinical Dementia Rating (CDR) Scale applied. Depression was ascertained using the Cornell Depression in Dementia Scale and psychological/behavioural problems using the Neuropsychiatric Inventory (NPI). PARTICIPANTS: three hundred and one residents with a mean (SD) age of 83.5 (9.8) and 65.8% female were included. RESULTS: dementia (CDR 1-3) prevalence was 75.1% overall, 55.8% in residential homes, 91.0% in residential elderly mentally infirm care and 77.0% in nursing homes. Depression prevalences were 26.5, 22.0 and 29.6%, respectively, and mean (95% CI) NPI severity scores 3.99 (3.47-4.50), 6.34 (5.29-7.39) and 6.10 (5.50-6.70) with 87.3% of the sample exhibiting at least one NPI symptom. Antidepressants were prescribed in 25.6, 25.0 and 41.3%, respectively, and antipsychotics in 7.0, 34.1 and 19.1%. CONCLUSION: dementia is substantially more common in care homes than recorded diagnoses would suggest, but studies using brief screening instruments may overestimate prevalence. High prevalences of depressive and/or behavioural symptoms and psychotropic use suggest significant unmet need.

The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial.

BACKGROUND: The provision of quality end-of-life care is increasingly on the national agenda in many countries. In the United Kingdom, the Gold Standards Framework for Care Homes programme has been promoted as a national framework for improving end-of-life care. While its implementation is recommended, there are no national guidelines for facilitators to follow to undertake this role. AIM: It was hypothesised that action learning alongside high facilitation when implementing the Gold Standards Framework for Care Homes programme will result in a reduced proportion of hospital deaths for residents and improvement in the care home staff ability to facilitate good end-of-life care. DESIGN: A cluster randomised controlled trial where 24 nursing homes received high facilitation to enable them to implement the Gold Standards Framework for Care Homes programme. The managers of 12 nursing homes additionally took part in action learning sets. A third group (14 nursing homes) received the 'standard' Gold Standards Framework for Care Homes facilitation available in their locality. SETTING/PARTICIPANTS: In total, 38 nursing homes providing care for frail older people, their deceased residents and their nurse managers. RESULTS: A greater proportion of residents died in those nursing homes receiving high facilitation and action learning but not significantly so. There was a significant association between the level of facilitation and nursing homes completing the Gold Standards Framework for Care Homes programme through to accreditation. Year-on-year change occurred across all outcome measures. CONCLUSION: There is a danger that without national guidelines, facilitation of the Gold Standards Framework for Care Homes programme will vary and consequently so will its implementation. The nurse manager of a care home must be actively engaged when implementing the Gold Standards Framework for Care Homes programme.

Practicalities of promoting practice-based learning in end of life care for care home staff: Lessons from "online" supportive conversations and reflection sessions.

INTRODUCTION: Deaths in care homes and "at home" are anticipated to account for a third of UK deaths by 2040. Currently, palliative and end of life care are not part of statutory training in care homes. Reflective practice is a tool that can facilitate practice-based learning and support. Following a feasibly study to test "online" supportive conversations and reflection sessions (OSCaRS) to support care home staff in relation to death/dying during the first months of the COVID pandemic, a one-year practice development follow-up project was undertaken with the aim to create a team of NHS/specialist palliative care (SPC)-based facilitators to lead and support OSCaRS provision in up to 50 care homes in one region in Scotland-the focus of this paper. METHODS: Forty care home managers attended an on-line session explaining the project, with a similar session held for 19 NHS/SPC-based nurses external to care homes. Those interested in facilitating OSCaRS then attended three education sessions. DATA COLLECTED: records of all activities; reflective notes on OSCaRS organised/delivered; a summary of each OSCaRS reflection/learning points; final interviews with NHS/SPC trainee facilitators. RESULTS: A total of 19 NHS/SPC facilitators delivered one or more OSCaRS in 22 participating care homes. However, as of January 2022 only six trained facilitators remained active. Out of the 158 OSCaRS arranged, 96 took place with a total of 262 staff attending. There were three important aspects that emerged: the role, remit, and resources of NHS/SPC supporting OSCaRS; requirements within care homes for establishing OSCaRS; and, the practice-based learning topics discussed at each OSCaRS. CONCLUSION: Attempts to establish a team of NHS/SPC facilitators to lead OSCaRS highlights that end of life care education in care homes does not clearly fall within the contractual remit of either group or risks being missed due to more pressing priorities.

The impact of need-based care on formal caregivers' wellbeing in nursing homes: A cluster randomized controlled trial.

BACKGROUND: Need-based care is a structured and standardized model that supports formal caregivers in nursing homes in delivering person-centered care by responding with tailored non-pharmacological interventions on residents' unmet needs as well as having positive effects on behavioral and psychological symptoms on residents with dementia. However, limited resources as well as the shortage of caregivers in nursing homes make the implementation of need-based care challenging, especially when it comes to finding ways to spend more time with residents. The aim of this study is to evaluate the impact of the implementation of need-based care in nursing homes on formal caregivers' wellbeing. METHODS: A three-arm cluster randomized controlled trial was set up in 24 Belgian nursing homes: formal caregivers in the 'need-based care' group (intervention; n = 195) spent time twice a week with residents who had behavioral and psychological symptoms according to the principles of need-based care while formal caregivers in the 'time' group (n = 257) filled in the way they spent time twice a week; a third group delivered standard care (n = 299). An implementation strategy was built upon the Implementation Quality Framework and used in the 'need-based care group'. A total of 741 formal caregivers completed the digital questionnaire at one or more of the five time points (every nine weeks) between November 2021 and July 2022; they rated their sense of competence in dementia care, level of burnout, and, level of engagement. Moments of time were registered in a printed registration book. RESULTS: Only formal caregivers from the 'need-based care' group experienced a higher sense of competence in dementia care at time points three (p = 0.010) and four (p = 0.001) compared with baseline with an increase of respectively 1.5 (95 % confidence interval [0.25, 2.84]) and 2.4 (95 % confidence interval [0.77, 4.04]) points. No differences in scores on burnout and engagement were found. CONCLUSION: Despite challenging workforce circumstances in nursing homes, caregivers in the need-based care group as well as in the time group were able to spend time twice a week with residents with behavioral and psychological symptoms. No negative effects were found on formal caregivers' wellbeing after the implementation of need-based care in nursing homes. However, it requires strong leadership and the use of well-considered implementation strategies including reflective practice. TRIAL REGISTRY: Trial registration number ISRCTN56768265 (10/08/2023).

Advance care planning in care homes: the experience of staff, residents, and family members.

BACKGROUND: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. METHODS: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. FINDINGS: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportunistic cues and encouraging a 'tick-box' exercise. Residents were open to ACP, although the way it was introduced could affect the results. Families were comforted that the resident's future care had been considered. Education was identified as being important, and role modelling ACP enabled a member of staff to develop their skills and confidence in it. CONCLUSIONS: Care home staff need to develop the knowledge, skills, and confidence to engage in discussions around end-of-life care. The assistance of a trained facilitator who role-models this process should be explored.

Effect of need-based care on behavioural and psychological symptoms in residents with dementia and formal caregivers' distress in nursing homes: a three-arm cluster randomized controlled trial.

PURPOSE: To evaluate to what extent the standardized concept of need-based care on Behavioural and Psychological Symptoms of Dementia (BPSD), and formal caregiver distress, is superior when compared to spending more time or standard care with residents with BPSD. METHODS: A longitudinal cluster randomized controlled study in 23 nursing homes in Belgium with 3 parallel groups was set up. A total of 481 residents with dementia participated. Formal caregivers in the need-based care group treated residents who displayed agitated or aggressive behaviour with a non-pharmacological intervention, tailored to unmet needs, twice a week with re-evaluation every 8 weeks. In the time group, formal caregivers spent 'extra time'. In the standard care group, it was 'care as usual'. Outcomes were measured at four different time points with the Doloplus-2 (to assess pain behaviour), Cohen-Mansfield Agitation Inventory (CMAI) for agitation, the Neuropsychiatric Inventory (NPI-NH) for BPSD and formal caregivers' distress. RESULTS: Need-based interventions had a significant effect on residents' levels of pain behaviour. In the need-based care group, scores on overall BPSD (agitation and aggression, depression, euphoria, irritability, sleep and night-time behaviour) improved significantly from baseline when compared to other timepoints. No significant different interactions over time were found between all three groups for categorized versions of NPI scores (ever versus never). CONCLUSION: Need-based care reduced the level of BPSD in residents with dementia as well as formal caregivers' distress. The study supports the importance of tailored non-pharmacological interventions in the residential care for people with dementia. TRIAL REGISTRY: Trial registration number B300201942084 (18/11/2019).

Supporting care home residents in the last year of life through 'Needs Rounds': Development of a pre-implementation programme theory through a rapid collaborative online approach.

Background: Realist evaluation aims to address the knowledge to practice gap by explaining how an intervention is expected to work, as well as what is likely to impact upon the success of its implementation, by developing programme theories that link contexts, mechanisms and outcomes. Co-production approaches to the development of programme theories offer substantial benefits in addressing power relations, including and valuing different types of knowledge, and promoting buy-in from stakeholders while navigating the complex social systems in which innovations are embedded. This paper describes the co-production of an initial programme theory of how an evidence based intervention developed in Australia - called 'Palliative Care Needs Rounds' - might work in England and Scotland to support care home residents approaching their end of life. Methods: Using realist evaluation and iPARIHS (integrated Promoting Action on Research Implementation in Health Services) we sought to determine how contexts and mechanisms of change might shape implementation outcomes. Pre-intervention online interviews (n = 28) were conducted (February-April 2021), followed by four co-design online workshops with 43 participants (April-June 2021). The online interviews and workshops included a range of stakeholders, including care home staff, specialist palliative care staff, paramedics, general practitioners, and relatives of people living in care homes. Results: This methodology paper reports developments in realist evaluation and co-production methodologies, and how they were used to develop context, mechanisms, outcomes (CMOs) configurations, and chains of inference. The initial (pre-intervention) programme theory is used to illustrate this process. Two developments to iPARIHS are described. First, involving stakeholders in the collaborative co-design workshops created opportunities to commence facilitation. Second, we describe developing iPARIHS' innovation component, to include novel stakeholder interpretations, perceptions and anticipated use of the intervention as they participated in workshop discussions. Conclusions: This rapid and robust co-production methodology draws on interactive collaborative research practices (interviews, workshop discussions of data, illustrative vignettes and visual methods). These innovative and engaging methods can be packaged for online processes to develop, describe and interrogate the CMOs in order to co-produce a programme theory. These approaches also commence facilitation and innovation, and can be adopted in other implementation science and realist studies.

Action research in palliative care: defining an evaluation methodology.

BACKGROUND: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted. AIM: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology. DESIGN: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined. SETTING: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before-after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults. RESULTS: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research. CONCLUSIONS: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken.