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Context: Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this. Design: We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home. Results: We propose that being involved in care is a dynamic form of labour, which we call 'involvement work' (IW). In hospital, many patients 'entrust' IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice. Discussion: Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples' sense and experience of (in)dependence. Conclusions: A balance needs to be struck between respecting peoples' desire/capacity for non‐involvement in hospital while recognising that 'delegating' IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired. Patient/Public Contribution: Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented. [ABSTRACT FROM AUTHOR]

Background: Current models of patient‐enacted involvement do not capture the nuanced dynamic and interactional nature of involvement in care. This is important for the development of flexible interventions that can support patients to 'reach‐in' to complex health‐care systems. Objective: To develop a dynamic and interactional model of patient‐enacted involvement in care. Search strategy: Electronic search strategy run in five databases and adapted to run in an Internet search engine supplemented with searching of reference lists and forward citations. Inclusion criteria: Qualitative empirical published reports of older people's experiences of care transitions from hospital to home. Data extraction and synthesis: Reported findings meeting our definition of involvement in care initially coded into an existing framework. Progression from deductive to inductive coding leads to the development of a new framework and thereafter a model representing changing states of involvement. Main results: Patients and caregivers occupy and move through multiple states of involvement in response to perceived interactions with health‐care professionals as they attempt to resolve health‐ and well‐being‐related goals. 'Non‐involvement', 'information‐acting', 'challenging and chasing' and 'autonomous‐acting' were the main states of involvement. Feeling uninvolved as a consequence of perceived exclusion leads patients to act autonomously, creating the potential to cause harm. Discussion and conclusion: The model suggests that involvement is highly challenging for older people during care transitions. Going forward, interventions which seek to support patient involvement should attempt to address the dynamic states of involvement and their mediating factors. [ABSTRACT FROM AUTHOR]

Background: The Partners at Care Transitions (PACTs) intervention was developed to support older people's involvement in hospital to improve outcomes at home. A booklet, question card, record sheet, induction leaflet, and patient‐friendly discharge letter support patients to be more involved in their health and wellbeing, medications, activities of daily living and post‐discharge care. We aimed to assess intervention acceptability, identify implementation tools, and further develop the intervention. Methods: This was a qualitative formative evaluation involving three wards from one hospital. We recruited 25 patients aged 75 years and older. Ward staff supported intervention delivery. Data were collected in wards and patients' homes, through semi‐structured interviews, observation, and documentary analysis. Data were analysed inductively and iteratively with findings sorted according to the research aims. Results: Patients and staff felt there was a need for, and understood the purpose of, the PACT intervention. Most patients read the booklet but other components were variably used. Implementation challenges included time, awareness, and balancing intervention benefits against risks. Changes to the intervention and implementation included clarifying the booklet's messages, simplifying the discharge letter to reduce staff burden, and using prompts and handouts to promote awareness. Conclusion: The PACT intervention offers a promising new way to improve care transitions for older people by supporting patient involvement in their care. After further development of the intervention and implementation package, it will undergo further testing. Patient or Public Contribution: This study regularly consulted a panel representing the local patient community, who supported the development of this intervention and its implementation. [ABSTRACT FROM AUTHOR]

Background: Whilst pathways relating to the early stages of stroke care have become well established, strategies for longer-term care are less developed and longer-term outcomes remain poor for many stroke survivors. New Start, a complex intervention that includes needs identification, exploration of social networks and components of problem-solving and self-management, was designed to improve stroke survivors' quality of life by addressing unmet needs and increasing participation. It is delivered approximately 6 months post-stroke by trained staff (facilitators). We are currently undertaking a cluster randomised feasibility trial of the New Start intervention with an embedded process evaluation, which is an important component of the design and testing of complex interventions as it provides an understanding of how interventions are delivered and function in different settings.Methods/design: This mixed methods process evaluation will explore the degree to which New Start is implemented as intended, the impact of context on intervention delivery and the acceptability of the intervention for stroke survivors, their families and practitioners. It will include non-participant observation of facilitator training and intervention delivery. Interviews with stroke survivors, facilitators and other relevant staff (including administrators and managerial staff) will be undertaken. Qualitative data from interview transcripts, facilitator reflections and observational field notes will be analysed thematically alongside numerical data documenting intervention delivery collected as part of the trial.Discussion: This process evaluation will identify factors that aid and impede implementation of the New Start intervention and improve understanding of this novel approach to longer-term stroke care.Trial Registration: ISRCTN Registry, ISRCTN38920246 . Registered on 22 June 2016. [ABSTRACT FROM AUTHOR]

Introduction: Complex intervention development has been described as the 'Cinderella' black box in health services research. Greater transparency in the intervention development process is urgently needed to help reduce research waste. Methods: We applied a new consensus‐based framework for complex intervention development to our programme of research, in which we developed an intervention to improve the safety and experience of care transitions for older people. Through this process, we aimed to reflect on the framework's utility for intervention development and identify any important gaps within it to support its continued development. Findings: The framework was a useful tool for transparent reporting of the process of complex intervention development. We identified potential 'action' gaps in the framework including 'consolidation of evidence' and 'development of principles' that could bracket and steer decision‐making in the process. Conclusions: We consider that the level of transparency demonstrated in this report, aided through use of the framework, is essential in the quest for reducing research waste. Patient or Public Contribution: We have involved our dedicated patient and public involvement group in all work packages of this programme of research. Specifically, they attended and contributed to co‐design workshops and contributed to finalizing the intervention for the pilot evaluation. Staff also participated by attending co‐design workshops, helping us to prioritize content ideas for the intervention and supporting the development of intervention components outside of the workshops. [ABSTRACT FROM AUTHOR]

Background: To address the limited provision of longer-term stroke care, we conducted a programme of research (LoTS2Care) to develop and test an intervention to form part of a replicable longer-term care strategy. New Start, a programme of facilitated self-management, was developed to be delivered at 6 months post-stroke by trained facilitators. Here, we report the findings from the final workstream of this programme, which aimed to evaluate the feasibility and acceptability of implementing a future definitive cluster randomised controlled trial of the developed intervention (New Start) to support stroke survivors and their carers in the longer term. Methods: A feasibility cluster randomised controlled trial was conducted in English and Welsh NHS stroke services. Stroke services (clusters) were randomised on a 1:1 basis to implement New Start or continue with usual care only. Community-dwelling stroke survivors between 4 and 6 months post-stroke were invited to participate in the trial by post. Outcome measures were collected via post at 3, 6 and 9 months after recruitment. Recruitment and follow-up rates, delivery and uptake of the intervention, data collection feasibility (including postal outcome measures of health and disability, mental well-being at 3, 6, and 9 months post-recruitment) and safety were assessed. Results: Ten stroke services were recruited. A total of 1127 stroke survivors were screened for participation, and 269 were registered (New Start, n = 145; usual care, n = 124). Retention was high with 239 (89%) stroke survivors being available for follow-up at 9 months, and high return rates of postal questionnaires were achieved (80.3% at 9 months). Intervention training was successfully delivered, and New Start was offered to 95.2% of trial participants in the intervention arm. Uptake was variable, however, ranging from 11.8 to 75.0%. There were no safety concerns. Conclusions: Stroke service recruitment and longer-term stroke survivor postal recruitment and outcome data collection are feasible; however, refinement of intervention targeting and delivery is required prior to undertaking a definitive trial. Trial registration: ISRCTN38920246. Registered 22 June 2016 (http://www.isrctn.com/ISRCTN38920246). [ABSTRACT FROM AUTHOR]

Introduction: The period following discharge can present risks for older adults. Most research has focused on hospital discharge with less attention paid to on-going care needs. Despite evidence that patients undertake 'invisible work' to improve care safety, their reported willingness to be involved in care, and the consensus that successful transitions interventions include patient involvement, in reality, this is variable. Further, little research has viewed transitional care as a 'system', with gaps, interdependencies and variability across settings, nor the role of patients and families in supporting the system resilience.Research Objectives: 1) model transitional care from multiple perspectives using the Functional Resonance Analysis Method (FRAM); 2) use the model to develop a theory of change to support intervention development.Method: We drew data from two studies: i) exploring the perspective of older adults across transitional care, and ii) exploring how health services experience transitional care. We employed the FRAM to develop a model of transitional care, with a system boundary spanning an older patient's admission to hospital, through to thirty days post-discharge.Findings: Modelling transitional care from multiple perspectives was challenging. 27 functions were identified with interdependencies between hospital-based functions and patient-led functions once home, the success of which may impact on transitions 'outcomes' (e.g. safety events, readmissions). The model supported development of a theory of change, to guide future intervention development.Conclusions: Supporting certain patient-facing upstream hospital functions (e.g. encouraging mobility, supporting a better understanding of medication and condition), may lead to improved outcomes for patients following hospital discharge. [ABSTRACT FROM AUTHOR]

Background: Despite the evidence that many stroke survivors report longer term unmet needs, the provision of longer term care is limited. To address this, we are conducting a programme of research to develop an evidence-based and replicable longer term care strategy. The developed complex intervention (named New Start), which includes needs identification, exploration of social networks and components of problem solving and self-management, was designed to improve quality of life by addressing unmet needs and increasing participation.Methods/design: A multicentre, cluster randomised controlled feasibility trial designed to inform the design of a possible future definitive cluster randomised controlled trial (cRCT) and explore the potential clinical and cost-effectiveness of New Start. Ten stroke services across the UK will be randomised on a 1:1 basis either to implement New Start or continue with usual care only. New Start will be delivered by trained facilitators and will be offered to all stroke survivors within the services allocated to the intervention arm. Stroke survivors will be eligible for the trial if they are 4-6 months post-stroke and residing in the community. Carers (if available) will also be invited to take part. Invitation to participate will be initiated by post and outcome measures will be collected via postal questionnaires at 3, 6 and 9 months after recruitment. Outcome data relating to perceived health and disability, wellbeing and quality of life as well as unmet needs will be collected. A 'study within a trial' (SWAT) is planned to determine the most acceptable format in which to provide the postal questionnaires. Details of health and social care service usage will also be collected to inform the economic evaluation. The feasibility of recruiting services and stroke survivors to the trial and of collecting postal outcomes will be assessed and the potential for effectiveness will be investigated. An embedded process evaluation (reported separately) will assess implementation fidelity and explore and clarify causal assumptions regarding implementation.Discussion: This feasibility trial with embedded process evaluation will allow us to gather important and detailed data regarding methodological and implementation issues to inform the design of a possible future definitive cRCT of this complex intervention.Trial Registration: ISRCTN38920246 . Registered 22 June 2016. [ABSTRACT FROM AUTHOR]