Rebecca Hawkins

Implementing a training intervention to support caregivers after stroke: a process evaluation examining the initiation and embedding of programme change

BackgroundMedical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.ResultsContextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.ConclusionsWhere implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory’s constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.

Introducing structured caregiver training in stroke care: findings from the TRACS process evaluation study

Objective To evaluate the process of implementation of the modified London Stroke Carers Training Course (LSCTC) in the Training Caregivers After Stroke (TRACS) cluster randomised trial and contribute to the interpretation of the TRACS trial results. The LSCTC was a structured competency-based training programme designed to help develop the knowledge and skills (eg, patient handling or transfer skills) essential for the day-to-day management of disabled survivors of stroke. The LSCTC comprised 14 components, 6 were mandatory (and delivered to all) and 8 non-mandatory, to be delivered based on individual assessment of caregiver need. Design Process evaluation using non-participant observation, documentary analysis and semistructured interviews. Participants Patients with stroke (n=38), caregivers (n=38), stroke unit staff (n=53). Settings 10 of the 36 stroke units participating in the TRACS trial in four English regions (Yorkshire, North West, South East and South West, Peninsula). Results Preparatory cascade training on delivery of the LSCTC did not reach all staff and did not lead to multidisciplinary team (MDT) wide understanding of, engagement with or commitment to the LSCTC. Although senior therapists in most intervention units observed developed ownership of the LSCTC, MDT working led to separation rather than integration of delivery of LSCTC elements. Organisational features of stroke units and professionals’ patient-focused practices limited the involvement of caregivers. Caregivers were often invited to observe therapy or care being provided by professionals but had few opportunities to make sense of, or to develop knowledge and stroke-specific skills provided by the LSCTC. Where provided, caregiver training came very late in the inpatient stay. Assessment and development of caregiver competence was not commonly observed. Conclusions Contextual factors including service improvement pressures and staff perceptions of the necessity for and work required in caregiver training impacted negatively on implementation of the caregiver training intervention. Structured caregiver training programmes such as the LSCTC are unlikely to be practical in settings with short inpatient stays. Stroke units where early supported discharge is in place potentially offer a more effective vehicle for introducing competency based caregiver training. LINKED TRACS Cluster randomised controlled trial number ISRCTN49208824.

‘If they don't use it, they lose it’: how organisational structures and practices shape residents’ physical movement in care home settings

ABSTRACT Older people living in long-term facilities (nursing and residential homes providing 24-hour care) spend the majority of their time inactive, despite the known health and wellbeing benefits of physical activity and reduced time spent sedentary. In order to successfully embed interventions that aim to increase physical activity or reduce sedentary behaviour, it is necessary to understand the features of the care environment that influence residents’ routine patterns of movement. Drawing on an organisational perspective, this paper explores the structures and mechanisms that shaped different care practices concerning residents’ movement in two contrasting care homes in the north of England. This study adopted an ethnographic approach, using a combination of qualitative observations, informal conversations and interviews. A grounded theory approach to data analysis was adopted. The findings illustrate the importance of translating espoused values of care into tangible and acceptable care practices, systems of management, staff training and development, and the use of care planning in residents’ routine patterns of movement. Understanding how organisational factors shape routine movement among care home residents will help inform the development of embedded and sustainable interventions that enhance physical activity and reduce sedentary behaviour. This study is part of a wider programme of research developing and testing a complex intervention, embedded within routine care, to reduce sedentary behaviour among care home residents.

PATCH: posture and mobility training for care staff versus usual care in care homes: study protocol for a randomised controlled trial

BackgroundResidents of care homes have high levels of disability and poor mobility, but the promotion of health and wellbeing within care homes is poorly realised. Residents spend the majority of their time sedentary which leads to increased dependency and, coupled with poor postural management, can have many adverse outcomes including pressure sores, pain and reduced social interaction. The intervention being tested in this project (the Skilful Care Training Package) aims to increase the awareness and skills of care staff in relation to poor posture in the older, less mobile adult and highlight the benefits of activity, and how to skilfully assist activity, in this group to enable mobility and reduce falls risk. Feasibility work will be undertaken to inform the design of a definitive cluster randomised controlled trial.MethodsThis is a cluster randomised controlled feasibility trial, aiming to recruit at least 12–15 residents at each of 10 care homes across Yorkshire. Care homes will be randomly allocated on a 1:1 basis to receive either the Skilful Care Training Package alongside usual care or to continue to provide usual care alone. Assessments will be undertaken by blinded researchers with participating residents at baseline (before care home randomisation) and at three and six months post randomisation. Data relating to changes in physical activity, mobility, posture, mood and quality of life will be collected. Data at the level of the home will also be collected and will include staff experience of care and changes in the numbers and types of adverse events residents experience (for example, hospital admissions, falls). Details of NHS service usage will be collected to inform the economic analysis. An embedded process evaluation will explore intervention delivery and its acceptability to staff and residents.DiscussionParticipant uptake, engagement and retention are key feasibility outcomes. Exploration of barriers and facilitators to intervention delivery will inform intervention optimisation. Study results will inform progression to a definitive trial and add to the body of evidence for good practice in care home research.Trial registrationISRCTN Registry, ISRCTN50080330. Registered on 27 March 2017.

Disciplinary power and the process of training informal carers on stroke units

This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role. Drawing on Foucaults notion of disciplinary power, we show how disciplinary forms of power exercised in interactions between healthcare professionals and carers shape the engagement and resistance of carers in the process of training. Interview and observational field note extracts are drawn from a multi-sited study of a training programme on stroke units targeting family carers of people with stroke to consider the consequences of subjecting caring to this intervention. We found that the process of training informal carers on stroke units was not simply a matter of transferring skills from professional to lay person, but entailed disciplinary forms of power intended to shape the conduct of the carer. We interrogate the extent to which a specific kind of carer is produced through such an approach, and the wider implications for the participation of carers in training in healthcare settings and the empowerment of carers.

Qualitatively exploring the suitability of tablet computers to encourage participation with activities by people with moderate stage dementia

Introduction Opportunities to participate with enjoyable activities is one of the most frequently reported unmet needs by the person living with dementia. Enabling and intuitive technologies may offer accessible ways to engage with such activities. Objectives To explore how tablet computers might encourage participation in enjoyable activities by people with moderate levels of dementia and to consider how such technologies might be incorporated into the repertoire of activities currently provided through day care settings. Methods A focused visual ethnographic approach was developed specifically to meet the research objectives. Twelve participants attending a community day care centre and nine supporters (both volunteers and paid staff) consented to take part in the research. Technology facilitated group activity sessions took place twice a week for a period of four weeks and all were video recorded. Findings: Video analysis demonstrated that the majority of people with dementia found the technology an effective means of participating in enjoyable activities. Analysis also revealed the extent to which participation relies on the existence of effective support. It showed how maintaining focus on retained strengths and abilities enabled the group overall to meet and often exceed their own and others perceived capacity to participate. Finally, analysis confirmed the importance of enjoyment of activities ‘in the moment’ and the need for those supporting people in the moderate stages of dementia to acknowledge and work with this. Conclusion The use of tablet computers to enhance participation in sociable and enjoyable activities in day care settings is realistic and achievable if supported appropriately.

Poststroke Trajectories: The Process of Recovery Over the Longer Term Following Stroke

We adopted a grounded theory approach to explore the process of recovery experienced by stroke survivors over the longer term who were living in the community in the United Kingdom, and the interacting factors that are understood to have shaped their recovery trajectories. We used a combination of qualitative methods. From the accounts of 22 purposively sampled stroke survivors, four different recovery trajectories were evident: (a) meaningful recovery, (b) cycles of recovery and decline, (c) ongoing disruption, (d) gradual, ongoing decline. Building on the concept of the illness trajectory, our findings demonstrate how multiple, interacting factors shape the process and meaning of recovery over time. Such factors included conception of recovery and meanings given to the changing self, the meanings and consequences of health and illness experiences across the life course, loss, sense of agency, and enacting relationships. Awareness of the process of recovery will help professionals better support stroke survivors.

A scoping review to identify the techniques frequently used when analysing qualitative visual data

Challenges were encountered when attempting to analyse video based data during a project exploring touch screen computer technology with people living with dementia. In order to inform the analytic process, a scoping review of published evidence was undertaken. Results of the scope illustrated the use of various techniques when analysing visual data, the most common of which was the transcription of video into text and analysed using conversation analysis. Three additional issues emerged in the course of the review. First, there is an absence of detail when describing the ethical implications involved when utilising visual methods in research. Second, limited priority is given to providing a clear rationale for utilising visual methods when audio or field notes may have been a viable alternative. Third, only 40% of reviewed articles clearly stated a chosen methodology. The conclusions of the review illustrate a lack of consistency across studies in the overall reporting of research methods and recommend that authors be explicit in their reporting of methodological issues across the research process.

A qualitative exploration of self-reported unmet need one year after stroke

Abstract Purpose: Stroke survivors consistently report longer-term problems after stroke, suggesting their needs are not being met. We developed a questionnaire to identify stroke-survivor unmet needs. Preliminary questionnaire testing showed that despite residual impairment, nearly one third of respondents reported no/low unmet need. This qualitative study aims to gain insight into why stroke survivors report low/no unmet needs. Method: People who self-reported zero or one unmet need were purposively sampled and semi-structured interviews were conducted with 10 participants. Identification and management of current problems were discussed and thematic analysis was undertaken. Results: Participants did not report having unmet need. Despite this, all participants identified current issues or problems. Living with problems while reporting no/low unmet need is explained through: acceptance of changed circumstances; making comparisons with other people and circumstances; valuing pride, determination or independence; and viewing issues in the context of their expectations and experiences of services. Additionally, all participants were receiving some support. Conclusions: Self-identification of unmet needs is complex. Further investigation could explore the factors which enable stroke survivors to appropriately identify and experience no unmet needs, and whether these could be applied to reduce unmet needs of others. Implications for Rehabilitation Despite self-reporting no/low unmet need, survivors of stroke may still be experiencing difficulties in their daily lives. Stroke-survivor-identified low unmet need is influenced by complex factors including: acceptance; expectations of services; and comparisons with other people, which Health and Social Care professionals have a role in understanding. Health professionals could assess unmet need by using tools as a guide, supported by individual conversation. Factors which enable some stroke survivors to appropriately identify and experience no/low unmet need could be further explored, and considered as strategies to reduce unmet needs of others.