Young carers of stroke survivors

The UK has been at the forefront of young carer research internationally, creating a sound evidence base, influencing policy and developing support for young carers. Studies have consistently found young carers can gain positive attributes and skills from their caring role but that is not always the case. Where there are unmet needs, young carers can experience detriment to their health, well-being and future life chances. Some of the detrimental causes are condition-specific. Young carers of stroke survivors are not included in national stroke guidance. No UK studies were found of young carers of stroke survivors. There is therefore a significant knowledge gap about existing unmet needs of young carers of stroke survivors and consequent potential to develop support services to mitigate any detrimental effects of caring. This thesis reports on a series of three studies taking a sequential exploratory mixed design which aimed to begin to address the identified knowledge gap. The first study comprised a cross-sectional survey of stroke survivors newly discharged home from hospital. 100% of (n=75) respondents identified a need for support with Activities of Daily Living and 75% did not have any paid carers, suggesting a reliance on family and friends for support. Twelve stroke survivors had young carers (n=24), four were primary young carers and three were providing over 20hrs a week of emotional and over 20hrs of practical care. Eight families expressed an interest in participating in the second study. The second study explored the lived experience of young carers of stroke survivors through semi-structured interviews. Seven stroke survivors and their 11 young carers were interviewed. Thematic analysis revealed five themes with 14 sub-themes: Impact of stroke, Insulating the family, Children and young carers of stroke survivors, Knowledge information and learning about stroke and Statutory and voluntary sector services for young carers. Findings showed that young carers were providing a range of support including personal care and rehabilitation. The majority did not recognise themselves as young carers and none had been assessed or were in receipt of support. All young carers were happy providing care and most reported enhancing attributes and gaining positive skills from their caring role. Families were working together to protect and support each other but did not know how to talk to each other about their fears and worries, potentially increasing anxiety. Knowledge and understanding of stroke, and access to information for young carers was poor. This was compounded by a lack of engagement with young carers by health and social care professionals and their apparent lack of awareness of young carers’ need for information and support. The greatest unmet need for all young carers was for information about stroke and how they could care more effectively. Experts (commissioners and providers of young carer services) (n=12) were also interviewed to explore the context and challenges for the provision of young carer services. No stroke-specific support services were identified for young carers of stroke survivors. The study found a large variation in the young carer’s assessment tools in use and the way they were being implemented to triage young carers for support. This was contributing to inequity in access to services for some young carers. Experts identified challenges in identifying young carers compounded by many factors including the young carers and families not engaging with statutory services either because they were afraid of unwanted interference or were unaware of their rights to assessments and support; complex and variable pathways to assessment and support and a lack of awareness of the existence of young carers by front line health and social care professionals. This was particularly so for stroke. The final study reviewed and analysed printed and online information for children and young carers of stroke survivors which was compared and synthesized with information for brain injury, Multiple Sclerosis and Parkinson’s disease as comparable neurological conditions. An Appreciative Inquiry approach was taken to identify and build upon best practice in information provision for young carers identified from condition specific information for Multiple Sclerosis and Parkinson’s disease. A gold standard core information set was generated from the information synthesis. Conclusion This PhD provides the first insight into the lives of young carers of stroke survivors. It has started to address the existing knowledge gap by identifying the unmet needs of young carers of stroke survivors. A gold standard core information set has been identified as a potential support mechanism. Health and social care professionals could play a key role in supporting young carers of stroke survivors, but require support to maximise opportunities to adopt a more robust whole family approach by disseminating information, teaching families about stroke and encouraging openness. This could enhance outcomes for young carers by mitigating potential damaging effects of caring and optimise beneficial aspects of caring

The impact of involuntary retirement on senior police officers

There have been no published studies on the impact of involuntary retirement on police officers. This article describes the reported experience of a group of senior police officers who were involuntarily retired from the police service in England and Wales. One-to-one interviews were conducted 2–15 months after retirement with nine former Superintendents and Chief Superintendents aged 48–56 years old, with an average of 30 years of service. Interviews were recorded, transcribed, and subject to thematic analysis. Three overarching themes emerged: perceived breach of a psychological contract, impact on individuals and families, and life ‘after the job’. Positive outcomes included having increased time for fitness and leisure activities, and entering new careers. Negative outcomes included inadequate time to prepare for retirement, financial challenges, difficulties navigating the civilian job market, low mood, and feelings of isolation and abandonment. Implications for the future management of involuntary retirement are presented

A Qualitative Study Exploring the Lives and Caring Practices of Young Carers of Stroke Survivors

This study investigated the life transformation of children when a parent returned home from hospital after a stroke. The study explored children’s experiences of taking on caring roles in partnership with their well parent and stroke survivors’ perceptions of the young carer roles. The study aimed to identify unmet support needs in order to inform future service provision. Semi-structured interviews were conducted separately with stroke survivors (n = 7) (age range 41–60 years, mean 50.6) and their young carers (n = 11) (age range 11–20 years, mean 16). Interviews were audio recorded, transcribed and analysed using reflexive thematic analysis. Three overarching themes were identified: the lives of young carers, impact of stroke, and insulating the family. All the children were providing some level of care. None were in receipt of any formal support. Children moved in and out of the caring role in the absence of an adult, to act as primary carer. Young carers valued the life skills they were gaining but reported gaps in their knowledge and understanding of stroke. The well parent and young carers worked together in a bi-directional partnership to ameliorate the impact of stroke on the family. The study concluded that age appropriate and stroke specific information for children of stroke survivors could enhance agency and optimise positive outcomes of caring

A qualitative study exploring how stroke survivors’ expectations and understanding of stroke Early Supported Discharge shaped their experience and engagement with the service

Purpose: To explore how stroke survivors’ expectations and understanding of Early Supported Discharge (ESD) helped them make sense of their experiences, and shaped their engagement with the service. Methods: Data were collected as part of a study of large-scale implementation of stroke ESD: the WISE realist mixed-methods study. Semi-structured interviews were conducted with five purposefully selected stroke survivors from six sites in England implementing stroke ESD (n = 30). Participants were aged 32–88 years (20 males). Interviews were audio recorded, transcribed verbatim and transcripts were analysed using reflexive thematic analysis. Results: Three overarching themes were identified: (1) ESD as a post-stroke recovery tool, (2) desire to recover quickly, (3) psychosocial impact and support. Stroke survivors were uncertain about what to expect when they first entered the service, however, their experience of ESD exceeded their expectations and increased their engagement with the service. Stroke survivors especially valued the goal-oriented approach the team adopted. Rehabilitation at home was perceived as positive and practical, encouraging independence within real-life contexts. Psycho-social support played an important role in the stroke survivors’ rehabilitation. Conclusions: Ensuring stroke survivors are fully informed about ESD and what to expect, optimises engagement with the services, improves experience and could enhance outcomes.IMPLICATIONS FOR REHABILITATION Informing stroke survivors about what to expect from ESD services could optimise engagement and improve their experience. The provision of personalised and target focussed therapy at home improves stroke survivors’ experience and could potentially accelerate recovery. Preparing stroke survivors early for discharge from ESD can reduce anxiety and enhance engagement with the service

Evaluating stroke early supported discharge using cost-consequence analysis

Purpose: To evaluate different stroke Early Supported Discharge (ESD) services in different geographical settings using cost-consequence analysis (CCA), which presents information about costs and outcomes in the form of a balance sheet. ESD is a multidisciplinary service intervention that facilitates discharge from hospital and includes delivery of stroke specialist rehabilitation at home.Materials and methods: Data were collected from six purposively sampled services across the Midlands, East and North of England. All services, rural and urban, provided stroke rehabilitation to patients in their own homes. Cost data included direct and overhead costs of service provision and staff travel. Consequence data included service level adherence to an expert consensus regarding the specification of ESD service provision.Results: We observed that the most rural services had the highest service cost per patient. The main costs associated with running each ESD service were staff costs. In terms of the consequences, there was a positive association between service costs per patient and greater adherence to meeting the evidence-based ESD service specification agreed by an expert panel.Conclusions: This study found that rural services were associated with higher costs per patient, which in turn were associated with greater adherence to the expert consensus regarding ESD service specification. We suggest additional resources and costs are required in order for rural services to meet evidence-based criteria.Study registration: http://www.isrctn.com/ISRCTN1556816

Large-scale implementation of stroke early supported discharge: the WISE realist mixed-methods study

Background: In England, the provision of early supported discharge is recommended as part of an evidence-based stroke care pathway. Objectives: To investigate the effectiveness of early supported discharge services when implemented at scale in practice and to understand how the context within which these services operate influences their implementation and effectiveness. Design: A mixed-methods study using a realist evaluation approach and two interlinking work packages was undertaken. Three programme theories were tested to investigate the adoption of evidence-based core components, differences in urban and rural settings, and communication processes. Setting and interventions: Early supported discharge services across a large geographical area of England, covering the West and East Midlands, the East of England and the North of England. Participants: Work package 1: historical prospective patient data from the Sentinel Stroke National Audit Programme collected by early supported discharge and hospital teams. Work package 2: NHS staff (n = 117) and patients (n = 30) from six purposely selected early supported discharge services. Data and main outcome: Work package 1: a 17-item early supported discharge consensus score measured the adherence to evidence-based core components defined in an international consensus document. The effectiveness of early supported discharge was measured with process and patient outcomes and costs. Work package 2: semistructured interviews and focus groups with NHS staff and patients were undertaken to investigate the contextual determinants of early supported discharge effectiveness. Results: A variety of early supported discharge service models had been adopted, as reflected by the variability in the early supported discharge consensus score. A one-unit increase in early supported discharge consensus score was significantly associated with a more responsive early supported discharge service and increased treatment intensity. There was no association with stroke survivor outcome. Patients who received early supported discharge in their stroke care pathway spent, on average, 1 day longer in hospital than those who did not receive early supported discharge. The most rural services had the highest service costs per patient. NHS staff identified core evidence-based components (e.g. eligibility criteria, co-ordinated multidisciplinary team and regular weekly multidisciplinary team meetings) as central to the effectiveness of early supported discharge. Mechanisms thought to streamline discharge and help teams to meet their responsiveness targets included having access to a social worker and the quality of communications and transitions across services. The role of rehabilitation assistants and an interdisciplinary approach were facilitators of delivering an intensive service. The rurality of early supported discharge services, especially when coupled with capacity issues and increased travel times to visit patients, could influence the intensity of rehabilitation provision and teams’ flexibility to adjust to patients’ needs. This required organising multidisciplinary teams and meetings around the local geography. Findings also highlighted the importance of good leadership and communication. Early supported discharge staff highlighted the need for collaborative and trusting relationships with patients and carers and stroke unit staff, as well as across the wider stroke care pathway. Limitations: Work package 1: possible influence of unobserved variables and we were unable to determine the effect of early supported discharge on patient outcomes. Work package 2: the pragmatic approach led to ‘theoretical nuggets’ rather than an overarching higher-level theory. Conclusions: The realist evaluation methodology allowed us to address the complexity of early supported discharge delivery in real-world settings. The findings highlighted the importance of context and contextual features and mechanisms that need to be either addressed or capitalised on to improve effectiveness. Trial registration: Current Controlled Trials ISRCTN15568163. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 22. See the NIHR Journals Library website for further project information

Understanding how stroke telerehabilitation works and for whom to inform recommendations for practice: The TELSTAR study protocol

Telerehabilitation (TR) shows promise as a method of remote service delivery, yet there is little guidance to inform implementation in the context of the National Health Service (NHS) in England. This paper presents the protocol for a realist synthesis study aiming to investigate how TR can be implemented to support the provision of high quality, equitable community-based stroke rehabilitation and under what conditions. Using a realist approach, we will synthesise information from: 1) a comprehensive evidence review; 2) qualitative interviews with clinicians (n≤30), and patient-family carer dyads (n≤60), from three purposively selected community stroke rehabilitation services in England. Working groups including rehabilitation professionals, service users and policy makers will co-develop actionable recommendations. Insights from the review and the interviews will be synthesised to test and refine programme theories that explain how TR works and for whom in clinical practice and draw key messages for service implementation. This protocol highlights the need to improve our understanding of TR implementation in the context of multidisciplinary, community-based stroke service provision. We suggest the use of realist methodology and co-production to inform evidence-based recommendations which consider the needs and priorities of clinicians and people affected by stroke

Large-scale implementation of stroke early supported discharge: the WISE realist mixed-methods study

BackgroundIn England, the provision of early supported discharge is recommended as part of an evidence-based stroke care pathway.ObjectivesTo investigate the effectiveness of early supported discharge services when implemented at scale in practice and to understand how the context within which these services operate influences their implementation and effectiveness.DesignA mixed-methods study using a realist evaluation approach and two interlinking work packages was undertaken. Three programme theories were tested to investigate the adoption of evidence-based core components, differences in urban and rural settings, and communication processes.Setting and interventionsEarly supported discharge services across a large geographical area of England, covering the West and East Midlands, the East of England and the North of England.ParticipantsWork package 1: historical prospective patient data from the Sentinel Stroke National Audit Programme collected by early supported discharge and hospital teams. Work package 2: NHS staff (n = 117) and patients (n = 30) from six purposely selected early supported discharge services.Data and main outcomeWork package 1: a 17-item early supported discharge consensus score measured the adherence to evidence-based core components defined in an international consensus document. The effectiveness of early supported discharge was measured with process and patient outcomes and costs. Work package 2: semistructured interviews and focus groups with NHS staff and patients were undertaken to investigate the contextual determinants of early supported discharge effectiveness.ResultsA variety of early supported discharge service models had been adopted, as reflected by the variability in the early supported discharge consensus score. A one-unit increase in early supported discharge consensus score was significantly associated with a more responsive early supported discharge service and increased treatment intensity. There was no association with stroke survivor outcome. Patients who received early supported discharge in their stroke care pathway spent, on average, 1 day longer in hospital than those who did not receive early supported discharge. The most rural services had the highest service costs per patient. NHS staff identified core evidence-based components (e.g. eligibility criteria, co-ordinated multidisciplinary team and regular weekly multidisciplinary team meetings) as central to the effectiveness of early supported discharge. Mechanisms thought to streamline discharge and help teams to meet their responsiveness targets included having access to a social worker and the quality of communications and transitions across services. The role of rehabilitation assistants and an interdisciplinary approach were facilitators of delivering an intensive service. The rurality of early supported discharge services, especially when coupled with capacity issues and increased travel times to visit patients, could influence the intensity of rehabilitation provision and teams’ flexibility to adjust to patients’ needs. This required organising multidisciplinary teams and meetings around the local geography. Findings also highlighted the importance of good leadership and communication. Early supported discharge staff highlighted the need for collaborative and trusting relationships with patients and carers and stroke unit staff, as well as across the wider stroke care pathway.LimitationsWork package 1: possible influence of unobserved variables and we were unable to determine the effect of early supported discharge on patient outcomes. Work package 2: the pragmatic approach led to ‘theoretical nuggets’ rather than an overarching higher-level theory.ConclusionsThe realist evaluation methodology allowed us to address the complexity of early supported discharge delivery in real-world settings. The findings highlighted the importance of context and contextual features and mechanisms that need to be either addressed or capitalised on to improve effectiveness.Trial registrationCurrent Controlled Trials ISRCTN15568163

Between the cracks: The intersection of individuals, social processes and creativity after the Canterbury earthquakes 2010-2012 : A thesis submitted in partial fulfilment of the requirements for the Degree of Doctor of Philosophy at Lincoln University

This research investigates creativity in a post-disaster setting. The data explore creativity at the intersection of the affected community of Christchurch, New Zealand and the social processes that followed the earthquakes of 2010 - 2012. Personal and contextual influences on creative ideas implemented for community or commercial benefit are also examined. Viewed as creative, unique approaches to post-disaster problem solving were celebrated locally, nationally and internationally (Bergman, 2014; Wesener, 2015; Cloke & Conradson, 2018). Much has been written about creativity, particularly creativity in organisations and in business. However, little is known with regards to who creates after a disaster, why individuals choose to do so and what impact the post-disaster context has on their creative activity. This exploratory study draws on the literature from the fields of creativity, disasters, psychology, sociology and entrepreneurship to interpret first-hand accounts of people who acted on creative ideas in a physically and socially altered environment. A mixed method - albeit predominantly qualitative - approach to data gathering was adopted that included interviews (n=45) with participants who had been the primary drivers of creative ideas implemented in Christchurch after September 2010 – the first major (7.1 magnitude) earthquake in a prolonged sequence of thousands of aftershocks. Key findings include that a specific type of creativity results from the ‘collision’ between individuals and social processes activated by a disaster situation. This type of creativity could be best categorised as ‘little c’ or socially adaptive and emerges through a prosocial filter. There is wide consensus amongst creativity researchers - principally social psychologists - that for output to be considered creative it must be both novel and useful (Runco & Jaegar, 2012). There is greater tolerance for the novelty component after a disaster as novelty itself has greater utility, either as a distraction or because alternatives are few. Existing creativity models show context as input – an additional component of the creative process – but after a disaster the event itself becomes the catalyst for social processes that result in the creativity seen. Most participants demonstrated characteristics commonly associated with creativity and could be categorised as either a ‘free thinker’ and/or an ‘opportunist’. Some appear preadapted to create and thrive in unstable circumstances. Findings from participants’ completion of a Ten Item Personality Inventory (TIPI) showed an apparent reduced need for extraversion in relation to implementing creative ventures in society. This factor, along with higher levels of agreeableness may indicate a potentially detrimental effect on the success of creative ideas established after a disaster, despite earnest intentions. Three new models are presented to illustrate the key findings of this study. The models imply that disasters enhance both the perceived value of creativity and the desire to act creatively for prosocial ends. The models also indicate that these disaster influenced changes are likely to be temporary

Young carers of stroke survivors

The UK has been at the forefront of young carer research internationally, creating a sound evidence base, influencing policy and developing support for young carers. Studies have consistently found young carers can gain positive attributes and skills from their caring role but that is not always the case. Where there are unmet needs, young carers can experience detriment to their health, well-being and future life chances. Some of the detrimental causes are condition-specific. Young carers of stroke survivors are not included in national stroke guidance. No UK studies were found of young carers of stroke survivors. There is therefore a significant knowledge gap about existing unmet needs of young carers of stroke survivors and consequent potential to develop support services to mitigate any detrimental effects of caring. This thesis reports on a series of three studies taking a sequential exploratory mixed design which aimed to begin to address the identified knowledge gap. The first study comprised a cross-sectional survey of stroke survivors newly discharged home from hospital. 100% of (n=75) respondents identified a need for support with Activities of Daily Living and 75% did not have any paid carers, suggesting a reliance on family and friends for support. Twelve stroke survivors had young carers (n=24), four were primary young carers and three were providing over 20hrs a week of emotional and over 20hrs of practical care. Eight families expressed an interest in participating in the second study. The second study explored the lived experience of young carers of stroke survivors through semi-structured interviews. Seven stroke survivors and their 11 young carers were interviewed. Thematic analysis revealed five themes with 14 sub-themes: Impact of stroke, Insulating the family, Children and young carers of stroke survivors, Knowledge information and learning about stroke and Statutory and voluntary sector services for young carers. Findings showed that young carers were providing a range of support including personal care and rehabilitation. The majority did not recognise themselves as young carers and none had been assessed or were in receipt of support. All young carers were happy providing care and most reported enhancing attributes and gaining positive skills from their caring role. Families were working together to protect and support each other but did not know how to talk to each other about their fears and worries, potentially increasing anxiety. Knowledge and understanding of stroke, and access to information for young carers was poor. This was compounded by a lack of engagement with young carers by health and social care professionals and their apparent lack of awareness of young carers’ need for information and support. The greatest unmet need for all young carers was for information about stroke and how they could care more effectively. Experts (commissioners and providers of young carer services) (n=12) were also interviewed to explore the context and challenges for the provision of young carer services. No stroke-specific support services were identified for young carers of stroke survivors. The study found a large variation in the young carer’s assessment tools in use and the way they were being implemented to triage young carers for support. This was contributing to inequity in access to services for some young carers. Experts identified challenges in identifying young carers compounded by many factors including the young carers and families not engaging with statutory services either because they were afraid of unwanted interference or were unaware of their rights to assessments and support; complex and variable pathways to assessment and support and a lack of awareness of the existence of young carers by front line health and social care professionals. This was particularly so for stroke. The final study reviewed and analysed printed and online information for children and young carers of stroke survivors which was compared and synthesized with information for brain injury, Multiple Sclerosis and Parkinson’s disease as comparable neurological conditions. An Appreciative Inquiry approach was taken to identify and build upon best practice in information provision for young carers identified from condition specific information for Multiple Sclerosis and Parkinson’s disease. A gold standard core information set was generated from the information synthesis. Conclusion This PhD provides the first insight into the lives of young carers of stroke survivors. It has started to address the existing knowledge gap by identifying the unmet needs of young carers of stroke survivors. A gold standard core information set has been identified as a potential support mechanism. Health and social care professionals could play a key role in supporting young carers of stroke survivors, but require support to maximise opportunities to adopt a more robust whole family approach by disseminating information, teaching families about stroke and encouraging openness. This could enhance outcomes for young carers by mitigating potential damaging effects of caring and optimise beneficial aspects of caring