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

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

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