Young carers of stroke survivors

Cameron, Trudi M. (2018) Young carers of stroke survivors. PhD thesis, University of Nottingham.

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Abstract

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.

Item Type: Thesis (University of Nottingham only) (PhD)
Supervisors: Walker, Marion
Fisher, Rebecca
Aldridge, Jo
Keywords: Carers; Stroke survivors; Support for carers
Subjects: W Medicine and related subjects (NLM Classification) > WL Nervous system
Faculties/Schools: UK Campuses > Faculty of Medicine and Health Sciences > School of Medicine
Item ID: 55576
Depositing User: Cameron, Trudi
Date Deposited: 12 Apr 2019 13:37
Last Modified: 07 May 2020 13:45
URI: http://eprints.nottingham.ac.uk/id/eprint/55576

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