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Leisle Ezekiel is a research student in the Department of Sport and Health Sciences. She joined Oxford Brookes in 2014 and her thesis title is 'Fatigue after acquired brain injury'.
I am a lecturer on the Occupational Therapy programme at Brookes and started a part-time PhD in October 2014.
As an employee of Brookes, I have been able to take advantage of the Staff Development Scheme, which means my course fees are funded by the University.
It has long been an ambition of mine to study for a PhD and become research active. I was extremely pleased to find that my research interests matched with the research interests at Brookes' Centre for Rehabilitation.
I have worked as an occupational therapist in the NHS, more recently as a lecturer at Brookes and also as a brain injury case manager.
I have really enjoyed my first year of study. The research staff and students have been welcoming, friendly and supportive. Working part time and studying part time brings its own challenges but I definitely feel part of the team. I have a family at home, so having a quiet dedicated space to work and study at the Gipsy Lane site has really helped with my progress.
My research project focuses on understanding the impact of fatigue on participation in daily life, after an acquired brain injury.
It is currently estimated that there are currently over 1 million people in the UK living with acquired brain injury (ABI) (Headway 2015). ABI results in changes in physical, sensory, cognitive, psychological and emotional functioning and have long term consequences for the persons’ relationships, participation in leisure and work, as well as their quality of life (Dijkers, 2004, Naess et al., 2006).
Fatigue is a prevalent, persistent and distressing symptom of brain injury with estimates of the prevalence of fatigue varying between 20 and 80% (Visser-Keizer 2015). Longitudinal studies have found that some survivors of ABI continue to experience problematic fatigue for many years (Cantor, Gordon and Gumbar, 2013)
ABI has long term consequences for participation in work, leisure and social activities but the relationships between fatigue, ABI and participation are not well understood (Dijkers, 2004) (Naess et al., 2006). Hence there is a need to review the factors affecting participation after brain injury and to develop a conceptual model of the mechanisms by which fatigue influences a person’s activities and participation. Preliminary review of the literature indicates that, whilst the studies have investigated fatigue and participation after ABI, the relationship between them is not well understood.
Listening to ABI survivors discuss their experiences of fatigue, it becomes apparent that their experiences are not sufficiently represented in current fatigue measures (Visser-Keizer 2015). Both the contextual aspects of fatigue and the “balancing act” between fatigue and the demands of daily life have not yet been explored. A better understanding of the how ABI survivors negotiate their daily activities (within the context of their fatigue) would support the development of more effective interventions, particularly around self- management strategies.
Despite the prevalence and impact of fatigue after brain injury, there are currently few evidence-based interventions for fatigue and their development has been limited by our understanding and measurement of fatigue (McGeough et al., 2010)( Lerdal et al 2009).
Fatigue after ABI is most commonly measured using self- report measures and questionnaires (Tyson and Brown, 2014). In healthcare practice, fatigue assessment is supplemented by use of paper-based diaries and self-rating scales. Current methods of measuring fatigue are affected by issues of recall on behalf of the person with ABI (as the measures are asynchronous) and often fail to represent the experiences of ABI survivors (Visser-Keizer 2015). Paper diaries have uncertain reliability and validity and may be intrusive, requiring often hourly accounts of activities and fatigue responses (Huguet et al., 2015).
Electronic diaries and apps potentially overcome some of the issues encountered with paper diaries and are increasingly being used within health care. However, the quality and psychometric properties of such assessment tools are mostly unestablished (Huguet et al., 2015). New and emerging technologies for continuously monitoring physiological states, behaviour and experiences offer the opportunity to improve on established methods of assessing fatigue after brain injury
Consequently, there is opportunity for a robust, non-intrusive and synchronous method for assessing fatigue in daily life, one that is able to provide sufficiently rich information about a person’s experience of fatigue so as to inform the development of effective interventions and support self- management of fatigue.
My PhD consists of 3 studies.
Study 1: A systematic review of the strengths and associations of factors affecting participation after stroke.
Study 2: Is an investigation in to the experiences of people who have experienced ABI and fatigue, and their carers, using semi structured interviews.
It is envisaged that a sample of approximately 20-30 people will be needed for interviews. The sample needs to be purposive and heterogeneous to capture the possible range of experiences of fatigue after ABI and allow for data saturation (Ritchie et al 2003). The interviews will be analysed from a constructionist perspective, using the Framework Method. The Framework Method is an established and systematic approach to qualitative data analysis that supports transparency and rigour in the analytical process (Gale et al., 2013).
The interview data analysis will support the development of measures capturing subjective experiences of fatigue, the context and patterns of fatigue as well as determining the behavioural and physiological manifestations of fatigue.
Study 3: Using participatory and iterative research design, this study aims to develop measures to assess participants’ experiences of fatigue, activity levels and other relevant behavioural or physiological data over time.
The study will also establish the utility of data collection methods and psychometric properties of measures developed.
Recruitment: It is envisaged that a sample size of between 25 to 50 participants is necessary for an initial investigation of psychometric properties.
Analysis will establish the initial psychometric properties of measures developed and explore associations between experiences of fatigue and participation. The study also aims to seek participant’s experiences of using the assessment tool.
For me the key challenges of studying for a PhD are around time management and also finding the right academic level. I have to balance teaching, studying and family life so this requires me to be extremely organised and disciplined. The discipline part though is easier because I love what I do and I feel passionate about the areas that I am researching.
My primary goal is to develop my research skills. I would like to continue my research post, hopefully building on the work I am currently doing.