Areas of Interest:
Chronic Illness and Disability
My interest in chronic illness and disability originated through the work on Batten disease (see below) and evolved into an exploration of the place of the impaired body and people with profound multiple disabilities in disability theory and research. This led to two papers, three book chapters and an edited book on chronic disabling illness in the lifeworld (2010). I am currently looking at the provision of dental services for disabled people (2008), clinical measures of case complexity (2008), disclosure of chronic conditions in medical histories (2009), and empowerment in diabetes (2008). I am also working with colleagues to develop a body of work exploring patient-centredness.
My earliest empirical work focussed on the experiences of families living with juvenile onset Batten disease (1997). This research had design input in the family support and care provided in a new service for young adults with Batten Disease. It also led directly to the development of the Batten Disease Family Association (BDFA) that gained charitable status and is now in its 12th year. A follow-up study (2005) provided analysis of current service provision and suggestions for improving patient-centred transition from adolescent to adult care. Practical input in the development of service provision was complemented by family focused research (2004) resulting in support recommendations that are being used as a campaign base for the BDFA. This work has resulted in a series of reports, national and international conference presentations and supported peer reviewed papers and two book chapters.
My interest in later life stemmed from research on an ESRC funded study into loneliness and social isolation in later life (2000). This resulted in a co-authored book (2009) on the social world of older people, focussing on social participation, and a series of papers. I went on to look at barriers to dental care usage for older people (2006) and currently I am focusing on user involvement in research agenda setting amongst this sector of the population (2009).
An ongoing interest in philosophy, social theory and disability theory has led to the application of social theory to my research. I am currently applying the theory of Pierre Bourdieu to my empirical research to provide a wider understanding of individual agency in a doxic field, focussing on impaired and de-legitimated capital accumulation and transactions. This work has led to one peer reviewed paper, and four book chapters.