Focal epilepsy in childhood is associated with increased risk for developing behavioral, emotional, cognitive and social–adaptive impairments. The present thesis focused on mental health difficulties in paediatric refractory focal epilepsy. It undertook a detailed evaluation of the predictive power of several demographic (gender, age at assessment), clinical (age at onset and duration of epilepsy, seizure frequency), localization (lobe and lateralization of pathology) and cognitive variables (performance in intellectual, memory and academic attainment measures) for mood, conduct, inattention/hyperactivity and peer relationship difficulties, as assessed by parental report. Data from a population of 282 children and adolescents, previously collected for clinical purposes, were examined, using a series of univariate and multivariate analyses. Mental health difficulties were found to be highly prevalent, with peer relationships the most frequently reported area of difficulty, followed by inattention/hyperactivity and emotional difficulties. Different patterns of associations between the variables examined here and individual emotional/behavioural difficulties were revealed, partially confirming and extending previous findings in the literature. Longer duration of epilepsy was found to increase the risk for developing emotional difficulties; male gender and earlier age at onset the risk for conduct difficulties; male gender, earlier age at onset, longer duration and frontal lobe localization the risk for attention/hyperactivity difficulties; and finally longer duration, higher seizure frequency and right hemisphere lateralization the risk for peer difficulties. Lower cognitive functioning was found associated with overall increased mental health difficulties and a lower VIQ was predictive of all types of difficulties. Developing a firm understanding of the risk factors that contribute to mental health comorbidities in focal paediatric epilepsy can help identify and provide assessment and intervention to children who are at higher risk earlier, thus significantly improving quality of life.

Yes / This paper explores issues of partnership and participation in research and evaluation, drawing on the experiences of evaluating a move from hostel accommodation to independent supported living for people with mental health difficulties or learning disabilities. The service change project involved a partnership between a local authority and a housing association with over 300 people moving into their own tenancies in newly-built flats and bungalows. The accompanying evaluation was designed on a model of service user participation and action research and was specifically concerned to explore the impact of the changes on people’s actual or perceived social inclusion into local communities. Ten service user and carer researchers, some of whom were directly involved in the move from hostel to independent living, were recruited and worked with ‘professional’ researchers to examine both the process and the outcomes of the move. The work will be viewed through the insights offered by feminist, transformative and participatory approaches to research. The ‘positioning’ of the researcher in relation to boundaries and the construction of the ‘other’ will be considered, emphasising an approach grounded in reflexivity and an acknowledgement of the complex ethical issues involved. A key feature of this study has been the negotiation involved between a complex change project and a participatory evaluation design. Learning points from the work so far will also be considered in terms of their wider application in future evaluations of complex change projects that involve multiple stakeholders.