Inflammatory Bowel Disease (IBD) is a chronic disease with pehods of remission and relapse, as inflammation occurs in the gastrointestinal tract causing symptoms such as diarrhoea, fatigue, abdominal cramps and loss of appetite. This work aimed to validate an instrument to measure quality of life (aoL) in children with IBD and explore family functioning and coping strategies used by children and their parents. A pilot study was conducted to assess the feasibility of adapting the Dutch children's IBD QoL instrument (IMPACT) for the UK population. The response scale was changed from a visual analogue scale to a Liked scale and some wording was modified to make the scale child fhendly. One hundred children took part in a validation study of both paper and computer versions of IMPACT UK. Face validity was good and most patients found the instrument was easy to understand, cleady laid out, not too personal and would complete the questionnaire again. Principal components analysis indicated that a five factor solution was the most clinically relevant and statistically meaningful. The domains were IBD symptoms, Energy, Embarrassment, Worries and concerns about IBD and Body Image, and all had good internal reliability. No difference was found between paper and computer versions of IMPACT. Compahng patients with different levels of disease activity indicated good discriminant ability for the Embarrassment, IBD symptoms and Energy scales. Concurrent validity was confirmed by demonstrating significant correlation between comparable domains in the Child Health Questionnaire and IMPACT. Test retest analysis suggested fair external reliability. Children with IBD scored highest (best QoL) on the Embarrassment domain and lowest on Body image. No differences were found in QoL between gender, disease group and age group. Ninety children with IBD and 87 of their parents/guardians completed coping questionnaires. The most popular coping strategies used by children were cognitive restructuring, wishful thinking and distraction and the least popular were blaming others and self criticism. Resignation and self criticism were more frequently used by older children (13-17 years). Younger males (8-12) used distraction more often than females the same age, yet 13-17 year old females used distraction more than males. Most children reported that cognitive restructuring and distraction helped with a flare up of disease activity. Parents were most likely to use problem solving and social support coping strategies, and least likely to accept responsibility and use confrontive coping strategies. Female parents used confrontive coping and social support strategies more often than male parents. The Family Assessment Device (FAD) showed IBD families were most 'effective' in behaviour control, affective responsibility and problem solving and children thought the family were worse at communication and affective responsiveness than their parents. The IBD families scored similarly on the FAD to healthy families. Semi structured interviews were conducted with one patient with IBD and his mother and the Narrative inquiry technique (NI) was employed to present information in the form of two stories. The stories showed the effect of IBD on the patient and mother within their social setting and highlighted the possibility of leading a 'normal' life with IBD. The coping processes and QoL of the individuals were explored and it was possible to detect the different factors that conthbute to a person's QoL or choice of coping behaviour. This work contdbutes significantly to the knowledge on the psychosocial effects of children with IBD and their families by using complementary methodologies and adopting a patient centred approach to research.

Children continue to experience unrelieved moderate to severe pain post-operatively. Previous studies have suggested several factors to explain this. However, the impact of these factors on practice has not been explored. Nor have children's nurses clinical decision-making strategies been examined. This case study set out to explore the influence of various factors on individual nurses' post-operative pain management practices, and to answer the following questions: • How does the perceived importance of a pain management task impact on practice? • How does theoretical knowledge and its application impact on practice? • How does what nurses say they do compare to what they actually did? • How do nurses make decisions when managing pain in children? The case study used qualitative (participant observation and the think aloud technique) and quantitative methods (questionnaires) to obtain an in-depth picture of children's nurses' post-operative pain management practices. As well as examining some aspects of pain management for the first time, such as nurses' pain-related clinical decision-making, new perspectives were explored in relation to other well researched issues, including whether theoretical knowledge about pain management is applied in practice. The perceived importance of a pain management task did not affect the likelihood of it being undertaken. A good level of theoretical knowledge appeared not to affect the quality of a nurse's pain management practices. A lack of congruence was found between what the nurses said they do and what the nurses actually did. Observational data indicated that nurses generally did not follow current recommendations fully when managing pain. In several areas, the practices of the ward sisters appeared to be of a lower standard than more junior nurses. Nurses appeared to use non-expert decisionmaking strategies regardless of their years of experience or level of academic attainment. A hypothetico-deductive (analytical) model of decision-making seemed to be used. Several strategies, which might facilitate the application of theoretical knowledge in clinical decision-making and practice are considered, including the use of teaching rounds and clinical scenarios. These need evaluating, and further research is needed to identify other factors that affect pain management practices and decision-making strategies. How children's nurses make clinical decisions also needs further exploration. A revised conceptual framework is presented which suggests that, for post-operative pain management practices to be effective, nurses need to have not only the right attitude and the right knowledge but also the ability to make the right decision. However, it is probable that other factors, both individual and collective, are also involved, including ward culture, role-modelling and lack of motivation to change. The revised conceptual framework provides a basis for future research.

Typel diabetes mellitus can affect children of all ages and it is a life threatening life long condition which requires complex and demanding therapies in order to achieve the level of control needed to reduce long term complications. It is therefore important for healthcare professionals to understand, and be responsive to, the unique challenges that children and their parents experience as they live with this condition. The overarching aim of this qualitative study was to explore the experiences of children and their parents living with Type 1 diabetes mellitus and to develop a theoretical understanding of the meanings they ascribed. This aim remained consistent across Phases 1 and 2. However there was a shift from a broad exploration of experiences in Phase 1 to a more detailed exploration of the children's and parents' experiences around the more specific concept of normal in Phase 2. This shift in the aim between Phases 1 and 2 arose entirely from following the data. A phenomenological approach using conversational interviews was adopted. Fourteen children (aged 4-17 years) and their parents from different ethnic backgrounds and at differing lengths of time since diagnosis participated. Ten families participated in Phase One (10 children, 11 parents) and eight families in Phase Two (8 children, 11 Parents), with several participating in both phases. Data were thematically analysed over several cycles utilizing van Manen's phenomenology generating deep and meaningful insight into the experiences of children and their parents living with T1DM. The synthesis of Phase One findings identified 'normal' as being dominant in the lives of the children and their parents thus reflecting the position that diabetes makes families different and their pursuit of 'normal' more visible. 'Normal' was underpinned by four subthemes: transition, attachment, loss and meaning. Normal was a position that the children and their parents strove to attain and was the focus for the second phase of the study. The findings from Phase Two demonstrated the ways in which the everyday lives of the children and parents were shaped by the distinct and discrete understandings of the concepts of normal and different. This is best understood within the theoretical framework of the four phases of realisation which are an inextricable part of the children's and parents' lives. Further to this 'significance' and 'consequence' are crucial elements that influence the ways in which they live with diabetes. Significance and consequence are not fixed linear entities; they are dynamic, responsive and reactive. Although both children and parents experience the significance and consequence of diabetes, their individual focus and experience creates dissonance between them. The main source of tension occurs because children living with Ti DM from diagnosis onwards perceive themselves to be 'normal but different' whereas parents perceive that their child is 'different but normal'. The challenge facing health care professionals involved in the delivery of type 1 diabetes care for children is to move solely beyond the medical management and to understand the complex emotional and psychosocial demands that arise from the dissonance between the perceptions of children and their parents of Normal but Different, Different but Normal'.