'Normal but different, different but normal.' Children's and their parents' perceptions of living with diabetes

Abstract

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'.