Living with type 1 diabetes: perceptions of children and their parents

Abstract

Aim.  To explore and describe the experiences of children and their parents living with type 1 diabetes mellitus from diagnosis onwards.

Background.  Type 1 diabetes mellitus is a psychologically and behaviourally demanding chronic condition that necessitates children and their parents taking extensive responsibility for managing the condition. Diabetes management involves maintaining a highly effective level of treatment to reduce the risks of short- and long-term complications. Treatment is carried out in the context of daily life, but little research evidence is available about this experience.

Design.  A phenomenological study using conversational interview.

Method.  A purposive sample of 10 children, (aged 4–17) living with type 1 diabetes mellitus and their parents participated in this study. Participants were from different ethnic backgrounds and at differing lengths of time since diagnosis. Data were generated through conversational interviews and analysed using thematic analysis.

Results.  The central theme that was identified was ‘normal’. This was underpinned by four subthemes: transition, attachment, loss and meaning. The notion of ‘normal’ is dominant in the lives of these children and their parents because diabetes not only makes these families different, but also makes their pursuit of ‘normal’ more visible.

Conclusion.  These findings highlight that, despite different cultures, ages and lengths of time since diagnosis, families living with diabetes share very similar experiences. Understanding how children and parents create meaning and how this meaning influences their actual and potential health problems, is important if the provision of healthcare is to be effective in meeting their needs.

Relevance to clinical practice.  Conducting child- and parent-centred qualitative research allows exploration of the perceptions and understanding of type 1 diabetes mellitus and the meaning ascribed by children and their parents who live with the condition. Diabetes is a lifelong, life-threatening condition that has a significant impact on children’s and parents’ lives. Developing a deeper understanding of their lives and experiences will enable the delivery of nursing care to meet their specific needs.