Families' lived experience one year after a child was diagnosed with type 1 diabetes

Aim. This paper is a report of a study to elucidate families' lived experience of diabetes one year after a child was diagnosed with type 1 diabetes. Background. The incidence of type 1 diabetes is rapidly increasing worldwide, with a shift towards younger age groups. This illness is treated by means of an intensive management regimen that often disrupts the child's usual activities and requires disease-focused behaviours from the child and his or her family. However, research elucidating families' lived experience from the perspective of all its members is sparse. Method. A hermeneutic phenomenological study was carried out in 2004, based on interviews one year after diagnosis with 11 consecutively chosen Swedish-speaking family members with children aged between 9 and 14 years. Findings. The families described their one year of lived experience as living an ordinary yet different life. They experienced their lives to be neither particularly difficult nor as easy as they had been before the child was diagnosed with diabetes. Related themes were 'feeling acceptance yet frustration', 'being healthy yet invisibly ill', 'feeling independent yet supervised' and 'feeling confident yet insecure'. Conclusion. It may be helpful if healthcare professionals make use of the knowledge and experience of families living with the illness to meet their specific needs, especially when the affected child is experiencing fluctuating blood sugar levels. Thus, health-promoting collaboration should be tailor-made for every individual and proceed from each family's everyday life.