Aim: To explore parents views on what information should be given when a child is diagnosed with Type 1 diabetes.
Method: A questionnaire based, mixed quantitative and qualitative pilot study was conducted. All children diagnosed in the previous year were identified. A questionnaire which contained a list of topics recommended by NICE/ISPAD was developed. Parents were asked to complete this after their clinic appointment. They were asked to divide the topics into two categories: to be discussed at the time of diagnosis and those which could be discussed after discharge from hospital i.e. in the clinic/during home visits etc. We looked at the frequency of response to each topic and a greater than 50% frequency for a particular topic was considered significant for inclusion in the respective category.
Results: Thirty-eight questionnaires were completed. There was a clear preference for 24 topics to be discussed at the time of diagnosis. These looked at various aspects of what is diabetes, blood glucose monitoring, use of insulin, diet, hypoglycaemia, management during illness and emergency contact details.
Nine topics were included in the after discharge category. These looked at-long term complications, information about HbA1c, alteration of insulin dose, future developments, disability allowances etc. There was no clear cut preference for 6 topics.
Conclusion: Information given by Diabetes teams, especially consultants varies widely. If the findings of the study give a clear idea, we will be able to tailor the initial discussion according to parental needs. This will avoid information overload and prevent dissatisfaction about being inadequately informed before discharge from hospital.
05 - 07 Nov 2008
British Society for Paediatric Endocrinology and Diabetes