Abstract
Background
Children with type 1 diabetes (T1D) experience poor glycaemic control. Among non-adolescent children, parents assume much responsibility for managing diabetes and attaining blood glucose levels within clinically recommended target ranges. We explored parents’ experiences of managing their child’s diabetes and reasons for treatment non-adherence in order to identify better ways to support them.
Methods
In-depth interviews with 54 parents of children with T1D (aged ≤ 12 years), recruited from four Scottish paediatric diabetes clinics. Data were analysed thematically.
Results
Parents worried about their child’s poor ability to detect and report hypoglycaemia and finding their child dead in bed. To address their fears, parents extensively monitored blood glucose and closely supervised their child to detect signs of hypoglycaemia. Parents described situations when their child’s blood glucose levels were difficult to control (e.g. at school; other people’s houses) and lacking confidence in others to provide care. They also highlighted difficulties keeping blood glucose levels stable when their child experienced growth spurts, hormonal surges, and minor illnesses. Parents described using flexible treatment approaches to minimise the psychological impact of T1D on their child. Most reported utilizing two sets of blood glucose targets, with clinically recommended targets used when they could supervise their child and higher targets when they were in other people’s care. Parents also elevated targets to minimise distress to others and to address worries about nocturnal hypoglycaemia. Parents described needing consultants to provide more empathic support tailored to their child’s needs and family circumstances, and training to engage with health professionals more effectively and bring their own experiences and expertise into consultations.
Conclusions
Other caregivers (e.g. relatives and teachers) should be provided with training in diabetes management. Empathy training for health professionals and skills training for parents could help them engage in shared decision-making in consultations. Further research should be undertaken with children to explore ways to help them better detect hypoglycaemia as could use of new technologies such as closed loop systems.
Children with type 1 diabetes (T1D) experience poor glycaemic control. Among non-adolescent children, parents assume much responsibility for managing diabetes and attaining blood glucose levels within clinically recommended target ranges. We explored parents’ experiences of managing their child’s diabetes and reasons for treatment non-adherence in order to identify better ways to support them.
Methods
In-depth interviews with 54 parents of children with T1D (aged ≤ 12 years), recruited from four Scottish paediatric diabetes clinics. Data were analysed thematically.
Results
Parents worried about their child’s poor ability to detect and report hypoglycaemia and finding their child dead in bed. To address their fears, parents extensively monitored blood glucose and closely supervised their child to detect signs of hypoglycaemia. Parents described situations when their child’s blood glucose levels were difficult to control (e.g. at school; other people’s houses) and lacking confidence in others to provide care. They also highlighted difficulties keeping blood glucose levels stable when their child experienced growth spurts, hormonal surges, and minor illnesses. Parents described using flexible treatment approaches to minimise the psychological impact of T1D on their child. Most reported utilizing two sets of blood glucose targets, with clinically recommended targets used when they could supervise their child and higher targets when they were in other people’s care. Parents also elevated targets to minimise distress to others and to address worries about nocturnal hypoglycaemia. Parents described needing consultants to provide more empathic support tailored to their child’s needs and family circumstances, and training to engage with health professionals more effectively and bring their own experiences and expertise into consultations.
Conclusions
Other caregivers (e.g. relatives and teachers) should be provided with training in diabetes management. Empathy training for health professionals and skills training for parents could help them engage in shared decision-making in consultations. Further research should be undertaken with children to explore ways to help them better detect hypoglycaemia as could use of new technologies such as closed loop systems.
| Original language | English |
|---|---|
| Pages (from-to) | 70 |
| Journal | European Journal of Public Health |
| Volume | 24 |
| Issue number | Suppl2 |
| Publication status | Published - 24 Oct 2014 |