Abstract
BackgroundParents of non-adolescent children with type 1 diabetes are responsible for most of their child’s diabetes management tasks. Consultations are used to provide diabetes education, review clinical progress and promote diabetes management tasks. This study explored parents’ experiences of, and views about, their child’s diabetes consultations. The objective was to identify ways in which consultations could be improved to aid communication, understanding and knowledge retention.MethodsIn-depth interviews with 54 parents of children (aged ≤12 years) with type 1 diabetes. Data were analysed using an inductive thematic approach.ResultsParents’ accounts revealed structural and contextual factors which could hinder effective communication and knowledge acquisition during consultations. Most reported feeling anxious going into consultations and worrying about being reprimanded by health professionals if their child’s glycaemic control had not improved. As a consequence, many parents highlighted problems concentrating and assimilating information during consultations. In extreme cases, worries about being reprimanded led parents to omit or fabricate information when discussing their child’s treatment or even to their cancelling appointments. Many parents described wanting opportunities to speak to health professionals alone because young children could be distracting and/or they did not want to raise distressing issues in front of their child. Parents described the benefits of receiving clinical advice from health professionals familiar with their family circumstances and disliking attending busy clinics and seeing different health professionals on each occasion. Parents also highlighted the benefits of receiving treatment recommendations in a written form after the consultation.Discussion and conclusionsThis study has highlighted unrecognised and undocumented aspects of the consultation which may result in parents leaving uncertain about the main issues discussed and with questions unanswered and support needs unaddressed. Structural and contextual changes to consultations are recommended to improve concentration, knowledge acquisition and retention. These include: sending letters/written summaries after consultations highlighting key decisions, providing opportunities for parents to consult health professionals without their child being present, encouraging parents to ask more questions during consultations, having procedures in place to promote continuity of care and providing parents with consistent and non-contradictory advice.
Highlights
Parents of non-adolescent children with type 1 diabetes are responsible for most of their child’s diabetes management tasks
As studies of consultations involving adult patients have shown, there may be significant disagreement between participants and health professionals about what they consider the main outcomes of diabetes consultations to be and participants may leave their consultations with questions unanswered [5, 6], with detrimental implications for their diabetes management practices [5, 6]
While some consultants were praised for their clear delivery of information, several parents pointed to their excessive use of complex medical terminology which they could find alienating and bewildering
Summary
Parents of non-adolescent children with type 1 diabetes are responsible for most of their child’s diabetes management tasks. Amongst non-adolescent children, parents assume overarching responsibility for a complex array of diabetes management tasks, including: checking their child’s blood glucose levels, calculating and administering insulin doses, carbohydrate counting, and preventing hypoglycaemia and hyperglycaemia [4]. In keeping with the broader literature on adult consultations, studies of paediatric diabetes consultations have tended to focus on health professionals’ consultation skills and communication styles and how these could be capitalized upon and/or improved to promote parental knowledge, confidence and experience [10, 13, 14]; optimize health care delivery [12, 14]; and, improve the child’s clinical outcomes [12, 14]
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