How important is the physician in an era of digitalization and alternative information sources? A survey among parents of children with developmental disorders.

UNLABELLED

A developmental disorder can lead to major issues in daily life of affected families. As physicians' time is limited, parents often look for alternative sources of information. We aimed at investigating parents' preferences and judgement regarding different sources of information. At the neuropediatric outpatient department of a university hospital, we conducted interviews with parents of children with a developmental disorder. Altogether, 83 parents took part in the interview. At the time of the interview, 12/83 (14%) of the parents lacked confidence in managing their child's diagnosis in daily life, of whom 10/12 (83%) had the diagnosis for one year or more. Parents most frequently received information about the diagnosis from the physician (48/83; 58%), from the internet (22/83; 27%), or from the early intervention center (6/83; 7%). They judged the physician (32/83; 39%), the early intervention center (16/83; 19%) and the internet (12/83; 14%) as most helpful for handling their child's diagnosis.

CONCLUSION

The physician is still the most important source of information for parents of children with a developmental disorder. The internet and early intervention centers are also crucial for parents to gain information about the condition and handling it in daily life.

WHAT IS KNOWN

• Developmental disorders can have a major impact on the life of affected families. • Parents can be supported in accepting the condition by various players of the healthcare system.

WHAT IS NEW

• For parents, the physician plays a crucial role in dealing with the condition in daily life. • Some parents consult the internet and early intervention centers more often than the physician.