"No Words Needed": Results of a Survey on How Parents of Children With Neurodevelopmental Disorders Perceive (In)formal Peer Support.

The questionnaire was written for this study rather than a validated one, so it may not have asked the right questions. The authors tried to offset this by developing it with parents who had lived experience. It was spread online through social media and parent organisations, so parents without computer skills or Dutch literacy were likely missed, and parents already interested in peer support were more likely to take part. 200 of the 225 parents were mothers, and most were middle-aged and highly educated, so fathers, younger parents and less educated families are barely represented and the results may not fit them. A survey with fixed questions gives less depth than interviews or focus groups would, and the answers are what parents chose to report about themselves. The paper gives two different figures for how many parents found peer support through a healthcare provider: 31.3% in the results and 12.4% in the discussion. The survey describes what parents say now. It does not test whether peer support changes anything, and the authors say further research is needed on whether it contributes to parents' well-being and whether healthcare professionals have a role in it.

The authors declare no conflicts of interest. The text supplied does not say who funded the study.

Do not read these percentages as how common these views are among Dutch parents of children with neurodevelopmental disorders. The survey was filled in online by parents recruited through social media and parent organisations, and 200 of the 225 who answered were mothers, mostly middle-aged and highly educated, so parents outside those networks are under-represented.