With the parents of a child with developmental disability
Parents should be informed as soon as their child’s disability is suspected. Parents are often aware that something is different about their child’s development or learning. It may be helpful to introduce the conversation about the diagnosis gradually, eg ‘I have some concerns about your child’s development’.
The period of diagnosis of a child’s disability can be one of the most challenging for parents. Discuss concerns sensitively and with consideration for family and cultural factors:
- present information in a direct and honest manner
- give a balanced view of the disability and what it may mean for the child’s future
- emphasise the child’s positive features
- ask parents about their main concerns, and check they understand what has been said
- be open if you can’t answer some questions or give specific information; offer your thoughts and the reasoning behind them instead.
Even if the news is upsetting, most parents will want to know as much as possible about their child’s disability (eg cause, prognosis). Ensure there is enough time to answer all the parents’ questions and concerns. Encourage both parents to attend, and include other people on request by the parents. Parents are likely to need repeated opportunities to ask questions and receive detailed explanations over several months. The general practitioner (GP) should schedule a follow-up appointment for discussion and planning after a diagnosis. The grieving or adjustment process may be revived at periods of transition (eg leaving school, puberty); for more advice on supporting carers and family of people with developmental disability, see here.
When professionals are skilled, confident and well-resourced in raising or confirming concerns, it can improve the experience for parents1. Resources (eg books) that tell the story from the perspective of the person with disability can be helpful for parents as well as siblings. Ask about the wellbeing of siblings and encourage discussion with them.
Expectations for the child’s future learning and independence are likely to be established during the diagnostic assessment or over time through understanding the developmental trajectory. This information can assist the family or carers in making decisions for and with their child. Discussing possible interventions (eg physiotherapy, speech pathology, special education) is constructive and reassuring. For advice on interventions to minimise developmental delay and disability in a child, see Support and services for children with developmental disability and their family.