- Relay a diagnosis with compassion and an appropriate degree of hope for the child and parents. Research findings show that the manner in which a diagnosis is explained to parents can have a profound and prolonged effect on the parent’s attitudes toward their child and professionals.
- Ask parents how much and what types of communication they find helpful and build rapport with honesty and caring.
- Encourage parents to ask questions and express their emotions.
- Know the resources available to assist the child and parents.
- Try to determine each time you communicate with the parents their level of adjustment and assess what they have been able to internalise and understand regarding what you have discussed.
- Reinforce the practice of parent participation in helping their child learn and develop.
- Readily admit to unknowns and seek answers to parents’ inquiries.
- Understand and accept parental ascendance through the stages of adjustment as being a normal process and support them. However, adjustment can speed the process of achieving acceptance. It can, in turn, provide educators and related personnel with a majority of knowledgeable and supportive parents to assist them in the demanding tasks of reasonably meeting all children’s needs.
(From an article by William C. Healey (1996) Helping parents deal with the fact that their child has a disability, CEC Today 3 (5); reprinted on the Learning Disabilities OnLine website: www.ldonline.org).
It is vital that the difficult information of diagnosis is imparted truthfully, but sensitively, and in privacy—not in corridors, open or public areas, or standing in a ward. The information should be given to both parents at the same time, allowing time for them to understand what is said. Complex medical/technical language should not be used. The same information should be repeated after a period, and parents need to be assured that they are free to access further explanations whenever they need/want them.
IF THERE IS NO DIAGNOSIS
For those families who have a child with an apparent intellectual or physical disability that remains undiagnosed, Contact a Family, the UK-based charity which provides invaluable information to families living with disability, have produced a factsheet on ‘Living without a diagnosis’. The full text of the factsheet can be viewed on the organisation’s extensive website: www.cafamily.org.uk.
‘WHAT DO I DO NOW?’
‘What do I do now?’ is a helpful booklet produced by the Parents Future Planning Group (based at St Michael’s House) in 2000, with the assistance of the Health Promotion Unit. The booklet provides practical advice for parents whose child has been diagnosed with a disability—in the areas of personal feelings and grief, dealing with professionals, telling relatives and friends and addressing the needs of other children in the family. The booklet’s reference information on entitlements and contact numbers may be slightly dated three years on, but the general information in the booklet remains very valuable—the booklet should be available in hospitals and health board clinics, and copies are available by contacting: ……..