Disclosure of disability: exploring the perspective of parents

To explore the perspective of parents with regard to disclosure of disability and early follow-up care.

The research approach was hermeneutic phenomenology. Data were collected using focused interviews that were audio-taped, transcribed and interpreted.

Scotland.

The parents of 63 children born with a congenital limb deficiency.

The findings demonstrate the complexity and variability in parental response. Additionally, what is shown is that disclosure was often handled poorly and that the support offered during the stay in the maternity unit was frequently inadequate.

In order to handle disclosure effectively, health professionals require appropriate education and training and it is recommended that innovative ways of encouraging discussion and debate are sought.