The diagnosis of intellectual disability in a child is one of the most stress-inducing events in life (Baxter, Cummins and Pollack 1995). The period following the diagnosis is a formative time when parental attitudes, values and expectations can be hugely influenced, for better or worse. What happens during this period is therefore of great importance for the future lives of parents and child.
Mohammed and Girvin (2002) reviewed the studies that have looked at how neurological bad news is broken to parents by doctors. They concluded that for many parents emotional shock and upset were followed by depression after they had learned the news. The reactions of parents when they were told that their child had a physical disability were examined by Kerr and McIntosh (1998). They found that parents felt shock, numbness and devastation on initially hearing the news in the maternity hospital. One mother said: ‘I was petrified because I didn’t know what to expect’ (p.228); another said: ‘I just cried the whole time I was in hospital’ (p.229). Fathers also found the initial diagnosis difficult. One said: ‘Basically I freaked out…I cried like I have never cried before’ (p.228). Often fathers tried to support their wives to get through the initial period in the hospital and to get home. The job of telling relatives and friends seemed to fall mostly to the fathers, some of whom hid their grief and grieved alone.
A diagnosis of intellectual disability may emerge later in the child’s life, as he or she starts to mature. However, the reaction process of parents seems to be quite similar—they experience initial shock, numbness, disbelief and denial. This period seems to be followed by a time when emotional confusion reigns—parents don’t know what they feel as they balance all the positives in the baby’s life along with their disappointment, grief and, in some cases, guilt. Finally parents reorganise their feelings—and to some extent their lives—and acceptance and the restoration of a new equilibrium occur (Kerr and McIntosh 1998).
Some healthcare professionals understand the importance of how the news is broken to parents, but others do not. Some are skilled in engaging with parents at this most crucial of moments, but others are not. Most of the literature seems to suggest that the memory of the diagnosis of a disability is firmly imprinted in parents’ minds and that it stays with them for the rest of their lives. This, then, is an extremely important period when strong negative or positive feelings may come to the fore and influence the family’s life for a long time to come. It is vital that best practice is applied consistently in each situation, most particularly because parents’ differing personal feelings about a diagnosis of disability will mean that no two disclosure events will be the same.
Good practice guidelines
Two psychologists asked the parents of 16 children, most of whom had Down Syndrome, about their experiences of the disclosure of a diagnosis of disability in their infants and what they thought were the most important factors in helping them cope with the news. They found that it was important for parents to be told straightaway, even if it was only a provisional diagnosis. Parents indicated they needed time to get over the shock. It was also important to be told together and in private. Furthermore, parents wanted clear unambiguous information and continued contact and support (Woolfe and Bartlett 1996).
Other studies support the view that the way in which the news is broken to parents influences their emotions, beliefs and how they feel about their child (Mohammed and Girvin 2002). These researchers also found that it was important to parents to get a clear message and that the news giver should be able to answer their questions knowledgeably.
Baxter, Cummins and Polak (1995) found that it is important to parents that the nature of the supports they receive should reflect their changing needs as they come to terms with their new lives. Thus parents may need follow-up interviews, discussion in a sympathetic and honest manner (Kerr and McIntosh 1998), referral to and access to services, and practical support and guidance.
A new baby in a household is a life-altering event; if the child receives a diagnosis of intellectual or physical disability, then parents’ expectations are altered irrevocably. Some parents may accept the situation equably and come to terms with it quite easily; most will not. Most parents will struggle to accept the situation and will need all the support they can get from professionals. In laying the foundation for this process it is necessary for all healthcare professionals to recognise the critical importance of how the news is broken to parents, so that—as Kerr and McIntosh (1998) put it—they can be enabled to make a ‘safe passage through the emotionally difficult early days’.