Novel model helps break bad news to people with intellectual disabilities
MedWire News: A researcher has developed a model for breaking bad news to people with intellectual disabilities (IDs).
The novel approach, outlined in Palliative Medicine, has been designed to "meet the needs" of this cohort of patients, says Irene Tuffrey-Wijne of St George's Hospital in London, UK.
"The task of breaking bad news is even more challenging if the patient or relative has IDs," she explains. "Guidelines around consent to treatment stipulate that patients should be given information they want or need in a form they can understand, using additional support if necessary."
Tuffrey-Wijne conducted a study to analyze the preferences of people with ID, family carers, and health and social care professionals, and to identify the factors affecting the communication of bad news and explaining illness and prognosis to these patients; from this a model was constructed.
Participants were selected to represent a wide range of viewpoints, and included 21 people with mild to moderate IDs, 28 family carers, 26 ID professionals, and 34 general health professionals. ID was defined as an IQ below 70 along with significant limitations in adaptive behavior originating in the first 18 years of life.
The participants took part in focus group meetings, online focus groups, and one-to-one interviews. The "bad news" situations discussed ranged from terminal illness or bereavement, to transition changes such as moving house.
Turffrey-Wijne found that deciding whether or not to disclose the bad news was a common theme. For example, a father with a son with moderate IDs said: "If [my son] was to ask us what's going to happen to me, I think I'd lie for his own good… I can't see the point in telling the end situation."
The three elements identified as having an important impact on how the news is broken were: the person's individual intellectual capacity, the people involved and their own views on disclosure, and the support available to all people involved.
These three factors were included in the final model along with a central theme entitled "building a foundation of knowledge." This concept is based on how people with IDs must build their understanding gradually and how clinicians can help them achieve this. For example, the model suggests doing this by breaking down information into chunks that can be given gradually.
Feedback from the study cohort in terms of the model was in "unanimous agreement." For example, two parents described it as "realistic, inclusive, personalized, and respectful to all parties involved at every stage."
The author concludes: "The new model is as yet theoretical, and now needs to be tested widely with a population of patients who have IDs using robust outcome measures."
By Chloe McIvor