Pediatricians often have to be the bearers of bad news, such as telling parents that their child has a disability. Doing so in a helpful and constructive way can be challenging, but doing a poor job can cause unnecessary distress for everyone involved.
A newly published paper outlines a method, dubbed SPIKES, to help facilitate this kind of communication in the best way possible — for example, in sharing a diagnosis of cerebral palsy with a child’s parents.
Titled “Best practice guidelines for communicating to parents the diagnosis of disability,” the paper was published in the journal Early Human Development.
SPIKES is an acronym, with each letter corresponding to sequential steps in the process of communicating a diagnosis of disability to parents.
The first step is Setting up the interview. This includes both facilitating an appropriate environment — allowing for sufficient time, with all relevant parties present, for example — as well as the mental work of preparing for questions.
The next step is assessing the family’s Perception. The researchers stress that it is important to “ask don’t tell” in order to ensure that the information is actually being communicated and fully understood. This also will help clear up any misconceptions. They advise the use of open-ended questions to evaluate what the parent already understands. Questions such as “What have you been told so far? What is your understanding of why we did the MRI?” can help establish communication, the researchers said.
Next is obtaining the family’s Invitation. This involves directly opening up lines of communication for parental questions and concerns. “It should be explicitly communicated that the clinician is willing to listen the parents’ questions both now and in the future, and that the questions will be answered openly and honestly,” the researchers said.
The fourth step is giving Knowledge to the family. It is recommended that clinicians warn parents ahead of time that difficult news is coming, as this can help “soften the blow.” When information is actually imparted, it should be done “using simple, direct, jargon-free language, with a hopeful, empathic and supportive tone.” It’s recommended that information conveyed verbally is also written down. This can help the information be absorbed over time, and more completely. It also will help ensure that the information is accurate when conveyed by the family to others.
The fifth step is to respond to the family’s Emotions empathetically. It is normal to experience things like sadness, and anger in response to bad news. This should be acknowledged, and clinicians should do their best to validate whatever emotions are being felt, without passing judgment.
The final step in SPIKES is Summary and Strategy: reviewing the information that has been conveyed, and outlining the plan going forward. “Parents will want to help and feel compelled ‘to act, to try to do something, anything, not just to sit and watch,'” the researchers said. “Therefore make sure the session ends with something practical and helpful they can do.”
The researchers also noted that it is important to foster acceptance in caregivers, while simultaneously giving them the information, tools, and support they require to best care for their child and to maintain quality of life for the family as a whole.
“Clinicians should support parents to shift from ‘watchful waiting’ to ‘active change’ and ‘acceptance’. Parents require detailed information about the diagnosis, treatments, prognosis and supports,” they concluded.