Can we apply this tool to our children with severe developmental and cognitive disabilities?
When children are in a minimally conscious state after a severe acquired brain injury, their responses may be subtle, inconsistent, and hard to interpret.  This paper describes procedures used to assess preferences in order to individualize care and treatment in a rehabilitation hospital.  The goal is “…to promote and maximize arousal, responsiveness, and interaction with the the environment.”   Stimuli which are preferred can also be used to reduce agitation and increase tolerance for treatment.

A structured interview (provided in the appendix of the article) was developed for caregivers, to obtain information about the child’s preferences before and since the brain injury.  Staff members on the rehabilitation team are also surveyed for their observations and encouraged to report subtle and emerging responses.  Psychology staff develop an individualized list of approximately ten items to be evaluated for each child.  The assessment is done with one or two observers present to watch for a variety of behavioral responses when items are presented three times in random order.   Assessment results are used during individualized treatment sessions and may motivate the children and improve their quality of life. Three cases are discussed.  

It is a pleasure to see that this assessment seeks further information about responses that are subtle or inconsistent, rather than assuming that such reactions are meaningless if not evident consistently.  Assessments are repeated when it is believed that this could be helpful in order to revise recommendations.  Meaningful stimuli are used during treatment to maximize effectiveness.  The assessment and treatment could be enhanced if hospital caregivers (nurses, aides, and anyone else who interacts with the child) as well as parents and rehabilitation staff are asked about observed responses and if all are guided (more that the paper suggests) in using the results of the assessment during interactions with the child.   

A similar concept and evaluation could be used for children (and adults) with cerebral palsy and a variety of syndromes whose responses are difficult to interpret.  The references for the article include preference assessments for individuals with severe developmental disabilities/profound multiple disabilities.  Observing, interacting, and noticing all possible responses is always appropriate!

Naomi Lorch, Ph.D.
Amari, A., et. al. (2017). Conducting Preference Assessments for Youth With Disorders of Consciousness During Rehabilitation. Rehabilitation Psychology. Vol. 62, No. 3, 227-237.