The effects of including choice among medical activities on fear-related avoidance behavior related to medica/physical exams with children who have high support needs

Abstract

Medical visits are up to six times more frequent for individuals diagnosed with autism spectrum disorder (ASD) and Intellectual and Developmental Disabilities (IDD). Unfortunately, children with ASD and/or IDD are more likely to be subjected to invasive methods during medically related visits, such as restraints or sedation which can in turn increase the likelihood of fear-related behavior or non-adherence which then can lead to significant negative effects to their healthcare. The purpose of the current study was to get information on parent´s/caregiver´s view and general experience at doctor´s appointments with their children with high support needs and to evaluate the effects of including choice among medical activities on fear-related avoidance behavior during medical/physical exams with three children with high support needs. This study was therefore two-phased 1) an electronic survey and 2) experiment with two conditions, choice condition and stimulus fading. Results for phase 1 show that from the 16.20% response rate, under 1/3 of parents/caregivers said their child needs anesthesia during minor inspections and nearly half said they avoid bringing their child to the doctor´s because of their or their child´s negative experience. Additionally, over 3/4 have experience in having to hold down their child or use physical restraining during medical exams. Results for phase 2 indicate that choice was effective in facilitating medical adherence and attenuating fear-related avoidance behavior for all three participants, and stimulus fading was necessary for one task for one participant. Practical limitations and strengths to the current study and implications for future research will be discussed. Keywords: Medical/physical exams, medical adherence, fear-related avoidance behavior, choice, stimulus fading, autism spectrum disorder, high support needs.