Experiences and Preferences With Pediatric Health Supervision Care Among Family Caregivers of Individuals With Down Syndrome

Abstract

Though pediatric health supervision Down syndrome (DS) guidelines have been established for decades, prior work has shown that primary care providers (PCPs) experience challenges to their adherence and information on family caregivers’ experience with the DS guidelines is lacking. To address this literature gap, our study sought to understand the experiences of family caregivers with health supervision care as related to guideline adherence and patient-family experience. Through semi-structured interviews, we found that most caregivers felt their child’s health care needs were being met but expressed frustrations due to their child’s PCP’s lack of knowledge on the current DS guidelines. Caregivers saw their PCP as the center of their child’s care and desire a partnership to address their child’s DS medical needs while recognizing their child’s personhood beyond their diagnosis. However, participating caregivers typically did not feel their PCPs were fulfilling this role due to a lack of DS knowledge and experience.