The Role of Emotion in Caregiving Information Processing and Sensemaking for Parents of Children With Intellectual and Developmental Disabilities

Abstract

Parents of children with intellectual and developmental disabilities are frequently given news that is difficult to hear and can be very traumatic. Whether receiving an initial diagnosis for their baby or learning about guardianship options for their adult child, emotional reactions almost always occur, especially because of the interdependent relationship they have with their child. These emotions likely impact the meaning parents give to information and decisions they make for their children throughout their lives. Medical, education, and other support providers sometimes assume parents can objectively receive information that frequently is communicated in a technical and clinical way. They may not give parents the time to emotionally process what they have learned, limiting their ability to care for their child. This chapter presents the results from a series of focus groups with 21 parents of children with intellectual and developmental disabilities of varying ages. The participants discussed their emotional reactions to information communicated to them about medical, educational and social concerns related to their children. In addition, they discussed how emotions impacted their information processing and sensemaking as they gave meaning to what they learned. Analysis of the results identified eight emotion-based information processing and sensemaking themes that are described in detail. The discussion section provides an enhanced explanation for emotion's role in parental information processing and sensemaking. In addition, recommendations for providers communicating emotional information to parents are provided.

Citation

Hart, Z.P. (2024), "The Role of Emotion in Caregiving Information Processing and Sensemaking for Parents of Children With Intellectual and Developmental Disabilities", Ciciurkaite, G. and Brown, R.L. (Ed.) Disability and the Changing Contexts of Family and Personal Relationships (Research in Social Science and Disability, Vol. 15), Emerald Publishing Limited, Leeds, pp. 121-137. https://doi.org/10.1108/S1479-354720240000015009