The Lived Experience of Parenting Children with Tourette's Syndrome: A Phenomenological Study
Year: 2008
Type: article
Abstract: Parents of children diagnosed with Tourette"s Syndrome (TS) cope with a myriad of problems associated with this condition, as these children often experience significant behavioral, social-emotional, and academic problems in multiple ecologies.These problems are often exacerbated by commonly occurring comorbid conditions, which may include, among others, Attention Deficit Hyperactivity Disorder (ADHD), Obsessive-Compulsive Disorder (OCD), anxiety disorders, mood disorders, learning disorders, and various behavioral problems, such as Conduct Disorder (CD), sleep disorders, and sexually inappropriate behavior."Tourette"s Syndrome Plus (TS+)," a term coined by Dr.Leslie Packer, a noted author in the field of TS, refers to cases in which TS is accompanied by comorbid disorders.The purpose of this study was to examine the lived experience of parenting a child with TS+.A descriptive phenomenological approach was used to guide the research.Primary parents of children diagnosed with TS+, who were students in a public school system, were recruited through state chapters of the national Tourette Syndrome Association, via purposive sampling.Data were collected through semi-structured interviews.Transcriptions were derived from the audio tapes of the interviews.Data analysis revealed parents of children with severe TS+ experience suffering as a result of their child"s behaviors and special needs, as follows: 1) Parents feel irritated, deeply troubled, or frightened for their child when witnessing their child"s iii TS+ symptoms and are troubled by the negative impact these behaviors have on family functioning and relationships.2) These parents mourn the absence in their child of normal social relationships and social/emotional development, and feel deep anguish when their child is a victim of bullying, teasing, or ostracism.3) Parents are fearful at times that their child is being poorly educated, misunderstood, or mistreated at school.4) Parental suffering, related to the affects of parenting a child with severe TS+, adversely affects the parents" own mental health.iv DEDICATION
Author: Roger Harris Sasnett
Institution: The Ohio State University
Language: English
Subfield: Clinical Psychology
Field: Psychology
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W2525804470