A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette’s syndrome

Abstract

Few studies address the daily challenges faced by parents of children diagnosed with Tourette's syndrome. This article reports on a qualitative interview study with 15 parents exploring their experiences, the challenges they face and the support mechanisms they have found to be most helpful. Thematic analysis identified four core categories which represented shared experiences of the participants: coping with children's challenging behaviours, misconceptions and lack of understanding of professionals and the lay public, negative experiences of their children's education and lack of support and services for families with Tourette's syndrome. The findings highlight the challenges of parenting a child with Tourette's syndrome, particularly with respect to family life and the child's schooling.

Experiences of Tourette Syndrome Caregivers With Supportive Communication

“…Caregivers in this study noted the feelings of isolation created by living with the disorder, its misconceptions and attached stigma, a finding also supported by Ludlow et al (2018). The results of this study added to those findings by noting that messages containing disbelief themes aggravated those feelings.…”

“…Instead, the participants communicated that they felt worse after talking to people whose reaction was one of disbelief. Feelings of connection, often found online through TS support networks, however, were rated as helpful by TS caregivers, an outcome that supports Ludlow, Brown and Schulz (2018) finding that relationships with other TS families fostered coping. The emotional and informational distinctions of supportive communication as identified by MacGeorge et al (2008) were also found in the caregiver's stories; participants identified that validating messages softened emotions of self-questioning, exhaustion, and frustration, whereas advice related to therapies boosted caregiver confidence and hope.…”

“…When compared with caregivers of typically developing children, caregivers of children with TS can experience more stress, especially when the ADHD and OCD comorbidities are present (Robinson et al, 2013;Stewart et al, 2015). Ludlow et al (2018) interviewed TS caregivers and found several shared stress-provoking experiences: coping as a child expresses a socially inappropriate tic or displays challenging behavior, misconceptions about the disease, and a lack of support and services for TS families. Furthermore, Rivera-Navarro et al (2009) investigated sources of TS caregiver stress and found that caregivers reported feelings of guilt, concerns about stigma, and fears of missing work due to providing care.…”

“…Few studies have examined the support needs of TS caregivers, although the studies available underscore the role social support plays as a stress reducer for the TS caregiver (Goussé et al, 2016;Ludlow et al, 2018;Schoeder & Remer, 2007). Ludlow et al (2018) noted that TS caregivers found building relationships with other TS families as positive and helpful toward coping. Schoeder and Remer (2007) found that TS caregiver strain was related to the strength of social networks and that perceived social support partially mediated the child's symptom severity and caregiver stress.…”

Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences

“…This includes their physical impact (eg, pain and injury from tics), emotional and psychological impact (eg, increased anxiety and hopelessness, questioning sense of self), impact upon school and work (eg, tics impacting upon classroom learning, misunderstanding from teachers, finding employment), and impact upon social life and relationships (eg, bullying, affecting family dynamics) [2,14,15]. TDs also impact upon the family too: interviews with parents of children with TS describe having to cope daily with tic-related challenges, such as seeing their child have painful tics, disruption to daily routines, and financial difficulties arising from additional caring responsibilities and tic-related behaviors [16]. The visible nature of tics often attracts attention from other people [17], and the negative impact of chronic tics on social relationships is widely known: stigmatization from others, discrimination, isolation, bullying, and social exclusion arising from TDs are common interpersonal issues found across the life span [6,18].…”