A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette’s syndrome.
Open accessAbstract
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.
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Children with TS and their caregivers experience feelings of isolation due to general public indifference and ignorance of disability.
“Children with TS and their caregivers experience feelings of isolation due to general public indifference and ignorance of disability (27, 30, 32, 33).”
From How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence (2022) · cites this paper as [30]
In “Support and services” (page unavailable), a parent reports feeling isolated after her son’s diagnosis. “Misconceptions and lack of understanding” describes public ignorance about TS. The paper does not establish that public indifference or ignorance caused isolation in both children and caregivers. (LLM, conf=0.83)
Experimental — accuracy not yet measuredIt is often difficult for caregivers of children with TS to lead normal daily lives.
“It is often difficult for caregivers of children with TS to lead normal daily lives (26, 30).”
From How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence (2022) · cites this paper as [30]
Tourette's syndrome had negative consequences in several areas of daily life.
“Tourette’s syndrome had negative consequences in several areas of daily life (26, 30).”
From How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence (2022) · cites this paper as [30]
Children's uncontrollable TS symptoms can instill feelings of frustration and guilt in their caregivers.
“Children’s uncontrollable TS symptoms can instill feelings of frustration and guilt in their caregivers (26, 27, 30).”
From How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence (2022) · cites this paper as [30]
Caregivers reported feeling isolated and alienated due to a lack of support and the fact that their children's symptoms were not understood by others.
“Their caregivers also reported feeling isolated and alienated due to a lack of support and the fact that their children’s symptoms were not understood by others (27, 30).”
From How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence (2022) · cites this paper as [30]
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- Authors
- Ludlow, A. K., Brown, R., & Schulz, J.
- Affiliations
- University of Hertfordshire (GB)
- Corresponding author
- Ludlow, Amanda K
- Venue
- Journal of Health Psychology
- Publisher
- SAGE Publications
- Published
- 2016-09-28
- Volume
- 23
- Issue
- 14
- Pages
- 1790-1799
- ISSN
- 1359-1053 (ISSN-L)
- 1461-7277
- OpenAlex
- W2524046716
- Cited by
- 46
- References
- 35
- Citations by year
- 2026: 4 · 2025: 9 · 2024: 7 · 2023: 6 · 2022: 11 · 2021: 5 · 2020: 3
- FWCI
- 0.00
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Journal of Health Psychology (publishedVersion)
- PubMed (publishedVersion)
- University of Hertfordshire Research Archive (University of Hertfordshire) (submittedVersion)
- Funders
- Tourettes Action
- Topics
- Social Sciences › Psychology › Clinical Psychology › Obsessive-Compulsive Spectrum Disorders
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- Tourette syndrome, caregiver experiences, parenting challenges, behavioral problems, professional understanding, school experience, family support services, family life
- MeSH terms
- Adaptation, Psychological, Adolescent, Adult, Child, Female, Tourette Syndrome, Humans, Interviews as Topic, Male, Parents, Social Support, Stress, Psychological, Parenting, Caregivers, Qualitative Research
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