Experiences of Tourette Syndrome Caregivers With Supportive Communication

Travis, E; Juarez-Paz, Anna V. Ortiz

doi:10.1177/1049732320915444

Cited by 9 publications

(14 citation statements)

References 30 publications

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“…Qualitative studies have been conducted as follows: two in the USA ( 27 , 29 ), two in Taiwan ( 28 , 33 ), two in the UK ( 30 , 32 ), one in South Korea ( 26 ), and one in Canada ( 31 ).…”

Section: Resultsmentioning

confidence: 99%

“…After screening the titles and abstracts, 22 articles were selected for full-text analysis. Finally, eight studies (26)(27)(28)(29)(30)(31)(32)(33) were included and synthesized in this review (Figure 1). The overall characteristics and extracted findings of the included studies are summarized in Tables 1, 2, respectively.…”

Section: Study and Participant Characteristicsmentioning

confidence: 99%

“…The overall characteristics and extracted findings of the included studies are summarized in Tables 1, 2, respectively. Qualitative studies have been conducted as follows: two in the USA (27,29), two in Taiwan (28,33), two in the UK (30,32), one in South Korea (26), and one in Canada (31).…”

Section: Study and Participant Characteristicsmentioning

confidence: 99%

“…Children with TS and their caregivers have been reported to find comfort in receiving support from others (26)(27)(28)(29)33). Parents were able to receive practical help in raising children with TS through self-help groups, and by receiving other people's recognition of their efforts, they were able to relieve some of their guilt about their children (26,27).…”

Section: Category 1: Taking Comfort From People's Approval and Supportmentioning

confidence: 99%

See 3 more Smart Citations

How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence

Suh

Yoon²,

Hong³

et al. 2022

Front. Psychiatry

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BackgroundTourette’s syndrome (TS) is a childhood neurodevelopmental disorder characterized by sudden, repetitive, involuntary, and irregular muscle movement and vocalization. Recently, non-pharmaceutical methods, such as behavioral therapy, psychotherapy, and deep brain stimulation, have been introduced as alternatives to pharmacological treatment for TS. This study aimed to systematically review and synthesize qualitative evidence on the experiences of children with TS and their caregivers. A meta-synthesis of qualitative evidence could help provide a comprehensive understanding of the challenges experienced by children with TS and their caregivers with the aim of providing more effective treatment and services for them.Materials and methodsA systematic search was conducted using MEDLINE/PubMed, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycARTICLES, and three Korean databases (Korean Medical Database, Research Information Sharing Service, and ScienceON) in July 2021. Studies were included if they collected and analyzed qualitative data from children with tic disorder or TS, or their caregivers. Qualitative research findings on the experiences and perspectives of children with TS and their caregivers were critically appraised and synthesized using the Joanna Briggs Institute methodology.ResultsEight eligible studies were included. The findings from these studies (i.e., themes or subthemes of qualitative research) were aggregated into categories (a group of similar findings) and synthesized findings (a group of categorized findings). Ultimately, the 60 findings were aggregated into 15 categories. Finally, four synthesized findings were derived from the 15 categories: (i) continuation of challenging daily life, (ii) denying that TS causes emotional distress, (iii) accepting and understanding TS as part of oneself, and (iv) looking to the future.ConclusionChildren with TS and their caregivers experience physical and psychological distress and social deprivation. Avoiding and suppressing TS causes secondary distress such as guilt. However, seeking social support and accepting the disorder reduce the distress caused by symptoms and lays the foundation for later growth. Even in the face of adversity, children with TS and their caregivers find personal value and acquire a more open and optimistic attitude toward life. This review shows that acceptance-based therapy and social support should be provided for the treatment and management of TS.

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“…Qualitative studies have been conducted as follows: two in the USA ( 27 , 29 ), two in Taiwan ( 28 , 33 ), two in the UK ( 30 , 32 ), one in South Korea ( 26 ), and one in Canada ( 31 ).…”

Section: Resultsmentioning

confidence: 99%

Section: Study and Participant Characteristicsmentioning

confidence: 99%

Section: Study and Participant Characteristicsmentioning

confidence: 99%

Section: Category 1: Taking Comfort From People's Approval and Supportmentioning

confidence: 99%

See 2 more Smart Citations

How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence

Suh

Yoon²,

Hong³

et al. 2022

Front. Psychiatry

View full text Add to dashboard Cite

show abstract

“…A recent US study of TS caregivers found that although they received supportive communication from family, friends, and medical professionals, they also experienced communication that might have meant to be supportive but instead created distress. 2 The authors suggest that the types of messages caregivers need may depend on where they are in their 'struggle'. For example, caregivers facing a new diagnosis may need big picture messages of support and encouragement, whereas those well versed and experienced caring for a child with TS may be more interested in answers and expressions of respect from medical professionals.…”

mentioning

confidence: 99%