Perceptions of treatment for tics among young people with Tourette syndrome and their parents: a mixed methods study

Cuenca, José; Glazebrook, Cris; Kendall, Tim; Hedderly, Tammy; Heyman, Isobel; Jackson, Georgina M.; Murphy, Tara; Rickards, Hugh; Robertson, Mary M.; Stern, Jeremy; Trayner, Penny; Hollis, Chris

doi:10.1186/s12888-015-0430-0

Cited by 86 publications

(75 citation statements)

References 34 publications

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“…Attitudes toward treatment were investigated using a survey of 295 parents of youth with TS and interviews with 42 young people with TS 83 . These subjects were identified through Tourettes Action , a non-profit organization in the U.K.…”

Section: Resultsmentioning

confidence: 99%

Tourette syndrome research highlights 2015

Richards

Black

2016

F1000Res

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We present selected highlights from research that appeared during 2015 on Tourette syndrome and other tic disorders. Topics include phenomenology, comorbidities, developmental course, genetics, animal models, neuroimaging, electrophysiology, pharmacology, and treatment. We briefly summarize articles whose results we believe may lead to new treatments, additional research or modifications in current models of TS.

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Section: Resultsmentioning

confidence: 99%

Tourette syndrome research highlights 2015

Richards

Black

2016

F1000Res

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“…Focus groups with children in medical settings may require more commitment from parents and thus potentially bias the sampling frame. Individual interviews can be carried out in the children's home, or for adolescents, by phone [41] thus widening access.…”

Section: Kieranmentioning

confidence: 99%

Focus group or individual interviews for exploring children's health behaviour: the example of physical activity

Woolley¹,

Edwards²,

Glazebrook³

2018

apr

Self Cite

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Background: Children's health behaviours affect their current and future health. An appreciation of children's perceptions regarding these behaviours can inform health promotion initiatives. Focus groups and individual interviews have increasingly been used to explore health-related issues with children although the rationale for choosing any one method is not often explained and despite considerable debate about their benefits and drawbacks these methods have rarely been compared directly. This study aimed to explore the relative merits of the two approaches when collecting information from children about their perceptions of physical activity. Methods: Twelve children from Year 6 classes at one UK primary school were randomly allocated to an 'interview group' or a 'focus group' and asked questions about facilitators and barriers relating to their physical activity at school. Focus group interactions and interviews were recorded and transcribed verbatim. Qualitative data were analysed using exploratory thematic analysis and subsequently content analysis was undertaken to quantify differences between the groups. Results: Although both methods were suitable for collecting information from children about physical activity, children who were interviewed spoke on more occasions and offered more information about facilitators for physical activity. They also spoke more frequently about potentially important aspects of the school outdoor environment with regard to physical activity promotion. The focus group was more time efficient in this setting. Conclusion: Qualitative methods for exploring health behaviours may not be equivalent and need to be chosen carefully depending on the specific research problem and practical constraints within a project.

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“…These survey data align with other evidence that patient demand for CBIT currently exceeds availability. In a mixed methods study of 295 parents of young people with TS and 42 youths with TD, 76% of parents reported that they wanted CBIT to be available for their child, and roughly one-third of parents and half of young people surveyed reported a lack of knowledgeable providers in their geographic region (Cuenca et al, 2015). Moreover, Tourette.org had close to 60,000 searches for CBIT in the last year (TAA, personal communication, 2018).…”

Section: Pre-conference Surveymentioning

confidence: 99%

Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavior Therapy for Tics

Conelea¹,

Bennett²,

Capriotti³

et al. 2020

Preprint

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After the Summit, we organized this input into 4 Key Research Areas that described the general types of research that attendees felt passionately about.Here, we list these domains, as well as specific Research Questions within each domain. Even though we number these below, each is considered equally important (for example, #3 isn't a lower priority than #1). Key Research Domains and Sample Questions Domain 1: Increasing Access to CBIT Representative research questions include:1. Children spend a lot of time in school. Can we train school-based providers (e.g., guidance counselors, school OTs) to provide CBIT effectively in school settings?2. Currently, there are not enough CBIT providers for all of the people with TDs who want CBIT. What are the most effective ways to train more providers in CBIT?3. Many people with TDs have to see more than one doctor, or wait a long time to get diagnosed and connected to quality care. What is the best way to train general doctors (such as pediatricians and family doctors) to recognize TDs and provide appropriate education, resources, treatment recommendations, and referrals? Domain 2: Increasing CBIT's EffectivenessRepresentative research questions include:1. CBIT in its current form does not work for everyone. Can we improve CBIT outcomes by figuring out what makes it work more, or less, well for some people? This would include looking at numerical information from studies, and also talking with people who have received CBIT about ways to improve it.2. CBIT involves a number of different parts. Can we make CBIT more efficient by identifying its most "active ingredients"?3. Many people with TDs do not feel that CBIT is a good fit for them. Can we create a "CBIT Readiness Interview" to explain what CBIT is, discuss concerns, and possibly increase patients' desire to do CBIT? Domain 3: Optimizing How CBIT Fits into Individuals' Broader Care for TDsRepresentative research questions include:1. People with TDs are likely to use multiple kinds of treatments, such as medications and CBIT. What are the best sequences of treatment for TDs (for example, CBIT followed by medication, or vice versa)? And, can we identify who will benefit from one treatment sequence instead of another?2. Many patients who want CBIT have to wait a long time on waitlists to get it. Can we help people with TDs find relief more quickly by having them start with an online,selfhelp version of CBIT, and then move on to CBIT with a therapist if self-help is not effective for them?3. Many patients live too far from CBIT providers for weekly visits. Can we evaluate whether other CBIT formats work just as well, such as doing CBIT over videochat or doing a short, intensive "CBIT Bootcamp" (called "intensive outpatient treatment" by healthcare providers)?4. Many people with TDs take tic-reducing medications but wish they did not have to. Can CBIT be used as a tool to get off of these medications?5. How well does CBIT work compared to medication alone, and the combination of CBIT and medication used simultaneously? Full ...

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Perceptions of treatment for tics among young people with Tourette syndrome and their parents: a mixed methods study

Cited by 86 publications

References 34 publications

Tourette syndrome research highlights 2015

Tourette syndrome research highlights 2015

Focus group or individual interviews for exploring children's health behaviour: the example of physical activity

Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavior Therapy for Tics

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