The experiences of Tourette syndrome (TS) caregivers with supportive communication are examined in this qualitative investigation. TS is a childhood-onset neurodevelopmental disorder marked by a combination of involuntary verbal and motor tics lasting for more than 1 year. Although individuals are impacted the most by TS, the stress for caring for a child with TS takes an emotional and physical toll on the caregiver. Eleven participants shared their experiences with receiving supportive communication by taking part in semi-structured interviews. Data analysis yielded three themes: (a) TS caregivers describe their experiences as a struggle; (b) they seek out specific social support from friends and families; and (c) they frequently receive social support that increases instead of reducing stress.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.
2.
BitskoR.HolbrookJ. R.VisserS. N.MinkJ. W.ZinnerS. H.GhandourR. M.BlumbergS. J. (2014). A national profile of Tourette syndrome, 2011-2012. Journal of Developmental Behavioral Pediatrics, 35(5), 317–322. https://doi.org/10.1097/DBP.0000000000000065
3.
BurlesonB. R.MacGeorgeE. L. (2002). Supportive communication. In KnappM. L.DalyJ. A. (Eds.), Handbook of interpersonal communication (pp. 374–424). SAGE.
4.
BuseJ.KirschbaumC.LeckmanJ.MünchauA.RoessnerV.WoodsD.HimleM. (2014). The modulating role of stress in the onset and course of Tourette’s syndrome: A review. Behavior Modification, 38(2), 184–216. https://doi.org/10.1177/0145445514522056
CohenS.WillsT. (1985). Stress, Social Support, and the Buffering Hypothesis. Psychological Bulletin, 98(2), 310-357.
7.
CooperC.RobertsonM. M.LivingstonG. (2003). Psychological morbidity and caregiver burden in parents of children with Tourette’s disorder and psychiatric comorbidity. Journal of the American Academy of Child & Adolescent Psychiatry, 42, 1370–1375. https://doi.org/10.1097/01.CHI.0000085751.71002.48
8.
CorbinJ.StraussA. (2015). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th ed.). Sage.
9.
DeanM.DavidsonL. G. (2018). Previvors’ uncertainty management strategies for hereditary breast and ovarian cancer. Health Communication, 33(2), 122–130. https://doi.org/10.1080/10410236.2016.1250187
10.
DohertyE. F.MacGeorgeE. L. (2013). Perceptions of supportive behavior by young adults with bipolar disorder. Qualitative Health Research, 23(3), 361–374. https://doi.org/10.1177/1049732312468508
11.
EapenV.ČrnčecR. (2009). Tourette syndrome in children and adolescents: Special considerations. Journal of Psychosomatic Research, 67(6), 525–532. https://doi.org/10.1016/j.jpsychores.2009.08.03
12.
EddyC.RizzoR.GulisanoM.AgodiA.BarchittaM.CalìP.. . .CavannaA. (2011). Quality of life in young people with Tourette syndrome: A controlled study. Journal of Neurology, 258(2), 291–301. https://doi.org/10.1007/s00415-010-5754-6
13.
GousséV.CzerneckiV.DenisP.StilgenbauerJ.DeniauE.HartmannA. (2016). Impact of perceived stress, anxiety-depression and social support on coping strategies of parents having a child with Gilles de la Tourette syndrome. Archives of Psychiatric Nursing, 30(1), 109–113. https://doi.org/10.1016/j.apnu.2015.08.017
14.
HighA. C.SteuberK. R. (2014). An examination of support (in)adequacy: Types, sources, and consequences of social support among infertile women. Communication Monographs, 81(2), 157–178. https://doi.org/10.1080/03637751.2013.878868
15.
JalenquesI.AuclairC.MorandD.LegrandG.MarcheixM.RamanoelC.. . .DerostP. (2017). Health-related quality of life, anxiety and depression in parents of adolescents with Gilles de la Tourette syndrome: A controlled study. European Child & Adolescent Psychiatry, 26(5), 603–617. https://doi.org/10.1007/s00787-016-0923-5
16.
JonesS.BodieG. (2014). Supportive communication. In BergerC. (Ed.), Interpersonal communication (pp. 371–394). De Gruyter.
17.
KusterP.MerkleC. (2004). Caregiving stress, immune function, and health: Implications for research with parents of medically fragile children. Issues in Comprehensive Pediatric Nursing, 27(4), 257–276. https://doi.org/10.1080/01460860490884165
18.
LeckmanJ.ZhangH.VitaleA.LahninF. (1998). Course of tic severity in Tourette syndrome: The first two decades. Pediatrics, 102(1), 14–19. https://doi.org/10.1542/peds.102.1.14
19.
LindlofT.TaylorB. (2019). Qualitative communication research methods. Sage.
20.
LudlowA. K.BrownR.SchulzJ. (2018). A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette’s syndrome. Journal of Health Psychology, 23(14), 1790–1799. https://doi.org/10/1177/1359105316669878
21.
MacGeorgeE. L.FengB.ThompsonE. R. (2008). “Good” and “bad” advice: How to advise more effectively. In MotleyM. T. (Ed.), Studies in applied interpersonal communication (pp. 145–164). Sage.
22.
MacGeorgeE. L.SamterW.GillihanS. J. (2005). Academic stress, supportive communication, and health. Communication Education, 54(4), 365–372. https://doi.org/10.1080/03634520500442236
23.
MalliM.Forrester-JonesA.MurphyR. (2016). Stigma in youth with Tourette’s syndrome: A systematic review and synthesis. European Child & Adolescent Psychiatry, 25(2), 127–139. https://doi.org/10.1007/s00787-015-0761-x
24.
PosselP.BurtonS. M.CauleyB.SawyerM. G.SpenceS. H.SheffieldJ. (2018). Associations between social support from family, friends and teachers and depressive symptoms in adolescents. Journal of Youth & Adolescence, 47(2), 398–412. https://doi.org/10.1007/s10964-017-07126
25.
Rivera-NavarroJ.CuboE.AlmazánJ. (2009). The diagnosis of Tourette’s syndrome: Communication and impact. Clinical Child Psychology and Psychiatry, 14(1), 13–23. https://doi.org/10.1177/1359104508100127
26.
Rivera-NavarroJ.CuboE.AlmazanJ. (2014). The impact of Tourette’s syndrome in the school and the family: Perspectives from three stakeholder groups. International Journal for the Advancement of Counseling, 36(1), 96–113. https://eric.ed.gov/?id=EJ1037283
27.
RobinsonL.BitskoR.SchieveL.VisserR. (2013). Tourette syndrome, parenting aggravation, and the contribution of co-occurring conditions among a nationally representative sample. Disability and Health Journal, 6(1), 26–35. https://doi.org/10.1016/j.dhjo.2012.10.002
28.
SchoederC. E.RemerR. (2007). Perceived social support and caregiver strain in caregivers of children with Tourette’s disorder. Journal of Child & Family Studies, 16(6), 888–901. https://doi.org/10.1007/s10826-007-9133-6
29.
StewartS.GreeneD.Lessov-SchlaggarC.ChurchJ.SchlaggarB. (2015). Clinical correlates of parenting stress in children with Tourette syndrome and in typically developing children. The Journal of Pediatrics, 166(5), 1297–1302e3. https://doi.org/10.1016/j.jpeds.2015.01.041
WadmanR.GlazebrookC.BeerC.JacksonG. (2016). Difficulties experienced by young people with Tourette syndrome in secondary school: A mixed methods description of self, parent and staff perspectives. BMC Psychiatry, 16, Article 14. https://doi.org/10.1186/s12888-016-0717-9
32.
What is Tourette syndrome? (2016). NJ Center for Tourette Syndrome and Associated Disorders. https://njcts.org/what-is-ts/
33.
WilkinsonB. J.MarshallR. M.CurtwrightB. (2008). Impact of Tourette’s disorder on parent reported stress. Journal of Child & Family Studies, 17(4), 582–598. https://doi.org/10.1007/s10826-007-9176-8
34.
WrightK.SparksL.O’HairD. (2013). Health communication in the 21st century (2nd ed.). Wiley-Blackwell.
35.
ZinnerS.ConeleaC. A.GlewG. M.WoodsD. W.BudmanC. L. (2012). Peer victimization in youth with Tourette syndrome and other chronic tic disorders. Child Psychiatry and Human Development, 43(1), 124–136. https://doi.org/10.1007/s10578-011-0249-y
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
