The lived experience of stuttering: a synthesis of qualitative studies with implications for rehabilitation

References

• Craig A, Hancock K, Tran Y. Epidemiology of stuttering in the community across the entire life span. J Speech Lang Hear Res. 2002;45:1097–1105.
   PubMed Web of Science ®Google Scholar
• Guitar B. Stuttering: an integrated approach to its nature and treatment. 4th ed. Philadelphia (PA): Lippincott Williams & Wilkins; 2014.
   Google Scholar
• Smith A, Weber C. Childhood stuttering: where are we and where are we going? Semin Speech Lang. 2016;37:291–297.
   PubMed Web of Science ®Google Scholar
• Bricker-Katz G, Lincoln M, McCabe P. A life-time of stuttering: how emotional reactions to stuttering impact activities and participation in older people. Disabil Rehabil. 2009;31:1742–1752.
   PubMed Web of Science ®Google Scholar
• Craig A, Blumgart E, Tran Y. The impact of stuttering on the quality of life in adults who stutter. J Fluency Disord. 2009;34:61–71.
   PubMed Web of Science ®Google Scholar
• Craig A, Tran Y. Trait and social anxiety in adults with chronic stuttering: conclusions following meta-analysis. J Fluen Disord. 2014;40:35–43.
   PubMed Web of Science ®Google Scholar
• Iverach L, O’Brian S, Jones M, et al. Prevalence of anxiety disorders among adults seeking speech therapy for stuttering. J Anxiety Disord. 2009;23:928–934.
   PubMed Web of Science ®Google Scholar
• Koedoot C, Bouwmans C, Franken MC, et al. Quality of life in adults who stutter. J Commun Disord. 2011;44:429–443.
   PubMed Web of Science ®Google Scholar
• Klein JF, Hood SB. The impact of stuttering on employment opportunities and job performance. J Fluency Disord. 2004;29:255–273.
   PubMed Web of Science ®Google Scholar
• Blumgart E, Tran Y, Craig A. An investigation into the personal financial costs associated with stuttering. J Fluency Disord. 2010;35:203–215.
   PubMed Web of Science ®Google Scholar
• Yaruss JS. Assessing quality of life in stuttering treatment outcomes research. J Fluency Disord. 2010;35:190–202.
   PubMed Web of Science ®Google Scholar
• Onslow M, Costa L, Andrews C, et al. Speech outcomes of a prolonged-speech treatment for stuttering. J Speech Hear Res. 1996;39:734–749.
   PubMedGoogle Scholar
• Kroll R, Scott-Sulsky L. The fluency plus program: an integration of fluency shaping and cognitive restructuring procedures for adolescents and adults who stutter. In: Guitar B, McCauley R, editors. Treatment of stuttering: established and emerging interventions. Philadelphia (PA): Lippincott Williams & Wilkins; 2010. p. 277–311.
   Google Scholar
• Montgomery CS. The treatment of stuttering: from the hub to the spoke. In: Bernstein Ratner N, Tetnowski JA, editors. Current issues in stuttering research and practice. Mahway (NJ): Lawrence Erlbaum; 2006. p. 159–204.
   Google Scholar
• Helgadóttir F, Menzies R, Onslow M, et al. Online CBT II: a phase I trial of a standalone, online CBT treatment program for social anxiety in stuttering. Behav Change. 2009;26:254–270.
   Web of Science ®Google Scholar
• Menzies RG, Onslow M, Packman A, et al. Cognitive behavior therapy for adults who stutter: a tutorial for speech-language pathologists. J Fluen Disord. 2009;34:187–200.
   PubMed Web of Science ®Google Scholar
• Beilby JM, Byrnes ML, Yaruss JS. Acceptance and commitment therapy for adults who stutter: psychosocial adjustment and speech fluency. J Fluen Disord. 2012;37:289–299.
   PubMed Web of Science ®Google Scholar
• Carter A, Breen L, Yaruss JS, et al. Self-efficacy and quality of life in adults who stutter. J Fluency Disord. 2017;54:14–23.
   PubMed Web of Science ®Google Scholar
• Yaruss JS, Quesal RW, Reeves L, et al. Speech treatment and support group experiences of people who participate in the National Stuttering Association. J Fluen Disord. 2002;27:115–134.
   PubMed Web of Science ®Google Scholar
• Yaruss JS, Quesal RW. Overall assessment of the speaker’s experience of stuttering (OASES): documenting multiple outcomes in stuttering treatment. J Fluen Disord. 2006;31:90–115.
   PubMed Web of Science ®Google Scholar
• Corcoran J, Stewart M. Stories of stuttering. A qualitative analysis of interview narratives. J Fluen Disord. 1998;23:247–264.
   Web of Science ®Google Scholar
• Tetnowski JA, Damico JS. A demonstration of the advantages of qualitative methodologies in stuttering research. J Fluen Disord. 2001;26:17–42.
   Web of Science ®Google Scholar
• Tetnowski JA, Damico JS. Getting out of Procrustes' bed: the needs and benefits of qualitative research in stuttering. Adv Speech-Lang Pathol. 2004;6:153–158.
   Google Scholar
• Bothe AK, Davidow JH, Bramlett RE, et al. Stuttering treatment research 1970–2005: I. Systematic review incorporating trial quality assessment of behavioral, cognitive, and related approaches. Am J Speech Lang Pathol. 2006;15:321–341.
   PubMed Web of Science ®Google Scholar
• Noblit GW, Hare RD. Meta-ethnography: synthesizing qualitative studies. London (UK): Sage; 1988.
   Google Scholar
• Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009;9:59.
   PubMed Web of Science ®Google Scholar
• Cahill M, Robinson K, Pettigrew J, et al. Qualitative synthesis: a guide to conducting a meta-ethnography. Br J Occup Ther. 2018;81:129–137.
   Web of Science ®Google Scholar
• Atkins S, Lewin S, Smith H, et al. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol 2008;8:1–10.
   PubMed Web of Science ®Google Scholar
• France, et al. Protocol-developing meta-ethnography reporting guidelines (eMERGe). BMC Med Res Methodol. 2015;15:103-116. DOI: https://doi.org/10.1186/s12874-015-0068-0
   PubMed Web of Science ®Google Scholar
• Children Act [Internet]. Government of Ireland; 2001 [cited 2018 Apr 18]. Available from: http://www.irishstatutebook.ie/eli/2001/act/24/enacted/en/pdf
   Google Scholar
• Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Br Med J. 2009;339:332–336.
   Web of Science ®Google Scholar
• Boberg JM, Boberg E. The other side of the block: the stutterer’s spouse. J Fluen Disord. 1990;15:61–75.
   Web of Science ®Google Scholar
• Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG, editors. Analysing qualitative data. London (UK): Routledge; 1994. p. 173–194.
   Google Scholar
• Sarbin TR. Narrative psychology: the storied nature of human conduct. New York (NY): Praeger; 1986.
   Google Scholar
• Freeman M. Rewriting the self: history, memory, narrative. New York (NY): Routledge; 1993.
   Google Scholar
• Bogdan R, Biklen S. Qualitative research for education. 2nd ed. Boston (MA): Allyn and Bacon; 1998.
   Google Scholar
• Critical Appraisal Skills Programme Qualitative Checklist [Internet]. Oxford (UK): CASP UK; 2018 [cited 2018 Jun 22]. Available from: https://casp-uk.net/wp-content/uploads/2018/01/CASP-Qualitative-Checklist.pdf
   Google Scholar
• Schutz A. Collected papers I: the problem of social reality. The Hague (Netherlands): Martinus Nijhoff; 1962.
   Google Scholar
• Alqhazo M, Blomgren M, Roy N, et al. Discrimination and internalised feelings experienced by people who stutter in Jordan. Int J Speech Lang Pathol. 2017;19:519–528.
   PubMed Web of Science ®Google Scholar
• Beilby JM, Byrnes ML, Meagher EL, et al. The impact of stuttering on adults who stutter and their partners. J Fluency Disord. 2013;38:14–29.
   PubMed Web of Science ®Google Scholar
• Bricker-Katz G, Lincoln M, McCabe P. Older people who stutter: barriers to communication and perceptions of treatment needs. Int J Lang Commun Disord. 2010;45:15–30.
   PubMed Web of Science ®Google Scholar
• Bricker-Katz G, Lincoln M, Cumming S. Stuttering and work life: an interpretative phenomenological analysis. J Fluen Disord. 2013;38:342–355.
   PubMed Web of Science ®Google Scholar
• Butler C. Identity and stammering: negotiating hesitation, side-stepping repetition, and sometimes avoiding deviation. Sociol Health Illn. 2013;35:1113–1127.
   PubMed Web of Science ®Google Scholar
• Crichton-Smith I. Communicating in the real world: accounts from people who stammer. J Fluency Disord. 2002;27:333–352.
   PubMed Web of Science ®Google Scholar
• Daniels DE, Hagstrom F, Gabel RM. A qualitative study of how African American men who stutter attribute meaning to identity and life choices. J Fluen Disord. 2006;31:200–215.
   PubMed Web of Science ®Google Scholar
• Guendouzi J, Williams MJ. Positioning identity in clinical interviews with people who stutter. Commun Med. 2010;7:119–129.
   PubMedGoogle Scholar
• Kathard H. Sharing stories: life history narratives in stuttering research. Int J Lang Commun Disord. 2001;36:52–57.
   PubMed Web of Science ®Google Scholar
• Kathard H, Pillay M, Samuel M, et al. Genesis of self-identity as disother: life histories of people who stutter. S Afr J Commun Disord. 2004;51:4–14.
   PubMedGoogle Scholar
• Kathard H. On becoming someone: self-identity as able. Adv Speech Lang Pathol. 2006;8:79–91.
   Google Scholar
• Kathard H, Norman V, Pillay M. Configurations of self-identity formations of adults who stutter. S Afr J Commun Disord. 2010;57:51–57.
   PubMedGoogle Scholar
• Klompas M, Ross E. Life experiences of people who stutter, and the perceived impact of stuttering on quality of life: personal accounts of South African individuals. J Fluency Disord. 2004;29:275–305.
   PubMed Web of Science ®Google Scholar
• Perez HR, Doig-Acuña C, Starrels JL. Not unless it's a life or death thing: a qualitative study of the health care experiences of adults who stutter. J Gen Intern Med. 2015;30:1639–1644.
   PubMed Web of Science ®Google Scholar
• Plexico L, Manning WH, Dilollo A. A phenomenological understanding of successful stuttering management. J Fluen Disord. 2005;30:1–22.
   PubMed Web of Science ®Google Scholar
• Swartz E, Irani F, Gabel R. Coping with stuttering. Perspect Fluen Fluen Disord. 2014;24:58–68.
   Google Scholar
• Hilari K, Needle JJ, Harrison KL. What are the important factors in health-related quality of life for people with aphasia? A systematic review. Arch Phys Med Rehabil. 2012;93:86–95.
   PubMed Web of Science ®Google Scholar
• Wray F, Clarke D. Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies. BMJ Open. 2017;7:1–18.
   Web of Science ®Google Scholar
• Messenger M, Onslow M, Packman A, et al. Social anxiety in stuttering: measuring negative social expectancies. J Fluen Disord. 2004;29:201–212.
   PubMed Web of Science ®Google Scholar
• Hagstrom F, Daniels D. Social identity and the stuttering experience. Contemp Issues Commun Sci Disord. 2004;24:31–215. 2
   Google Scholar
• Hayhow R, Cray AM, Enderby P. Stammering and therapy views of people who stammer. J Fluency Disord. 2002;27:1–17.
   PubMed Web of Science ®Google Scholar
• Bekhet AK, Zauszniewski JA. Mental health of elders in retirement communities: is loneliness a key factor? Arch Psychiatr Nurs. 2012;26:214–224.
   PubMed Web of Science ®Google Scholar
• Cacioppo JT, Hawkley LC, Crawford LE, et al. Loneliness and health: potential mechanisms. Psychosom Med. 2002;64:407–417.
   PubMed Web of Science ®Google Scholar
• Holt-Lunstad J, Smith TB, Baker M, et al. Loneliness and social isolation as risk factors for mortality: a meta-analytic review. Perspect Psychol Sci. 2015;10:227–237.
   PubMedGoogle Scholar
• Friedland DS, Price RH. Underemployment: consequences for the health and well-being of workers. Am J Community Psychol. 2003;32:33–45.
   PubMed Web of Science ®Google Scholar
• Wanberg CR. The individual experience of unemployment. Annu Rev Psychol. 2012;63:369–396.
   PubMed Web of Science ®Google Scholar
• Shakespeare T. The social model of disability. In: Davis LJ, editor. The disability studies reader. New York (NY): Routledge; 2017. p. 195–203.
   Google Scholar
• St. Pierre J. The construction of the disabled speaker: locating stuttering in disability studies. In: Eagle C, editor. Literature, speech disorders, and disability: talking normal. New York (NY): Routledge; 2013. p. 9–23.
   Google Scholar
• Shakespeare T, Cooper H, Bezmez D, et al. Rehabilitation as a disability equality issue: a conceptual shift for disability studies? SI. 2018;6:61–72.
   Google Scholar
• Kielhofner G. Rethinking disability and what to do about it: disability studies and its implications for occupational therapy. Am J Occup Ther. 2005;59:487–496.
   PubMed Web of Science ®Google Scholar
• Magasi S. Infusing disability studies into the rehabilitation sciences. Top Stroke Rehabil. 2008;15:283–287.
   PubMed Web of Science ®Google Scholar
• McCormack C, Collins B. Can disability studies contribute to client-centred occupational therapy practice? Br J Occup Ther. 2010;73:339–342.
   Web of Science ®Google Scholar
• Baxter S, Johnson M, Blank L, et al. Non-pharmacological treatments for stuttering in children and adults: a systematic review and evaluation of clinical effectiveness, and exploration of barriers to successful outcomes. Health Technol Assess. 2016;20:1–302.
   Web of Science ®Google Scholar
• Beck AT. Cognitive therapy: nature and relation to behavior therapy. Behav Ther. 1970;1:184–200.
   Web of Science ®Google Scholar
• Hayes SC, Strosahl K, Wilson KG. Acceptance and commitment therapy: an experiential approach to behavior change. New York (NY): Guilford Press; 1999.
   Google Scholar
• White A, Epston D. Narrative means to therapeutic ends. New York (NY): Norton; 1990.
   Google Scholar
• DiLollo A, Neimeyer R, Manning W. A personal construct psychology view of relapse: indications for a narrative therapy component to stuttering treatment. J Fluen Disord. 2002;27:19–42.
   PubMed Web of Science ®Google Scholar
• Leahy MM, O'Dwyer M, Ryan F. Witnessing stories: definitional ceremonies in narrative therapy with adults who stutter. J Fluency Disord. 2012;37:234–241.
   PubMed Web of Science ®Google Scholar
• Sheehan V, Shanks P, Mereu S. Easy stuttering: avoidance-reduction therapy. Santa Monica (CA): Sheehan Stuttering Center; 2005.
   Google Scholar
• Sheehan J, Sheehan V. Avoidance-reduction therapy: a response suppression hypothesis. In: Perkins WH, editor. Stuttering disorders. New York (NY): Thieme-Stratton; 1984. p. 147–151.
   Google Scholar
• Boyle MP. Psychological characteristics and perceptions of stuttering of adults who stutter with and without support group experience. J Fluen Disord. 2013;38:368–381.
   PubMed Web of Science ®Google Scholar