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

Abstract

Purpose: Stuttering is a chronic communication disorder resulting in challenging life experiences for many individuals. This review aimed to integrate qualitative findings on the lived experiences of people who stutter and identify implications for rehabilitation.

Materials and methods: A systematic literature search of electronic databases for studies published since 2000 was completed to identify research papers that used qualitative methods to explore the lived experiences of adults who stutter. Forty-five papers were read in full and a final seventeen papers were synthesised using a meta-ethnographic approach.

Results: Five themes are described: (i) Avoidance is used to manage stuttering; (ii) Stuttering unfavourably impacts employment experiences; (iii) Stuttering shapes self-identity; (iv) Stuttering leads to negative reactions; and (v) Stuttering impacts relationships adversely.

Conclusions: This review identifies the profound and predominantly negative impact that stuttering has on individuals’ experiences. Avoidance is a commonly used strategy to manage stuttering with further negative consequences for the individual. To promote person-centred care and enhance treatment outcomes, clinicians should be cognizant of the profound impact of stuttering on the individual’s life experience and incorporate targeted goals to reflect this when intervening.

IMPLICATIONS FOR REHABILITATION

• Clinicians should be aware of and understand the extent of the impact of stuttering on an individual’s life which is typified by various forms of avoidance and challenges in a number of domains including employment, identity formation, relationship development and others’ perceptions of the person who stutters.

• An impairment-based approach to stuttering treatment with adults focusing on the overt aspects of stuttering (i.e., speech behaviours) is not holistic and does not do justice to the spectrum of covert features such as avoidance, and internalised thoughts and feelings that are associated with the condition. Therefore, the adoption of a holistic approach to stuttering intervention is recommended.

• An understanding of adults’ lived experience of stuttering has the potential to inform programme developments for children and adolescents with the same condition and thus employ preventative strategies to reduce the development of negative life experiences at an earlier age.

• Clinicians should engage with the field of disability studies to strengthen their practice and consider their role in addressing socially-imposed barriers such as negative attitudes impacting on people who stutter.

Keywords:

• Stuttering
• lived experience
• adults
• meta-ethnography
• qualitative
• rehabilitation

Acknowledgement

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Disclosure statement

The authors report no conflicts of interest.