Quality of life of patients after total laryngectomy: the struggle against stigmatization and social exclusion using speech synthesis

Abstract

In this article, we deal with the problem of potential stigmatization and social exclusion of people that have voice/speech problems due to neck cancer, especially those who have lost their voice because of total laryngectomy, and we analyze how this potential stigmatization could be alleviated by personalized speech synthesis. We used a mixed-method approach, consisting of quality of life questionnaires and in-depth semi-structured interviews, in order to provide more generalizable as well as rich information. We found out that people with speech problems feel depressed because of their health status and anxiety during social interactions, as they think that other people perceive them as abnormal, or they directly experience symbolic violence. For overcoming these negative feelings, the crucial factors are family relationships and maintaining employment. In both factors, speech synthesis can help significantly.

Implications for rehabilitation

• Personalized speech synthesis can help considerably to people with severe voice impairment in their (re)integration into society.

• Where possible and appropriate, personalized speech synthesis should be offered as an option to “traditional” voice substitutions.

Keywords:

• Czech Republic
• mixed methods
• social exclusion
• speech synthesis
• stigmatization
• symbolic violence
• voice loss
• laryngeal cancer
• total laryngectomy

Acknowledgements

The authors would like to thank the staff of the Faculty Hospital in Motol for their cooperation and help.

Disclosure statement

The authors declare that there is no conflict of interest.

Notes

1 If someone abuses his/her strong power position based on existing mythology, stereotypes, institutions, habits, norms, etc. to intimidate, ridicule or otherwise abuse someone else, he/she uses, according to Pierre Bourdieu, symbolic violence, which is equivalent to physical violence, except that it is aimed at the mind, self-esteem, personal integrity etc. of the one who is being abused. In the case of people that have some disability, healthy (“normal”) people can, for instance, ridicule unhealthy (“abnormal”) ones, and, thus, act violently toward them.

2 The term was coined by Axel Honneth [18] and Nancy Fraser [19] to express the specific concept of social justice based on the notion that a society is just if it provides both material and symbolic possibilities for any of its members to participate in social interactions. Such a society should provide dignified subsistence for its members and support their self-esteem regardless of their social position so that they can become confident citizens.

3 In order to maintain the anonymity of the informants, their names have been changed in the table and throughout the text.

4 It is important to note that Roman was the only informant who agreed to being interviewed via letter because he did not use any other means of communication. However, we spoke with him in the hospital and he was very defensive and careful about sharing anything with us, with the exception of agreeing to being sent a letter with questions for him to answer.

5 Robert did not lose his voice completely, however his vocal cords are partially impaired and his speech is very limited.

6 Richard’s voice had been very damaged at the time of voice conservation, which always limits the final performance of speech synthesis. For patients who are not able to conserve their voice or their records are too bad we offer so-called general professional synthesis.

Additional information

Funding

The research leading to these results has received funding from the Norwegian Financial Mechanism 2009–2014 and the Ministry of Education, Youth and Sports of the Czech Republic under Project contract no. MSMT-28477/2014 and Project no. 7F14236.