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Speaking up for the lost voices: representation and inclusion of people with communication impairment in brain tumour research

Lookup NU author(s): Dr Fiona MengerORCiD, Professor Linda Sharp



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© 2023, The Author(s).Brain tumours and their associated treatments can lead to progressive impairments of communication, adversely affecting quality-of-life. This commentary explores our concerns that people with speech, language, and communication needs face barriers to representation and inclusion in brain tumour research; we then offer possible solutions to support their participation. Our main concerns are that there is currently poor recognition of the nature of communication difficulties following brain tumours, limited focus on the psychosocial impact, and lack of transparency on why people with speech, language, and communication needs were excluded from research or how they were supported to take part. We propose solutions focusing on working towards more accurate reporting of symptoms and the impact of impairment, using innovative qualitative methods to collect data on the lived experiences of speech, language, and communication needs, and empowering speech and language therapists to become part of research teams as experts and advocates for this population. These solutions would support the accurate representation and inclusion of people with communication needs after brain tumour in research, allowing healthcare professionals to learn more about their priorities and needs.

Publication metadata

Author(s): Menger F, Cresswell H, Lewis J, Volkmer A, Sharp L

Publication type: Note

Publication status: Published

Journal: Supportive Care in Cancer

Year: 2023

Volume: 31

Issue: 6

Print publication date: 01/06/2023

Online publication date: 27/05/2023

Acceptance date: 09/05/2023

ISSN (print): 0941-4355

ISSN (electronic): 1433-7339

Publisher: Springer Science and Business Media Deutschland GmbH


DOI: 10.1007/s00520-023-07804-5

PubMed id: 37237058