“I would have told you about being forgetful, but I forgot”: the experience of cognitive changes and communicative participation after head and neck cancer

Abstract

Purpose: Survivors of head and neck cancer have reported difficulties with memory, attention, verbal fluency, and processing speed sometimes persisting years after treatment. Self-perceived cognitive function is an important predictor of communication outcomes in this population. This study explores the lived experience of cognitive changes in survivors of non-nasopharyngeal head and neck cancer and how these changes affect communication in their daily lives.

Materials and methods: In the phenomenological tradition, five adult survivors of non-nasopharyngeal head and neck cancer participated in individual semi-structured interviews. The interviews were audio-recorded, transcribed, coded, and summarized into themes.

Results: Two major themes emerged: (1) I would have told you about being forgetful, but I forgot; and (2) It’s such a journey that much of it is uncharted. Participants described problems with memory, focus/attention, and task initiation along with slowed processing and language difficulties. These difficulties affected communication at work, socially, and at home. Participants expressed feeling unprepared for the possibility of cognitive changes, not knowing why they were happening or what to do about them.

Conclusions: Results of this study have implications for counseling and treatment of individuals with head and neck cancer, as well as advocating for these patients to receive appropriate information and intervention.

Implications for rehabilitation

• Survivors of non-nasopharyngeal head and neck cancer described experiencing problems with memory and focus/attention along with slowed processing and language difficulties.

• Study participants generally felt both unprepared for the cognitive changes they experienced and, in many ways, unsupported by healthcare providers and others.

• Rehabilitation professionals should be aware that cognitive changes following medical treatment for head and neck cancer may affect a patient’s ability to learn and follow complex treatment regimens.

• Rehabilitation professionals can advise and advocate for these patients to receive the appropriate referrals for assessment and treatment of their cognitive symptoms.

Keywords:

• Head and neck cancer
• communicative participation
• cognition
• quality of life
• qualitative research

Acknowledgements

The authors would like to thank the study participants for generously sharing their time and their stories. We also would like to thank Courtney Broderick, Sean Gilmore, and Lisa Zeppieri for their assistance in interview transcription.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by the National Institutes of Health, National Cancer Institute [grant #R01CA177635, 2014] and the University of Washington Speech & Hearing Sciences Vocal Function Laboratory