title: The lived experience of dysphagia following non-surgical treatment for head and neck cancer.
abstract: The prevalence and severity of dysphagia in people treated non-surgically for primary head and neck cancer (HNC) is well documented. However, few studies have looked beyond the physiological impairment to explore the lived experience of dysphagia in the post-treatment period of HNC. The current study adopted a person-centred, qualitative approach to describe the experiences of people living with dysphagia in the months and years following non-surgical treatment for HNC. Using maximum variation sampling, 24 participants who had undergone radiotherapy treatment for HNC were recruited. Individual interviews were conducted to explore the impact of dysphagia on participants' everyday lives. The themes identified included: (1) physical changes related to swallowing; (2) emotions evoked by living with dysphagia; (3) altered perceptions and changes in appreciation of food; and (4) personal and lifestyle impacts. The data revealed the breadth and significance of the impact of dysphagia on the lives of people treated curatively for HNC. Assessment and management in the post-treatment period must be sufficiently holistic to address both the changing physical states and the psychosocial needs of people with dysphagia following HNC. Rehabilitation services which focus only on impairment-based management will fail to fully meet the support needs of this clinical population.
authors.affiliation: The University of Queensland , Brisbane , Australia.
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Nund
authors.forename: Elizabeth C
authors.initials: EC
authors.lastname: Ward
authors.forename: Nerina A
authors.initials: NA
authors.lastname: Scarinci
authors.forename: Bena
authors.initials: B
authors.lastname: Cartmill
authors.forename: Pim
authors.initials: P
authors.lastname: Kuipers
authors.forename: Sandro V
authors.initials: SV
authors.lastname: Porceddu
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D017281:Cost of Illness; D003679:Deglutition; D003680:Deglutition Disorders / Q000209:etiology* / Q000503:physiopathology / Q000523:psychology; D004644:Emotions; D005247:Feeding Behavior; D005260:Female; D006258:Head and Neck Neoplasms / Q000532:radiotherapy*; D006801:Humans; D008019:Life Style; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011878:Radiotherapy / Q000009:adverse effects; D013997:Time Factors; D016896:Treatment Outcome
keywords: Dysphagia; head and neck cancer; psychosocial effects; qualitative research; radiotherapy