title: Survivors' experiences of dysphagia-related services following head and neck cancer: implications for clinical practice.
abstract: BACKGROUND
  It is known that people with dysphagia experience a number of negative consequences as a result of their swallowing difficulties following head and neck cancer management (HNC). However their perceptions and experiences of adjusting to dysphagia in the post-treatment phase, and the services received to assist this process, has not been studied.
  
  
  OBJECTIVE
  To explore the lived experience of people with dysphagia following non-surgical treatment for HNC and examine their perceptions of service needs.
  
  
  METHODS
  A demographically diverse group of 24 people who had received radiotherapy for HNC in the past five years, and experienced dysphagia as a result of treatment, were recruited using maximum variation sampling. Each participant took part in a semi-structured, in-depth interview, where they reflected on their adjustment to, and recovery from dysphagia following treatment for HNC, as well as the dysphagia-related services they received during their treatment. Thematic analysis was used to analyse the transcripts and to identify key themes that emerged from the data.
  
  
  RESULTS
  The main integrative theme was the desire for ongoing access to dysphagia-related services in order to adequately manage dysphagia. Within this integrative theme were five additional themes including: (1) entering the unknown: life after treatment for HNC; (2) making practical adjustments to live with dysphagia; (3) making emotional adjustments to live with dysphagia; (4) accessing support outside the hospital services; and (5) perceptions of dysphagia-related services.
  
  
  CONCLUSIONS
  The interviews revealed the need for both greater access to services and a desire for services which address the multitude of issues faced by people with dysphagia following HNC in the post-treatment period. Speech and language therapists managing this caseload need to ensure post-treatment services are available and address not only the physical but also the emotional and psychosocial changes impacting people with dysphagia in order to assist them to adjust to, and live successfully with dysphagia. Further research should be conducted to support the development of innovative services and to highlight dysphagia-related survivorship issues to governing bodies/policy makers.
authors.affiliation: Division of Speech Pathology, School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, Brisbane, Queensland, Australia; Centre for Functioning and Health Research, Metro South Health Services District, Queensland Health, Brisbane, Queensland, 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: D000223:Adaptation, Psychological; D000368:Aged; D003131:Combined Modality Therapy; D003680:Deglutition Disorders / Q000523:psychology* / Q000628:therapy*; D005260:Female; D005500:Follow-Up Studies; D006297:Health Services Accessibility; D006801:Humans; D055809:Illness Behavior; D008297:Male; D008875:Middle Aged; D010039:Otorhinolaryngologic Neoplasms / Q000523:psychology* / Q000532:radiotherapy*; D017060:Patient Satisfaction; D011788:Quality of Life / Q000523:psychology; D011832:Radiation Injuries / Q000523:psychology* / Q000534:rehabilitation*; D012944:Social Support; D017741:Survivors / Q000523:psychology*
keywords: adjustment; dysphagia; head and neck cancer; qualitative research; radiotherapy; service delivery