title: Different experiences and perspectives between head and neck cancer patients and their care-givers on their daily impact of a gastrostomy tube.
abstract: BACKGROUND
  Gastrostomy feeding in head and neck cancer patients is recognised standard practice in some cancer centres with beneficial effects on outcomes for appropriately selected patients. However, the impact on patients and care-givers needs consideration. The present study aimed to understand the daily impact of gastrostomy feeding on head and neck cancer patients and their care-givers to identify improvements to services.
  
  
  METHODS
  Twenty-one adult patients were randomly selected from the Head and Neck centre at University College London Hospital. Six head and neck cancer patients and three care-givers participated in focus groups. The sessions were recorded, fully transcribed and qualitatively thematically analysed, and the resulting data were tabulated.
  
  
  RESULTS
  Patients and care-givers expressed opposite experiences within knowledge and understanding of why the tube was necessary; their personal perceptions and objectives of nutritional support. Themes expressing similar experiences included: developing positive coping strategies; preventing nutritional decline; tube dependency; dentures; finance; active care; and psychological support. Furthermore, both groups expressed the benefits of retaining a support network for rehabilitation with the hospital-based specialist team. Also patients and carers recognised that the gastrostomy tube helped patient survival and, with timely dietetic management, helped them wean off the tube reliance with more confidence.
  
  
  CONCLUSIONS
  It is essential that patients and care-givers attend pretreatment clinics to discuss nutritional support via the artificial route; their quality of life can be enhanced if guided through a specialist support pathway based at the clinical site where they initiated their care, with links to key agencies.
authors.affiliation: Food, Nutrition and Dietetics, Department of Health and Human Sciences, London Metropolitan University, London, UK.
authors.forename: K M
authors.initials: KM
authors.lastname: Mayre-Chilton
authors.forename: B P
authors.initials: BP
authors.lastname: Talwar
authors.forename: L M
authors.initials: LM
authors.lastname: Goff
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003625:Data Collection; D004046:Dietetics; D004750:Enteral Nutrition / Q000379:methods*; D005260:Female; D017144:Focus Groups; D005774:Gastrostomy / Q000379:methods*; D006258:Head and Neck Neoplasms / Q000628:therapy*; D006801:Humans; D007407:Interviews as Topic; D008131:London; D008297:Male; D008875:Middle Aged; D011788:Quality of Life