title: Head and neck cancer and dysphagia; caring for carers.
abstract: OBJECTIVE
  A diagnosis of head and neck cancer (HNC) is a profound event for patients and family members who play a crucial role in their care. Eating and drinking difficulties affect patients' quality of life (QOL), but the impact on the carers' QOL has not been explored. This preliminary mixed method study reports on carer QOL over time and investigates the relationship with dysphagia.
  
  
  METHODS
  Two hundred and eight HNC patients referred for (chemo)radiotherapy were asked to identify a carer and complete a health-related QOL and a swallowing QOL questionnaire at pre-treatment, 3 and 12 months post-treatment. Carers were given the Caregiver QOL-Cancer (CQOL-C) questionnaire at the same time points. A purposive sample of patient and carer dyads was observed over mealtimes and interviewed.
  
  
  RESULTS
  Seventy per cent of carers returned a questionnaire at least once. There was no change in CQOL-C scores between pre-treatment and 3 months, but a significant improvement was found between 3 and 12 months post-treatment (p = 0.012). Patient-reported outcomes accounted for 52% of variance in carer QOL measurements (R(2) = 0.52, p < 0.001). Four themes emerged from the qualitative data food provision, monitoring, motivation and changes to lifestyle.
  
  
  CONCLUSIONS
  Findings suggest a relationship between carer and patient QOL. Elsewhere, these two characteristics have been associated such that the greater the patients' physical care needs, the poorer the carers' and patients' QOL. Living with someone with dysphagia not only involves managing the physical swallowing difficulties but is also likely to impact on social activities such as participation in shared meals, leading to permanent lifestyle changes.
authors.affiliation: Institute of Health & Society, Newcastle University, Newcastle upon Tyne, NE2 4AX, UK. joanne.patterson@ncl.ac.uk
authors.forename: J M
authors.initials: JM
authors.lastname: Patterson
authors.forename: T
authors.initials: T
authors.lastname: Rapley
authors.forename: P N
authors.initials: PN
authors.lastname: Carding
authors.forename: J A
authors.initials: JA
authors.lastname: Wilson
authors.forename: E
authors.initials: E
authors.lastname: McColl
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003680:Deglutition Disorders / Q000523:psychology*; D004645:Empathy; D005190:Family / Q000523:psychology; D005260:Female; D006258:Head and Neck Neoplasms / Q000523:psychology*; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires