title: Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer.
abstract: OBJECTIVE
  In order to improve the service delivery for the parents and carers of adolescents and young adults (AYAs) with cancer, it is important to develop measures which assess the specific issues and concerns faced by this group. The aims of this study were to describe the development and acceptability of a measure of unmet needs of parents and carers of AYA cancer survivors and to assess the prevalence of unmet needs among the respondents.
  
  
  METHODS
  A literature search and focus groups with consumers and health professionals were used to inform item development. AYA cancer survivors and their parents and carers were identified from seven hospitals in Australia. Parents and carers who consented for their contact details to be released to the research team were sent a paper-and-pencil questionnaire. One mailed reminder and one phone call reminder were made to non-responders.
  
  
  RESULTS
  The unmet needs survey consisted of eight domains and 150 items: (1) cancer treatment staff, (2) cancer treatment centre, (3) study, (4) work, (5) information, (6) feelings, (7) relationships and (8) daily life. Eighty-three parents and carers completed the survey. The mean number of high or very high unmet needs reported was 24, with information needs among the most prevalent high/very high unmet needs.
  
  
  CONCLUSIONS
  The questionnaire developed has demonstrable face and content validity and acceptability. Unmet needs are prevalent among parents and carers of AYA cancer survivors, suggesting the need for further psychometric testing of the measure.
authors.affiliation: Priority Research Centre for Health Behaviour, Faculty of Health, The University of Newcastle, Callaghan, NSW, Australia. Mariko.Carey@newcastle.edu.au
authors.forename: Mariko L
authors.initials: ML
authors.lastname: Carey
authors.forename: Tara
authors.initials: T
authors.lastname: Clinton-McHarg
authors.forename: Robert William
authors.initials: RW
authors.lastname: Sanson-Fisher
authors.forename: Anthony
authors.initials: A
authors.lastname: Shakeshaft
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001315:Australia; D017028:Caregivers / Q000523:psychology; D003695:Delivery of Health Care / Q000458:organization & administration; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology*; D010290:Parents / Q000523:psychology; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D017741:Survivors; D055815:Young Adult