title: Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers.
abstract: OBJECTIVE
  The ability for adolescents with cancer (AWC) to engage in disease self-management may result in improved cancer outcomes and quality-of-life ratings for this group. Despite this, a comprehensive self-management program for this group is yet to be developed. To ensure that self-management programming developed for AWC meets the needs of this group, discussion with key stakeholders (i.e., AWC, parents, and healthcare providers) is required.
  
  
  METHODS
  A descriptive qualitative design was used. Adolescents (n = 29) who varied in age (12 to 18 years) and type of cancer, their parents (n = 30) and their healthcare providers (n = 22) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focus-group interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes.
  
  
  RESULTS
  Four major themes, which captured the self-management needs of AWC, emerged from the data. These themes were: (1) disease knowledge and cancer care skills, (2) knowledge and skills to support effective transition to adult healthcare, (3) delivery of AWC-accessible healthcare services, and (4) supports for the adolescent with cancer.
  
  
  CONCLUSIONS
  In order to provide comprehensive, relevant, and acceptable self-management programs to AWC, the voices of this population, their parents, and healthcare providers should be considered. Findings from this study will be used to develop and evaluate cancer self-management programming for AWC.
  
  
  CONCLUSIONS
  Self-management represents an important avenue for exploration into improving cancer outcomes and quality of life for survivors of cancers during adolescence.
authors.affiliation: Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada. jennifer.stinson@sickkids.ca
authors.forename: J N
authors.initials: JN
authors.lastname: Stinson
authors.forename: L
authors.initials: L
authors.lastname: Sung
authors.forename: A
authors.initials: A
authors.lastname: Gupta
authors.forename: M E
authors.initials: ME
authors.lastname: White
authors.forename: L A
authors.initials: LA
authors.lastname: Jibb
authors.forename: E
authors.initials: E
authors.lastname: Dettmer
authors.forename: N
authors.initials: N
authors.lastname: Baker
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003266:Continuity of Patient Care / Q000458:organization & administration*; D005260:Female; D005500:Follow-Up Studies; D006282:Health Personnel; D006801:Humans; D008297:Male; D020380:Needs Assessment; D009369:Neoplasms / Q000628:therapy*; D016487:Parenting; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D010865:Pilot Projects; D011320:Primary Health Care; D011788:Quality of Life; D012648:Self Care; D017741:Survivors