title: Support after the completion of cancer treatment: perspectives of Australian adolescents and their families.
abstract: Young people recovering from cancer may lack adequate support post-treatment, yet little is known about the types of support and information young Australians and their families need. This study investigated adolescent/young adult cancer survivors' and their families' perceptions of care and support needs after completing cancer treatment. Seventy semi-structured interviews were conducted with 19 survivors (mean age 16.1 years), 21 mothers, 15 fathers and 15 siblings. Interviews were recorded, transcribed and analysed using the conceptual framework of Miles and Huberman. Post-treatment, participants regarded medical staff positively but were reluctant to ask for their help fearing it may deflect resources away from patients still receiving treatment. Appraisals of social workers' and psychologists' support post-treatment were mixed. Formal emotional support was rarely accessed and participants reported that any additional funds should be directed to greater psychological support in this period. Participants also reported the need for additional financial support post-treatment. Clinicians need to be aware that while young people and their families may not demand support post-treatment, they may 'suffer in silence' or burden family members and friends with the responsibility of providing emotional support, though they may be experiencing distress also.
authors.affiliation: Behavioural Sciences Unit, Centre for Children's Cancer and Blood Disorders, Sydney Children's Hospital, Randwick, NSW, Sydney, NSW, Australia. c.wakefield@unsw.edu.au
authors.forename: C E
authors.initials: CE
authors.lastname: Wakefield
authors.forename: J
authors.initials: J
authors.lastname: McLoone
authors.forename: P
authors.initials: P
authors.lastname: Butow
authors.forename: K
authors.initials: K
authors.lastname: Lenthen
authors.forename: R J
authors.initials: RJ
authors.lastname: Cohn
mesh_terms: D000293:Adolescent; D001315:Australia; D002648:Child; D005190:Family / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D017060:Patient Satisfaction; D012944:Social Support; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D055815:Young Adult