Support after the completion of cancer treatment: perspectives of Australian adolescents and their families: Support after the completion of childhood cancer treatment
Open accessAbstract
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.
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Factors related to staff availability, models of assessment and delivery of services, and size and location of paediatric cancer units hindered provision of support.
“Factors related to staff availability, models of assessment and delivery of services, and size and location of paediatric cancer units hindered provision of support.”
From Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer (2018) · cites this paper as [10]
The Discussion identifies limited access to specialised psychologists, long waits, and poorer access in rural and remote areas as barriers to post-treatment support. The section on health professionals also reports difficulty accessing psychology services outside business hours. Our copy does not identify models of assessment or service delivery, or the size and location of paediatric cancer units, as factors hindering support. (LLM, conf=0.85)
Experimental — accuracy not yet measuredFormal psychological support was difficult to access and rarely received by parents after completion of cancer treatment.
“The results are in line with findings from an Australian study showing that formal psychological support was difficult to access and rarely received by parents after completion of cancer treatment.”
Each Cascade module applies CBT techniques to the key domains of concern identified in the authors' previous research.
“Each Cascade module applies CBT techniques to the key domains of concern identified in our previous research [4,49] (see Table 2).”
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Self-citation
- Authors
- Wakefield, C. E., McLoone, J., Butow, P., Lenthen, K., & Cohn, R. J.
- Affiliations
- UNSW Sydney (AU)
- The University of Sydney (AU)
- Sydney Children's Hospital (AU)
- Venue
- European Journal of Cancer Care
- Publisher
- Wiley
- Published
- 2013-06-03
- Volume
- 22
- Issue
- 4
- Pages
- 530-539
- ISSN
- 0961-5423 (ISSN-L)
- OpenAlex
- W2121620847
- Cited by
- 58
- References
- 47
- Citations by year
- 2026: 3 · 2025: 2 · 2024: 6 · 2023: 1 · 2022: 2 · 2021: 7 · 2020: 6 · 2019: 6 · 2018: 8 · 2017: 3 · 2016: 7 · 2015: 3 · 2014: 3
- FWCI
- 3.99
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- European Journal of Cancer Care (publishedVersion)
- PubMed (publishedVersion)
- UNSWorks (University of New South Wales, Sydney, Australia) (submittedVersion, cc-by-nc-nd)
- Funders
- Children's Hospital Foundation
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- adolescent cancer survivors, young adult cancer survivors, post-treatment support, family caregivers, emotional support, psychological support, financial support, social workers, psychologists, help-seeking, survivorship care, family burden
- MeSH terms
- Adolescent, Australia, Child, Family, Female, Health Services Needs and Demand, Humans, Male, Neoplasms, Surveys and Questionnaires, Social Support, Patient Satisfaction, Survivors, Young Adult
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