Family information needs at childhood cancer treatment completion
Open accessAbstract
Background: Despite the recognized importance of information provision across the cancer trajectory, little research has investigated family information needs recently after childhood cancer. This mixed‐methods, multiperspective, study explored the information needs of families of childhood cancer survivors in the first year post‐treatment. Procedure: In total, 112 semi‐structured telephone interviews were conducted with 19 survivors (mean age 16.2 years, off treatment for ≤36 months), 44 mothers, 34 fathers, and 15 siblings. Interviews were analyzed inductively, line‐by‐line, using the framework of Miles and Huberman. Emergent themes were cross‐tabulated by sample characteristics using QSR NVivo8. Results: Participant views were mixed regarding the need for a “finishing treatment review” with their oncologist (the primary information source for most families); however, many mothers (29/44) and fathers (17/34) and most siblings (14/15) reported receiving insufficient information post‐treatment. Information regarding fertility and how to prepare for likely post‐treatment challenges were the most cited unmet needs. Online support was ranked highest by survivors (mean score: 7/2/10) and siblings (7.4/10), whilst parents preferred an information booklet (often due to concerns about accessing accurate and relevant information from the Internet). While many participants reported feelings of isolation/loneliness, many were reluctant to attend face‐to‐face support groups/seminars. Conclusions: Family members of survivors may experience the most acute unmet needs for information about fertility and in preparation for post‐treatment challenges. However, provision of the correct amount of information at the right time for each family member during a highly stressful period remains clinically challenging. Pediatr Blood Cancer 2012; 58: 621–626. © 2011 Wiley Periodicals, Inc.
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Major themes of difficulty in the post-treatment period include fear of cancer recurrence, isolation, and loneliness, with substantial unmet needs for information about relapse surveillance and how to return to normality.
“Major themes of difficulty in the post-treatment period can include fear of cancer recurrence, isolation, and loneliness, with substantial unmet needs for information about relapse surveillance and how to ‘return to normality’ [10-12].”
From Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. (2015) · cites this paper as [10]
The Abstract and the section on supplementary information interventions (page not provided) report post-treatment isolation and loneliness, and say parents lacked information about coping with fear of recurrence and detecting worrying symptoms. The paper also reports unmet needs for preparation for post-treatment challenges, but it does not identify relapse surveillance or how to ‘return to normality’ as substantial unmet information needs; it identifies fertility information as the most commonly cited unmet need. (LLM, conf=0.84)
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- Authors
- Wakefield, C. E., Butow, P., Fleming, C. A. K., Daniel, G., & Cohn, R. J.
- Affiliations
- UNSW Sydney (AU)
- The University of Sydney (AU)
- Corresponding author
- Wakefield, Claire E.
- Venue
- Pediatric Blood & Cancer
- Publisher
- Wiley
- Published
- 2011-09-09
- Volume
- 58
- Issue
- 4
- Pages
- 621-626
- ISSN
- 1545-5009 (ISSN-L)
- 1545-5017
- OpenAlex
- W2079174199
- Cited by
- 104
- References
- 48
- Citations by year
- 2026: 1 · 2025: 10 · 2024: 3 · 2023: 4 · 2022: 10 · 2021: 9 · 2020: 3 · 2019: 12 · 2018: 9 · 2017: 7 · 2016: 11 · 2015: 8 · 2014: 7 · 2013: 9 · 2012: 1
- FWCI
- 5.04
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Licence
- Locations
- Pediatric Blood & Cancer (publishedVersion)
- PubMed (publishedVersion)
- UNSWorks (University of New South Wales, Sydney, Australia) (submittedVersion, cc-by-nc-nd)
- Funders
- The Leukaemia Foundation of Australia
- Sydney Children's Hospital Foundation
- National Health and Medical Research Council of Australia (ID 510421)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Keywords
- childhood cancer survivors, family information needs, post-treatment care, unmet information needs, fertility after cancer treatment, parents of cancer survivors, online support, information provision, social isolation, support groups
- MeSH terms
- Adolescent, Adult, Child, Child, Preschool, Family, Female, Humans, Interviews as Topic, Male, Middle Aged, Neoplasms, Patient Education as Topic, Survivors
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