{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,5]],"date-time":"2026-06-05T01:32:18Z","timestamp":1780623138672,"version":"3.54.1"},"reference-count":45,"publisher":"MDPI AG","issue":"9","license":[{"start":{"date-parts":[[2025,8,26]],"date-time":"2025-08-26T00:00:00Z","timestamp":1756166400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Tour de Cure","award":["RSP-013-2025"],"award-info":[{"award-number":["RSP-013-2025"]}]},{"name":"Australian Government Research Training Program (RTP)","award":["RSP-013-2025"],"award-info":[{"award-number":["RSP-013-2025"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>Background\/Objectives: Parents report unmet information needs relating to childhood brain tumors. Existing research shows that providing information to families supports self-efficacy and well-being. The project therefore aimed to co-design resources tailored to the informational needs of families navigating childhood brain tumors in Australia. Methods: Mixed methods were used across multiple phases. A landscape analysis in Phase 1 confirmed the gap in Australian resources as well as the identification of international resources suitable to inform local solutions. Following the Double Diamond Design Framework, subsequent phases of the project aimed to discover and define the problems faced by families before developing and delivering the solution. Parents of children with brain tumors participated in a journey mapping workshop, content adaptation through feedback, and an online survey to determine the preferred delivery mode of information. Clinicians provided iterative feedback as the resource was developed and refined. Results: Nine mothers participated in journey mapping and iterative adaptation of the resource along with twelve clinicians. There were 46 respondents to the survey, which identified a preference for multi-modal delivery of information, and 23 clinical and consumer reviewers in the final revision phase. The process of adaptation is presented, providing transparency on the development of this national resource. Conclusions: The use of self-efficacy theory and co-design was pivotal in this project. Integration of concepts from self-efficacy moves beyond simply presenting information to empowering the audience to feel capable of the task ahead of them. Co-design ensured the content and tone of the resulting resource are fit-for-purpose from the perspective of both clinicians and consumers. The resource is available as a physical book, digital resource, and audiobook and disseminated through children\u2019s hospitals, professional networks, and brain tumor support groups.<\/jats:p>","DOI":"10.3390\/children12091126","type":"journal-article","created":{"date-parts":[[2025,8,27]],"date-time":"2025-08-27T08:19:32Z","timestamp":1756282772000},"page":"1126","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Co-Designing a National Family Handbook for Childhood Brain Tumor"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1399-895X","authenticated-orcid":false,"given":"Melanie L.","family":"Rolfe","sequence":"first","affiliation":[{"name":"Cancer and Palliative Care Outcomes Centre at Centre for Children\u2019s Health Research, School of Nursing, Queensland University of Technology, 62 Graham Street, South Brisbane, Brisbane, QLD 4101, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Evonne","family":"Miller","sequence":"additional","affiliation":[{"name":"Design Lab, School of Design, Queensland University of Technology, Z4, Kelvin Grove Campus, Creative Industries Precinct, Musk Avenue, Kelvin Grove, Brisbane, QLD 4059, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0457-8788","authenticated-orcid":false,"given":"Liesje","family":"Donkin","sequence":"additional","affiliation":[{"name":"Department of Psychology and Neuroscience, School of Clinical Sciences, Auckland University of Technology; 90 Akoranga Drive, Northcote, Auckland 0627, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8837-7440","authenticated-orcid":false,"given":"Stuart","family":"Ekberg","sequence":"additional","affiliation":[{"name":"Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Sturt Road, Bedford Park, Adelaide, SA 5042, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1602-4544","authenticated-orcid":false,"given":"Natalie K.","family":"Bradford","sequence":"additional","affiliation":[{"name":"Cancer and Palliative Care Outcomes Centre at Centre for Children\u2019s Health Research, School of Nursing, Queensland University of Technology, 62 Graham Street, South Brisbane, Brisbane, QLD 4101, Australia"},{"name":"Viertel Cancer Research Centre at Cancer Council Queensland, 553 Gregory Terrace, Spring Hill, Brisbane, QLD 4006, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,8,26]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"942","DOI":"10.1002\/pon.6136","article-title":"Supporting families through paediatric brain tumour: Unmet needs and suggestions for change","volume":"32","author":"Young","year":"2023","journal-title":"Psycho-Oncol."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"86","DOI":"10.1093\/jpepsy\/jsv074","article-title":"Systematic review: A reevaluation and update of the integrative (trajectory) model of pediatric medical traumatic stress","volume":"41","author":"Price","year":"2016","journal-title":"J. Pediatr. Psychol."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"789","DOI":"10.1097\/MOP.0000000000000837","article-title":"Late effects of pediatric brain tumors","volume":"31","author":"Diver","year":"2019","journal-title":"Curr. Opin. Pediatr."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"3050","DOI":"10.1002\/cncr.32186","article-title":"Neuropsychological and socioeconomic outcomes in adult survivors of pediatric low-grade glioma","volume":"125","author":"Ris","year":"2019","journal-title":"Cancer"},{"key":"ref_5","first-page":"5157","article-title":"Health-related quality of life in long-term survivors of childhood brain tumors: A population-based cohort study","volume":"30","author":"Ljungman","year":"2022","journal-title":"Support. Care Cancer"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"218","DOI":"10.1177\/1043454218762797","article-title":"Adding a parent to the brain tumor team: Evaluating a peer support intervention for parents of children with brain tumors","volume":"35","author":"Riley","year":"2018","journal-title":"J. Pediatr. Oncol. Nurs."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"244","DOI":"10.1111\/j.1365-2214.2010.01164.x","article-title":"Post-traumatic stress symptoms in childhood brain tumour survivors and their parents","volume":"37","author":"Bruce","year":"2011","journal-title":"Child: Care Health Dev."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"169","DOI":"10.1207\/S15326888CHC3003_1","article-title":"Posttraumatic stress and general distress among parents of children surviving a brain tumor","volume":"30","author":"Fuemmeler","year":"2001","journal-title":"Child. Health Care"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"e29470","DOI":"10.1002\/pbc.29470","article-title":"Family functioning and adaptation following pediatric brain tumor: A systematic review","volume":"69","author":"Moscato","year":"2022","journal-title":"Pediatr. Blood Cancer"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"418","DOI":"10.1093\/nop\/npad010","article-title":"Caregivers Matter: Neurological vulnerability for pediatric brain tumor survivors","volume":"10","author":"Moscato","year":"2023","journal-title":"Neuro-Oncol. Pract."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"292","DOI":"10.1111\/cch.13042","article-title":"Experiences of medical traumatic stress in parents of children with medical complexity","volume":"49","author":"Dewan","year":"2023","journal-title":"Child Care Health Dev."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"228","DOI":"10.1177\/1055665619869146","article-title":"Medical stress reactions and personal growth in parents of children with a rare craniofacial condition","volume":"57","author":"Feragen","year":"2020","journal-title":"Cleft Palate-Craniofacial J."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"106102","DOI":"10.1016\/j.jcomdis.2021.106102","article-title":"Persistence, strength, isolation, and trauma: An ethnographic exploration of raising children with cleft palate","volume":"91","author":"Cronin","year":"2021","journal-title":"J. Commun. Disord."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"1643","DOI":"10.1002\/pon.5745","article-title":"Families\u2019 experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research","volume":"30","author":"Young","year":"2021","journal-title":"Psycho-Oncol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"748","DOI":"10.1111\/bjep.12474","article-title":"I could have used a lot more help than I had: A qualitative systematic review and synthesis of families\u2019 experiences of paediatric brain tumour and schooling","volume":"92","author":"Young","year":"2022","journal-title":"Br. J. Educ. Psychol."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"262","DOI":"10.1016\/j.burns.2023.06.014","article-title":"\u201cIt\u2019s a big trauma for the family\u201d: A qualitative insight into the psychological trauma of paediatric burns from the perspective of mothers","volume":"50","author":"Wickens","year":"2024","journal-title":"Burns"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"102463","DOI":"10.1016\/j.ejon.2023.102463","article-title":"Quality of life and family functioning soon after paediatric brain tumour diagnosis: A cross-sectional observational study","volume":"67","author":"Young","year":"2023","journal-title":"Eur. J. Oncol. Nurs."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"1681","DOI":"10.1177\/1359105318770728","article-title":"Parental distress in response to childhood medical trauma: A mediation model","volume":"25","author":"Currie","year":"2020","journal-title":"J. Health Psychol."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1080\/08880018.2018.1524954","article-title":"Post traumatic stress symptoms in parents of children with cancer: A mediation model","volume":"35","author":"Perez","year":"2018","journal-title":"Pediatr. Hematol. Oncol."},{"key":"ref_20","unstructured":"Rolfe, M.L., Miller, E., Donkin, L., Ekbert, S., and Bradford, N.K. (2025). \u2018Still in Survival Mode\u2019: Trauma-Mapping Parent Experiences of Paediatric Brain Tumour. Qual. Health Res., in press."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"1609406920981324","DOI":"10.1177\/1609406920981324","article-title":"The Experiences and Healthcare Needs of Families Living with Pediatric Brain Tumor: A Longitudinal Qualitative Study Protocol","volume":"19","author":"Young","year":"2020","journal-title":"Int. J. Qual. Methods"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"317","DOI":"10.1111\/j.1746-1561.1986.tb05761.x","article-title":"Self-efficacy and health education","volume":"56","author":"Lawrance","year":"1986","journal-title":"J. Sch. Health"},{"key":"ref_23","doi-asserted-by":"crossref","unstructured":"Zeigler-Hill, V., and Shackelford, T.K. (2020). Self-Efficacy Theory. Encyclopedia of Personality and Individual Differences, Springer International Publishing.","DOI":"10.1007\/978-3-319-24612-3"},{"key":"ref_24","unstructured":"Ramachaudran, V.S. (1994). Self-Efficacy in Encyclopedia of Human Behavior, Academic Press."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"1079","DOI":"10.1002\/pbc.22168","article-title":"Factors affecting the delivery of family-centered care in pediatric oncology","volume":"53","author":"Dix","year":"2009","journal-title":"Pediatr. Blood Cancer"},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"1926","DOI":"10.1007\/s10826-019-01418-4","article-title":"The Benefits of Family-Centered Care for Parental Self-Efficacy and Psychological Well-being in Parents of Children with Cancer","volume":"28","author":"Salvador","year":"2019","journal-title":"J. Child Fam. Stud."},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"e3222211","DOI":"10.17061\/phrp3222211","article-title":"Co-creation, co-design, co-production for public health: A perspective on definition and distinctions","volume":"32","author":"Vargas","year":"2022","journal-title":"Public Health Res. Pract."},{"key":"ref_28","unstructured":"Man, M., Abrams, T., and McLeod, R. (2019). Implementing and Evaluating Co-Design, New Philanthropy Capital."},{"key":"ref_29","unstructured":"Design Council (2025, June 10). The Double Diamond. Available online: https:\/\/www.designcouncil.org.uk\/our-resources\/the-double-diamond\/."},{"key":"ref_30","unstructured":"Dijkstra, M., van der Bijl-Brouwer, M., Ludden, G.D.S., and van der Bijl, W.M. (2015, January 2\u20135). Innovation in the Medical Design Industry through the use of Phenomenological Themes. Proceedings of the World Conference on Design Research, IASDR 2015: Interplay, Brisbane, Australia. Available online: https:\/\/research.utwente.nl\/files\/5465117\/IASDR_2015_Dijkstraetal%20copy.pdf."},{"key":"ref_31","unstructured":"van der Bijl-Brouwer, M., and Dorst, K. (2014, January 6\u201310). How deep is deep? A four-layer model of insights into human needs for design innovation. Proceedings of the 9th International Conference on Design and Emotion 2014: The Colors of Care, Bogota, Colombia."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1016\/j.destud.2017.06.003","article-title":"Advancing the strategic impact of human-centred design","volume":"53","author":"Dorst","year":"2017","journal-title":"Des. Stud."},{"key":"ref_33","doi-asserted-by":"crossref","unstructured":"Ly, S., Runacres, F., and Poon, P. (2021). Journey mapping as a novel approach to healthcare: A qualitative mixed methods study in palliative care. BMC Health Serv. Res., 21.","DOI":"10.1186\/s12913-021-06934-y"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"190","DOI":"10.29074\/ascls.28.3.190","article-title":"A narrative approach to qualitative inquiry","volume":"28","author":"Butina","year":"2015","journal-title":"Clin. Lab. Sci."},{"key":"ref_35","unstructured":"Lal Das, D.K., and Bhaskaran, V. (2008). Content analysis. Research Methods for Social Work, Rawat."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"58","DOI":"10.1186\/s13012-019-0898-y","article-title":"The FRAME: An expanded framework for reporting adaptations and modifications to evidence-based interventions","volume":"14","author":"Baumann","year":"2019","journal-title":"Implement. Sci."},{"key":"ref_37","unstructured":"Brain Tumour Foundation of Canada (2011). Pediatric Brain Tumour Handbook, Brain Tumour Foundation of Canada."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1348\/135910701169106","article-title":"Do self-help interventions in health education lead to cognitive changes, and do cognitive changes lead to behavioural change?","volume":"6","author":"Dijkstra","year":"2001","journal-title":"Br. J. Health Psychol."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1007\/BF01663995","article-title":"Analysis of self-efficacy theory of behavioral change","volume":"1","author":"Bandura","year":"1977","journal-title":"Cogn. Ther. Res."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"e31199","DOI":"10.1002\/pbc.31199","article-title":"Quality of life and family functioning 12 months after diagnosis of childhood brain tumour: A longitudinal cohort study","volume":"71","author":"Young","year":"2024","journal-title":"Pediatr. Blood Cancer"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1136\/bmjqs-2019-009570","article-title":"Use and reporting of experience-based codesign studies in the healthcare setting: A systematic review","volume":"29","author":"Green","year":"2020","journal-title":"BMJ Qual. Saf."},{"key":"ref_42","first-page":"907","article-title":"Gender differences in the psychosocial experience of parents of children with cancer: A review of the literature","volume":"18","author":"Clarke","year":"2009","journal-title":"Psycho-Oncol. J. Psychol. Soc. Behav. Dimens. Cancer"},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"44","DOI":"10.1016\/j.jss.2023.07.029","article-title":"Evaluation of a Novel Question Prompt List in Pediatric Surgical Oncology","volume":"292","author":"Carlisle","year":"2023","journal-title":"J. Surg. Res."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"1454","DOI":"10.1016\/j.pec.2015.05.015","article-title":"Question prompt lists in health consultations: A review","volume":"98","author":"Sansoni","year":"2015","journal-title":"Patient Educ. Couns."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1177\/0269216319888988","article-title":"Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care","volume":"34","author":"Ekberg","year":"2020","journal-title":"Palliat. Med."}],"container-title":["Children"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2227-9067\/12\/9\/1126\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,9]],"date-time":"2025-10-09T18:33:24Z","timestamp":1760034804000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2227-9067\/12\/9\/1126"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8,26]]},"references-count":45,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2025,9]]}},"alternative-id":["children12091126"],"URL":"https:\/\/doi.org\/10.3390\/children12091126","relation":{},"ISSN":["2227-9067"],"issn-type":[{"value":"2227-9067","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8,26]]}}}