References
- D’Agostino NM, Edelstein K. Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development. J Psychosoc Oncol. 2013;31(6):585–600. doi:https://doi.org/10.1080/07347332.2013.835018
- Huang IC, Brinkman TM, Armstrong GT, Leisenring W, Robison LL, Krull KR. Emotional distress impacts quality of life evaluation: a report from the Childhood Cancer Survivor Study. J Cancer Surviv. 2017;11(3):309–319. doi:https://doi.org/10.1007/s11764-016-0589-5
- Kuhlthau K, Luff D, Delahaye J, et al. Health-related quality of life of adolescent and young adult survivors of central nervous system tumors: identifying domains from a survivor perspective. J Pediatr Oncol Nurs. 2015;32(6):385–393. doi:https://doi.org/10.1177/1043454214563752
- Zebrack BJ, Corbett V, Embry L, et al. Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psychooncology. 2014;23(11):1267–1275. doi:https://doi.org/10.1002/pon.3533
- Roddy E, Mueller S. Late effects of treatment of pediatric central nervous system tumors. J Child Neurol. 2016;31(2):237–254. doi:https://doi.org/10.1177/0883073815587944
- Satariano S. The ‘late effects’ of paediatric brain tumours and the implications for education settings. Educational & Child Psychology. 2016;33(1):20–33.
- Zebrack BJ, Block R, Hayes-Lattin B, et al. Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer. 2013;119(1):201–214. doi:https://doi.org/10.1002/cncr.27713
- de Ruiter MA, Schouten-van Meeteren AYN, van Vuurden DG, et al. Psychosocial profile of pediatric brain tumor survivors with neurocognitive complaints. Qual Life Res. 2016;25(2):435–446. doi:https://doi.org/10.1007/s11136-015-1091-7
- Essig S, Steiner C, Kuehni CE, Weber H, Kiss A. Improving communication in adolescent cancer care: a Multiperspective Study. Pediatr Blood Cancer. 2016;63(8):1423–1430. doi:https://doi.org/10.1002/pbc.26012
- SanGiacomo N, Toth J, Hobbie W, et al. Challenges to family management for caregivers of adolescent and young adult survivors of childhood brain tumors [Formula: see text]. J Pediatr Oncol Nurs. 2019;36(6):402–412. doi:https://doi.org/10.1177/1043454219844229
- Stinson JN, Sung L, Gupta A, et al. Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers. J Cancer Surviv. 2012;6(3):278–286. doi:https://doi.org/10.1007/s11764-012-0222-1
- Schulte F. Social competence in pediatric brain tumor survivors: breadth versus depth. Curr Opin Oncol. 2015;27(4):306–310. doi:https://doi.org/10.1097/CCO.0000000000000193
- Castellino SM, Ullrich NJ, Whelen MJ, Lange BJ. Developing interventions for cancer-related cognitive dysfunction in childhood cancer survivors. J Natl Cancer Inst. 2014;106(8):dju186. doi:https://doi.org/10.1093/jnci/dju186
- Hobbie WL, Ogle S, Reilly M, et al. Adolescent and young adult survivors of childhood brain tumors: life after treatment in their own words. Cancer Nurs. 2016;39(2):134–143. doi:https://doi.org/10.1097/NCC.0000000000000266
- Northman L, Ross S, Morris M, Tarquini S. Supporting pediatric cancer survivors with neurocognitive late effects: a model of care. J Pediatr Oncol Nurs. 2015;32(3):134–142. doi:https://doi.org/10.1177/1043454214554012
- Renovanz M, Hechtner M, Janko M, et al. Factors associated with supportive care needs in glioma patients in the neuro-oncological outpatient setting. J Neurooncol. 2017;133(3):653–662. doi:https://doi.org/10.1007/s11060-017-2484-y
- Heitzer AM, Ris D, Raghubar K, Kahalley LS, Hilliard ME, Gragert M. Facilitating transitions to adulthood in pediatric brain tumor patients: the role of neuropsychology. Curr Oncol Rep. 2020;22(10):102. doi:https://doi.org/10.1007/s11912-020-00963-2
- Hocking MC, McCurdy M, Turner E, et al. Social competence in pediatric brain tumor survivors: application of a model from social neuroscience and developmental psychology. Pediatr Blood Cancer. 2015;62(3):375–384. doi:https://doi.org/10.1002/pbc.25300
- Nicklin E, Velikova G, Hulme C, et al. Long-term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review. Psychooncology. 2019;28(3):477–487. doi:https://doi.org/10.1002/pon.4989
- Puhr A, Ruud E, Anderson V, et al. Self-reported executive dysfunction, fatigue, and psychological and emotional symptoms in physically well-functioning long-term survivors of pediatric brain tumor. Dev Neuropsychol. 2019;44(1):88–103. doi:https://doi.org/10.1080/87565641.2018.1540007
- Bourque CJ, Bonanno M, Dumont É, et al. The integration of resource patients in collaborative research: a mixed method assessment of the nesting dolls design. Patient Educ Couns. 2020;103(9):1830–1838. doi:https://doi.org/10.1016/j.pec.2020.04.011
- Crotty M. 1998. The Foundations of Social Research: Meaning and Perspective in the Research Process. London: Sage.
- Green J, Thorogood N. 2009. Qualitative Methods for Health Research. Thousand Oaks: Sage.
- Miles M, Huberman AM, Saldana J. 2013. Qualitative Data Analysis. A Methods Sourcebook. Thousand Oaks: Sage.
- Holstein JA, Gubrium JF. 1995. The Active Interview (Qualitative Research Methods. Thousand Oaks: Sage.
- Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–1760. doi:https://doi.org/10.1177/1049732315617444
- Patton MQ. 2002. Qualitative Research and Evaluation Methods. Thousand Oaks: Sage.
- Patterson P, Millar B, Desille N, McDonald F. The unmet needs of emerging adults with a cancer diagnosis: a Qualitative Study. Cancer Nurs. 2012;35(3):E32–E40. doi:https://doi.org/10.1097/NCC.0b013e31822d9105
- Boyatzis RE. 1998. Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks: Sage.
- Jackson K, Bazeley P. 2019. Qualitative Data Analysis with NVivo. London: Sage.
- Legard R, Keegan J, Ward K. In-depth interviews. In: Ritchie J, Lewis J., eds. Qualitative Research Practice: A Guide for Social Science Students and Researchers. London: Sage; 2003:pp. 138–169.
- Saunders B, Sim J, Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893–1907. doi:https://doi.org/10.1007/s11135-017-0574-8
- Denzin NK. 2009. The Research Act: A Theoretical Introduction to Sociological Methods. New York: Aldine Transaction.
- Phillips E, Montague J, Archer S . "A peculiar time in my life": making sense of illness and recovery with gynaecological cancer. Int J Qual Stud Health Well-Being. 2017;12(1):1364603. doi:https://doi.org/10.1080/17482631.2017.1364603
- Barakat LP, Galtieri LR, Szalda D, Schwartz LA. Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer. Support Care Cancer. 2016;24(2):823–832. doi:https://doi.org/10.1007/s00520-015-2849-8
- Buchbinder DK, Fortier MA, Osann K, et al. Quality of life among parents of adolescent and young adult brain tumor survivors. J Pediatr Hematol Oncol. 2017;39(8):579–584. doi:https://doi.org/10.1097/MPH.0000000000000947
- Cheung CK, Zebrack B. What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Support Care Cancer. 2017;25(1):119–126. doi:https://doi.org/10.1007/s00520-016-3396-7
- Mallya S, Daniels M, Kanter C, et al. A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers. Support Care Cancer. 2020;28(6):2659–2667. doi:https://doi.org/10.1007/s00520-019-05069-5
- Bonanno M, Ogez D, Bourque CJ, Laverdiere C, Sultan S. The role of pediatric psychologists in the transition of youth to adult health care: a descriptive qualitative study of their practice and recommendations. J Clin Psychol Med Settings. 2019;26(3):353–363. doi:https://doi.org/10.1007/s10880-018-9591-6
- Keats MR, Shea K, Parker L, Stewart SA, Flanders A, Bernstein M. After childhood cancer: a qualitative study of family physician, parent/guardian, and survivor information needs and perspectives on long-term follow-up and survivorship care plans. J Cancer Educ. 2019;34(4):638–646. doi:https://doi.org/10.1007/s13187-018-1349-1
- Raj SP, Narad ME, Salloum R, et al. Development of a web-based psychosocial intervention for adolescent and young adult survivors of pediatric brain tumor. J Adolesc Young Adult Oncol. 2018;7(2):187–195. doi:https://doi.org/10.1089/jayao.2017.0084
- Chevalier JM, Buckles DJ. 2013. Participatory Action Research: Theory and Methods for Engaged Inquiry. H. T. A. Francis ed. London: Routledge.