Abstract
Childhood cancer impacts the child patient as well as the family and caregivers throughout diagnosis, treatment, and survivorship. Secondary analysis of qualitative data revealed the critical role of parents’ adaptability and flexibility when navigating advocacy decisions about their child’s schooling following diagnosis and through survivorship. After cancer, adjusting to school means adjusting to a new normal creating challenges related to curriculum, peers, and educators that can affect quality of life. Critically, parents’ adjustment to a new advocacy role emerged as an important consideration. Concepts of social and cultural capital aid in understanding the experiences of parents whose children have returned to school following their successful treatment for pediatric cancer. Framed in this way, how parents mobilize (or do not mobilize) these forms of capital as they devise strategies to support their children are understood. This study interprets parent reports and actions as taken often in the hope that they will help both their own child and others that follow, creating mutual benefit for the network of people touched by cancer.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
Percentages have been rounded and may exceed 100%.
References
Antill Keener T (2019) Childhood Cancer-related fatigue and day-to-day quality of life. J Pediatr Oncol Nurs 36(2):74–85
Peckham VC, Meadows AT, Bartel N, Marrero O (1988) Educational late effects in long-term survivors of childhood acute lymphocytic leukemia. Pediatrics 81(1):127–133
Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, Terzak JM, Ness KK (2009) Social outcomes in the childhood cancer survivor study cohort. J Clin Oncol 27(14):2390–2395
Moore BD III (2005) Neurocognitive outcomes in survivors of childhood cancer. J Pediatr Psychol 30(1):51–63
Cohen MH (1993) The unknown and the unknowable-managing sustained uncertainty. West J Nurs Res 15(1):77–96
Pearson LJ, Oyebode F (2009) Social capital and childhood psychiatric disorders: a cross-sectional study. Clin Child Psychol Psychiatry 14(2):183–194
Bourdieu P (1986) The forms of capital. In: Richardson JG (ed) Handbook of theory and research for the sociology of education. Greenwood, New York, pp 241–258
Pearce N, Davey Smith G (2003) Is social capital the key to inequalities in health? Am J Public Health 93(1):122–129
Rose R (2000) How much does social capital add to individual health? Soc Sci Med 51(9):1421–1435
Morrow V (2001) Networks and neighbourhoods: children’s and young people’s perspectives. Health Education Authority, London
Trainor AA (2010) Reexamining the promise of parent participation in special education: an analysis of cultural and social capital. Anthropol Educ Q 41(3):245–263
Ellison NB, Steinfield C, Lampe C (2011) Connection strategies: social capital implications of Facebook-enabled communication practices. New Media Soc 13(6):873–892
Able T (2007) Cultural capital in health promotion. In: McQueen D, McQueen DV, Kickbusch I, Potvin L, Balbo L, Abel T, Pelikan JM (eds) Health and modernity: the role of theory in health promotion, Chapter 5 edn. Springer Science & Business Media, New York, pp 43–72
Lamont M, Lareau A (1988) Cultural capital: allusions, gaps and glissandos in recent theoretical developments. Sociological Theory 6:153–168
Ohashi Y, Taguchi A, Omori J, Ozaki A (2017) Cultural capital: a concept analysis. Public Health Nurs 34(4):380–387
Paré-Blagoev EJ, Ruble K, Bryant C, Jacobson L (2019) Schooling in survivorship: understanding caregiver challenges when survivors return to school. Psycho-oncology 28(4):847–853
Ruble K, Paré-Blagoev J, Cooper S, Martin A, Jacobson LA (2019) Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry. Pediatr Blood Cancer 66(1):e27427
Heaton J (2008) Secondary analysis of qualitative data: an overview. Hist Soc Res/Historische Sozialforschung 33:33–45
Hinds PS, Vogel RJ, Clarke-Steffen L (1997) The possibilities and pitfalls of doing a secondary analysis of a qualitative data set. Qual Health Res 7(3):408–424
Szabo V, Strang VR (1997) Secondary analysis of qualitative data. Adv Nurs Sci 20(2):66–74
Seale C, Silverman D (1997) Ensuring rigour in qualitative research. Eur J Publ Health 7(4):379–384
Foley G, Timonen V (2015) Using grounded theory method to capture and analyze health care experiences. Health Serv Res 50(4):1195–1210
Urquhart C (2013) Grounded theory for qualitative research: a practical guide. Sage, Thousand Oaks
Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin 64(2):83–103
Bhatia S (2011) Disparities in cancer outcomes: lessons learned from children with cancer. Pediatr Blood Cancer 56(6):994–1002
Funding
The authors would like to thank the parents and stakeholders participating in the PCORI-funded Engagement (#3916) project for their expertise in capturing pertinent content for the survey, and the families completing the survey online. This article was made possible by additional support from training grant: T32 CA 009314 (PI: Platz).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Ethical Approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the Institutional Review Board (IRB00126818) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Beeler, D., Paré-Blagoev, E.J., Jacobson, L.A. et al. Educating Childhood Cancer Survivors: a Qualitative Analysis of Parents Mobilizing Social and Cultural Capital. J Canc Educ 36, 819–825 (2021). https://doi.org/10.1007/s13187-020-01709-1
Published:
Issue Date:
DOI: https://doi.org/10.1007/s13187-020-01709-1