Abstract
This study interviewed parents to understand families’ experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Amato, M., Goretti, B., Zipoli, V., Portaccio, E., Ghezzi, A., Roscio, M., et al. (2010). Cognitive and psychosocial features in childhood and juvenile MS: Two-year follow-up. Neurology, 75, 1134–1140. https://doi.org/10.1212/WNL.0b013e3181f4d821.
Block, P., Rodriguez, E., Milazzo, M., MacAllister, W., Krupp, L., Nishida, A., et al. (2011). Building pediatric multiple sclerosis community using a disability studies framework of empowerment. Research in Social Science and Disability, 6, 85–112. https://doi.org/10.1108/S1479-3547(2011)0000006007.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa.
Chitnis, T., Glanz, B., Jaffin, S., & Healy, B. (2009). Demographics of pediatric-onset multiple sclerosis in an MS center population from the northeastern United States. Multiple Sclerosis, 15, 627–631. https://doi.org/10.1177/1352458508101933.
Cross, T. P., Shanks, A., Duffy, L., Gorman, M., Camposano, S., Chitnis, T., & Rintell, D. (2016). Parents’ experience of pediatric onset multiple sclerosis. Report to the National Multiple Sclerosis Society. Boston: Partners Health Care Retrieved from https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Research/Parent-Experience-of-MS.pdf. Accessed 17 Dec 2018.
Dusheck, J. (2015). 5 questions: Euan Ashley on diagnosing the undiagnosable. Stanford medicine news center. Retrieved from http://med.stanford.edu/news/all-news/2015/09/5-questions-euan-ashley-on-diagnosing-the-undiagnosable.html. Accessed 17 Dec 2018.
Hauenstein, E. J. (1990). The experience of distress in parents of chronically ill children: Potential or likely outcome? Journal of Clinical Child Psychology, 19, 356–364.
Hinton, D., & Kirk, S. (2015). Paediatric multiple sclerosis: A qualitative study of families' diagnosis experiences. Archives of Disease in Childhood, 100, 623–629. https://doi.org/10.1136/archdischild-2014-306523.
MacAllister, W. S., Boyd, J. R., Holland, N. J., Milazzo, M. C., & Krupp, L. B. (2007). The psychosocial consequences of pediatric multiple sclerosis. Neurology, 68(16 SUPPL. 2), S66–S69.
MacAllister, W., Christodoulou, C., Milazzo, M., Preston, T. E., Serafin, D., & Harder, L. (2013). Pediatric multiple sclerosis: What do we know and where are we headed? Child Neuropsychology, 191, 1–22. https://doi.org/10.1080/09297049.2011.639758.
Messmer-Uccelli, M. M., Traversa, S., Trojano, M., Viterbo, R., Ghezzi, A., & Signori, A. (2013). Lack of information about multiple sclerosis in children can impact parents' sense of competency and satisfaction within the couple. Journal of the Neurological Sciences, 24, 100–105.
Mohr, D. C., Cox, D., Epstein, L., & Boudewyn, A. (2002). Teaching patients to self-inject: Pilot study of a treatment for injection anxiety and phobia in multiple sclerosis patients prescribed injectable medications. Journal of Behavior Therapy and Experimental Psychiatry, 33, 39–47. https://doi.org/10.1016/S0005-7916(02)00011-3.
Polman, C., Reingold, S., Banwell, B., Clanet, M., Cohen, J., Filippi, M., et al. (2011). Diagnostic criteria for multiple sclerosis: 2010 Revisions to the McDonald criteria. Annals of Neurology, 69, 292–302. https://doi.org/10.1002/ana.22366.
Sloper, T., & Beresford, B. (2006). Families with disabled children. British Medical Journal, 333, 928–929.
Thannhauser, J. (2014). Navigating life and loss in pediatric multiple sclerosis. Qualitative Health Research, 24, 1198–1211. https://doi.org/10.1177/1049732314544966.
Walker, J. G., Johnson, S., Manion, I., & Cloutier, P. (1996). Emotionally focused marital intervention for couples with chronically ill children. Journal of Consulting and Clinical Psychology, 64, 1029–1036. https://doi.org/10.1037/0022-006X.64.5.1029.
Acknowledgments
We thank the many parents who contributed so substantially to this study. We also thank the National Multiple Sclerosis Society (NMSS) of the United States, which has funded the study and helped disseminate its results, and the staff at the Partners Pediatric MS Center at MGH and the Children’s Hospital of Boston who provided indispensable help in implementing the study, particularly Mark P. Gorman, Susana Camposano, and Tanuja Chitnis.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
On behalf of all of the authors, the corresponding author states that there is no conflict of interest.
Ethical Standards and Informed
All procedures followed were in accordance with the ethical standards of the Institutional Review Boards of Massachusetts General Hospital, Boston Children’s Hospital and the University of Illinois at Urbana-Champaign; and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants.”
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
Cross, T.P., Shanks, A.K., Duffy, L.V. et al. Families’ Experience of Pediatric Onset Multiple Sclerosis. Journ Child Adol Trauma 12, 425–435 (2019). https://doi.org/10.1007/s40653-018-0243-7
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40653-018-0243-7