Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1: a Pilot Study
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This pilot study investigated the feasibility and preliminary efficacy of an Internet Support Group (ISG) for parents of children with NF1. Eligible parents were recruited by email and completed baseline questionnaires assessing social support, self-efficacy, depression, and anxiety. The ISG involved eight weekly 90-min chat sessions and a discussion forum open 24 h/day for 8 weeks. Follow-up measures were completed immediately post-intervention and 3 months later. Parents from 33 families (29 mothers, 4 fathers) completed baseline measures. Over half of parents (52 %) rated their child’s disease severity as mild, 33 % moderate, and 15 % severe. Among 21 parents who completed post-intervention measures, ratings of perceived emotional (p = .0008) and informational (p = .0003) support increased. There were no significant changes in self-efficacy, depression, or anxiety (ps > .05). The mean satisfaction rating was moderately high (7.6/10; range 4–10). Some parents commented that the chat sessions were at inconvenient times, which may have limited participation. Preliminary evidence in this small sample of parents suggests that ISGs may be a feasible and potentially efficacious method of providing support to parents of children with NF1. Having multiple weekly chat sessions held at various days and times may improve accessibility and participation. Clinicians are encouraged to help parents access online support resources.
KeywordsNeurofibromatosis type 1 Internet support group Social support Children Parents
The authors appreciate the participation of the parents who took part in this study. We also thank the Children’s Tumor Foundation for providing the online infrastructure for the internet support group. This research was supported by the Intramural Research Program of the National Institutes of Health, National Cancer Institute. In addition, this project was funded in whole or in part with federal funds from the National Cancer Institute, National Institutes of Health, under Contract No. HHSN261200800001E.
Compliance with Ethical Standards
Conflict of Interest
S. Martin, M.C. Roderick, R. Lockridge, M.A. Toledo-Tamula, A. Baldwin, P. Knight, P. Wolters declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
No animal studies were carried out by the authors for this article.
- Barrera Jr., M., Glasgow, R. E., McKay, H. G., Boles, S. M., & Feil, E. G. (2002). Do internet-based support interventions change perceptions of social support?: an experimental trial of approaches for supporting diabetes self-management. American Journal of Community Psychology, 30(5), 637–654.CrossRefPubMedGoogle Scholar
- Buchanan, E. A., & Zimmer, M. (2012). Internet research ethics. Stanford Encyclopedia of Philosophy, Winter 2012. Retrieved from http://plato.stanford.edu/archives/win2012/entries/ethics-internet-research/.
- Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode, R., Buysse, D., Choi, S., Cook, K., Devellis, R., DeWalt, D., Fries, J. F., Gershon, R., Hahn, E. A., Lai, J. S., Pilkonis, P., Revicki, D., Rose, M., Weinfurt, K., & Hays, R. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. Journal of Clinical Epidemiology, 63(11), 1179–1194. doi: 10.1016/j.jclinepi.2010.04.011.CrossRefPubMedPubMedCentralGoogle Scholar
- Griffiths, K. M., Mackinnon, A. J., Crisp, D. A., Christensen, H., Bennett, K., & Farrer, L. (2012). The effectiveness of an online support group for members of the community with depression: a randomised controlled trial. PloS One, 7(12), e53244. doi: 10.1371/journal.pone.0053244.CrossRefPubMedPubMedCentralGoogle Scholar
- Hoekstra-Weebers, J. E., Jaspers, J. P., Kamps, W. A., & Klip, E. C. (1999). Risk factors for psychological maladjustment of parents of children with cancer. Journal of the American Academy of Child and Adolescent Psychiatry, 38(12), 1526–1535. doi: 10.1097/00004583-199912000-00014.CrossRefPubMedGoogle Scholar
- Hoybye, M. T., Dalton, S. O., Deltour, I., Bidstrup, P. E., Frederiksen, K., & Johansen, C. (2010). Effect of internet peer-support groups on psychosocial adjustment to cancer: a randomised study. British Journal of Cancer, 102(9), 1348–1354. doi: 10.1038/sj.bjc.6605646.CrossRefPubMedPubMedCentralGoogle Scholar
- Kim, A., Gillespie, A., Dombi, E., Goodwin, A., Goodspeed, W., Fox, E., Balis, F. M., & Widemann, B. C. (2009). Characteristics of children enrolled in treatment trials for NF1-related plexiform neurofibromas. Neurology, 73(16), 1273–1279. doi: 10.1212/WNL.0b013e3181bd1326.CrossRefPubMedPubMedCentralGoogle Scholar
- Klassen, A. F., Gulati, S., Granek, L., Rosenberg-Yunger, Z. R., Watt, L., Sung, L., Klaassen, R., Dix, D., & Shaw, N. T. (2011). Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Quality of Life Research. doi: 10.1007/s11136-011-0072-8.Google Scholar
- Kreutzer, J. S., Rapport, L. J., Marwitz, J. H., Harrison-Felix, C., Hart, T., Glenn, M., & Hammond, F. (2009). Caregivers' well-being after traumatic brain injury: a multicenter prospective investigation. Archives of Physical Medicine and Rehabilitation, 90(6), 939–946. doi: 10.1016/j.apmr.2009.01.010.CrossRefPubMedGoogle Scholar
- Lorig, K., Stewart, A., Ritter, P., Gonzalez, V., Laurent, D., & Lynch, J. (1996). Outcome measures for health education and other health care interventions. Thousand Oaks, CA: Sage Publications.Google Scholar
- Madden, M., Lenhart, A., Cortesi, S., Gasser, U., Duggan, M., Smith, A., & Beaton, M. (2013). Teens, social media, and privacy. Pew Research Center: Internet, Science & Tech. Retrieved from pewinternet.org website.
- Martin, S., Wolters, P. L., Baldwin, A., Roderick, M. C., Toledo-Tamula, M. A., Gillespie, A., & Widemann, B. (2014). Attitudes about internet support groups among adolescents and young adults with neurofibromatosis type 1 and their parents. Journal of Genetic Counseling, 23(5), 796–804. doi: 10.1007/s10897-014-9688-5.CrossRefPubMedGoogle Scholar
- Olino, T. M., Yu, L., McMakin, D. L., Forbes, E. E., Seeley, J. R., Lewinsohn, P. M., & Pilkonis, P. A. (2013). Comparisons across depression assessment instruments in adolescence and young adulthood: an item response theory study using two linking methods. Journal of Abnormal Child Psychology, 41(8), 1267–1277. doi: 10.1007/s10802-013-9756-6.CrossRefPubMedPubMedCentralGoogle Scholar
- Pilkonis, P. A., Choi, S. W., Reise, S. P., Stover, A. M., Riley, W. T., Cella, D., & Group, Promis Cooperative (2011). Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS(R)): depression, anxiety, and anger. Assessment, 18(3), 263–283. doi: 10.1177/1073191111411667.CrossRefPubMedPubMedCentralGoogle Scholar
- Pilkonis, P. A., Yu, L., Dodds, N. E., Johnston, K. L., Maihoefer, C. C., & Lawrence, S. M. (2014). Validation of the depression item bank from the patient-reported outcomes measurement information system (PROMIS) in a three-month observational study. Journal of Psychiatric Research, 56, 112–119. doi: 10.1016/j.jpsychires.2014.05.010.CrossRefPubMedPubMedCentralGoogle Scholar
- Raghavendra, P., Newman, L., Grace, E., & Wood, D. (2013). 'I could never do that before': effectiveness of a tailored internet support intervention to increase the social participation of youth with disabilities. Child: Care, Health and Development, 39(4), 552–561. doi: 10.1111/cch.12048.Google Scholar
- Reiter-Purtill, J., Schorry, E. K., Lovell, A. M., Vannatta, K., Gerhardt, C. A., & Noll, R. B. (2008). Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1. Journal of Pediatric Psychology, 33(4), 422–434. doi: 10.1093/jpepsy/jsm077.CrossRefPubMedGoogle Scholar
- Shaw, J. (2000). Health care in the information age. Manag Care, 9(11 Suppl), 13–16; quiz 12, 23–15.Google Scholar
- Stone, A. A., Broderick, J. E., Junghaenel, D. U., Schneider, S., & Schwartz, J. E. (2015). PROMIS fatigue, pain intensity, pain interference, pain behavior, physical function, depression, anxiety, and anger scales demonstrate ecological validity. Journal of Clinical Epidemiology. doi: 10.1016/j.jclinepi.2015.08.029.PubMedGoogle Scholar
- Swallow, V. M., Knafl, K. A., Santacroce, S., Campbell, M., Hall, A. G., Smith, T., & Carolan, I. (2014). An interactive health communication application for supporting parents managing childhood long-term conditions: outcomes of a randomized controlled feasibility trial. JMIR Research Protocols, 3(4), e69.CrossRefPubMedPubMedCentralGoogle Scholar
- van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Seydel, E. R., & van de Laar, M. A. (2008). Self-reported differences in empowerment between lurkers and posters in online patient support groups. Journal of Medical Internet Research, 10(2), e18. doi: 10.2196/jmir.992.CrossRefPubMedPubMedCentralGoogle Scholar
- Wolkenstein, P., Rodriguez, D., Ferkal, S., Gravier, H., Buret, V., Algans, N., Simeoni, M. C., & Bastuji-Garin, S. (2009). Impact of neurofibromatosis 1 upon quality of life in childhood: a cross-sectional study of 79 cases. The British Journal of Dermatology, 160(4), 844–848. doi: 10.1111/j.1365-2133.2008.08949.x.CrossRefPubMedGoogle Scholar
- Wolters, P. L., Burns, K. M., Martin, S., Baldwin, A., Dombi, E., Toledo-Tamula, M. A., Dudley, W. N., Gillespie, A., & Widemann, B. C. (2015). Pain interference in youth with neurofibromatosis type 1 and plexiform neurofibromas and relation to disease severity, social-emotional functioning, and quality of life. American Journal of Medical Genetics. Part A. doi: 10.1002/ajmg.a.37123.PubMedGoogle Scholar