Top

Published in:

01-10-2014 | Original Research

Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents

Authors: Staci Martin, Pamela L. Wolters, Andrea Baldwin, Marie Claire Roderick, Mary Anne Toledo-Tamula, Andrea Gillespie, Brigitte Widemann

Published in: Journal of Genetic Counseling | Issue 5/2014

Abstract

Youth with neurofibromatosis type 1 (NF1) have multiple, complex symptoms associated with physical, social-emotional, and cognitive difficulties. In addition, caring for a child with NF1 can be extremely challenging for parents. Since research with other chronic illness populations suggests that social support, including internet support groups (ISGs), can be beneficial, this survey study aimed to determine the attitudes and preferences of adolescents and young adults with NF1 and parents of a child with NF1 regarding ISGs. Thirty patients and 30 caregivers completed a 24-item survey about ISGs. Many patients and parents are not aware of any ISGs for NF1, but are interested in using one in the future for a variety of reasons, including to get answers to their questions about NF1, to find out about research studies, and to discuss problems and concerns about NF1. Specific concerns of interest include physical, social-emotional, and cognitive aspects of NF1. ISGs have potential as a social support intervention within the NF1 community. ISGs for the NF1 population should include patients with NF1 (or parents of children with NF1) as well as a health professional, and both chat rooms and discussion boards likely would be well-received.

Available only for authorised users

Barton, B., & North, K. (2004). Social skills of children with neurofibromatosis type 1. Developmental Medicine and Child Neurology, 46(8), 553–563.PubMedCrossRef

Beckjord, E. B., Rutten, L. J. F., Squiers, L., Arora, N. K., Volckmann, L., Moser, R. P., & Hesse, B. W. (2007). Use of the Internet to communicate with health care providers in the United States: Estimates from the 2003 and 2005 Health Information National Trends Surveys (HINTS). Journal of Medical Internet Research, 9(3), 2676–2682. doi:https://doi.org/10.2196/jmir.9.3.e20.CrossRef

Coulson, N. S., Buchanan, H., & Aubeeluck, A. (2007). Social support in cyberspace: a content analysis of communication within a Huntington’s disease online support group. Patient Education and Counseling, 68(2), 173–178. doi:https://doi.org/10.1016/j.pec.2007.06.002.PubMedCrossRef

Escoffery, C., DiIorio, C., Yeager, K. A., McCarty, F., Robinson, E., Reisinger, E., & Koganti, A. (2008). Use of computers and the Internet for health information by patients with epilepsy. Epilepsy & Behavior, 12(1), 109–114. doi:https://doi.org/10.1016/j.yebeh.2007.07.013.CrossRef

Florian, V., & Krulik, T. (1991). Loneliness and social support of mothers of chronically ill children. Social Science & Medicine, 32(11), 1291–1296.CrossRef

Hoekstra-Weebers, J. E., Jaspers, J. P., Kamps, W. A., & Klip, E. C. (2001). Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. Journal of Pediatric Psychology, 26(4), 225–235.PubMedCrossRef

Hyman, S. L., Shores, A. E., & North, K. N. (2006). Learning disabilities in children with neurofibromatosis type 1: subtypes, cognitive profile, and attention-deficit-hyperactivity disorder. Developmental Medicine and Child Neurology, 48(12), 973–977. doi:https://doi.org/10.1017/S0012162206002131.PubMedCrossRef

Janicke, D. M., Gray, W. N., Kahhan, N. A., Follansbee Junger, K. W., Marciel, K. K., Storch, E. A., & Jolley, C. D. (2009). Brief report: the association between peer victimization, prosocial support, and treatment adherence in children and adolescents with Inflammatory Bowel Disease. Journal of Pediatric Psychology, 34(7), 769–773. doi:https://doi.org/10.1093/jpepsy/jsn116.PubMedCrossRef

Kang, H., McCarthy Veach, P., & Leroy, B. S. (2010). Concerns of South Korean patients and family members affected with genetic conditions: a content analysis of internet website messages. Journal of Genetic Counseling, 19(3), 280–295. doi:https://doi.org/10.1007/s10897-009-9277-1.PubMedCrossRef

Kim, A., Gillespie, A., Dombi, E., Goodwin, A., Goodspeed, W., Fox, E., & Widemann, B. C. (2009). Characteristics of children enrolled in treatment trials for NF1-related plexiform neurofibromas. Neurology, 73(16), 1273–1279. doi:https://doi.org/10.1212/WNL.0b013e3181bd1326.PubMedPubMedCentralCrossRef

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:https://doi.org/10.1016/j.apmr.2009.01.010.PubMedCrossRef

La Greca, A. M., Bearman, K. J., & Moore, H. (2002). Peer relations of youth with pediatric conditions and health risks: promoting social support and healthy lifestyles. [Review]. Journal of Developmental and Behavioral Pediatrics, 23(4), 271–280.PubMedCrossRef

Martin, S., Wolters, P., Baldwin, A., Gillespie, A., Dombi, E., Walker, K., & Widemann, B. (2012). Social-emotional functioning of children and adolescents with neurofibromatosis type 1 and plexiform neurofibromas: relationships with cognitive, disease, and environmental variables. Journal of Pediatric Psychology, 37(7), 713–724. doi:https://doi.org/10.1093/jpepsy/jsr124.PubMedPubMedCentralCrossRef

Melling, B., & Houguet-Pincham, T. (2011). Online peer support for individuals with depression: a summary of current research and future considerations. Psychiatric Rehabilitation Journal, 34(3), 252–254. doi:https://doi.org/10.2975/34.3.2011.252.254.PubMedCrossRef

Merkel, R. M., & Wright, T. (2012). Parental self-efficacy and online support among parents of children diagnosed with type 1 diabetes mellitus. Pediatric Nursing, 38(6), 303–308. quiz 309.PubMed

Mo, P. K., & Coulson, N. S. (2013). Online support group use and psychological health for individuals living with HIV/AIDS. Patient Education and Counseling, 93(3), 426–432. doi:https://doi.org/10.1016/j.pec.2013.04.004.PubMedCrossRef

Monaghan, M., Hilliard, M. E., Cogen, F. R., & Streisand, R. (2011). Supporting parents of very young children with type 1 diabetes: results from a pilot study. Patient Education and Counseling, 82(2), 271–274. doi:https://doi.org/10.1016/j.pec.2010.04.007.PubMedPubMedCentralCrossRef

Palermo, T. M., & Eccleston, C. (2009). Parents of children and adolescents with chronic pain. Pain, 146(1–2), 15–17.PubMedPubMedCentralCrossRef

Rearick, E. M., Sullivan-Bolyai, S., Bova, C., & Knafl, K. A. (2011). Parents of children newly diagnosed with type 1 diabetes: experiences with social support and family management. The Diabetes Educator, 37(4), 508–518. doi:https://doi.org/10.1177/0145721711412979.PubMedCrossRef

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:https://doi.org/10.1093/jpepsy/jsm077.PubMedCrossRef

Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921–933. doi:https://doi.org/10.1007/s10803-006-0129-7.PubMedCrossRef

Skinner, T. C., John, M., & Hampson, S. E. (2000). Social support and personal models of diabetes as predictors of self-care and well-being: a longitudinal study of adolescents with diabetes. Journal of Pediatric Psychology, 25(4), 257–267.PubMedCrossRef

Tonsgard, J. H. (2006). Clinical manifestations and management of neurofibromatosis type 1. Seminars in Pediatric Neurology, 13, 2–7.PubMedCrossRef

Wang, Q., Hay, M., Clarke, D., & Menahem, S. (2013). Associations between knowledge of disease, depression and anxiety, social support, sense of coherence and optimism with health-related quality of life in an ambulatory sample of adolescents with heart disease. Cardiology in the Young, 23, 1–8. doi:https://doi.org/10.1017/S1047951113000012.

Wen, K. Y., & Gustafson, D. H. (2004). Needs assessment for cancer patients and their families. Health and Quality of Life Outcomes, 2, 11. doi:https://doi.org/10.1186/1477-7525-2-11.PubMedPubMedCentralCrossRef

Winzelberg, A. J., Classen, C., Alpers, G. W., Roberts, H., Koopman, C., Adams, R. E., & Taylor, C. B. (2003). Evaluation of an internet support group for women with primary breast cancer. Cancer, 97(5), 1164–1173. doi:https://doi.org/10.1002/cncr.11174.PubMedCrossRef

Wolkenstein, P., Rodriguez, D., Ferkal, S., Gravier, H., Buret, V., Algans, N., & Bastuji-Garin, S. (2009). Impact of neurofibromatosis 1 upon quality of life in childhood: a cross-sectional study of 79 cases. British Journal of Dermatology, 160(4), 844–848. doi:https://doi.org/10.1111/j.1365-2133.2008.08949.x.PubMedCrossRef

Wood, L. J., Sherman, E. M., Hamiwka, L. D., Blackman, M. A., & Wirrell, E. C. (2008). Maternal depression: the cost of caring for a child with intractable epilepsy. Pediatric Neurology, 39(6), 418–422. doi:https://doi.org/10.1016/j.pediatrneurol.2008.08.007.PubMedCrossRef

Zrebiec, J. F., & Jacobson, A. M. (2001). What attracts patients with diabetes to an internet support group? A 21-month longitudinal website study. Diabetic Medicine, 18(2), 154–158. doi:https://doi.org/10.1046/j.1464-5491.2001.00443.x.PubMedCrossRef

Title: Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents
Authors: Staci Martin
Pamela L. Wolters
Andrea Baldwin
Marie Claire Roderick
Mary Anne Toledo-Tamula
Andrea Gillespie
Brigitte Widemann
Publication date: 01-10-2014
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 5/2014
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-014-9688-5

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 5/2014

Amyotrophic Lateral Sclerosis in a Patient with a Family History of Huntington Disease: Genetic Counseling Challenges

Balancing Life with an Increased Risk of Cancer: Lived Experiences in Healthy Individuals with Lynch Syndrome

Interdisciplinary Education for Genetic Counselors: Developing the Concept and Assessing the Need in Australasia

Maternal Uniparental Isodisomy Causing Autosomal Recessive GM1 Gangliosidosis: A Clinical Report

Genetic Counseling in Direct-to-Consumer Exome Sequencing: A Case Report

The Effect of Genetic Counseling for Adult Offspring of Patients with Type 2 Diabetes on Attitudes Toward Diabetes and its Heredity: A Randomized Controlled Trial