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Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1: a Pilot Study

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

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.

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Acknowledgments

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.

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Authors and Affiliations

  1. Health Psychology and Neurobehavioral Research Program, 9030 Old Georgetown Road, Bethesda, MD, 20892-8200, USA

    S. Martin, M. C. Roderick, R. Lockridge & P. Wolters

  2. Pediatric Oncology Branch, National Cancer Institute, NIH, 10 Center Drive, Bethesda, MD, 20892, USA

    S. Martin, M. C. Roderick, R. Lockridge & A. Baldwin

  3. Clinical Research Directorate/Clinical Monitoring Research Program, Leidos Biomedical Research, Inc. NCI at Frederick, Frederick, 21702, MD, USA

    M. A. Toledo-Tamula

  4. Children’s Tumor Foundation, New York, NY, USA

    P. Knight

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  1. S. Martin
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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.

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Martin, S., Roderick, M.C., Lockridge, R. et al. Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1: a Pilot Study. J Genet Counsel 26, 576–585 (2017). https://doi.org/10.1007/s10897-016-0031-1

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