ABSTRACT
Neurofibromatosis 1 (NF1) is a common genetic disorder typically diagnosed in childhood and characterized by cutaneous findings, nerve sheath tumors, skeletal abnormalities, malignancies, and developmental differences. Due to its variability, NF1 is an unpredictable condition that parents have concerns about discussing with their children. While there are publications addressing the disclosure of genetic conditions in general, no NF1-specific disclosure literature exists. To fill this gap, this mixed methods study sought to evaluate the concerns, barriers, failures, or successes parents or guardians have experienced when they have or have not chosen to tell their child(ren) about an NF1 diagnosis. Parents of children between ages 0 and 17 with a diagnosis of NF1 completed a survey and some parents were selected for an interview invitation. A total of 258 surveys were completed, and 20 parents were interviewed. Interview transcripts were categorized into disclosure and non-disclosure groups. Themes were organized into five categories based on interview questions: disclosure concerns, factors affecting disclosure/non-disclosure, approaches to disclosure, desired resources, and recommendations for disclosure. Sentiment analysis was performed on responses about the disclosure discussion itself. Results indicated that most parents (70.5%) disclosed the NF1 diagnosis to their child and overall felt it was a positive experience. Almost one-third of parents (29.5%) had not disclosed the diagnosis. A strong significance was identified between disclosure and severe presentation of NF1 (p = 0.0008). Parents in both groups shared similar concerns about discussing the diagnosis and multiple factors influenced the disclosure decision. Most parents approached disclosure as a process and emphasized the need to be honest and supportive of their child. Parents highlighted the need for more educational resources for children and guidance on how to disclose. These findings indicate that additional resources and support for parents would facilitate disclosure and the involvement of genetic counselors in the process would be beneficial.
ABSTRACT
Although cyberbullying has attracted a good deal of research attention in recent years, we know much less about how cyberbullying differs by race and ethnicity, and the few studies that have examined this topic have yielded conflicting findings. In the current study, 352 White and Black respondents answered questions about their victimization and perpetration experiences with both traditional bullying and cyberbullying. More than 80% of both White and Black participants indicated that they had been victims of traditional bullying, and over 45% had been victims of cyberbullying at least once. Fewer reported perpetrating either type of bullying. Texting and social media were the most common forms of technology used by both White and Black respondents as well as the most common venues by which cyberbullying occurred. For all participants, cyberbullying victimization was associated with greater suicidal ideation, and traditional bullying victimization was related to higher loneliness, depression, and suicidal ideation. At higher frequencies of traditional bullying victimization, Black respondents reported higher loneliness than did White participants. Understanding patterns of technology use and experiences with cyberbullying victimization and perpetration will help to inform effective strategies for prevention and intervention. (PsycInfo Database Record (c) 2020 APA, all rights reserved).
