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• W2793146584 abstract "Parents of children with neurofibromatosis type 1 (NF1), a rare genetic condition, are at risk for emotional distress. While they may benefit from support groups, they may find it difficult to access support. We conducted an 8-week Internet support group (ISG) with 33 parents (29 mothers, 4 fathers) of children with NF1. Transcripts were evaluated using inductive thematic analysis to determine parental needs and concerns; a process and content theme were identified, with each containing codes and subcodes. In terms of process, parents utilized the ISG to seek out information, share information and experiences, and provide and receive emotional support. Common content codes included medical concerns, psychosocial/cognitive development, and accessing NF1 community resources. These concerns highlight the importance of providing parents with reliable information about their child’s condition, providing multidisciplinary support to the children with NF1 and their families, and encouraging involvement in the NF1 community." @default.
• W2793146584 created "2018-03-29" @default.
• W2793146584 creator A5041201432 @default.
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• W2793146584 date "2018-03-02" @default.
• W2793146584 modified "2023-09-27" @default.
• W2793146584 title "An Internet support group for parents of children with neurofibromatosis type 1: a qualitative analysis" @default.
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• W2793146584 doi "https://doi.org/10.1007/s12687-018-0360-x" @default.
• W2793146584 hasPubMedCentralId "https://www.ncbi.nlm.nih.gov/pmc/articles/6002296" @default.
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• W2793146584 hasPublicationYear "2018" @default.
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