| Title |
An Internet support group for parents of children with neurofibromatosis type 1: a qualitative analysis
|
|---|---|
| Published in |
Journal of Community Genetics, March 2018
|
| DOI | 10.1007/s12687-018-0360-x |
| Pubmed ID | |
| Authors |
Staci Martin, Kari L. Struemph, Alyssa Poblete, Mary Anne Toledo-Tamula, Robin Lockridge, Marie Claire Roderick, Pamela Wolters |
| 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. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 2 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 38 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 38 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 8 | 21% |
| Researcher | 5 | 13% |
| Student > Ph. D. Student | 4 | 11% |
| Student > Bachelor | 3 | 8% |
| Student > Doctoral Student | 3 | 8% |
| Other | 1 | 3% |
| Unknown | 14 | 37% |
| Readers by discipline | Count | As % |
|---|---|---|
| Psychology | 13 | 34% |
| Medicine and Dentistry | 5 | 13% |
| Nursing and Health Professions | 2 | 5% |
| Social Sciences | 2 | 5% |
| Agricultural and Biological Sciences | 1 | 3% |
| Other | 1 | 3% |
| Unknown | 14 | 37% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 04 March 2018.
All research outputs
#18,589,103
of 23,025,074 outputs
Outputs from Journal of Community Genetics
#314
of 371 outputs
Outputs of similar age
#257,740
of 331,404 outputs
Outputs of similar age from Journal of Community Genetics
#6
of 9 outputs
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