Neurofibromatosis type 1 (NF1): Exploring parent’s experiences of using a customisable information sharing resource (The NF File) using thematic analysis

Sotonwa, Abisoye (2017) Neurofibromatosis type 1 (NF1): Exploring parent’s experiences of using a customisable information sharing resource (The NF File) using thematic analysis. Manchester Metropolitan University. (Unpublished)

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Abstract

Research has revealed the importance of psychoeducational intervention directed at addressing needs regarding NF1. The aim of the current study was to explore the effectiveness of the use of a customisable information sharing resource (The NF File) in parents caring for children diagnosed with NF1 using thematic analysis. It explored: the effectiveness of the NF File in aiding parents and others understanding of NF1; the effectiveness of the NF File in the management of NF1; the ways in which parents used the NF File to support the management of their children’s condition; and lastly, the improvements that can be made on the effectiveness of the NF File. Four mothers of children diagnosed with NF1, who had previously received the piloted NF File, took part in the semi-structured phone interviews. Thematic analysis approach was employed. Analysis of the accounts indicated three main themes: (1) uncertainty over the progression of NF1, (2) the importance of support, (3) the need for people to be educated about NF1. Findings revealed the effectiveness of the NF File in the management and aiding the understanding of NF1. Future research is needed to further investigate how the NF File can be advanced to provide families and diagnosed individuals with the care and support needed.