Conducting Research With an Adolescent Diagnosed With Fragile X Syndrome

Chantel Lynette Weber

Abstract


In this article I address the reflexive nature of research undertaken when I investigated the presence of resilience found in an adolescent girl diagnosed with fragile X syndrome. The highlights of this article include specific challenges I experienced when conducting research with this adolescent and how I have adapted the process accordingly. These challenges involve the planning and preparation before data commenced; the influence of sensory integration, behavioral, cognitive and language characteristics of fragile X syndrome on an adolescent girl; and the aspects of ethical and rigorous research. I have also included recommendations such as guidelines for other researchers interested in conducting a similar study with adolescents affected by fragile X syndrome. I hope that with this article, other researchers would be provided with a better understanding of how to proceed with research that involves individuals with disabilities and more specifically, individuals diagnosed with fragile X syndrome.

URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1702102


Keywords


disability; adolescent; qualitative research; fragile X syndrome; case study

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DOI: http://dx.doi.org/10.17169/fqs-18.2.2694

Copyright (c) 2017 Chantel Lynette Weber

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