(Moved to ePoster Session #83, Friday, 8am) Can a Web-Based Survey Speak to the Lived Experience of Adults with Dyslexia?

Background and Purpose:

Dyslexia is a hidden disability that is manifested through reading and executive functioning difficulties. Not seemingly measuring up to Western societies educational and occupational expectations for success, adults with dyslexia (AWD) are at risk for discrimination, humiliation, low self-esteem, low self-efficacy, depression, and anxiety. As a hidden disability, dyslexia often goes unrecognized in the broader discourse around marginalized and vulnerable groups, even among social workers.

Utilizing open-ended questions in quantitative Web-based surveys is an innovative method of collecting qualitative data and has garnered increased attention within the survey research community. Only a few articles appear to intentionally focus on final comment questions. The purpose of this study was to determine whether the responses to the final comment question embody the characteristics of response quality discussed in the literature, which in turn can inform practice, policy, and research. We analyzed a final comment question from a quantitatively focused web-based national study of AWD.

Methods:

Participatory action methods were used to develop a connection with potential survey participants. Nonprobability sampling was used to target AWD aged 21 year and older. The nondirective final comment question, “Please share any final comments, thoughts, or feelings about any aspect of this survey or topics we covered”, was placed at the end of a 200-item survey that focused on the socioemotional experiences of AWD. Researchers employed a rigorous six-stage thematic analysis process to determine final themes.

Of the 224 participants who completed the survey, half (50%; n=113) answered the final comment question. Of those, 60% (n=68) identified as men and 40% identified as women (n=45). They primarily identified as Caucasian (85%; n=96. A majority (59%; n = 67) indicated working part or full time, while 65% (n=74) had earned at least a Bachelor’s level college degree.

Results:

We found the representativeness and depth of responses to be compelling, particularly given the often-reported poor quality of open-ended survey data. An overarching theme, Yearning/Social Perceptions, emphasized participants’ longing for a future in which people did not judge them based on their “dyslexia.” Yearning/Social Perception was foregrounded by subthemes (“This Stuff is Torture”, “Thank God I’m Not Normal”, Educational Experience, Coping Strategies, Family Support, Generational Dyslexia) and another theme representing participants’ thoughts and experiences regarding the survey itself (e.g., appreciation and survey design suggestion).

Parents with dyslexia raising children with dyslexia (i.e., Generational Dyslexia) emerged as a unique and powerful theme that extended findings from the quantitative survey. These parents with dyslexia were passionate about wanting a better life for their child with dyslexia that included less emotional distress, an appropriate education, and less stigma associated with dyslexia.

Conclusions and Implications:

The findings call attention to a greater challenge at the broader societal level that embraces inclusion for people with dyslexia. Social workers should not view dyslexia just as an educational construct but should strive to address dyslexia as a social justice issue. We encourage researchers to adopt participatory research methods that emphasize empowerment of people, particularly those of marginalized groups, like AWD.