Qualitative Research Conundrums with Individuals with Developmental Disabilities

Background and Purpose: Qualitative researchers are presented with interesting challenges when investigating experiences of individuals developmental disabilities (IWDD) with communication impairments.  Practical, clinical and ethical dilemmas arise when interviewing participants with both cognitive and physical disabilities which impact receptive and expressive language both separately and in combination.  Qualitative and quantitative researchers have primarily focused on proxy reports by caregivers and observers.  Yet, proxy reports differ from IWDD’s perspectives, having implications for the overall validity of the research and further explicating the importance of obtaining direct first person information.  Further, there may be benefits for participants telling their personal stories. The author will describe a qualitative study on identity complexity in IWDD as a medium to explore various dilemmas encountered while utilizing in-depth interviews.       

Methods: In-depth interviews were used with a purposive sample of 20 IWDD (aged 19- 56) diagnosed with: Lesch Nyhan Disease, cerebral palsy or spina bifida.  Cognitive levels varied: from average intelligence to mildly impaired cognition and communication styles varied; some had high ability to verbally express themselves, others were non-verbal by conventional means but able to communicate by assistive technology. The interview guide focused on their experiences with having disability and the perceived impact on their life quality.  Interviews were audio-recorded, transcribed verbatim and uploaded into ATLAS-ti.  Open coding, constant comparison and thematic analysis were utilized to generate theory surrounding the processes involved in the development of self-perceptions.

Research conundrums encountered include:

• access to participants i.e. obtaining informed assent/guardian consent
• concerns about participants’ vulnerability to coercion
• upholding privacy/confidentiality
• role confusion
• overcoming receptive and expressive language barriers in narrative discourse

Findings: Several themes emerged as participants commented on what being involved in the study was like for them:

1. Being heard (informing/educating others)

IWDD have a strong desire to be noticed by ‘others’ meaning those who are non-disabled.  Several perceive others as viewing them as different and outside of societal norms.  Some want society to know that they will prevail despite their challenges. 

     2.    Helping Others

Being a mentor or an example of a person who is adaptively coping despite their challenges was a persistent theme throughout the interviews as participants discussed their motivations for involvement in the project.

     3.    Enjoying the process

Arguably the most important theme was that the experience was pleasurable.  Feeling valued, contributing to knowledge, or just making money (participants were paid $5.00/interview) provided them with an opportunity to be engaged in a productive activity.

Conclusion: Failure to address these challenges may inhibit exploration into this underserved population and ultimately have social justice implications.  Social workers must become aware of the various research conundrums and develop innovative strategies to gather qualitative data while considering ethical implications.  The findings underscore the importance for inclusion of IWDD in qualitative studies and provide implications for their participation in all aspects of research planning, development and implementation in keeping with person-centered initiatives.