Qualitative Research Analysis

         

Previously, we discussed the topic of autism in the article, "Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder?"  This week we will be covering the same paper and discussing qualitative research. The social conditions under this study include examining attitudes of parents and research scientists regarding both the perceived causes of ASD and which specific issues should be further researched.  The research question itself along with the description of the social issue is somewhat vague and open-ended.  It would have been better to perhaps stick to one topic, such as perceived causes of autism.  The second part of the research question, which addresses which specific issues should be researched in the future, is lacking in clarity and seems too open ended.  Overall the research question is very relevant to social work practice, it is vital that we understand more about ASD as well as perceptions, stigmas, and what affected families feel still needs to be addressed.  

Since the literature is less than a year old, it is very current and quite significant in the topic area of autism. Inductive research is done in this article rather than being of theoretical framework. They attempted to create a theory of their own based upon the research being collected. A qualitative and exploratory study was done as the data was “collected, cleaned, and coded by CSR and entered into SPSS (SPSS Statistics Grad Pack 22.0) for analysis. Differences between parents’ and scientists’ responses were assessed via chi-square tests. The chi-square test of independence was used as we had nominal level variables” (Fischbach et al, 2016, p. 354).

Initially, participants were chosen through a data collection site, Simons Simplex Collection, that included 2,756 families involved in 12 university clinics.  Each family included one child with ASD, but neither parents nor siblings are on the autism spectrum (Fischbach et al, 2016, p. 354). After the families were asked to participate, 1,460 completed the enrollment, and then a probability sample of 554 participants were semi-randomly selected. “As our goal was to have a sample of 500 SSC parents, 554 (the primary caregiver was chosen) were randomly selected to participate in the study by the SSC@IAN” (Fischbach et al, 2016, p. 354). Of those selected, 502 completed the interview and survey.  As can be seen in Table 1, the results of the sample were 82% white and 95% female. The authors were interested in obtaining the attitudes and beliefs towards ASD from these selected participants.

 The design of the study involved a 72-item survey, conducted using a computer-assisted telephone   interview (CATI).  They first conducted a cognitive interview with 10 parents with a child with ASD. This helped them to “identify any unclear concepts, questions, or terms; and learn how to make the questionnaire flow more smoothly for the participant” (Fischbach et al, 2016, p. 354).  After the cognitive interviews, the researchers were able to update the pattern of the questionnaire to ensure the flow of the questions, and then did pretests with 20 parents of children with ASD. Although this type of study was well-balanced and sufficient, we feel that it would be more conducive had they done intensive interviews, “involving open-ended, relatively unstructured questioning in which the interviewer seeks in-depth information on the respondent’s feelings, experiences, and perceptions” (Engel & Schutt, 2014).  However, it is much costlier to perform and takes a much longer amount of time.

The results of the study showed an actively present disconnect between the beliefs of the research scientists and parents concerning the cause(s) of ASD.  The conclusions do seem in line with the results as this entire study was designed with intending to show a need for better communication and understanding between the two groups studied.  There are alternative explanations offered, especially concerning the parents’ opinions of the cause(s) of ASD.  The now infamous and highly disputed Wakefield et al (1998) study that incorrectly linked vaccinations to ASD was mentioned as still being a perceived cause of ASD by at least 13% of the parents and not even one single research scientist.  There seems to be a disconnect surrounding genetics and ASD.  The majority of research scientists and parents acknowledge a genetic component to ASD, even the possibility of a gene mutation that could be the underlying cause of ASD.  Yet many of the parents still hold on to the belief that ASD is caused by vaccines or other factors.  The researchers explained this by revisiting the stigma that parents of ASD children still face today, and that of course it becomes easier to blame something external like a vaccination than to admit that it could be a part of the parent’s DNA that caused it.

The external validity could possibly be limited by the fact that the study samples were primarily white highly educated parents of ASD children with higher IQ’s than the typical ASD population.  In addition, the source of the study’s funding leaves the research scientists’ preference of a genetic component to ASD open to bias. The other main limitation the authors discuss is derived from sampling techniques, specifically the difficulty in obtaining true representative samples.  They explain that this would be a long and expensive process due to the fact that so little research exists at this point.

The study seems to be current with ethical standards, includes no trade-offs, and it has an appropriate balance. For any future studies we would highly recommend improving the sampling methods.  ASD is called Autism Spectrum Disorder for a reason, it’s a massive spectrum.  Only surveying parents of ASD children with high IQ’s (previously referred to as Asperger’s Syndrome) really does not provide the full picture.  There are ASD children on the complete opposite end of the spectrum, very low functioning, that have been diagnosed at various ages.  We also question the funding source of the entire study, if they had something to gain from proving a genetic link to ASD then the chance for bias is too great.

By: Brittany Culley & Whitney Skierski

References:

Engel, R. J., & Schutt, R. K. (2014). Fundamentals of social work research (2nd ed.). Thousand Oaks, CA: Sage Publications.

Fischbach, R. L., Harris, M. J., Ballan, M. S., Fischbach, G. D., & Link, B. G. (2016). Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder? Autism, 20(3), 353-363.

Wakefield AJ, Murch SH, Anthony A, et al. (1998) RETRACTED: Ileal-lymphoid-nodular hyperplasia, nonspecific colitis, and pervasive developmental disorder in children. The Lancet, 351(9103): 637–641. Retrieved from http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/fulltext