Professional Documents
Culture Documents
Parents Perspectives
Daniel W. Mruzek, Dawn Volger-Elias, Elizabeth Baltus Hebert, Jacalyn Yingling, Beth Russ, Lorena Millan,
Virginia Yanez-Fontenla, & Erin McDermott
METHODS
Qualitative research methods were used to identify themes by
analyzing narrative data gathered through a detailed focus group
discussion with parents of children with ASD and at least one
additional child.
Procedure: A 1.5 hour focus group was conducted in a private meeting
room of the elementary school of the participating school district.
Consent was established and confidentiality maintained per approved
institutional human subjects review board protocol. A brief discussion
guide, developed out of a careful review of current literature on needs
of siblings of children with ASD, as well as by brainstorming sessions
by the investigators, was used to guide the discussion. Focus group was
audio recorded and later transcribed. Topics included parents
perceptions of a) description of family; b) relationships among
siblings; c) positive and negative aspects of having a sibling with
autism; d) suggestions for school and other agents to support parents
and your children. Data were also collected through a questionnaire
about demographics form completed at the close of the session.
Validity: At the beginning of the focus group session, the facilitator
emphasized that all participants experiences and opinions were
considered equally important, and that all were invited to share their
experiences and opinions freely. Participants were reminded that there
are no right or wrong comments in any of the topic areas.
Participants were asked to minimize side discussions so that all
comments could be heard by the researchers. The facilitator adhered
closely to the topic areas identified in the discussion guide, and the
topic areas were also clearly displayed at the front of the room for
added visual support. To aid in subsequent analysis, two separate
researchers maintained handwritten notes throughout the session,
identifying the speaker of each comment. Audio recording was
reviewed for accuracy.
Data Analysis: Qualitative methods were used for data analysis. Upon
completion of the focus group, investigators immediately processed
their initial impressions of potential themes. An interdisciplinary
group of investigators each reviewed the transcript independently for
the identification of initial codes. Transcript was analyzed using Nvivo
10 followed by discussion to identify themes and illustrative quotes.
The investigators reached consensus regarding key themes.
RESULTS
THEME 1
Role of siblings
The role of siblings varied within and across families. Variability in roles seemed to be dependent on factors such as the age difference between
the siblings, behavioral challenges, and other resources available to the family. Identified roles include the following:
-Playmate: Siblings often took on the role of a playmate, which is a typical sibling role in many families. The families did, however, describe
the unique nature of play between their siblings.
Its kind of slow between them but if you find something that they can do together that hes interested in, theyre great. But for the most
part he does his own thing but its coming.
-Caregiver: Parents described the role of caregiver that is often taken on by their child without autism. Some families talked about assigning
their children this role at times, whereas other siblings seemed to naturally take on caregiving within the family.
She almost has taken over the mother position. So she watches him like a hawk. She is, she rides him sometimes terrible. Shell be like
dont do this! and its like, really? Whos the mother here?
-Advocate: Empowered to Educate of others about autism Parents described how having a sibling with autism can have impact on advocacy in
the community.
Shes already been talking to me about how she knows a lot about autism and how she has stuff to contribute to the group.
THEME 2
Recommendations and Next Steps: Based on the results of this focus group, it is recommended that school districts and other agencies consider
the following practices: (1) development of structured support groups for siblings; (2) Create increased opportunities for inclusive social and
recreational activities for children with ASD and siblings; (3) Consider carefully the quality of supports for students with ASD as they make
educational transitions, especially those that require new buildings or routines (e.g., start of middle school); (4) educate all students and school
community about ASD and consider including siblings as potential leaders in that process. Additional research, including focus groups, should
include families from a broader range of cultural groups (e.g. urban or suburban district). Next steps may include study of impact of recommended
next steps (above) on well-being of siblings, children with ASD and their families.