Click here to learn about
projects that address
important issues relating
to successful engineering
of AAC devices.

Article 5. ISAAC’s 1994 Research Symposium: Session on Family-Focused Research

When I discovered the Journal of Augmentative and Alternative Communication (AAC) contained no articles with the key words "siblings" or "parents" and only one article with the key word "family" since 1985, I was shocked. When a similar review of research articles related to family, parents and siblings in ASHA and TASH publications over the past few years revealed none specifically dealing with family issues in AAC, I was dismayed.

The importance of families in AAC is widely acknowledged. Books, newsletters, and articles written by AAC users, family members and professionals document it. AAC mission statements and our day-to-day experiences give testimony to it. Interaction, language and literacy development research in AAC often includes information about parents (typically mothers) but really does not focus on family issues. For example:

• In a longitudinal study of children with motor disabilities, Bjork found some parents had difficulty giving their children communicative space, i.e., pausing. She concluded that it is important to train care providers to wait for responses.²⁵
• In a survey of home literacy experiences of preschoolers, Light & McNaughton discovered that physically disabled children with AAC systems enter school programs with literacy backgrounds quantitatively and qualitatively different from those of their nondisabled peers. Differences were in their language experiences and cultural contexts.²⁶

Families have a critical impact on the success of AAC practices:²⁷

a. Family members are primary communication partners.

b. Families have social, cultural and economic realities that are likely to have an impact on everything we do.

c. Having a family member with a severe communication impairment places stress on other family members.

d. Successful AAC users always have strong, committed people–often their mothers–supporting them.

Why then, haven't we had a research agenda that addresses family issues in AAC?

At the 1994 ISAAC Research Symposium in The Netherlands, we focused on "Family involvement in the AAC intervention process." Carmen Basil, from Spain and Michael Williams and I were asked to present papers. Margriet Heim of the Netherlands led the discussions of approximately 20 participants from more than 10 countries. Major research areas discussed were:²⁸

• What actually occurs in the families of AAC users?
• How do these characteristics relate to existing socio-interactive theories?
• How can we assess family life?
• How can we create language supportive environments?
• How can we assess the results of intervention in family environments?

Participants discussed several issues researchers should keep in mind: 1) To date, the focus has remained on children, particularly those with congenital disabilities. Our information base needs to be extended to include families of adults with disabilities and those with acquired conditions. 2) Information is available outside the field that should be reviewed carefully so as to avoid reinventing the wheel (particularly a broken one). 3) Both quantitative and qualitative approaches to measurement should be employed. 4) Research questions tend to represent only one perspective, the professionals'. Research questions should be developed that, when answered, will be of interest and value to families and AAC users. Some examples of questions that might be of interest to each group are delineated below:²⁷

Professionals: Is there a theoretical framework to help us think about family systems in AAC? Do family-centered service delivery models operate effectively in AAC? How do they vary across settings? cultures? ages? types of disability? What do families perceive as helpful/not helpful about the AAC intervention process. Do professionals address the real needs of family members or things the professionals perceive as important?

Families: What barriers do families experience? What questions should families ask AAC professionals? AAC users? How do families prefer to receive information? What are the financial ramifications of AAC services over time? How do families know when AAC services are not working? What are the best ways to prioritize what needs to be done–self esteem, education, device training, friendships, employment?

AAC users: How do AAC users assert their communication styles at home? How do AAC users and the services they get affect sib-lings? parents? spouses? What can the AAC user do to fit external caregivers into the family dynamics? What can AAC users do to enhance their participation in family life?

Table III (not included) summarizes the symposium group's efforts toward developing a research agenda. The chart attempts to capture the research questions generated by participants during their discussions. Clearly, we need to know more, much more, about the role of the family in the lives of AAC users and in the establishment of "best practices" in our field.

Before leaving, participants at the session agreed to petition ISAAC's 4th Research Symposium committee to reconvene our discussions in the summer of 1996 in Vancouver, Canada.

This article appears in ACN Volume 7, # 6.

You may order this issue by clicking on Ordering

Back to Articles On Line

Home Page • Online Ordering
Augmentative Communication News • Alternatively Speaking • Social Networks
ISAAC Book Series • Talking Photo Album • Articles On Line
Funding • Presentations On Line • ACI Links • Site Map

One Surf Way, #237 Monterey, CA 93940 Phone : (831) 649-3050 FAX : (831) 646-5428   e-mail: