No One to Help Me: Family Challenges with Assistive and Augmentative Communication

Sunday, November 1, 2009

Cheryl Lee Crisp, MSN, RN, PCNS-RN, CRRN
Riley Child Development Center, Indiana University School of Medicine, Indianpolis, IN
Marsha L. Ellett, DNS, RN
Family Health, Indiana University School of Nursing, Indianapolis, IN
Rebecca Sloan, PhD
Family Health Department, Indiana University School of Nursing, Indianapolis, IN

Learning Objective 1: identify at least 3 ways that nurses can provide support for children who use AAC and their families

Learning Objective 2: identify at least 3 resources available to provide support to professionals and parents regarding the programming and use of AAC


Many children who have significant neuromuscular impairments related to disorders, such as cerebral palsy (CP) or oral motor dyspraxia, are able to speak with maximal difficulty and minimal intelligibility, or they may not be able to speak at all (Ko, McConachie, & Jollett, 1998). These children are frequently referred for an augmentative and assistive communication (AAC) evaluation and often receive recommendations for speech output devices (Allaire, Gressard, Blackman, & Hostler, 1991; Blackstone, 1989). However, there is currently a high abandonment rate for children using communication devices (Guidera & Olsson, undated: Pendergrass & Vestal, 2002). Factors that influenced parent’s likes and dislikes of their child’s AAC device were explored.


Semi-structured interviews were conducted with 4 primary caregivers of children who have previously used or are currently using an AAC device to communicate. Interpretive phenomenology, influenced by the work of Martin Heidegger, is the guiding principle that was used to illuminate the meaning and significance of family’s likes and dislikes of their child’s AAC device.  Each interview was transcribed verbatim and analyzed by the researcher and members of a hermeneutic circle composed of faculty members and doctoral students. Each team member presented their identified interpretations during regular hermeneutic circle meetings. All interpretations were discussed with the appropriate time set aside for questions and discussion. As new themes are uncovered and previously identified themes become clearer, the interpretation became more complete. Emerging themes were recorded with the supporting quotations included.


A variety of common themes regarding parent’s likes and dislikes emerged from the data with the most frequently occurring barrier identified as a lack of supports available to help families who are helping their child to access their AAC device.


The information gleaned from the research will be used to assist medical professionals and educators in identifying barriers to the use of AAC and to help familys avoid some of the pitfalls experienced by these children and families who were willing to share their stories. Working together with speech language pathologists and educators, nurses can provide education, assistance, and support for the child and family members who are learning to use an AAC device and are adapting to the changes in family life brought about by using such a device. Assisting the child and family to connect with the appropriate agencies, support groups, and services should significantly decrease the percentage of children and families who discontinue use of AAC.