Augmentative and Alternative Communication Practice in the Pursuit of Family Quality of Life: A review of the Literature

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copyright 2007 by
TASH
Research & Practice for Persons with Severe Disabilities
2007, Voi. 32, No. 1.50-65
Augmentative and Alternative
Communication Practice in the
Pursuit of Family Quality of Life:
A Review of the Literature
Yumiko Saito
University of Kansas
National Institute of Special Needs Education, Japan
Ann Turnbull
University of Kansas
everything ... it won't always fit into every little nook
and cranny of everybody's life (Todis, 1996. p. 52).
Augmentative and Alternative Communication (AAC)
practice may have both positive and negative impacts on
quality of life (QOL) of children with AAC as wet! as their
entire family. Thirteen sttidies were reviewed to analyze
family outcomes and perspectives on AAC practice by
using a family quality of life (FQOL) framework comprised of five empirically derived domains in order to
identify issues that famities perceive as important lo their
lives. The impact of current AAC practices encompasses
alt five domains: family interaction, parenting, physical/
material welt-being, disability-related support, and emotional well-being. Implications are drawn for practitioners
and researchers for AAC practices that impact positive
FQOL outcomes.
These voices from families of children who use augmentative and alternative communication (AAC) devices
reveal both positive and negative impacts of AAC practice on the quality of the child's life, as well as their family.
An AAC system is defined as "an integrated group of
components, including the symbols, aids, strategies, and
techniques used by individuals to enhance communication" (American Speech Language Hearing Association,
1991, p. 10). Approximately 1% of the general population
have been reported to experience severe communication
impairments that require AAC (Beukelman & Ansel,
1995). The Individuals With Disabilities Education Act
(IDEA) 2004 mandates the provision of assistive technology devices and services that includes the provision
of AAC devices for those in need. In IDEA, an assistive technology device is defined as "any item, piece of
equipment, or product system ... that is used to increase,
maintain, or improve the functional capabilities ofa child
with a disability" (H.R.1350. SEC6O2[1]). Also, an assistive technology service is defined as "any service that
directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device"
(H.R.135(), SEC602[2]).
DESCRIPTORS: augmentative and alternative communication (AAC) practice, children, family perspectives, family quality of life
Introduction
This magic device brought Kevin into the family. He
became an active member and a participant in the
things we are doing (Blackstone, 1994., p. 3).
I truly believe it goes back to the fact Ihat even
though she's in a wheelchair and she's strapped in
and has problems with head control, that it is the
device that makes her feel and appear different
(Parette. Brotherson, & Huer, 2000, p. 183).
An overview of historical deveiopment of AAC services shows that AAC assessment and intervention historically have centered on identifying the needs of the
client as an individual rather that the individual within
a family context (Hourcade, Pilotte, West, & Parette.
2004; Parette & Angelo. 1996). In the 19S0s. professionals began to incorporate into their considerations
the impaet that the introduction of an AAC system
could have upon families, and this challenge has been
continued to influence implementation decisions today
(Hourcade ct al., 2004). Aithough IDEA expresses a
clear preference for family-professional partnerships in
educational decision making, current practices may not
The AAC device I thought would be the answer to
all my prayers, and it is presented like that. I don't
know if it is presented that way on purpose ... that is
great. I want people to keep up the enthusiasm. But
tell parents it is not an answer to every problem and
Address all correspondence and reprint requests to Yumiko
Saito. 5-1-1 Nobi. Yokosuka-shJ. Kanagawa. 239-8585. Japan.
E-maii: [email protected],jp
50
AAC and Family OOL
always reflect the spirit of the law, and client-focused
interventions have been far more common than familycentered practices in the field of AAC (Blackstone,
1994; Houreade et al.. 2(1)4; Parette & Angelo. 1996).
Related service personnel often underestimate family
influence and have been discouraged when family
members fail to comply with professionally prescribed
AAC intervenlions (Paretle & Angelo. 1996).
Family systems theory (TXirnbuIl. Turnbull. Erwin,
& Soodak, 2006) and ecological systems theory
(Bronfenbrenner, 1986) suggest that interactive factors
both within and outside the famiiy system have to be
taken into consideration for successful AAC practice.
A literature review by Parette and Angelo (1996) indicated that failure to consider family issues might eontribute to an increase in family stress and failure of
ehildren and family to use these devices. Unfortunately,
families sometimes underuse and abandon AAC devices (Biackstone. 1992; Phillips & Zhao, 1993). Phillips
and Zhao (1993) reported that nearly one third of all
purchased assistive technology devices are abandoned.
From the perspective of family systems theory, this underuse and abandonment suggest that among other
things the idiosyneratic family perspectives and priorities were not initially taken into account. Similarly,
ecological systems theory can interpret child and family
Linderuse and abandonment of A AC devices, not simply
as lack of knowledge or motivation to change, but as the
active expression of competing families' ecological influences, interests, values, and knowledge (Peck. 1993).
In fact. Blackstone (1994) indicated that when assistive
technology is involved, some families actively choose
between devices based first and foremost on what they
perceive as a reasonable quaUty of life (QOL) for the
entire family rather than the impact on the overall development of their child.
& Kyrkou, 2004; Brown. Isaaes. McCormack, Baum, &
Renwick, 2004; Neikrug. Judes. Roth, & Krauss, 2004;
Turnbull et al., 2tK)4). The core principles that emanated
from the individual QOL work, such as multidimensionality and personal/environmental factors, provided the
foundation for FQOL research. Starting with these principles, a research team at the Beach Center on Disability
has carried out three phases of research in the development of a scale to measure FQOL. The first phase was
comprised of qualitative inquiry involving 33 focus groups
and 34 individual interviews that included family members of children with and without a disability, individuals
with a disability, service providers, and administrators
(Poston et al., 2003). In the focus groups and interviews,
questions focused on families describing the times in their
family life when things are going really well and when
things are especially tough. Data analysis resulted in the
identifieation of 10 domains and 112 indicators within
those domains. The second phase of the research used
exploratory factor analysis to develop a statistical model
of the qualitatively derived items in order to form subscales and reduce the domains and indicators (Park et al.,
2003). The 10 domains identified in Phase 1 were combined and reduced to 5 domains and 41 indicators. The
third phase inciuded two studies carried out to confirm
and refine the factor structure; additionally, the third
phase included reliability and validity studies of the Beach
Center Family Quality of Life Seale (HofDiian, Marquis,
Poston, Summers, & Turnbull, 2006). Based on a sample
of almost 5(X) families of children with disabilities, confirmatory faetor analysis refined the five domains and
reduced the items to 25. TTie five domains include family interaction, parenting, physical/material well-being,
disability-related support, and emotionai well-being. Data
indicated that the subscales were unidimensional and internally consistent. Additionally, test-retest reliability and
convergent validity were found to be satisfactory.
What is Fainily Quality of Life?
From a policy perspective. The Arc of the United
States sponsored a national conference in January 2003 to
identify the "policy promises" that are embedded in U.S.
policy and to make recommendations for how researeh
can advance these policy promises (Lakin & Turnbull,
2005). The conference addressed 12 topics within the DD
field with family life being one of those. The conference
participants who addressed family life formtilated an
overarching policy goal and five associated goals reflecting U.S. policy promises to families. The overarching
policy goal is as follows: "To support the caregiving
efforts and enhance the quality of life for all families
[emphasis added] so that families will remain the core
unit of American society" (Turnbull et al.. 2fX)4).
Given the foundations that FQQL has Ln both research and policy, we have used the FQOL construct
and its five domains in this paper as the conceptual
organizer for reviewing the literature on AAC. The
purpose of this paper is to review literature on family
perspectives and outcomes on current AAC practice.
TTie concept of family qualily of life (FOOL) has emanated from earlier research on the QOL of individuals
with disabilities. Based on the individual contributions
of researchers throughout the developmental disabilities
(DD) community (Cummins, 1997; Felce, 1997; Hughes
& Hwang. 1996; Sehalock, 2000). an intemationai team of
researchers synthesized research related to QOL's conceptualization, measurement, and application (Sehalock
et al., 2002). Some of the core principles identified by
this team include the fact that QOL is comprised of
both subjective and objective components, is multidimensional and influenced by both personal and environmental factors, and is composed of the same factors
for people with disabilities that are important to people
without disabilities.
As an extension of research on QOL. researeh has
more recently foeused on conceptualizing, measuring, and
applying the construct of FQOL (Brown. Davey, Shearer,
Saito and Tumbull
52
Procedure for the Literature Review
Search Strategies
We searched for research articles pubiished in peerreviewed journals which explored perspectives of families whose chiidren are AAC users. The search terms used
to identify relevant studies were "augmentative and alternative communication," "AAC," "assistive technology,"
"famiiy," "parents." "caregivers," "perspectives," "perception," and combination of these terms. The database
used for conducting the search included Educationai Resources Infonnation Center (ERIC) database. PubMed
database. Psychological Abstracts Oniine (PsycINFO),
and Wiison Omnifile full-text seiect (Wilson Web). We
hand-searched the joumal of Augmentative and Alternative Communication to augment the computer-assisted
search. We also reviewed the reference lists from studies
obtained in the computer-assisted and hand searches to
identify additional relevant studies.
Studies were included in this review if (a) they empioyed quantitative or quaiilative inquiry, (b) if they
were published between i985 and 2005, (c) If their focus was to address famiiy perspectives about the AAC
practices impiemented with their children with disabilities and/or about the impacts of the AAC practices on
their own famiiy lives, and (d) if a majority of AAC users
inciuded in the sampie were younger than 21 years oid.
Studies were exciuded if their main purpose was to
measure effects of specific AAC intervention and only
marginaliy addressed family's opinion about the specific
intervention. Studies on family perspectives on AAC
practice in foreign countries, other than the United
States, were excluded.
Data Analysis
Data were summarized regarding purpose/research
questions, participants, instruments, research limitation,
and major research findings. The findings related to
issues of FQOL were then highlighted and categorized
based on the five domains of the FOOL framework. For
each domain, the first author generated several themes;
then through discussion with the second author, we
refined and finalized the themes.
Search Results
A totai of 13 studies meeting the specified criteria
were ioeated. Given that researchers reported that the
field of AAC research did not specificaily focus on famiiy issues until the mid-1990s (Blackstone. 1994: Parette
& Angeio, 1996), it is not surprising that the research
base on family perspectives and outcomes is smaii,
Aithough some of these studies have limitations regarding rigor, we suggest that it is stiii important to
examine what is known now about famiiy issues in AAC
practices and to suggest future directions for practitioners and researchers.
Tabie 1 provides a summary of the articies. Ail of
the 13 studies were nonexperimentai and descriptive
in nature. Five studies implemented surveys (Allaire,
Gressard. Biackman. & Hostier, 1991; Angeio. 2000;
Angelo, Jones, & Kokoska, 1995; Angeio, Kokoska. &
Jones, 1996; Cuip, Ambrosi. Berniger, & Mitcheil, 1986);
seven studies used qualitative methods such as interview, focus group, observation and content analysis from
secondary sources (Baiiey. Parette, Stoner. Angeii, &
Carroll. 2006; Huer & Lloyd. 1990; Huer. Parette, &
Saenz, 2001; McCord & Soto, 2004; Parette et al., 2000;
Parette, Chuang, & Huer, 2004; Todis, 1996); and one
study used a psychologicai index (Jones, Angelo, &
Kokoska, 1998). Among the quaiitative studies, four
specifically investigated perspectives of families from
diverse cuitural backgrounds (Huer et ai., 2001; McCord
& Soto, 2004; Parette et ai., 2000; Parette et al., 2004).
Family Perspective on AAC Practice and
FQOL Domains
In the foiiowing section, the 13 articies are reviewed
using the five domains of FQOL as an organizing framework for understanding the central issue of famiiy perspectives on AAC practices. Figure 1 provides a graphic
representation of the five domains and the themes that
emerged witiiin these domains from the reviewed articies.
Family Interaction
The FQOL domain, family interaction, is characterized
by the relational components of famiiy iife. The indicators
inciude enjoying spending time together, taiking openiy
with each other, showing iove and care for each other,
soiving probiems together, and supporting each other to
accomplish goals (Summers et ai.. 2(X)5). Among the
reviewed articles, seven articies were found to reiate to
this domain (Aiiaire et a)., 1991; Angeio, 20(K); Culp et ai.,
1986; Huer & Lioyd, 1990; Huer et ai., 2001; McCord &
Soto, 2004; Parette et al., 2000). Two themes under the
family interactions domain reiated to AAC practice are
relationships with nuciear and extended family, and
famiiy communication styles and preferences.
Relationships with Nuclear and Extended Family
This theme embraces an understanding of who the
family members are and how they reiate to the young
AAC user in the family's life. Persons in the immediate
famiiy were often the most significant communication
partners in the AAC users' lives (Huer & Lloyd, 1990).
Angelo (2000) conducted a comprehensive survey that examined the impact of AAC devices on the famiiy using a
5-point Likert scale. Neariy haif the families rated strongiy
agree or agree that the parent's reiationships with their
chiid are enhanced (49%) and that AAC aiso enhanced
their reiationships with their extended family (45%).
Focus groups with Native American. Latino, Asian
American. Afriean American, and European American
families of AAC children revealed that families wanted
professionais to consider and support the needs of
sibiings and extended famiiy (Parette et ai., 2000). They
AAC and Family QOL
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AAC and Family QOL
Family Quality of Life Domains
Familv Interaction
Parenting
Relationships with
nuclear and
extended family
Parents' roles
and
responsibilities
Family
communication
styles and
preferences
Information and
training needs
Phvsical/MateHal Well-BeinE
Funding support and
warranty for devices
Disabilitv-Related Support
Emotional Well-Beine
Partnerships with
professionals
Evolution of parents'
attitude
AAC device features
Frustration and stress
Device use in the
community
Sources of social
support
Advocacy
Transition needs
Figure I. Issues associated with family perspectives of AAC practice.
also wanted professionals to understand the importance
of cotisidering opinions of elder and extended famiJy
members and to involve them in the AAC assessment
and planning process.
Family Communication Styles and Preferences
This theme addresses issues pertaining to families'
perspectives regarding their communication styles and
preferences. For many families. AAC devices enhance
communication among family members (Angelo. 2000:
Culp et al., 1986). A telephone survey by Culp et al.
{1986) indicated that the most frequent strength of AAC
that families reported was that "it was a way to communicate" (Cuip et al., 1986. p. 22), Angelo (2000) found
that slightly over half of survey responders reported
that parents' communication with their child is better
(55%) and that parents do not perceive that the device
restricts communication (52%). In spite of these positive
findings, Angelo suggests limiting generalizability of the
findings because the survey's respondents were predominantly two-parent, European American, well-educated.
and middle-income families.
Families expressed communication as a high need area
even if their children were at the presymbolic level
(Allaire et al., 1991). Furthermore, families of children
with severe speech impairments, who did not have prescribed AAC devices, recognized the need to augment
their child's communication in some way (e.g., express
feelings without having tantrums); ahhough families reported that this need was sometimes overlooked.
Famihes' preferences for a specific communication
mode (e.g.. spoken words, sign language, electronic communication system) should be taken into consideration
in implementing AAC. A culturally and linguistically diverse family may prefer vocabulary from their own lan-
gtiage programmed on their child's device, although a
child uses English vocabulary at school (Parette et al.,
2000). Two qualitative studies conducted with Mexican
American families indicated a preference for gesture, sign
language, or verbal speech as the communication mode
for their children (Huer et al.. 2001; McCord & Soto,
2004). Huer et al. (2001) reported that respondents (a)
did not use AAC devices at home because all family
members could understand the children without assistance and (b) relied largely on physical contexts or internalized processes for communication that is observed and
valued within their culture as contrasted to coded, explicit, transmitted messages that the AAC device created.
Similarly. McCord and Soto (2004) reported that although the participants' children were able to express
more complex information while using the AAC devices than without them, family members valued a more
intimate (i.e., close proximity, eye contact, familiar, and
interdependent) and personal connection than they perceived was possible with the AAC devices.
In summary. AAC practice can have a positive impact
on various aspects of the family interaction domain of
FQOL. In order for meaningful AAC outcomes to be
achieved, families requested that consideration be given
to enhancing relationships with nuclear and extended
famiiy members. In addition, families wanted consideration for each family's specific communication styles and
preferences. This is especially important for families of
culturally and linguistically diverse backgrounds who
may have unique communication styles.
Parenting
The FQOL domain of parenting is characterized by
the child rearing and parental function of family life. The
indicators include the family member's capacity to help
58
Saito and 1\irnbull
children learn to be independent, help with schoolwork
and activities, teach social skills, and address individual
needs of every child (Summers et al., 2005). Eight articles were found to relate to this domain (Angelo, 2000;
Angelo et al., 1995, 1996: Bailey et al., 2006; Culp et al.,
1986; Huer & Lloyd, 1990; Huer et al., 2001; Parette
et al.. 2000). Three themes under the parenting domain
related to AAC practice are parents' roles and responsibilities, information and training needs, and advocacy.
Parents' Roles and Responsibilities
This theme embraces parents' roles and responsibilities for child rearing and education in family life. A
couple of research studies (Culp et al., i986; Huer et al.,
2(K)i) reported that AAC devices contribute to easing
some aspects of parenting tasks. For example, a device
made it possible for an AAC user to be cared for by a
child care provider (Culp et ai.. 1986) and to use the
bathroom more independently (Huer et al., 200i).
Many research studies reported, however, that AAC
devices increase parenting responsibilities. In Angelo's
(2000) survey, nearly 60% of parents strongly agreed or
agreed that after an AAC device became available, their
roles and responsibilities increased relative to the implementing and maintaining of the devices. According to
the respondents (i.e., two-parent, European American,
well-educated, middle-income families), mothers were
more likely to assume greater roles and responsibilities
associated with AAC devices than fathers, and they
perceived that they made a significant personal investment of time and energy related to AAC devices. A
qualitative cross-case analysis with European American
families revealed that family members' expectations of
AAC device use for their children included increased
independence, communicative competence, and communicative opportunities (Bailey et al., 2006). ironically,
parents' roles and responsibilities might increase as they
try to meet these expectations. Families noted that they
facilitated significant social opportunities for their young
children, including older AAC users (Huer & Lloyd,
1990). Huer and Lloyd (1990) pointed out that many
of the children and youth aiso used wheelchairs due
to mobility impairments. Parents who have children
who have both communication and mobility restrictions
tended to have a greater increase in their parental roles
and responsibilities associated with AAC use. Mobility,
as well as communication restrictions, appeared to limit
the degree of participation an AAC user could achieve
and created a user's continued rehance on others.
Information and Training Needs
This theme addresses information and training needs
reported by parents in terms of parenting young AAC
users. Angelo et al. (1995, 1996) conducted surveys identifying the needs, preferences, and priorities of parents
of young children ages 3-12 (Angelo et al., 1995) and
older children ages 13-21 (Angelo et al, 1996). In both
studies, parents expressed the high priority needs of "in-
tegrating assistive technology at home" (Angelo et al.,
1995, p. i98; Angelo et al., 1996, p. 17) and "integrating
assistive technology in the community" (Angelo et al.,
1995, p. 198; Angelo et al., 1996. p. 17). Related to these
needs, parents clearly expressed their desire for information and training. They put high priority on "increasing
knowledge of assistive technology" (Angelo et al. 1995,
p. 198; Angelo et al., 1996, p. 17) and "planning for future communication needs" (Angelo et al., 1995, p. 198;
Angelo etal., 1996, p. 17).
The information and training that parents need
change over the lifespan. Fathers of younger children
emphasized "knowing how to teach utilization of assistive device to their children" (Angelo et al., 1995,
p. 198), whereas fathers of older children underscored
the importance of "knowing how to maintain or repair
assistive devices" and "knowing how to program an
assistive device" (Angelo et al., 1996, p. 17).
In the study by Parette et al. (2000), families from
diverse cultural backgrounds also preferred to assume
the roles of trainer/educator to other roles of expert,
negotiator, and collaborator. In the Parette et al. study,
families reported wanting information and training materials in their native language as well as repeated training sessions for extended family members and siblings.
In the study of Mexican American families (Huer et ai.,
2001), aithough they did not use AAC devices at home,
they recognized the need for and usefuiness of devices
outside the home and wanted training so they couid
understand how to use their children's devices.
Advocacy
This theme embraces the advocacy role and needs of
parents in terms of family's and young AAC user's
OOL. Parents who responded to Angelo's (2000) family
impact survey were mostly mothers, and about 60%
of them assumed an advocacy role for their children
using AAC, whereas their spouses and children assumed
secondary advocacy roles. However, only 20% of parents reported involvement with advocacy groups or participation in systems change or policy issues. "Finding
advocacy groups for parents of children using devices"
(Angelo et al., 1995. p. 198; Angclo ct al., 1996, p. 17)
had a relatively high priority among mothers of young
(ages 3-12) AAC users (41%) but needs declined for
mothers of older (ages 13-21) AAC users (35%).
In summary, the introduction of an AAC device and
practice into a family's life affects the family's OOL
domain of parenting. Parents indicated their roies and
responsibiHties associated with AAC devices increased
their parenting loads. They, especiaiiy mothers, perceived an increase in their personal investment of time
and energy and were inclined to assume advocacy roles
related to AAC use. Both mothers and fathers expressed
an increased need for information and training particularly in terms of how they could better incorporate
AAC into their family and community lite.
AAC and Famiiy QOL
Physical/Material Well-Being
Tiie FQOL domain of physical/material well-being
incorporates the physical and material aspects of the
family's quality of life. 'Hie indicators include the family's
ability to get needed funding support and the capacity
to meet their expenses (Summers et al., 2005). Six articles were found to relate to this domain (Angelo,
2000: Angelo et al., 1995; Culp et al., 1986; Huer et al..
2001; Parette et al., 2000; Todis, 1996). A theme within
the physical/material well-being domain reiated to AAC
practice is funding support and warranty for devices.
Funding Supporl and Warranty for Devices
This theme addresses issues associated with purchasing and maintaining devices, in Angelo's (2(X)0) AAC
family impact study, all the participants were from a
particular agency that had a long-term equipment loan
program for their children using AAC through age 21.
About 75% of families were satisfied with funding support, and more than half the parents were satisfied with
the device warranty provided through the program. In
other studies, however, families expressed their need for
information on funding processes, support from vendors,
and information and support related to product warranties (Angelo ct ai., 1995; Culp et al., 1986; Huer et al.,
2001; Parette et al., 2000; Todis, 1996).
Oualitative studies revealed that parents are typically
faced with a decision to either commit a large amount of
their own money or to spend time and energy in seeking
money from various sources (Todis, 1996). in addition,
the cost of the devices prevents parents from regarding
the device as something they wiii use merely on trial
basis (Todis, 1996). One reason for Mexican American
families' nonpreference for AAC devices was that they
did not feel comfortable with the responsibihty implied for accepting such expensive equipment (Huer
et al., 2001). Families from diverse cultural backgrounds
wanted clear communication about ownership, repair
periods, and waiting periods for initial receipt of the
devices, as well as funding processes (Parette et al.,
2000). Parette et al. (2000) stated that although their five
focus group sites involved similar funding resources
within each state (e.g., iDEA, private insurance, and
Medicaid), procedures and protocols for receiving devices and services using these funding systems widely
varied. This resulted in families being confused by the
various procedures and protocols.
in summary, the introduction of an AAC device
into a family's life may have significant impact on the
FOOL domain of physical/materiai weli-being. Families expressed a need for information on funding processes, support from vendors, and warranties avaiiabie
on devices.
Disability-Related Support
The FOOL domain of disability-related support is
characterized by support that family members who have
chiidren with special needs may require from the formal
59
service system in order to experience quality family,
school, and community hfe. The indicators inciude the
family having support to heip the child with special needs
to make progress at home or schooi and to make friends,
as weli as for the famiiy to have a good relationship with
service providers (Summers et al., 2005). Seven articles
were found to relate to this domain (Allaire et al.. 1991;
Angeio et al., i995, 1996: Bailey et al., 2006; Culp et ai.,
1986; Parette et ai, 2000, 2(X)4). Four themes under the
disability-related support domain that relate to AAC
practice are partnerships with professionals, AAC devices
features, device use in the community, and transition
needs.
Partnerships with Professionals
This theme addresses the concept of how families and
professionals partner with each other for the provision
of AAC practice to young AAC users. Parette et al.
(2000) found that families from diverse culturai backgrounds clearly raised issues of partnerships with
professionals. Families wanted the foiiowing: (a) professionals to use minimal jargon and to be honest; (b)
professional recommendations based on objective rather than subjective experiences and to be individuaiized;
and (c) professionais to be sensitive to their demands,
needs, routines, and the reality of famiiy life. Families
also expressed a desire for professionals to show sensitivity to the child-specific issues of ethnicity and disabihty. For example, some famihes wanted to avoid the
stigma of making their child feel and look different,
which could be caused by the AAC devices (Parette
et al., 2000). Families noted the importance of their own
role in evaluations and wanted professionals to recognize that their recommendations on AAC use were
based on short-term contact with the child, versus lifetime contact on the family's part (Parette et al., 2000). In
the study by Bailey et al. (2006), although families recognized the necessity of time for the development of a
supportive, family-professional relationship, they felt
that they did not have sufficient time for this to occur.
A family's partnership style with professionals may
change over time through the family empowennent process. Parette et al. (2004) reported that first-generation
Chinese immigrants, as they adjusted to the U.S. society,
developed more positive attitudes toward their children's
future, no longer reported feeling ashamed of their children's disabilities, and became strong advocates for their
children. As Parette et al. indicated, increasing families'
awareness and knowledge of their children's educational
rights and other societal resources helped to create equal
and interactive family-professional collaboration styles.
AAC Devices Features
This theme embraces features of AAC devices which
may affect the child and his or her family's lives. Families were concerned with issues of transportation, space,
and maintenance of the device. For exampie, a family
60
Sailo and Turnbult
reported that the device was too heavy to send back
and forth to school and that programming it was overwhelming and time consuming (Parette et al., 2000).
Families felt frustrated with inconsistent reliability of
the devices (e.g., the device does not work sometimes),
especially when the reliance on the AAC device was
high (Bailey et al., 2006). Studies reported that parents
wanted smaller, less complex, more durable, and more
portable devices with intelligible and sophisticated
output (Allaire et al., 1991; Culp et al., 1986; Parette
et al., 2000). Difficulty or nuisances in handling devices
by children as well as by families might result in abandonment ofthe device (Allaire et al., 1991). Some families were ctmcerned about the potential stigmatization
resulting from a device; thus, developing devices accepted by the general public is a critical issue for their
FOOL (Parette et al., 2000). It should be noted that
some of the studies addressing device features were
pubiished more than 15 years ago (Allaire et al., 1991;
Culp et al., 1986); therefore, current AAC users are
likely to have access to newer AAC devices.
Device Use in (he Community
This subtheme includes supports for young AAC
users in order to incorporate AAC in their community
life. Although underuse of AAC devices in the community has been reported (Allaire et al., 1991; Culp et al.,
1986; Parette et al., 2000), many families expressed their
children's needs for peer relationships and community
involvement. It should be noted that as early as two
decades ago, Culp et al. (1986) reported that families
want the general public to have more education regarding AAC use. Angelo's group also revealed that
parents of children using AAC expressed the high priority need for "integrating assistive technology in the
community," "developing community awareness and
support for users," and "having social opportunities for
the AAC adolescents with peers" (Angelo et al., 1995,
p. 198: Angelo et al., 1996, p. 17). More recently Bailey
et al. (2006) reported that AAC use in the community
seemed to improve the community members" perceptions of AAC users' competence.
Transition Needs
This theme inciudes items reiated to supports for
young AAC users that address their needs for successful transitions as they grow older and broaden their
social life. "Planning for future communication needs"
(Angelo et ai., i995, p. 198; Angelo et al., 1996, p. 17)
was a high priority for parents of both younger and older
children. Angelo et al, (1996) suggest that planning for
future communication involves upgrading assistive
devices and ensuring access to services to meet those
needs. Not only do parents need information about
access to information about technology options, but
they also need information on services that support
the chiid's changing communication requirements (e.g.,
reevaluation, retraining) and facilitate transitioning.
Although parents perceived that their children had increased educational (72%) and social opportunities
(59%) as compared to their situations before using
AAC, about half responded with uncertainty about future opportunity for their children (e.g., higher education, independent living, and employment) (Angelo,
2000). Parents of adolescents expressed needs for their
children to have social opportunities with other AAC
users (Angelo et al., 1996): whereas parents of young
AAC users did not express this need.
In summary, the provision of AAC devices and AAC
practices directly affects the FOOL domain of disabilityrelated support. Families wanted professionals to be
partners, taking families' unique needs into consideration. Families' partnership styles with professionals may
change as they gain an increased awareness and knowledge of their children's educational rights and other
societal resources. Families expressed strong needs for
AAC practices that take into considerations issues of use
in children's community and social lives, as well as future
transition perspectives. In this regard, Angelo et al.
(1996) emphasized the importance of implementing continuous needs assessment so that professionals can meet
evolving famiiy priorities and needs across time.
Emotional Well-Being
TTie finai FOOL domain of emotionai weli-being
includes the emotional aspects of FOOL, such as adaptability, happiness, and stress/exhaustion. The indicators
inciude the family's or member's capability to have the
support needed to relieve stress, to have friends or
others who provide support, to have time to pursue
individual interests, and to have outside help available
for meeting the speciai needs of ail family members
(Summers et al.. 2005). Seven articles were found to
relate to this domain (Angelo, 2000; Bailey et al., 2006;
Huer & Lloyd, 1990: Huer et al. 2001: Jones et al., 1998;
McCord & Soto, 2004: Todis, 1996). Three AAC themes
related to the emotional well-being domain are evolution of parents' attitudes, frustration and stress, and
sources of social supports.
Evolution of Parents' Attitudes
This theme includes changes over time in parents'
emotions and attitudes toward AAC devices. Todis
(1996) reported on the complexities associated with the
introduction of assistive devices into the lives of children
with disabihties and their families. Parents' attitudes
toward assistive devices often evolve from surprise and
confusion when it is first suggested to resignation or
tentative hope that a device will promote development
and social interaction. Initial parental resistance to assistive devices comes from a concern that skills will be
lost or that speciahsts are "giving up" (Todis, 1996, p. 52)
on their child ever developing skills for speech. When
parents overcome their initial resistance to the idea of
"artificial systems" (Todis, 1996, p. 52), cautious interest
AAC and Family QOL
can quickly turn to enthusiastic advocacy for devices,
such as "answer to all my prayers" (Todis, 1996, p. 52).
In this regard, Todis as weli as Bailey et al. (2006) suggested that families should be cautioned against viewing
the AAC devices as a panacea for solving communication difficulties and informed of the continuous work
that is necessary to make device use functional aiid
efficient,
Frustration and Stress
This theme addresses the frustration and stress that
may be experienced during the implementation of AAC
practice. In Angelo's (2000) study, in spite of the families' perceptions of increased roles and responsibilities,
the majority of respondents (i.e., two-parent, European
American, well-educated, middle-income families) did
not report restricted lifestyles as a result of their child
using an AAC device, nor did they find AAC devices
to be either burdensome or stigmatizing. Angelo indicated that the positive findings of this study reflected
the perspectives of "traditional families" (Angelo. 2000.
p. 44), who could afford to overcome the stressors.
Participants in the study by Bailey et al. (2006). who are
also traditional families, reported that although there
were difficulties, stressors, and barriers related to AAC
device use. the devices were an integral and vital eomponent of their children's communication. Another
study by Jones et al. (1998) on stress experienced by
parents of young AAC user ages 3-12 shows, however,
even those "traditional families" might experience considerable degree of stress. In this study, both mothers
and fathers of young AAC users (i.e., mostly two
parents, European American, well-educated, middleincome families) had a clinically at-risk score on childrelated stressors on the parenting Stress Index (Abidin,
1995). A score in this range indicates parents shouid be
referred for assistance.
Although families of young AAC users in Angelo's
(2000) study did not report AAC devices to be either
burdensome or stigmatizing, families in other studies expressed a variety of sources of stress. Bailey et al. (2006)
reported that much of the participants' stress was related
to the amount of time that was required to program
the AAC device, Huer and Lloyd (1990) compiled
and summarized perspectives of 165 AAC users in 187
first and third-person articles published between 1982
and 1987. They reported that the topic of frustration
appeared more frequently than did other topics in the
data. The reason for frustration often centered on the
family's interactions with professionals. Children using
AAC and their parents frequently criticized professionals such as doctors, educators, and speech language
pathologists. For example, they objected to educators
failing to see potential in a child because of his or her
physical disability and limiting his or her educational
opportunities (Huer & Lloyd, 1990). Although the data
by Huer and Lioyd are somewhat dated, more recent
61
studies continue to report families' frustration caused
through interaetion with professionals. Todis (1996)
reported that parents' high expectations of the benefits
of their child using an AAC frequently bring them into
conflict with special educators and therapists. Furthermore, parents might become frustrated with what they
regard as the educator's lack of interest in the device,
their low opinion of their child's abilities, or their lack
of training and knowledge about devices. Parette et al.
(2000) indicated that adhering only to professional recommendations concerning device usage without considering family needs, preferences, and priorities might
cause frustration for families. When families become
frustrated with professionals, they often do not wish
to comply with their recommendations, commtinication
begins to breakdown, and the devices may be abandoned. It should be noted that the failure to address
families' needs and preferenees as stated previously (i.e..
family needs in other FQOL domains) may possibly
cause families to experience frustration and stress. The
discrepancies between findings of these studies and the
results of Angelo's study may support Blackstone's
(1994) suggestion that when assistive technology is involved, some families actively choose between devices
based first and foremost on what they perceive as a reasonable quality of life for the entire family rather than
the impact on the overall development of their child.
Sources of Social Supports
This theme includes the family's opportunities to have
the supports needed to relieve stress and to have outside
help available for meeting the special needs of all family
members. The study by Jones et al, (1998) described
social supports identified by parents. Fathers (97%) and
mothers (60%) identified a spouse or partner as the "most
helpful" person for raising a child who uses AAC. A
mother's parents tended to be identified as "most
helpful." whereas a father's parents were "least helpful."
Groups and people identified as "most helpful" were
professional helpers, school/child care center staff, early
childhood intervention program personnel, and one's
own children (i.e., siblings of children using AAC). Social
groups, friends, relatives, other parents, parent groups,
professional agencies, church members, and the family/
child physician tended to be identified as "least helpful."
Families from diverse cultural backgrounds may have
unique social supports. Huer et al. (2001) reported that
during their interviews with Mexican American families, a reoccurring theme of "working together" (p. 202)
among all family members (including extended family)
as well as among community members was noted.
McCord and Soto (2004) found that in many Hispanic
communities people were interdependent and were able
to rely on each other to provide supervision for the children and to support the family member with a disability.
In summary, the provision of AAC devices and AAC
practices may influence both positively and negatively
62
Sailo and T\irnhull
the FQOL domain of emotional well-being. Although it
has been reported repeatedly that professional insensitivity to family issues may cause additional frustration
for families, many parents identified professionals at
schools/programs as a primary source of social support.
As Todis (1996) suggested, the way professionals introduce the devices may actually contribute to the positive
attitude expressed by parents; enhancing positive attitudes can, in tum, contribute to emotional well-being.
Implications for Practitioners and
Researchei^
In reviewing the literature on families' perspectives
regarding AAC practices, it is apparent that the impact
of current AAC practices encompasses multiple FQOL
domains inciuding family interaction, parenting, physical/materiai well-being, disability-related services, and
emotional well-being. Implications of this literature for
professionals and researchers regarding AAC practices
that impact on FQOL outcomes are presented below.
Implications for Practitioners
According to this review, families want empowering
partnerships with professionals related to support for
AAC use in their current and future lives at home and in
their community. They expressed significant needs for
acquiring and updating their knowledge about AAC
over time (Angelo et al., 1995.1996). given that they are
assuming active roles in AAC decision making (Parette
et al., 2000). Sensitivity to family goals has been increasingly emphasized in the literature (Parette et al.,
2000). Professionals should focus on helping families
gain knowledge to make informed choices and decisions
about technology and services for their children (Angelo
et al., 1996: Parette et al., 2004). For example, Parette
et al. (2000) suggested that family members might be
unprepared for the responsibilities of programming and
learning to use devices, so families must be provided
assistance in order to develop their knowledge of AAC
processes in order to make final decisions. Angelo et al.
(1996) also suggest that professionals should strengthen
the family in ways that make family members feel
competent rather than dependent on professionals and
services. This is especially important for families from
diverse cultural backgrounds (Parette et al, 2000;
Parette el al.. 2004). Knowing the roles family members assume (e.g., nurturer, provider, advocate, teacher),
professionals can support them in their existing and
evolving roles related to AAC practices (Angelo et al.,
1996). Moreover, inereasing families' awareness and
knowledge of their children's educational rights helps to
create equal and interactive family-professional partnership styles (Parette et al., 2004).
Assisting families with a child with AAC in accessing
social supports and resources is another powerful way
to empower families. This review revealed that sources
of social support for families were mainly their own
family members and professionals who provided services
in their daily lives (Jones et al., 1998), but the families
wanted other societal supports, such as advocacy groups
for parents of children using devices and social opportunities with other AAC users for their adolescent (Angelo
et al., 1995, 1996). Angelo et al. (1995) suggested that
professionals could link families to parent support groups,
advocacy groups, and volunteer services, which is an important step for identifying and accessing resources and
meeting both present and future needs.
Professionals can potentially enhance FQOL through
the sensitive implementation of AAC practices. Based
on the findings of the review and other sources (e.g.,
Blackstone, 1994). Table 2 provides a self-assessment
checklist for professionals for family-friendly AAC
practices.
Implications for Researchers
The reviewed studies demonstrate that current AAC
practices impact multiple domains of FQQL. For ex-
Table 2
Checklist for Professionals Working with Families with Young AAC Users
1. Do you listen carefully to the priorities, expectations, and preferences of the family in regard to AAC practice?
2. Do you ask who the main family members are and what roies each family member plays-information provider, active participant,
advocate, communication partner, planner, etc.? Are ail intlucntial family members participating in decision making in the AAC
practice?
3. Do you treat each family as unique, respecting the family values and their communication style? Do you incorporate them into
AAC practices?
4. Do you recognize that the AAC device increases the family member's roles and responsibilities and may affect the family routmes
and lifestyle? Do you respect the family for working on these accommodations?
5. Do you provide appropriate AAC-rclated infonnation and Iraining based on each family's unique needs?
6. Do you provide information on the funding processes, supports, and warranties for the AAC device? Are they clear to the family?
7. Do you sample the language use of siblings and peers? Do you ask families to help you select symbols to represent vocabulary
on displays/devices?
8. Do you facilitate social opportunities with peers for the child using AAC? Do you support community participation of the chiid
and family?
9. Do you work on transition needs of the child and family? Do you provide stability and continuity in AAC services across time?
in. Are you aware of the frustration that the family might have caused by the service provision/management of the AAC deviee?
Do you provide appropriate supports/solutions to the problern?
AAC and Family QOL
ample, although traditional client-focused AAC practice assumed that the desired outcome of the adoption of
AAC would lead to greater independence of children,
and less parental time, energy, and responsibility, the
review revealed that parents' roles and responsibilities
associated with devices actually increased their parental
roles and responsibilities (Angelo. 2000). This parental
feedback suggests that one of the reasons for underuse
and abandonment of devices could be social invalidity
(Schwartz & Bare, 1991;Wolf, iy7S). The findings of this
review underscore the need for family members to be
considered as important stakeholders of AAC practices
and research. In addition, taking into consideration
ramilies' preferences for children's inclusive life in community and school, the perspectives of peers of AAC
users, general education teachers, and prospective communication partners in the community need to be considered, and this would be supported by the social
validity literature. Unfortunately, despite the increasing
emphasis on stakeholder accountability, social validation is far from commonplace in the research field of
AAC A content analysis of AAC intervention studies
using experimental single-subject designs revealed that
only 13% of the surveyed studies included social validation procedures (Schlosser. 1999). Social validation
must be considered for al! AAC research studies.
A definition of evidence-based practice (EBP) in
AAC. proposed by Schiosser and Raghavendra (2004),
addresses the importance of stakeholders' perspectives.
•'Evidence-based AAC practice is the integration of best
and current research evidence with clinical/educational
expertise and relevant stakeholder perspectives, in order to facilitate deeisions about assessment and intervention that are deemed effective and efficient for a
given direct stakeholder" (Sehlosser & Raghavendra.
2004, p. 3). Aithough there are three important com-
63
ponents in the definition of EBP in AAC (i.e., research
evidence, practitioner expertise, and relevant stakeholder perspectives), stakeholder perspectives are mostly valued for best practices in EBP. "Best practices in
EBP demand that direct stakeholders be made aware
of clinical/educational expertise and all avaiiabie current research so that they may make informed decisions
about how to proceed-even if those decisions are contrary to the evidence or what the practitioner believes"
(Schlosser & Raghavendra, 2004. p. 17).
Another important issue of research in this field is
placing greater emphasis on a research agenda with an
evidence-based orientation. Hierarchy of evidence to
inform AAC intervention development and selection of
participant with disabilities is proposed by Schlosser and
Raghavendra (2004). which recommended the use of
meta-anaiysis of (a) single-subject experimental designs
and (b) quasi-experimental group designs. Furthermore,
future research complies with quality indicators for
relevant research methodology (e.g.. Odom et al., 2005).
In addition to improving rigor, another important
consideration is expanding to be more inclusive in terms
of ineluding diverse family respondents. Severai survey
studies (Angelo, 2000: Angelo et al., 1995, 1996; Jones
et al.. 1998) reported serious limitations including the
following: (a) participants were limited to a welloperated, agency-specific database; (b) the response
rate of the survey research was low; (c) the majority of
the respondents were two parents, European American.
well-educated, middle-income families: and (d) the surveys were answered mostly by mothers. The researehers
who conducted studies were typically from the same
cultural groups as those reflected by the respondents.
Lastly, by acknowledging families as important stakeholders of AAC practice, researchers should conduct research on aspects of AAC pracUce that could positively
Table 3
Research Questions on AAC Practice for Family Outcomes
FQOL
Family Interaction
Parenting
Physical/material
well-being
Disability-related
support
Emotional well-being
Possible Research Questions Regarding AAC
How do AAC practices influence the domain of family interaction?
How do interactions change over time as AAC is used?
How do family values and cultures impact child and family use of AAC?
How do families adapt roles and responsibilities regarding AAC?
Whal kinds of informalion and training needs do families have regarding AAC?
How do these needs change over time? How do families prioritize lheir needs?
How do families want to be involved in advocacy aetivities regarding aeeess to and use of AAC?
What kinds of difficulties do families experience regarding obtaining AAC deviees?
Whal are effective support syslems (information, warranty, funding support, etc.)?
What are imporiant issues for AAC decision-making processes that reflect family perspectives?
How should various professionals work together as a team to support children and families?
Are there any perspective differences among professionals regarding AAC instruction?
What are team strategies to overcome the differences in their perspectives?
How does the leam address individual child and family needs of inclusion and transition regarding
use of AAC?
How should professional preparation programs address family-centered AAC practice?
What kinds of frustration do families experience related to AAC?
How can professionals idenlify and assess family satisfaetion and frustrations regarding AAC practice?
Whal kinds of supports would be most helpful lo families with children who use AAC?
Sailo and Turnhull
64
impact FQOL outcomes. Since the late 1990s, family considerations, culturai issues, and issues of community inciusion have had greater prominence in the field of AAC
research than ever before (e.g.. Beck. Fritz. Keiier. &
Dennis. 20(K); Hetzroni & Harris. 1996; Hunt, Soto. Maier,
Muiler. & Goetz, 2002; Kemp & Parette, 2000; KentWalsh & Light. 2003; Lahm & Sizemore. 2002; Parette &
Brotherson. 2004; Parette & Hourcade. 1997; Parette &
Huer. 2002; Parette, Huer. & Brotherson. 2001; Parette.
Huer. & Hourcade, 2003; Parette & McMahan. 2(H)2;
Roiiinson & Sadao. 2(X)5). Research questions shouid
be developed that, when answered, wili be of interest
and vaiue to families and AAC users (Blaclcstone, 1994).
The FQOL framework is a useful tool for developing
research questions that have the potential to enhance
FOOL. Possible research questions related to each of the
five domains of FQOL are provided in Tabie 3.
Conclusion
Tn taking a family perspective, one reflects on each
family's unique pursuits for FQOL. Failure to take family perspective into consideration might result in a family
who is frustrated and stressed and ultimateiy in a family
who faiis to use AAC practices. Reviewing famiiy perspectives on AAC practices through the FOOL
framework provides suggestions to practitioners and researchers. For AAC practices that support FQOL, it is
clear that need for supports, resources, and accommodations exist at aii ecological contexts of a child's life, including family, school, and community, and that effective
AAC practices will need to address the systemic nature
of the problem and avoid interpreting problems as only
residing within the child and family {Turnbull. Turbiville.
& Turnbull, 2000). The FQOL framework can be a useful
tool for planning, implementing, and evaluating AAC
practices that are provided to children and families.
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Received: April 27. 2006
Final Acceptance: Juiy 14. 2006
Editor in Charge: Lynn Koegel
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