International Journal of Speech-Language Pathology, 2018; 20: 569–580

Parental experiences and perceptions related to childhood apraxia of

speech: Focus on functional implications

HEATHER LEAVY RUSIEWICZ1 , KAITLIN MAIZE2 & THERESA PTAKOWSKI3

1
Department of Speech-Language Pathology, Duquesne University, Pittsburgh, PA, USA, 2Melmark, Philadelphia,
PA, USA, and 3Raleigh Court Health and Rehabilitation Center, Roanoke, VA, USA

Abstract
Purpose: The purpose of this study was to examine the functional implications of childhood apraxia of speech (CAS) as
experienced by children and their parents.
Method: Using a mixed qualitative/quantitative design, 40 parents responded to two Likert-scale questionnaires and four
phenomenological questions about their personal experiences and their perceptions of their children’s (ages 3–16 years)
experiences of living with CAS.
Result: Quantitative data indicated that although parents reported concern about their children’s speech production as
expected, they also expressed that CAS affected their children’s every day activities and social interactions. Four key themes
emerged from the parents’ qualitative responses (1) concerns about their children’s intelligibility, (2) challenges with peer
relationships, (3) reliance on parent to be the child’s ‘‘voice’’ and (4) emotional responses such as frustration.
Conclusion: Parents’ perceptions of the functional implications of CAS focussed on their children’s peer interactions, their
own need to be the voice for their children, and the broader functional impact of CAS on their children in daily activities.
These functional implications of CAS may play a role in supporting the clinical management of those with CAS by
implementing peer-related activities, functional social situations and parent education/support during intervention.

Keywords: childhood apraxia of speech; functional outcomes; parents; phenomenology; mixed design

An initiative to provide functional, holistic care of
patients and their families is firmly established in
many areas of health care (e.g. Rosenbaum, King,
Law, King, & Evans, 1998), but relatively novel in
the area of speech–language pathology (McKean,
Phillips, & Thompson, 2012). In the case of speech
sound disorders (SSDs) like childhood apraxia of
speech (CAS), this includes the need to move
beyond objectives that solely focus on phoneme
accuracy and instead also consider the perceptions,
experiences, and interactions of an individual and
their caregivers outside of the walls of the therapy
room. Examining functional implications of CAS
and other SSDs will contribute to the validation of
the effectiveness and impact of therapy services, the
customisation of the clinical management of CAS,
and the optimisation of the wellbeing of those caring
for children with CAS.
Exploring the experiences of children and their
families is essential for all children with SSDs, but
vital for children with severe and persistent deficits
in speech production due to CAS. CAS is a SSD
resulting from primary deficits of motor planning
and programming (American Speech-Language-
Hearing Association [ASHA], 2007). Children
with CAS often require more frequent therapy
sessions, increased practice, and a longer duration
of therapy services (e.g. ASHA, 2007; Edeal &
Gildersleeve-Neumann, 2011). Additionally, indi-
viduals with CAS and other SSDs may not reach
mastery of all speech sounds (Lewis, Freebairn,
Hansen, Iyengar, & Taylor, 2004). Therefore, it is
particularly important to explore the impact of CAS
beyond speech production skills. Anecdotally, the
concern and advocacy for children with CAS via
their caregivers is robust, as demonstrated by
involvement of parents and caregivers in the many
educational and support networks available via the
Childhood Apraxia of Speech Association of North
America (CASANA). For instance, parents and
family members comprise a significant portion of
the 30 000 individuals who follow CASANA on
Facebook, the 2300 + individuals who attended
educational events in 2014 and the over 17 000

Correspondence: Heather Leavy Rusiewicz, Ph.D., CCC-SLP, Department of Speech-Language Pathology, 412 Fisher Hall, Duquesne University, 600
Forbes Avenue, Pittsburgh, PA 15282, USA. Email: rusiewih@duq.edu
ISSN 1754-9507 print/ISSN 1754-9515 online ß 2018 The Speech Pathology Association of Australia Limited
Published by Informa UK Limited, trading as Taylor & Francis Group
DOI: 10.1080/17549507.2017.1359333
570 H. L. Rusiewicz et al.
individuals who participated in the 78 Walks to raise
awareness for CAS across the nation in 2014 (S.
Gretz, personal communication, October 13, 2015).
Systematic examination of the implications of
SSDs, including CAS, is often scaffolded by the
International Classification of Functioning,
Disability and Health (ICF; World Health
Organization, 2001). Recent studies that investi-
gated the impact of a SSD on an individual,
including the present study, utilised ICF to con-
struct methodology and to frame the clinical impli-
cations for their results (e.g. Ma, Threats, & Worrall,
2008). Thus, the ICF provides a framework for
understanding the functional, every day implications
of CAS in both clinical and empirical endeavours by
expanding the focus beyond speech intelligibility and
accuracy of phonemes. The ICF was employed in
the limited literature base focussed on the impact of
SSDs on children from both the perceptions of
parents and speech-language pathologists (SLPs)
using both quantitative (e.g. Hitchcock, Harel, &
Byun, 2015) and qualitative designs (e.g.
McCormack, McLeod, McAllister, & Harrison,
2010; McLeod, Graham, & Barr, 2013).
Not only is it important to examine the impact of
CAS on the functional experiences of children, but it
is also imperative to consider the experiences of their
caregivers. Washington, Thomas-Stonell, McLeod,
and Warr-Leeper (2012, p. 230) determined that
perceptions of positive outcomes and experiences
related to intervention for speech and language goals
were linked to both the clinician’s competence and
their relationship and rapport with the child and the
family, based on a cohort of 67 pre-school aged
Canadian children. Interestingly, the wellbeing and
quality of life of caregivers is often considered in the
clinical management of individuals with communi-
cation disorders such as children with autism spec-
trum disorders (e.g. Phetrasuwan & Miles, 2009)
and adults with neurogenic communication dis-
orders, such as aphasia (e.g. Rombough, Howse,
Bagg, & Bartfay, 2007). Yet, caregiver wellbeing is
less often studied for parents of children with SSDs.
Giving parents and other caregivers a voice about
their own experience with CAS may facilitate
increased educational opportunities, alignment of
expectations with feasible therapeutic goals, and
involvement in and out of the therapy room.
To date, there are four studies of the implications
of CAS for children and their caregivers. The earliest
study, conducted by Teverovsky, Bickel, and
Feldman (2007), enrolled 192 parents of 2- to
15-year old children with CAS to complete a Likert-
scale questionnaire based on the ICF framework.
Nearly, all parents reported that their children
experienced difficulties of Body Function (e.g.
articulation, fluency) and the majority reported
difficulties with Activities and Participation (e.g.
conversation, attention, learning to write).
McCormack, McAllister, McLeod, and Harrison
(2012) are the only researchers to qualitatively study
the experience of individuals with CAS. The inves-
tigators enrolled two young men with a history of
CAS, ages 17 and 23 years, and their mothers.
Three themes (i.e. knowing that a speech disorder
was present, acknowledgment of the challenges that
were associated with their SSD and acting to address
the challenges of associated with their SSD)
emerged for both the individuals with a history of
CAS and their mothers. McCormack et al.’s analyses
suggested that parents also experienced ‘‘battles’’
(p. 151). These authors suggested ‘‘a need to
support families as well as individuals in SLT
intervention’’ and to recognise caregivers’ ‘‘feelings
of guilt, isolation, and fatigue’’ (p. 155).
Two other recent investigations aimed to qualita-
tively examine parental challenges and experiences
related to CAS. Specifically, Miron (2012) inter-
viewed 11 parents regarding their adaptation to their
children’s diagnosis of CAS. Miron also examined
the parent’s decision-making process for seeking
therapy services and their subsequent interactions
with SLPs in a sample of eight children. Parents
reported that open communication between SLPs
and families was key for a positive therapy experi-
ence and that misinformation, misdiagnosis, and
‘‘inadequate therapy services’’ (pp. 105–106) led to
negative experiences. Faranelli Allen and Babin
(2013, p. 570) also studied the wellbeing of parents
of children with CAS by exploring ‘‘romantic part-
ner support and somatic and depressive symptoms’’.
Similar to other investigations, the need for a
support mechanism was discussed given the
researchers’ finding of an inverse relationship of
the amount of caregiving and perceived support by
their romantic partner. Even though 90% of the
respondents reported feeling emotional support
from their partners, they also reported decreased
level of support from their partners for seeking out
networks of support, providing information and
tangible hands-on help. It can then be argued that
clinicians also need to expand their focus beyond
speech sound accuracy and intelligibility to include
the functional activities and experiences for the
children with CAS and also the larger family unit.
Thus, the purpose of this study was to gain a
deeper understanding about the
(1) Impact of CAS on children’s daily activities and social
interactions.
(2) Experiences of parents related to their children’s
communication deficits due to CAS.
Method
Design and participants
The present study was associated with the iPads for
Kids with Apraxia Program initiated by CASANA
(www.apraxia-kids.org). A mixed concurrent

triangulation design was employed. This design,
which is frequently used in health care research,
allows for the simultaneous and equally valued
collection of quantitative and qualitative data
which can then be integrated to better understand
a phenomena (e.g. Creswell, Plano Clark, Guttman,
& Hanson, 2003). In addition to surveying quanti-
tative data, a phenomenological approach was
employed to qualitatively investigate the descriptions
of the experiences related to CAS as related by 40
parents of 32 boys and 8 girls (M ¼ 6.9 years;
SD ¼ 3.0 years) with a primary diagnosis of CAS
(Table I). A national call for applicants for the iPads
for Kids with Apraxia Program was announced via
various digital outlets (e.g. website and Facebook
page for CASANA). An extensive application was
required to be submitted by both the child’s parent
and primary SLP. As a part of the application
process for the iPads for Kids with Apraxia Program,
the children’s SLPs provided CASANA with a
detailed description of the diagnostic procedure for
determining that the participants exhibited a pri-
mary speech disorder due to motor planning deficits.
Although there were no mandatory or consistent
assessment procedures in place across these 40
children, the reviewers at CASANA eliminated any
applicants whose diagnostic classification of CAS
was not aligned with customary procedures (e.g.
Murray, McCabe, Heard, & Ballard, 2015) and
characteristics of CAS (e.g. ASHA, 2007). Given
that the reviewers were not certified SLPs, consult-
ation with SLPs with specialised extensive experi-
ence with CAS was part of this review process. It was
required that key characteristics of speech motor
planning deficits as documented in the Technical
Report on CAS (ASHA, 2007; e.g. sequential
speech errors such as syllable segregation, inconsist-
ent errors across multiple repetitions of a target, and
prosodic stress deficits) were documented by the
Table I. Demographic information for children with childhood apraxia of speech (CAS).
Age
Range: 3.00–16.8 years
M ¼ 6.85 (SD ¼ 3.0) years
Gender
Male ¼ 32 (80.0%)
Female ¼ 8 (20.0%)
Co-existing medical diagnosis
Total ¼ 12 (30.0%)
Cerebral palsy ¼ 4 (10.0%)
Congenital heart defects ¼ 2 (2.5%)
Autism/Hearing impairment ¼ 1 (2.5%)
DiGeorge syndrome ¼ 1 (2.5%)
Pituitary dwarfism ¼ 1 (2.5%)
Microdeletion disorder ¼ 1 (2.5%)
Congenital encephalopathy ¼ 1 (2.5%)
Thalassemia ¼ 1 (2.5%)
Number of sessions per week
2 ¼ 9 (22.5%)
1 ¼ 6 (15.0%)
3 ¼ 5 (12.5%)
4 ¼ 4 (10.0%)
5 ¼ 4 (10.0%)
2 per month ¼ 1 (2.5%)
Parental experiences related to CAS 571
SLP. In the current study, the 40 children repre-
sented a heterogeneous group diagnosed with CAS
by 40 different SLPs. These children also frequently
exhibited concomitant deficits (Table I), not unlike
other investigations of CAS (e.g. Faranelli Allen &
Babin, 2013). However, future studies should follow
and document consistent inclusionary/exclusionary
criteria and subsequent diagnostic data and more
fully document concomitant concerns.
Instruments
The Focus on the Outcomes of Communication
Under Six (FOCUSß) questionnaire (Thomas-
Stonell, Oddson, Robertson, & Rosenbaum, 2010)
was chosen to assess parents’ perceptions of the
impact of their children’s challenges with speech
production on their ‘‘every day’’ activities. The
FOCUSß, a survey using a seven-point Likert scale
constructed using the framework of the ICF, is used
to assess the impact of speech and language deficits
primarily within the ICF level of Activities and
Participation, but also Body Structures/Function
and Environmental/Personal Factors. Although
many of the children were older than six, this
instrument was chosen given its relatively rigorous
development, established reliability and validity for
younger children (e.g. Washington et al., 2013), lack
of a parallel instrument for older children, and
alignment of questions to the purpose of the study
at-hand. Forty of the fifty items were used in the
current study. The FOCUSß was modified following
consultation with CASANA staff to concentrate on
spoken language production as much as possible,
while also minimising the time required for respond-
ents. For example, the items My child takes turns, My
child has difficulties changing activities, My child will sit
and listen to stories were removed due to the
relationship of the questions to behaviour in addition
Intelligibility
Range: understood 0–75% (M ¼ 25%)
of the time by unfamiliar listeners
Primary diagnosis as per speech-language pathologist
Childhood apraxia of speech ¼ 39 (97.5%)
Hearing impairment and CAS ¼ 1 (2.5%)
Treatment setting
Outpatient ¼ 16 (40.0%)
School ¼ 14 (35.0%)
Preschool ¼ 4 (10.0%)
Other ¼ 6 (15.0%)
Home ¼ 1 (2.5%)
Time enrolled in treatment
Ranged between 3 months and 11 years
(M ¼ 4.33 years)
572 H. L. Rusiewicz et al.
Table II. SPeech impact-now (SPIN) Items.
I am concerned with my child’s production of speech sounds
My child currently makes frequent speech errors
(75% or more of the time)
My child currently avoids social situations
My child currently avoids saying specific words
My child currently avoids speaking in certain situations
My child is understood by family members and friends
My child currently is understood by strangers
My child currently is embarrassed by his/her speech
My child currently has difficulty making friends
My child’s speech currently prevents him/her from
participating in daily activities, events or social situations
to communication skills. Additionally, the selected
40 items were less likely to be viewed as inappropri-
ate for children above the age of six.
Second, a 10-item questionnaire, SPeech Impact-
Now (SPIN) was used to assess the impact of CAS
on the children’s functional interaction with others
in a more succinct and direct manner (Rusiewicz,
Milloy, Staltari, & Wells, 2011). For instance, while
the FOCUSß asks many questions about the manner
in which a child may talk to an unfamiliar adult (e.g.
My child can talk about what s/he is doing with adults
who do not know my child well), the SPIN simply asks,
My child is currently understood by strangers. Other
questions of the SPIN (e.g. My child is embarrassed by
his/her speech and My child has difficulty making
friends) provided an opportunity to assess the psy-
chosocial impact of CAS and to triangulate with
qualitative data. A seven-point Likert scale was used
to examine the parents’ level of agreement with these
statements as listed in Table II (1 ¼ strongly dis-
agree!7 ¼ strongly agree). Nine of these items
corresponded to the ICF component of
Functioning and Disability with four questions
focussed on Body Function (i.e. speech errors and
reduced speech intelligibility) and five focussed on
Activities and Participation (e.g. avoiding situations,
prevention of participating in daily activities). One of
the items corresponded to Personal/Contextual
Factors (i.e. coping styles). Third, four open-ended
items were included in the questionnaires to exam-
ine the experiences and expectations of families
living with CAS from a phenomenological perspec-
tive. Prior research determined that the SPIN was
useful in understanding the psychosocial impact of
speech sound disorders on the daily lives of individ-
uals (Rusiewicz et al., 2011). Additionally, the first
author and members of CASANA reviewed this
version of the SPIN to reflect areas that are
frequently a reported concern for parents raising
children with CAS. Lastly, case history and demo-
graphic information was collected.
Procedure
CASANA initiated this programme to provide up to
40 children between three and sixteen years of age
with CAS an iPad and appropriate applications free
of charge to support their treatment. It is important
to note that families were under no obligation to take
part in this study in order to receive their devices and
that financial need was not a factor within the review
process. The data presented in this project were
collected after being told by CASANA that they
were selected to receive an iPad, but prior to the
distribution of iPads. Thus, this component of the
investigation was focussed on the general experi-
ences and expectations of parents of children with
CAS, rather than the impact of iPads on the
communication of the child.
After being selected by CASANA to receive an
iPad, the staff of CASANA sent a link to the survey
available at www.surveymonkey.com to the each
child’s primary caregiver and SLP. All of the (n ¼ 40)
of the primary caregivers and 100% (n ¼ 40) of the
SLPs completed the pre-iPad questionnaire. Only
the data from the parents are provided here. Also,
staff at CASANA removed any references to names
before transferring the files to the authors. Thus, the
investigators did not have access to any of the
participants’ identifying information. The Duquesne
University Institutional Review Board approved
these procedures.
Data analysis
The quantitative survey data obtained via the
FOCUSß and SPIN questionnaires were analysed
using descriptive metrics of central tendency and
variability. There were no missing data points for
either questionnaire for any of the 40 participants.
Because of the heterogeneity of the sample, add-
itional comparisons of the scores were completed.
After the data were tested for normality and homo-
geneity of variance using a Shapiro–Wilk test,
independent, two-tailed t-tests were completed to
analyse differences of the average FOCUSß scores as
a function of (1) gender, (2) age (i.e. ages 3;2–5;11
[n ¼ 18] compared with 6;0–16;9 [n ¼ 22]), (3)
presence/absence of concomitant medical diagnosis
(e.g. cerebral palsy) and (4) presence/absence of
reported language deficit. Children were separated
into the younger and older groups given the transi-
tion from pre-school ages to school ages, the age
range of the FOCUSß, and the resulting similar
sample sizes in each group. It is also recognised that
the reported medical diagnoses vary in potential
severity, impact on the child, etc. However, it is
difficult to ascertain the severity of these deficits and
the perceived implications of these diagnoses for the
child and their families, given that the investigators’
perceptions are likely independent of the caregivers’
perception of what deficits (and corresponding
severity levels) might impact functional skills,
activities, and interactions more than others. Thus,
the distinction of CAS in isolation and CAS
presenting with concomitant medical diagnoses of
any sort was made.
A phenomenological approach was used to ana-
lyse the content of the qualitative responses (e.g. van

Manen, 1990). The 148 total responses (i.e. 40
respondents  4 questions with 22 participants not
responding to the fourth question) were initially
coded for thought units by the first author. The
resulting 328 thought units were then reanalysed to
collapse the codes into emergent 9 themes and 54
subthemes that were used for this analysis. A second
author first reviewed the entire qualitative dataset
and examined transcripts in reference to the list of
themes/subthemes to check that the ‘‘themes appro-
priately encompassed the codes’’ following
McCormack et al. (2010, p. 383). No additional
themes/subthemes were added. This second author
then coded each thought unit given the list of
themes/subthemes and was in high agreement with
the first author (95.12%).
Result
Quantitative findings: FOCUSß and SPIN
questionnaires
Results for the parental responses on the FOCUSß
and SPIN are discussed in tandem and are presented
in Figure 1 and Tables II and III. The mean
FOCUSß score was 3.79 (SD ¼ 0.65) across all
participants. The average scores for individual items
ranged from 1.40 (i ¼ 0.74) and 5.68 (SD ¼ 1.12).
No significant differences were found for mean
FOCUSß scores as a function of gender,
t(38) ¼ 1.09, p ¼ 0.28, reported medical diagnosis,
t(38) ¼ 1.54, p ¼ 0.13, or reported language def-
icits t(38) ¼ 0.60, p ¼ 0.55. The difference of
FOCUSß scores between younger and older
Figure 1. Mean parental responses for SPeech Impact-Now (SPIN). Scoring range is 1 (strongly disagree) to 7 (strongly agree).
Parental experiences related to CAS 573
children approached significance, t(38) ¼ 2.02,
p ¼ 0.051. The mean SPIN score across all partici-
pants was 4.64 (SD ¼ 1.85) with the lowest mean
score noted for the item, My child is currently
understood by strangers (M ¼ 2.33, SD ¼ 0.66), and
the highest mean score noted for the item, I am
concerned with my child’s production of speech sounds
(M ¼ 6.28, SD ¼ 1.15).
These quantitative data aligned with different
aspects and domains of the ICF. As expected, all
parents reported that they were concerned about
their children’s ability to produce speech, to be
understood by others, and to communicate effect-
ively according to their responses on the FOCUSß
and SPIN. These core parental concerns were
associated with the Body Functions aspect of the
Functioning and Disability domain of the ICF. For
instance, five of the six lowest scores on the
FOCUSß were centred on concerns regarding clear
speech (M ¼ 1.78, SD ¼ 1.03), the ability of children
to be understood by unfamiliar adults upon first
meetings (M ¼ 1.40, SD ¼ 0.74), to communicate
independently (M ¼ 1.73, SD ¼ 1.11), to communi-
cate effectively (M ¼ 2.00, SD ¼ 1.06) and to be
understood the first time when speaking with peers
(M ¼ 2.45, SD ¼ 1.43). Parents also reported con-
cerns regarding ways in which these Body Functions
interacted with their children’s Activities and
Participation. Children’s interpersonal relationships,
a facet of Activities and Participation, were of
heightened parental concern. Parents reported a
relatively high level of concern regarding their
children’s ability to be understood by peers initially
(M ¼ 2.45, SD ¼ 1.43) and to communicate
574 H. L. Rusiewicz et al.

Table III. Mean parental responses for the FOCUSß questionnaire.

My child is understood the first time when talking with adults who don’t know my child well 1.40 (0.74)
My child can communicate independently with adults who do not know my child well 1.73 (1.11)
My child’s speech is clear 1.78 (1.03)
My child can tell adults who do not know my child well about past events 1.95 (1.24)
My child can communicate effectively with adults who do not know my child well 2.00 (1.06)
My child is understood the first time when she/he is talking with peers 2.45 (1.43)
My child will try to carry on conversation with adults who do not know my child well 2.48 (1.54)
My child can talk about what she/he is doing with adults who do not know my child well 2.50 (1.24)
My child uses correct grammar when speaking 2.58 (1.48)
My child is confident communicating with adults who do not know my child well 2.60 (1.30)
My child can communicate independently 2.83 (1.58)
My child speaks slowly when not understood 2.88 (1.54)
My child can tell stories that make sense 2.98 (1.78)
My child uses communication to solve problems 3.03 (1.59)
My child can communicate independently with peers 3.20 (1.70)
My child can carry on conversation with peers 3.35 (1.72)
My child can be understood by peers 3.38 (1.58)
My child can communicate effectively with peers 3.40 (1.65)
My child joins in conversations with his/her peers 3.45 (1.47)
My child speaks in complete sentences 3.50 (2.11)
My child conveys his/her ideas with words 3.60 (1.71)
My child can talk to peers about what he/she is doing 3.65 (1.72)
My child is comfortable when communicating 3.68 (1.40)
My child uses language to communicate new ideas 3.83 (1.65)
My child is willing to talk to others 4.03 (1.53)
My child waits for her/his turn to talk 4.03 (1.46)
My child uses new words 4.05 (1.69)
My child can string words together 4.35 (1.94)
My child talks a lot 4.43 (1.71)
My child can communicate effectively with adults who know my child well 4.48 (1.55)
My child will ask for things from peers 4.55 (1.40)
My child makes friends easily 4.65 (1.66)
My child is included in activities with peers 4.88 (1.45)
My child can respond to questions 4.90 (1.41)
My child uses words to ask for things 5.08 (1.49)
My child interacts well with peers 5.08 (1.33)
My child is confident communicating with adults who know my child well 5.20 (1.34)
My child participates in group activities 5.25 (1.28)
My child gets along with her/his peers 5.58 (1.15)
My child will ask for things from adults she/he knows well 5.68 (1.12)
All participants 3.79 (0.65)
Boys 3.84 (0.67)
Girls 3.56 (0.53)
Younger children 3.56 (0.48)
Older children 3.97 (0.72)
Concomitant medical diagnosis 3.57 (0.65)
No concomitant medical diagnosis 3.87 (0.64)
Concomitant language deficit 3.66 (0.63)
No concomitant language deficit 3.87 (0.72)
Note: Standard deviations are in parentheses. Scoring range is 1–7 (1 ¼ not at all like my child ! 7 ¼ exactly like my child, 1 ¼ strongly
disagree ! 7 ¼ strongly agree, or 1 ¼ cannot do at all ! 7 ¼ can always do without help).

independently with peers (M ¼ 3.20, SD ¼ 1.70).
Positively, parents’ perceptions of the children’s
ability to get along with peers was high (M ¼ 5.58,
SD ¼ 1.15).
According to the SPIN responses, the two top
parental concerns were also rooted in the Body
Functions aspect of the Function and Disability
domain of the ICF. On one hand, parents reported
concerns about their children’s production of
speech sounds (M ¼ 6.78, SD ¼ 1.15), frequent
speech errors (M ¼ 6.10, SD ¼ 1.45) and ability to
be understood by others (M ¼ 2.32, SD ¼ 1.02).
Like the FOCUSß, parents also reported concerns
with interpersonal relationships particularly with
avoidance of speaking in some situations (M ¼ 5.10,
SD ¼ 1.63) and experiencing difficulty making
friends (M ¼ 4.02, SD ¼ 1.72) as shown in
Figure 2. Likewise, parents reported concerns for
the broad item: My child’s speech currently prevents
him/her from participating in daily activities, events or
social situations (M ¼ 5.00, SD ¼ 1.55). Yet, there
seems to be less of a concern regarding their
children’s desire to take part in social interactions
given the lower score for avoiding social situations
(M ¼ 3.78, SD ¼ 1.83; Figure 2). On the other
hand, parents reported that their children were
embarrassed by their speech (M ¼ 4.52,
SD ¼ 1.45), reflecting the interaction of CAS and
Personal/Contextual Factors of the ICF.
Triangulating quantitative data with the qualitative
responses may elucidate these complex, and at
times contradictory, findings.
Qualitative findings: parent experiences and
expectations
Parental apprehension regarding the psychosocial
impact of CAS for children and families was also
 Parental experiences related to CAS 575

Figure 2. Frequency distribution of parental responses for Speech Impact-Now (SPIN) items centred on social interactions and other
functional activities. Scoring range is 1 (strongly disagree) to 7 (strongly agree).

Table IV. Parent expectations and experiences for question 1: common themes and example parental responses.
Question 1 Themes
What are your expectations for speech-language therapy for your child? Intelligible to others/clear speech (21/40; 52.5%)
Intelligible to peers (9/40; 22.5%)
Intelligible to family (4/40; 10.0%)
Expressive language progress (8/20; 20.0%)
Communicate needs (2/40; 5.0%)
Improved confidence (2/40; 5.0%)
Example responses
P6: ‘‘That she is able to get to a point where she feel [sic] comfortable speaking that her speech becomes more clearer [sic] and then her
peers will be more accepting. She currently says: ‘My friends don’t understand me’. I would like to give her that ‘voice’.’’
P1: ‘‘For my son to be able to communicate his needs, wants and tell me about his day, and I can understand him.
To also be comfortable speaking to unfamiliar listeners.’’
P2: ‘‘I would love for others to be able to understand him, especially his peers.’’
P40: ‘‘To get my son to his fullest potential. Provide feedback after session on how he is doing and what I can do at home with him.’’
P29: ‘‘To be able to communicate with people in different situation [sic] than she is used to.’’
Note: Percentages will not equal 100% due to the open-ended nature of the questions.

reflected in the common themes that emerged in the
qualitative data. The themes highlighted the func-
tional and emotional impact of CAS for families
living with CAS. Themes and example parental
responses are provided for each of these items in 4,
5, 6, and 7.
First, parents reflected on their own expectations
and experiences regarding CAS. The most frequent
theme was that parents reported that their aim for
therapy was for their child to achieve the ability to be
understood by others (85.0%), with some parents
identifying specific individuals that they wished
would be better able to understand their child (i.e.
peers, family members). Additionally, parents stated
they wished for their children to improve expressive
language skills, as well as their confidence (Table
IV). For parents, the substantial emotional impact of
living with a child with CAS was found in their
reflections on personal experiences when others do
not understand their children (Table V). A total of
52.5% of parents stated that they act as their ‘‘child’s
voice’’ and 27.5% use the experience as an oppor-
tunity to educate others about CAS or to give their
child strategies to be better understood (10.0%).
Almost all parents reported a personal emotional
reaction to the child experiencing unintelligibility
(92.5%). Parents reported frustration (25.0%), sad-
ness (17.5%), and worry (10.0%), as well as
emotional reactions described with such words as
‘‘heartbreak’’ (15.0%).
576 H. L. Rusiewicz et al.

Table V. Parent expectations and experiences for question 2: common themes and example parental responses.
Question 2 Themes
Describe your experience as a parent when someone has Be the voice for the child/interpret/translate (21/40; 52.5%)
difficulty understanding your child Explain childhood apraxia of speech/educate others (11/40; 27.5%)
Feel frustrated (10/40; 25.0%)
Feel sad/sorry (7/40; 17.5%)
Feel heartbroken/worst feeling (6/40; 15.0%)
Feel worried/overprotective (4/40; 10.0%)
Give child strategies (4/40; 10.0%)
Example responses
P2: ‘‘It is the worst feeling in the world to not be able to comfort your child when they are trying to tell you why they are sad or that
someone took their toy or hit them. I feel like we play 20 questions and charades all day.’’
P4: ‘‘It breaks my heart. I have to walk around and repeat everything she says. She is a beautiful, loving, caring person,
and she deserves the world.’’
P10: ‘‘When someone has difficulty understanding my child, depending on the social situation I usually explain what childhood apraxia
of speech [sic]. If the individual can’t understand what my son is saying, I will ask him to try and use one or two word utterances so he is
better understood and encourage hand signs, gestures, noises (like choo choo for a train), etc.’’
P28: ‘‘I feel sad, emotional, and tend to be overprotective. I will, right away, translate what he is saying. I hate those situations. I hate the
way they look at him, as if he was stupid. Some of those who know of his apraxia, look at him feeling sorry for him; I hate that too.’’
Note: Percentages will not equal 100% due to the open-ended nature of the questions.

Table VI. Children’s experiences as per parent report for question 3: common themes and example parental responses.
Question 3 Themes
Please provide specific examples of how your child’s Negative effect on peer interactions (17/40; 42.5%)
speech currently prevents him/her from Withdrawal and avoidance of situations, especially if unfamiliar (13/40; 32.5%)
participating in daily activities and Affects play and play dates (11/40; 27.5%)
social situations Decreased participation in school/academic and church activities (8/40; 20.0%)
Example responses
P40: ‘‘He attends a ‘typical’ pre-school twice a week for 2 ½ hours a day. It is hard for him to make friends because the children
do not understand him. They will not play with him because they do not understand him. He gets devastated and will just shut down.’’
P2: ‘‘We had a play date and the other little boy could not understand what my son was saying. We translated several times, but after
awhile [sic] they played separately. Also at school the teacher says other kids will approach him and he will just stay quiet.
He cannot order his own meal at a restaurant because the server cannot understand him.’’
P8: ‘‘I cannot enlist him in activities at a facility outside of school like camp, library, or park district.’’
P13: ‘‘Being able to communicate needs such as being thirsty, not liking an activity, name, school, school teachers,
what he did during the day.’’
Note: Percentages will not equal 100% due to the open-ended nature of the questions.

Qualitative findings: parents’ perceptions of
the impact of CAS on their children
Next, the parents reflected on the perceived experi-
ences of their children as a function of their difficulty
with speech production. Social situations, particu-
larly those that involved peers, were most frequently
impacted by the children’s challenges with speech
production (Table VI). A total of 42.5% of parents
reported their child’s speech negatively affected
interactions with peers; with 27.5% specifically
citing that play with other children was negatively
impacted. Withdrawal in social contexts was fre-
quently noted by parents, with 32.0% of parents
reporting that the children avoid participation in
unfamiliar situations and 20.0% citing decreased
participation in familiar situations such as school
and church activities. The expressed emotions of
children related to challenges with communication
were recorded for the final qualitative item
(Table VII). Although 22 of the total number of
participants did not respond to this item, the
remaining parents reported that their child either
expressed a negative feeling when commenting on
their speech (32.5%), questioned why they
experienced difficulty with speech (5%) or expressed
their want to improve (10%).
Discussion
The objective of this study was to investigate ways in
which CAS affects the daily lives of children and
their parents by triangulating quantitative and quali-
tative data. Children with CAS experience frequent
speech sound errors, reduced intelligibility and
overall challenges with communication. As expected,
parents consistently reported via quantitative and
qualitative data that they were concerned about their
children’s ability to produce speech, to be under-
stood by others, and to communicate effectively.
However, parents also reported concerns regarding
ways in which difficulty communicating due to CAS
impacted the children’s day-to-day lives. Thus,
parental concerns noted in the both the quantitative
and qualitative data pointed to limitations for
various levels of the ICF framework, similar to past
investigations (e.g. McCormack et al., 2010, 2012).
Triangulation of the quantitative and qualitative data
indicated that children’s difficulty with communicat-
ing as a result of CAS affects both the Body
 Parental experiences related to CAS 577

Table VII. Children’s experiences as per parent report for question 4: common themes and example parental responses.
Question 4 Themes
If your child has commented on his/her difficulty with speech production, Sad (6/18; 33.3%)
describe his/her feelings Frustrated (4/18; 22.2%)
Expressed desire to be understood,
to talk, to get better (4/18; 22.2%)
Asks why (2/18; 11.1%)
Anger (2/18; 11.1%)
Example responses
P12: ‘‘He was frustrated and sad that other people did not understand him. He asked why he speaks the way he does.’’
P1: ‘‘Sad, sometimes angry and disappointing [sic].’’
P39: ‘‘He told me once that he is sad no one knows what he is saying.’’
P7: ‘‘Every so often he will say that he wishes his speech was like everyone else’s. About once a month he asks me if I think his speech has
gotten better and if I think other people are able to understand him.’’
P9: ‘‘She will tell me ‘‘No, I can’t’’ when asking her to repeat after me. She seems embarrassed at times by hiding her head or face when
she can’t pronounce something.’’
Note: Percentages will not equal 100% due to the open-ended nature of the questions.

Table VIII. Areas of concern and potential clinical recommendations: functional implications, peers/social interactions and the family unit.
Functional implications
Areas of concern -Limited independence for age
-Avoidance of and withdrawal
in unfamiliar situations
-Restricted participation in
academic and extracurricu-
lar activities
Clinical -Observe, document and sys-
recommendations tematically address child’s
behaviours and communi-
cation during points of
withdrawal and avoidance
during intervention and
other activities
-Create familiar and unfamiliar
contexts within treatment
sessions to build upon suc-
cess of communication
exchanges to then encour-
age active participation in
all activities
-Provide opportunities for
child to problem-solve, self-
cue, revise speech, support
speech with gestures, be
creative, and to overall per-
form with independence
when possible in therapy
-Assess functional outcomes in
addition to segmental
accuracy
Peers/social situations
-Impact on peer relationships
including play experiences
-Difficulty initiating new friend-
ships and communicating in
exchanges with peers
-Implement interactions and
activities with peers in all treat-
ment settings with therapeutic
scaffolds in place
-Include and prioritise functional
activities and target words to
empower children to initiate
and engage in play and other
activities with peers outside of
therapy setting
-Engage in discussion with client
and caregivers regarding spe-
cific peer-based situations and
individuals that are functionally
meaningful to focus on within
intervention
-Consider implementing peer
mediated intervention
techniques
Family involvement
-Emotional response of caregivers
-Necessary to act as child’s voice
-Responsible for educating others
-Primary individual providing
strategies outside of clinical setting
-Implement procedures aligned
with a framework of family-
centred practice
-Create digital and/or face-to-face
support networks for family
members
-Plan, implement, and assess
parent education on the under-
lying mechanism of childhood
apraxia of speech, intervention
strategies and ways to encour-
age the child to be their ‘‘own
voice’’
-Empathise with parents’ stressors
and anxiety related to caregiv-
ing and provide recommenda-
tions/resources for professional
support, if possible

Functions (e.g. reduced intelligibility and difficulty
being understood by strangers) and Activities and
Participation (e.g. avoidance of speaking and diffi-
culty with peer interactions) components of the ICF
Functioning and Disability domain. Likewise, both
the Personal Factors (e.g. feelings of embarrassment,
frustration, stress) and the Environmental Factors
(e.g. reliance of the parent to ‘‘interpret’’ for the
child and educate others about CAS) components of
the Contextual Factors domain were influenced by
living with CAS.
This study provides information that may be
useful when including a client and their family in
creating person-centred functional goals for the
intervention of SSDs. Person-centred functional
goals consider all aspects of the ICF framework and
are ‘‘identified by the child, in partnership with the
clinician and family that allow participation in
meaningful activities and roles’’ (ASHA, n.d., para.
1). The study at-hand specifically highlights three
areas of concern to be considered in person-centred
intervention for children with CAS: functional
impact on daily activities, importance of peers and
social interactions, and involvement of the family unit
as elaborated upon in Table VIII. Potential clinical
implications and example ways to address these three
areas of concern in the clinical management of CAS
are proposed in Table VIII and explored below.
578 H. L. Rusiewicz et al.
Functional implications for day-to-day
activities
Parents reported that their children’s independence
and social interactions were negatively impacted by
their struggles with speech production and commu-
nication. At this time, it is well established and
accepted that an individual’s communication dis-
order will likely affect other ICF domains outside
essential body functions (e.g. Ma et al., 2008;
McCormack et al., 2010). What is far less con-
sidered are the ways in which individuals with
communication disorders, including CAS, live with
these challenges, how clinicians can address these
challenges explicitly during intervention, and how
change in function domains can be measured. The
qualitative data from the present study pointed to
appeals from the parents to consider ways to increase
the children’s independence and ability to enter and
engage in social, academic, extracurricular activities.
Although Campbell (1997) advocated for embracing
the concept of functional outcomes (i.e. changes that
impact an individual in daily communication and
interactions) almost 20 years ago, few empirical
investigations documenting functional outcomes for
children with SSDs, including CAS, currently exist
(e.g. Thomas-Stonell, Oddson, Robertson, &
Rosenbaum, 2009; Washington et al., 2012). Both
empirical and clinical work in the area of SSDs will
benefit from the utilisation of tools such as the
FOCUSß and systematic interviews with clients,
caregivers, educators, etc. at various times in the
intervention process to assure that the proper func-
tional goals are set at that a child’s attainment of the
functional outcomes is optimised.
Functional implications for interactions
with peers
Similar to past studies, the current data indicated
that social situations are often impacted by an
individual’s SSD (e.g. Hitchcock, et al. 2015;
McCormack et al., 2010, 2012; McLeod et al.,
2013). In particular, peer interactions and unfamil-
iar social situations were reported as especially
challenging for these children with CAS. The
consistent concern regarding children’s limited
engagement in social activities and reduced inter-
action with peers point to the need to incorporate
peers and functional social situations into interven-
tion plans. Integrating peers in therapy may occur
more naturally in some settings (e.g. classrooms) or
require the creation of new experiences and pro-
grammes in others (e.g. outpatient facilities).
Considering ways to include peers and address
social skills in speech–language therapy is not a new
concept (e.g. Flynn & Healy, 2012). For instance,
the study of peer-mediated intervention is frequently
employed for children with autism spectrum dis-
order (ASD), especially within inclusive education
settings (see Watkins et al., 2015 for a review).
Even though the aetiology and characteristics of
communication disorder are different for children
with CAS compared with children with an ASD, the
benefits of a planned, systematic implementation of
peer-based situations with therapeutic support may
be shared. Stay, Play, Talk (English, Shafer,
Goldstein, & Kaczmerek, 1997) is a relatively
straight-forward approach to peer-mediated inter-
vention for children with ASD. The application of a
peer-mediated intervention procedure like Stay (i.e.
cues for the peer to remain with your assigned
‘‘buddy’’ with a communication disorder), Play (i.e.
interact and play with your ‘‘buddy’’) and Talk (i.e.
talk to you buddy about what you are doing
together) may result in increased comfort and
communication opportunities for children with
CAS in peer-based social situations.
Functional implications for the family unit
Parents of children with CAS serve many roles.
Parents reported that they are their children’s
‘‘interpreters’’ and comforters, as well as laypeople’s
educators. Parents also reported strong personal
emotions regarding their children’s speech disorders.
Although family and familiar conversational partners
may offer places of comfort and increased commu-
nicative success for the child (e.g. McLeod et al.,
2013), the child’s challenges with communication
are often prominent stressors for the parent and
family. Modifying a family-focussed framework, like
that employed by Yaruss, Coleman, & Hammer
(2006) with young children who stutter and their
families, may be beneficial for this children with
CAS and their families. Employing a family-centred
approach and family-based/home practice as
reflected in Yaruss et al.’s (2006) procedures and
also advocated by McCormack et al. (2010), will
certainly provide an opportunity to support the
ability of children with CAS to improve their spoken
language skills and intelligibility. Furthermore, such
an approach may offer the opportunity to empower,
educate, and empathise with parents raising children
with CAS, as called for by Faranelli Allen and Babin
(2013). On the contrary, it is important to gauge
parents’ willingness and desire to take active roles in
therapy with their children with CAS. For instance,
Pappas, McAllister, and McLeod (2016) discussed a
frequent theme of wanting the therapist to remain
the ‘‘expert’’ and for the parent to be removed from
the therapy process. However, it is also noteworthy
that Pappas et al. explored parents’ perceptions and
experiences only for children with mild to moderate
SSDs.
Limitations
There are a number of limitations that restrict the
interpretation of these results. First, assessment data
were not available for the children with CAS in this

study. Thus, it is difficult to have a clear under-
standing of the speech, language, motor and behav-
ioural skills of the children in this study given the
lack of standardised assessment and direct observa-
tion of their speech sound and communication skills.
Future investigations should also include prospect-
ive, thorough evaluation procedures to assure the
diagnostic classification of CAS and more fully
describe characteristics of speech motor planning.
It is also challenging to parse the impact of CAS
completely from the other concomitant deficits these
children exhibit, although the open-ended questions
were posed in such a way to focus on speech and
speech intelligibility. The non-significant differences
of the FOCUSß score as a function of concomitant
medical diagnosis and language deficit further
indicated that the parents were reflecting on the
specific impact of their children’s SSD during their
responses. However, future investigations should
seek to examine the unique psychosocial impact of
specific speech motor deficits (e.g. dysarthria, CAS)
separate from cognitive-linguistic deficits and other
medical concerns as best as possible. Although the
difference between FOCUSß scores for younger and
older children only approached significance, it can
certainly be argued that future investigations should
also constrain the age of those sampled to delve in
more deeply to the concerns and experiences of
preschoolers, school-aged children, adolescents and
adults with persisting CAS. Likewise, the FOCUSß
incorporates questions relevant for children ages six
and under. The use of a similar tool created for older
children and/or adolescents would further
strengthen the methodologies of future studies.
Although parents’ responses to the qualitative item
regarding ways in which their child’s speech prevents
participation in activities yielded key themes to
consider, it is important to note that the wording
of this question may have led the parents to more
negative responses. Also, the methodology did not
allow for in-depth information about the parents or
follow-up questions. Additional follow up would
have been particularly helpful for the final qualitative
question in which only 45% of the parents offered a
response. Finally, the experiences and perceptions of
parents were sampled at a single time point. The
weight of a particular concern or experience is fluid
and likely to change due to any number of reasons,
including speech–language intervention.
Conclusion
Parents reported that though they were concerned
about their children’s ability to produce intelligible
speech, they were also concerned with the impact of
CAS on their children’s daily activities and partici-
pation in activities, especially interactions with peers
and new conversational partners. Parents also
reported the impact of CAS on themselves, such as
the need to be the ‘‘children’s voice’’ and their
Parental experiences related to CAS 579
personal feelings of what it is like for them when
their children are not understood. These data
provided additional support for including the per-
spectives of clients with SSDs and their families in
clinical decision making, similar to McCormack
et al. (2010) and Pappas et al. (2016). Continued
empirical work and the creation of standardised tools
(e.g. McCormack et al., 2010; Thomas-Stonell
et al., 2010) that assess the functional impact of
communication and swallowing disorders, including
CAS, is fundamentally necessary. Unifying patient-
centred care with evolving empirical data will offer
insight into ways to improve professional-family-
peer–client interactions and optimise functional
outcomes for individuals with CAS and other SSDs.
Acknowledgments
We extend our gratitude to the parents who
participated in this study and to Katie
Cunningham, Cara Koshut, Sarah Leech, and Paul
DeLisio for their assistance in this project.
Declaration of interest
There are no potential conflicts of interest for any of
the authors.
This work was supported in part by a Childhood
Apraxia of Speech Association of North American
Research Grant.
ORCID
Heather Leavy Rusiewicz http://orcid.org/0000-
0001-8853-088X
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