Literacy environments for children with Down syndrome: What’s happening at home?
Anne van Bysterveldt, Gail Gillon and Susan Foster-Cohen
This descriptive study investigated the home literacy environment of New Zealand children with Down syndrome. Participants were 85 children with Down syndrome enrolled in predominantly mainstream school programmes in years 1-8, who were aged between 5;4 (y; m) and 14;11 (M = 8;11, SD = 2;6), comprising an estimated 15% of children with Down syndrome in New Zealand primary education. Survey data via questionnaire (modelled on Boudreau), was gathered from participant's parents and targeted three broad themes including parents’ priorities regarding literacy for their child with Down syndrome, ways in which the HLE of children with Down syndrome supports literacy development and the ways children with Down syndrome participate in literacy interactions. Results were analysed for all participants and by age group which are presented when group differences were apparent. Results indicated the majority of parents are involved in regular literacy interactions with their child, although more with reading than with writing. Many children played an active role in joint reading activities, interacting with both pictures and text, although more with pictures than with text. Children were reported to use a wide range of writing materials. Parents also reported other ways in which they facilitated literacy development including active teaching, language games and library visits. Clinical implications for parents and professionals working with children with Down syndrome are discussed with reference to relationships between HLE variables and positive literacy outcomes and provide support for the development of targeted interventions specifically aimed at facilitating literacy with this population.
van Bysterveldt AK, Gillon G, Foster-Cohen S. Literacy environments for children with Down syndrome: What’s happening at home?. Down Syndrome Research and Practice. 2010;12(2);98-102.
Adopting a sociocultural approach to the acquisition of literacy has
resulted in a shift in thinking from a 'reading readiness' model based on
maturational level or the acquisition of a prerequisite set of skills[3,4],
to an 'emergent literacy' model which
sees literacy as emerging from meaningful and functional interactions with
print. This approach emphasises the role of daily literacy based experiences
and interaction with adults as well as the childâ€™s active role in becoming
literate. Thus, while children may not receive formal reading instruction
until they start school, the process by which they learn to read can build
on a range of earlier literacy experiences.
There is a considerable body of evidence
that suggests that the home literacy environment
(HLE) is key to a childâ€™s emergent literacy[7-9],
and that the richness of that environment is
determined by factors such as frequency of exposure
to, and engagement with, literacy items including
joint and independent reading; the importance placed
on literacy in the home; socioeconomic status; and
maternal education level. Emergent literacy
skills, the precursors to conventional reading and
writing skills, are generally accepted to include
alphabet knowledge, concepts of print, phonological
awareness, and vocabulary. Frijters, Barron and
Brunello found strong relationships between
childrenâ€™s home literacy and literacy interest
measures and their letter knowledge, phonological
awareness and vocabulary.
Joint book reading appears to be a key feature of
the HLE, positively affecting the development of
emergent literacy skills and accounting for
approximately 8% of the variance in reading
achievement[12-14]. Additionally, shared story
reading which targets the development of specific
skills is successful in increasing childrenâ€™s print
awareness[15,16], facilitating emergent phoneme
awareness and letter knowledge[17,18]
oral language skills. These findings are
consistent with those of SÃ©nÃ©chal and colleagues[8,19,20] who investigated the contributions of
explicit teaching of reading and print (a formal literacy activity), and
joint story reading (an informal literacy activity), to oral and written
language development in young children. In a series of studies SÃ©nÃ©chal and
found childrenâ€™s exposure to story reading was
predictive of their oral language development but not their written language
skills. By contrast, parentâ€™s reported teaching behaviours were predictive
of childrenâ€™s written language skills but not their oral language
development. As no correlation was found between the two measures of story
exposure and reported teaching behaviours, participants were grouped across
the four possible combinati8,ons of the two measures: high teach-high read;
high teach-low read; low teach-high read; and low teach-low read, and
reading outcomes over time were compared. Children who had the advantage of
both high levels of book reading and of parent teaching outperformed the
rest of their peers. The findings suggested that parent teaching will effect
early decoding and that story exposure will have a continued affect on
developing literacy once these early skills are mastered.
Many parents report teaching letter knowledge to their child, with such
instruction found to be predictive of later reading outcomes[19,21-23]. A
positive relationship between letter knowledge and phonological awareness is
also described, with better literacy outcomes demonstrated by
interventions which explicitly linked phonological activities to letter
knowledge. Childrenâ€™s knowledge of concepts of print is also associated
with better reading outcomes.
In their longitudinal New Zealand based study of reading Tunmer, Chapman
and Prochnow found a strong relationship between early literacy skills
and later reading outcomes with nearly 50% of the variance in later reading
outcomes attributable to what they termed literate cultural capital at
school entry. Literate cultural capital covers a range of HLE features
including phonological awareness, letter knowledge, grammatical sensitivity
and vocabulary. Limited literate cultural capital can prevent children from
accessing the literacy instruction practices of the classroom.
In general, New Zealand home environments are rated very favourably
internationally in terms of facilitating childrenâ€™s early literacy
development. One of the findings from the Progress in International Reading
Literacy Study (PIRLS, 2005/2006) indicated that New Zealand parents
were more likely to engage their child as a preschooler in literacy related
activities compared to the other 39 countries which participated in the
study (as measured by parental report). However, no data related
specifically to children with special needs or children with Down syndrome
was collected in this study.
The Home Literacy Environments of children with Down syndrome
While the literature around the HLE is reasonably robust for typically
developing, far less is known about the HLE of children with disabilities
and no previous investigations have been conducted in this area for New
Zealand children with Down syndrome. Researchers suggest the HLE of children
with disabilities may not be as rich and supportive of literacy development
as that provided to typically developing children. Fitzgerald, Roberts,
Pierce and Schuele investigated the HLE of 3 preschool children with
Down syndrome. They found that although the homes contained numerous books
and literacy based materials, when compared with the results of Teale
for typically developing children, the literacy-based interactions between
the parents and children with Down syndrome were fewer and were largely made
up of story reading events. Moreover, the events that did occur tended to be
presented in isolated and defined occasions rather than occurring in
Other comparisons present a similar picture, with parents in the van
Bysterveldt et al. study reportedly reading to their preschool child
with Down syndrome for approximately 15 minutes per day, compared to parents
in the Rideout, Vandewater and Wartella
study who reported they spent
about 40 minutes per day reading with their typically developing preschool
Marvin and Mirenda also found the parents of children with
disabilities had much lower literacy expectations and priorities, and
engaged in significantly fewer literacy related experiences than those of
typically developing children, and Marvin found that children with
multiple disabilities had poorer HLEs than those with single disabilities.
However, Marvin cautioned that there is a need for further investigation
as to the levels and type of disability and HLE. This sentiment is echoed by Weikle and Hadadian
in their review of the literature pertaining to
literacy environments and development for children with disabilities. The
reviewers highlighted the need for research into emergent literacy and the
role of the home literacy environment for children with disabilities.
Ricci recently compared parent beliefs about reading and the HLE of
20 preschool and 17 school-aged children with Down syndrome with 18
typically developing children, matched for chronological age with the
younger children and for mental age with the older children. Findings
suggested parentsâ€™ beliefs about reading and provision of literacy
experiences for children with Down syndrome were more influenced by the
childâ€™s mental age than their chronological age, which suggests they may be
more aligned with the needs of their children than many educational
programmes, which are predicated on chronological age. If children with Down
syndrome can acquire many of the underlying skills for reading, but on a
later schedule than their classmates (as Ricciâ€™s
study showed), they may
benefit from both earlier and longer exposure to formal literacy experiences
than they current appear to receive. Ironically, the younger children with
Down syndrome in Ricciâ€™s study were not assessed on measures of emergent
literacy because it was assumed the tasks would be too cognitively
demanding. Other studies, however, have demonstrated preschool children with
Down syndrome have measurable emergent literacy skills and are capable of
acquiring these skills before they begin school[17,36].
Trenholm and Mirenda investigated the home and community literacy
experiences of individuals with Down syndrome. They collected survey data
from the parents/caregivers of 224 Canadian individuals with Down syndrome
ranging in age from 3 to 42 years. The 105 who were aged between 5 and 13
years form a group comparable in age to the participants in the current
study. The parents reported on the literacy experiences of the participants
in four main areas: goals, priorities and interest placed on literacy
achievement, their childâ€™s abilities and experiences with reading and with
writing, and the parentsâ€™ perception of barriers to literacy development.
Although no parents ranked learning to read or write as their number one
priority for their child, learning to read was identified by over half the
respondents as being as one of the three highest priorities for their child
aged 5-13 (56% of parents of 5-9 year olds and 62% of parents of 9-13 year
olds). However, a lesser priority was given to learning to write. The
highest ranking for learning to write was again demonstrated by parents of
participants aged 5-13, rated as one of the top three priorities for their
child by 18% of parents of 5-9 year olds and 24% of parents of 9-13 year
olds. The children demonstrated high levels of interest in acquiring
literacy skills with over 70% of 5-13 year olds reported to be "somewhat" or
"very" interested in learning to read and to write, and over 80% to be
interested in drawing.
Approximately half of the parents in the Trenholm and Mirenda
indicated they believed the prime age for literacy development in children
with Down syndrome was between 6 and 12 years old i.e., from the beginning
of compulsory schooling. This finding is consistent with the
Purcell-Gates descriptive study, which saw parents increase formal and
informal literacy interactions with their child in response to their child
entering formal schooling. This suggests they share the predominant â€˜reading
readinessâ€™ mind-set of many educational systems. An emergent literacy
approach, on the other hand, would encourage parents to prioritise and
provide the environment for literacy based experiences and interactions for
their child from an earlier age, as well as emphasise the active role of the
child in the acquisition of literacy.
It is important to expand our understanding of the HLE of children with
Down syndrome in order to inform parents and professionals of relationships
between HLE variables and positive literacy outcomes for children with Down
syndrome and indicate ways to enhance their HLEs. Investigations can provide
evidence to support the development of targeted interventions specifically
aimed at facilitating literacy with this population.
The current study adopted an emergent literacy framework to explore key
features of the HLE of school-aged children with Down syndrome in New
Zealand across three broad themes:
- What are parentsâ€™ priorities regarding literacy for their
child with Down syndrome?
- How does the HLE of children with Down syndrome support literacy
i) What are the frequency and duration of literacy interactions?
ii) How do parents facilitate and encourage their childâ€™s literacy
- How do children with Down syndrome participate in literacy
This descriptive study reports survey data gathered via questionnaire on
the home literacy environment of children with Down syndrome, completed by
parents of participants.
A Developing Literacy Questionnaire was modelled on and adapted from the
Early Literacy Parent Questionnaire by Boudreau
with permission from the
author. It was piloted with six parents of children with Down syndrome and
modified in light of their feedback. The final version consisted of 49
questions under the following headings: Educational Setting; Reading
Books; Response to Print; Language Awareness; Interest in Letters; Writing
and Television/Computer a. Respondents were also invited to
make additional comments at the end of the questionnaire. The questions
encompassed a number of broad themes including frequency and duration of
literacy interactions, other ways parents support and facilitate literacy,
parentsâ€™ priorities for their children at school, and the childâ€™s literacy
skills. The majority of the items called for binary responses, fill in the
blanks or Likert scalar responses that could be quantified. Approximately
20% called for more qualitative descriptive responses. For example,
following a question which asked parents to indicate how often they helped
their child with their reading, they were asked about the sort of help they
gave. Other descriptive questions which were overtly designed to encourage a
positive approach to the activity of filling in the questionnaire, were
included in response to feedback from the pilot questionnaire, such as "What
are some of your childâ€™s favourite books?" and "What do you enjoy most about
reading with your child?". For the 30 questions assessed using a Likert
scale and appropriate for all parents to answer, Chronbachâ€™s alpha equalled
0.921. These results are based on the 63% of parents who responded to all 30
questions. However, generalisation to the whole sample is appropriate as no
pattern was observed to missing responses and response rates were over 92%
for all 30 questions included in the analysis. (A complementary survey
completed by participantsâ€™ teachers was also developed and is reported
All eligible mainstream and special primary schools in New Zealand
(approximately 2,060) were approached via a letter of introduction inviting
those with a child with Down syndrome on their school roll to participate in
the survey. Initial expressions of interest in the study were received from
responding schools on behalf of 169 children. Schools were sent project
information sheets, surveys and consent forms to distribute to parents and
teachers and were provided with a stamped self-addressed envelope to return
the surveys to the lead researcher. Sixty-five schools subsequently declined
to participate. Reasons given for non-participation included school
involvement in other projects such as professional development or
educational review, teacherâ€™s workload, teacher and parent health, and
familiesâ€™ domestic circumstances. A further 16 failed to return the survey.
Completed surveys were received from parents for 85 children equating to a
return rate of 50%. This cohort represents an estimated 15% of the children
with Down syndrome in New Zealand primary education (years 1- 8)
The participants were 85 children with Down syndrome (38 girls and 47
boys) aged between 5;4 (y;m) and 14;11 (M = 8;11, SD = 2;6). Criteria for
inclusion were a diagnosis of Down syndrome and enrolment in the school
programme in years 1-8 (for children aged 5 to 14). Given that fluctuating
or compromised health status is prevalent in children with Down syndrome,
children were not excluded on the basis of significant ongoing medical
concerns, hearing or visual impairment or a diagnosis of additional
Participantsâ€™ mothers/stepmothers made up nearly 90% of respondents.
Fathers completed almost 5% of the questionnaires with a further 3.5%
completed jointly by parents. The remaining questionnaires were completed by
the participantsâ€™ legal guardians.
The 85 participants came from 55 mainstream schools (64 participants) and
9 special schools (21 participants) based throughout rural and metropolitan
New Zealand c. The schools represented a range of socio-economic
levels as indicated by the New Zealand Ministry of Educationâ€™s decile
system. A schoolâ€™s decile is based on the socio-economic standing of the
community from which a school draws its pupils and is based on national
census data. Decile 1 schools have the highest proportion of students from
low socioeconomic communities with decile 10 schools having the lowest
proportion of students from low socioeconomic communities. Twenty percent of
participants attended low decile schools (decile 1-3), 47% attended middle
decile schools (decile 4-7) and 33% attended high decile schools (decile
8-10). Analysis of decile of schools that declined to participate or who
failed to return the survey revealed 13% were low decile schools, 68% were
middle decile schools, and 19% were high decile schools.
Data analysis and reliability
All coding and data entry was checked by the lead researcher.
Additionally an independent researcher coded a randomly selected 20% of the
survey returns and checked reliability of data entry and survey
interpretation with scores recorded by the lead researcher. Inter-rater
reliability was 99.8% with any discrepancies resolved through discussion.
The results presented below represent analyses by descriptive and
non-parametric statistics of both the sample as a whole and divided into two
age groups: Group 1 (5-8 years; N = 48, M = 7;0, SD = 12.5 m) and Group 2 (9-14
years; N = 37, M = 11;2, SD = 19.2m). The division between the groups was made on
the basis that participants aged 5-8 years were typically in classrooms
where formal literacy instruction occurred on a regular basis, whereas
participants aged 9-14 years were typically in classrooms where the focus
was on 'reading for learning' as opposed to learning to read.
Results are presented within three broad themes, for all participants and
by age group when group differences are apparent.
Parentsâ€™ priorities regarding literacy for their child
When asked to report on how important they rated classroom reading
instruction for their child in comparison to other classroom activities, 79%
of Group 1 parents and 86.4% of Group 2 parents selected classroom reading
instruction as either their first or second most important activity.
Similarly, when asked to rank skills in order of importance for children to
learn at school, an equal proportion of parents in each group (43.2% Group
1; 43.7% Group 2) placed reading in the first position and another
approximately 40% in both groups placed it in second ranked position.
Parents who rated social skills as the most important area for their child
to learn at school (48.6% Group 1; 59.3% Group 2), typically ranked reading
and writing in second and third place respectively. Despite the high
rankings parents gave to literacy learning at school, not all parents
participated in regular discussion about their childâ€™s literacy with the
teacher or teacher aide. The pattern of response was similar between groups
with 63.4 % of Group 1 parents and 74.2% of Group 2 parents reporting they
discussed issues relating to their childâ€™s literacy at least monthly.
A key measure of a rich HLE is that literacy activities are a source of
interest and pleasure for both parent and child. A number of questions in
the survey addressed these issues. Notwithstanding their lack of engagement
with their childâ€™s teacher about their childâ€™s learning to read, parents
were very clear about the value of reading at home. When asked what they
most enjoyed about reading with their child, parentsâ€™ responses revealed two
main themes; 1) social and emotional reasons and 2) seeing their childâ€™s
achievement and development. Time spent reading together and seeing their
childâ€™s interest and engagement books was identified by 58% of parents as
being what they most enjoyed about reading with their child. The remaining
42% of parents reported their childâ€™s speech and language or reading
development gave them most pleasure when reading together with their child.
One measure of the emphasis on literacy in the home is the number of books
the family owns. The mean and median number of books owned was 50-75 for all
children and was 50-75 and 75-100 for parents, with 10% percent of parents
and 5% of children owning fewer than ten books, and 42% of parents and 30%
of children owning over 100 books. The 5% of children with the fewest books
were all in the younger age group (5-8 years). Eighty-two percent of
families reported they received published materials including newspapers and
magazines. These numbers are virtually identical to those reported in the
PIRLS report which revealed New Zealand 4th grade children had high
numbers of childrenâ€™s book in their homes (36% owned 100+ books, 4% owned
The majority of children in the study were introduced to books at a young
age, with 66% of parents reporting they began reading together when their
child was a baby (i.e. <12 months old) and 11% when their child was 1 year
old. However, 22% of children were reported to be aged between 2 and 5 years
when their parents began reading with them. Sixty-eight percent of parents
reported they had a designated time for joint reading activities with the
most commonly reported times being after school and before bedtime.
HLE support for literacy development
Frequency and duration of literacy activities: Reading
When asked about the frequency and duration of reading to their child
(parent reads) and with their child (child reads), over 90% of parents
reported they read to and/or with their child. Figure 1 shows 48% of these
parents were reading together with their child daily and over 10% were
reading several times per day. Reading times per week averaged 3.8 hours (SD
= 3.02 hours) and ranged from ten minutes to fourteen hours. These figures
combine reading for pleasure and reading homework.
Figure 1 |
Frequency of joint reading
Home reading practice was a regular occurrence for almost all
participants. Eighty percent of all participants brought books home from
school for home reading practice at least weekly, with 48% engaged daily.
The median group score for frequency of home reading practice was higher in
Group 1 (younger children) than in Group 2 with differences approaching the
level of significance [Mann Whitney U = 1089.50, p = 0.057]. Although 10.4%
of Group 1 children (5-8 year olds) were reported to never have home reading
practice, a higher proportion of this group had home reading practice on a
regular basis. Eighty-five percent of Group 1 children had home reading
practice at least weekly and 58.3% did so daily. By contrast, all children
in Group 2 (9-4 year olds) were reported to have home reading practice
although for 27% of them this was â€˜occasionalâ€™ or â€˜rareâ€™. Seventy-two
percent of Group 2 children had home reading practice at least weekly and
35.1% did so daily. The frequency of reading and writing homework is
presented in Figure 2. Overall, parents reported high levels of reading
support for their child with 96% reporting they helped their child with
reading, and 62.2% providing help on a daily basis.
Figure 2 | Frequency of allocated reading and
writing homework for participants by group
Parent support and facilitation of literacy acquisition: Reading
When asked about the kind of help with reading they gave their children,
parentsâ€™ responses fell into eight main categories, with some parents
reporting using several of the techniques shown in Table 1 to help their
child. Many more parents of older children reported using techniques to keep
their child focused. More parents of older children also reported reading to
their child or telling them the word when reading, whereas more parents of
younger children reported using techniques where they read together.
||Percentage of Group 1
||Percentage of Group 2
|Tell child the word/read to the child
|Keep focused, encourage and praise
|Point to words
|Use picture and sign cues
|Model and support speech clarity and
|Sight words/flash cards
Table 1 | Percentage of respondents
using techniques to help their child with reading at
The parentsâ€™ responses revealed that most were actively involved in
teaching their child letter names and sounds on a regular basis, usually
during story reading activities. Sixty-seven percent of Group 1 parents and
57.3% of Group 2 parents reported teaching letter names and sounds when
reading together. Correlational analysis, however, demonstrated no
relationship between reported measures of frequency of joint reading and the
practice of teaching letter names and sounds during joint reading (r = 0.04,
p = 0.75). Over half of all parents (58%) also commonly incorporated letter
knowledge instruction into other activities with their child.
Over half of all parents reported drawing their childâ€™s attention to
environmental print such as restaurant and shop names and signs, and street
signs at least weekly. Almost 21% of Group 1 parents reported playing
language games regularly with their children compared to 32.2% of Group 2
parents. The majority of children were also reported to be regular library
users, albeit facilitated by their parents as befits their age. More library
activity was reported for older children with 58.3% of Group 1 children and
71.3% of Group 2 children visiting the library at least monthly. One quarter
of the younger children were reported to never visit the library compared to
5.7% of older children.
With respect to television, video and DVD viewing habits, parentsâ€™
responses indicated wide variation in total viewing times ranging from 0.56
hours to 33.5 hours per week. Mean total viewing time for Group 1 children
was 14.1 hours per week (SD = 7.8, range = 0.81 â€“ 31.5), that is 2.01 hours
per day. Mean total viewing time for Group 2 children was 14.9 hours per
week (SD = 7.2, range = 3.1 â€“ 33.5), that is 2.12 hours per day. The most
frequently watched television programmes, reported by over 90% of parents,
were cartoons. Many parents reported high levels of video and DVD ownership
(for example 30, 100, 200) with over 10% of respondents reporting they had
"too many to name". Most frequently reported titles included cartoon movies
and interactive musical shows. Increased total viewing hours was moderately
correlated with age for children in Group 2 (r = 0.46, p = 0.005) with an
estimated increase in total viewing time of 0.18 hours per month of age
(2.16 hours per year of age).
When asked whether and how often their child drew, wrote (or
attempted to write) letters of the alphabet, words or stories, parents
reported drawing as the most common activity with 50% of both groups drawing
daily. Group differences in favour of Group 2 were apparent on reported
frequency of writing letters [Mann-Whitney U = 807.00, p = 0.021], words
[Mann-Whitney U = 398.00, p < 0.001], and stories [Mann-Whitney U = 525.00,
p = 0.006]. Story writing was the least common daily activity with 15.2% of
Group 1 children and 22.8% of Group 2 children writing, or attempting to
write, stories every day. The majority of Group 1 children (67.3%) and 35.2%
of Group 2 children had yet to write or attempt to write stories and a
number of children in Group 1 were reported to be not yet engaged in any
drawing or writing. The percentage of each group engaged in each activity
and the frequency of that activity decreased as the complexity of the
activity increased (see Table 2).
Table 2 | Percentage of children engaged in specific writing tasks
It is worth noting that a question about tools
children used for writing revealed a rich array of
writing implements and surfaces was available to all
children in the study including a range of pens,
pencils, crayons, chalk, paint, paper, and
Parents reported that written homework tasks were less common than home
reading practice. Half of all children were reported to â€˜neverâ€™ have written
tasks for homework, with 24% having written tasks for homework â€˜weeklyâ€™ or
more frequently, and 11% engaged in written homework tasks â€˜dailyâ€™.
Significant group differences were apparent [Mann Whitney U = 475.00, p =
0.004], with Group 2 children more likely to have regular written homework
tasks (see Figure 2).
Not surprisingly given the lack of writing homework being assigned, 66%
of parents reported they â€˜neverâ€™ or â€˜occasionallyâ€™ helped their children
with writing; 4% provided help on a â€˜dailyâ€™ basis. Many parents reported
using several techniques to help their child with writing, with 40.5%
writing words for their child to copy or trace and 32.4% helping with
letters and spelling. Hand over hand support was provided by 24.3% of
parents and help with topic discussion provided by 8.1% of parents. Nearly
3% of parents reported providing resources to help with writing. Analysis of
the data for all participants revealed small to moderate correlations
between the frequency of homework literacy tasks and the frequency of
parentsâ€™ provision of help (r = 0.57, p< 0.0001 for reading and
r = 0.32, p
= 0.006 for writing). However, in the case of writing, the correlation was
substantially influenced by the large number of children, particularly Group
1 children, receiving no written homework and no help with writing. When
data from Group 2 children (who were more likely to have regular written
homework tasks) were analysed separately, no relationship was evident
between writing homework and writing help for children in Group 2 (r = 0.29,
p = 0.12).
Approximately half of all New Zealand households have a computer, but
home computer ownership was much higher than the national average for survey
respondents, with 88.2% of parents reporting they owned a home computer and
81.1% of these reporting their child with Down syndrome had access to it,
equating to 71.7% of all children in the study having access to a home
computer. Active computer use was more common for older children with 91.1%
of Group 2 children compared to 73% of Group 1 children reported to use
their home computer. As well as using drawing and word processing
programmes, children predominantly played 'educational' games including
alphabet and phonics based games, as well as interactive reading, spelling,
numeracy and problem solving games. Children were reported to spend an
average of 2.51 hours per week on the computer (SD = 1.86, range 0.5 â€“ 8)
which equates to just over 20 minutes per day. There were no age group or
An important factor influencing the facilitation and encouragement
of literacy is parentsâ€™ awareness of, and ability to cope with, the
inevitable challenges. Parents identified a number of challenges associated
with reading and writing for their child, with most parents articulating
several challenges. Physical and physiological challenges of fine motor
skills and control, and vision and hearing were reported by 36.7% and 8.8%
of parents respectively. Challenges associated with frustration and
behaviour, and attention and motivation were reported by 36.6% of parents
and 32.3% reported challenges associated with memory and learning. Speech
and language challenges were reported by 23.5% of parents and 8.8% reported
a lack of availability of suitable books. Parents also reported ways they
had found to manage these challenges with the majority focusing on
addressing the areas of fine motor control and skills, frustration and
behaviour, and attention and motivation. Thicker pens, white board markers,
magnetic letters and slope boards were offered as adaptations to traditional
writing equipment, with computer use suggested as an alternative. Parents
emphasised the need for repetition and practice in acquiring reading and
writing skills and suggested enlisting the support of family members and
teaching support staff to promote this. Specific teaching practices were
also identified including visual cues and supports and verbal techniques
such as questioning and commenting. Praise and incentives were identified as
important in maintaining and promoting childrenâ€™s attention and motivation,
along with providing the child with choices from a variety of literacy based
The participation of the child during literacy interactions
As reported earlier, seeing their childâ€™s interest in books was a source
of pleasure for many parents. When asked to rank their childrenâ€™s interest
in books compared to other activities on a six point scale from least
favourite (score of 1) to most favourite (score of 6), Group 1 parents more
often picked books as a preferred interest than parents of Group 2 children.
The median group score was significantly higher in Group 1 (younger
children) than in Group 2 [Mann Whitney U = 1103.00, p = 0.03].
Despite this reported high level of interest in books however, as
Table 3 shows, when asked to report on their childâ€™s engagement with the pictures,
characters and events in a familiar book when reading together, parents
reported half of all children (54.1% Group 1; 45.9% Group 2), were â€˜not yetâ€™
or â€˜rarelyâ€™ asking about events or characters in the story. Analysis
revealed no group differences in the reported frequency of commenting on
pictures [Mann-Whitney U = 808.5, p = 0.57], asking about pictures
[Mann-Whitney U = 742.0, p = 0.24], or asking about characters or events
[Mann-Whitney U = 825.5, p = 0.56] during story reading. Behaviours engaged
in by more than 25% of each group are highlighted in boldface type.
Comments on pictures
Asks about pictures
Asks about characters or
|Has but rarely
|Often/usually during story
Table 3 | Percentage of children engaged in
commenting and questioning behaviours
A similar picture emerged for engagement with text. Parents were asked to
report on their childâ€™s engagement with the story line or text when reading
familiar books together and whether their child participated in the story
telling by saying or reading the next word or line. Many children took a
passive role (i.e. â€˜not yetâ€™ or â€˜rarelyâ€™ demonstrating the reported
behaviours) during joint story reading, with 46.5% of Group 1 and 30.3% of
Group 2 not yet or rarely â€˜sayingâ€™ the next word or line and 63.0% of Group
1 and 37.8% of Group 2 not yet or rarely â€˜readingâ€™ the next word or line.
Group differences approached the level of significance ([Mann-Whitney U =
550.00, p = 0.08] for â€˜sayingâ€™ and [Mann-Whitney U = 650.50, p = 0.053] for
â€˜readingâ€™), however, although fewer Group 2 children took a passive role
compared to their younger peers, a large number were still reported to never
or rarely participate in the story telling activity.
When asked about their childrenâ€™s reading abilities, all parents of Group
2 children reported their child was reliably able to identify her or his own
name, compared to 62.5% of Group 1 children, with a further 18.7% of Group 1
able to identify their own name â€˜usuallyâ€™, 14.5% â€˜oftenâ€™ and 4.1%
Similar group differences were apparent on other reading measures.
Fifty-seven percent of Group 1 children and 68.7% of Group 2 children were
reported to pretend to read by sitting with the book and producing speech
similar to the actual story, at least occasionally during joint story
reading activities, and nearly half of these children (comprising 25.7% of
Group 1 and 31.2% of Group 2) did so often or usually during the story.
Childrenâ€™s ability to read environmental print was also investigated with
97.23% of Group 2 children reportedly able to identify these kinds of words
at least â€˜occasionallyâ€™ and over 59% able to demonstrate this skill â€˜dailyâ€™.
By contrast, 72.3% of Group 1 children could identify these kinds of words
at least â€˜occasionallyâ€™, and 23.4% could do so on a â€˜dailyâ€™ basis. The
median group score for frequency of reading environmental print was
significantly higher in Group 2 than in Group 1 [Mann Whitney U = 432.00,
0.001]. Parents reported the words most commonly recognised by their child
included fast food restaurant and other shop names, food and beverage labels
and logos, traffic signs and high frequency words taught at school.
When asked about whether their child read books independently, parents
reported 52.1% of Group 1 and 45.9% of Group 2 children were never or rarely
reading independently and 29.1% of Group 1 children and 32% of Group 2
children were reading independently every day. Parents distinguished between
their childâ€™s independent reading behaviours and their ability to identify
their name, environmental print and sight words. Thus although more older
children were able to identify these kind of words compared to their younger
peers, a Spearman rank order correlation found no significant relationship
between reported independent reading and age (r = 0.015, p = 0.89) for the
When asked whether their child knew all the letter names and letter
sounds, parents reported letter name knowledge to be in advance of letter
sound knowledge with 52% of children reported to know all letter names and
28.3% reported to know all letter sounds. No child was reported to have
complete letter sound knowledge without complete letter name knowledge
although the reverse was true for 21.5% of children. Analysis by age group
indicated more older children were reported to know all letter names
[Mann-Whitney U = 464.0, p = 0.018] and letter sounds [Mann-Whitney U =
381.0, p = 0.008] than their younger peers with 67.6% and 45.1% reported for
Group 2 children compared to 39.4% and 14.2% reported for Group 1 children
This descriptive study gathered survey data on the HLE from parents of 85
New Zealand school-aged children with Down syndrome. The survey adopted an
emergent literacy framework to explore participantsâ€™ HLE across three broad
The first of these themes explored the parentsâ€™ priorities regarding
literacy for their child with Down syndrome. The findings of this study
suggest most parents place a high value on supporting their childrenâ€™s
literacy development. Classroom literacy instruction was identified as a
priority by the majority of parents. Additionally, reading and writing
skills were ranked amongst the most important skills for their child to
learn at school. The homes of the children in this study were generally rich
in literacy resources, both for reading and writing experiences.
The mean and median number of books owned by children in the study was
similar to the number reported by middle-high SES parents in the SÃ©nÃ©chal
study and consistent with those reported by Mullis et al.
Zealand 4th grade children. Mullis et al. also reported more books in homes
was associated with better reading scores internationally, with
substantially greater reading scores demonstrated by children from homes
with high numbers of books. While there was 5% of children (in Group 1) who
owned fewer than ten books, it is unlikely, in line with Marvin and
Wright and Trenholm and Mirenda, that a lack of literacy resources
was a major determiner of the literacy experiences that occurred in the
home. There was only one instance where a parent reported both they and
their child with Down syndrome owned fewer than 10 books.
Early onset of story reading activities has been associated with improved
oral language in typically developing children and early reading
instruction has been associated with increased speech and language skills in
young children with Down syndrome. The majority of children in the study
were introduced to books at a young age which is consistent with the
findings of other researchers investigating joint reading for typically
developing children, with a mean age at the onset of joint reading of 8
months (range: birth to 18 months) reported by DeBaryshe
and 9 months
reported by SÃ©nÃ©chal et al.. However, many parents did not engage with
books with their children until shortly before school. Karrass, VanDerventer,
and Braungart-Rieker investigated shared book reading with parents and
their typically developing 8 month old infants and reported lower parental
stress and higher income differentiated dyads that read together from those
that did not. In a study investigating families of children with Down
syndrome, Cunningham reported between a quarter and a third of families
were experiencing negative stress, which was most associated with child
behaviour problems and low IQ. Thus, while it is conceivable that the
parents who reported beginning reading to their child later were those who
were experiencing more stress, the late onset of joint reading identified in
this study warrants further investigation.
Ricci reported the literacy environment and experiences of the
children with Down syndrome in her study appeared to be most strongly
associated with mental age rather than chronological age. Consequently,
children (who will go to school on a chronological age schedule) will arrive
at school with fewer emergent literacy skills at the onset of formal
schooling and formal literacy instruction than their typically developing
peers. Consistent with the findings reported by Trenholm and Mirenda and
Purcell-Gates, there is a suggestion in the current data that some
parents believe learning to read and write begins with the onset of formal
schooling and is the responsibility of the teacher, even while they are
happy for their children to do the homework required of them. Clearly this
is an area requiring further research.
The second theme investigated features of the HLE, specifically the
frequency and duration of literacy interactions and the ways in which
parents facilitated and encouraged their childâ€™s literacy development.
The findings suggest most parents are actively providing a rich and
positive home literacy environment for their children with Down syndrome.
Not only were books available to the children in the study, but parent
engagement with their child in reading was a frequent and positive
experience in most of the homes. Over 90% of parents and children in the
study reported reading together, a practice which began early in the childâ€™s
life for two thirds of the families. Although time spent reading together
was extremely variable, the majority of parents reported they had a regular
reading time and for 60% of families joint parent child reading was part of
their daily routine. Although parents reported joint reading was valued most
for its social and emotional benefits, parents were also actively engaging
with the print material and encouraged their childrenâ€™s emergent literacy
behaviours. In particular, many engaged in the kinds of strategies that have
been shown to encourage phonological awareness and speech and language
Half of all children were engaged in some drawing or writing activities
every day, however only 35% of children were reported to write (or attempt
to write) words and 15% to write or attempt to write stories. Moreover, some
children although they are already at school, have yet to draw or write at
all. Additionally, far fewer parents reported regularly helping their child
with writing than with reading. Of concern is that many of the parents in
the study reported that their children â€˜neverâ€™ or â€˜rarelyâ€™ brought home
writing homework. It must be noted, however, that failure to draw and write
did not seem to be because the necessary implements were unavailable.
The relationship between provision of help and the allocation of reading
and writing homework prompts further consideration of the role of the school
versus the home in encouraging literacy in school-aged children with
emergent levels of literacy, given the apparent reliance of many children on
work allocated by the school, in class or at home, to develop their writing
skills. Homework has been identified as a mechanism for linking home and
school and as part of effective teaching practice. The lack of
relationship between allocated writing homework and help with writing for
Group 2 children in the current study was unexpected, and suggests there is
a need for parents and teachers to work together to enhance writing skills
in children with Down syndrome.
Letter knowledge instruction has been found to be predictive of later
reading outcomes for young typically developing children[19,21-23]. Most
parents in the current study reported actively teaching their child letter
names and sounds, however, consistent with the findings of SÃ©nÃ©chal and
LeFevre , parent teaching of letter names and sounds was not correlated
with joint story reading frequency.
Parents also appeared to be taking advantage of a range of other
opportunities to encourage literacy. Many children were encouraged to learn
from the environmental print of signs and logos and other frequently seen
words. Many parents engaged in language games with their children and most
children spend time on language rich exposure through TV and other
Finally, parents were aware that learning to read and write poses major
challenges for their children, and that levels of frustration over fine
motor control and difficulties of attention for example, present greater
challenges to their children than to many others. Nonetheless, they reported
finding ways to stay positive and to work with their children constructively
to support their emergent literacy in the ways reported here.
The final theme focused on the ways children with Down syndrome
participate during literacy interactions and included the childrenâ€™s
engagement with literacy activities and the literacy skills they
Childrenâ€™s literacy interest is an important contributor to reading
development and is one of the factors identified by Frijters et al.
associated with childrenâ€™s phonological awareness, letter knowledge and
vocabulary. Childrenâ€™s interest in books was significantly higher in younger
children than in their older peers. The classification of children in this
study into two groups reflects the typical classroom literacy environment of
the children in each age group. As such, the literacy skills and interests
of the younger children may be more aligned with the classroom instruction
they are receiving. Contrastively older children who face an increasing
discrepancy between their literacy skills and their classroom literacy
programme may have become disengaged from a literacy programme at school
that is incongruent with their skills and interests. A combination of poor
skills and infrequent reading practice may also contribute to a lack of
engagement with reading activities[49,50].
The current study reports the frequency of childrenâ€™s spontaneous
comments and questions about the pictures, text, characters and events as
measures of their level of active participation during joint story reading.
Children were most engaged with literacy tasks which were less cognitively
and linguistically demanding, engaging more with pictures than text,
commenting more than questioning, and questioning more about pictures than
characters or events, with many children reported to take a passive role (i.e. not yet or rarely participating) during joint story reading. However,
the childâ€™s active participation and engagement during joint story reading
is reported to be associated with and predictive of gains in language and
literacy skills [e.g. refs 51,52,53]. Future research directions may include
programmes which provide parents with strategies to encourage and promote
active involvement during joint book reading by their child with Down
As is the case with typically developing children, participantâ€™s letter
name knowledge was in advance of their letter sound knowledge[54,55].
Although older children knew significantly more letter names and sounds than
their younger peers, fewer than half of the group had complete letter name
and sound knowledge. Given the strong link between letter knowledge and
reading reported in the literature[55,56], low levels of letter knowledge
are of concern. Buckley et al. reported some children with Down syndrome
were able to use alphabetic strategies to read novel words, however such an
ability is contingent on having phoneme-grapheme connections. Single word
reading skills were reported to be more advanced in older children than
younger children. Additionally, a higher proportion of older children were
reported to pretend to read, and to read independently at least
occasionally. However, regular independent reading was not correlated with
age, with only half of the children reading independently at least weekly. A
lack of reading practice has been implicated in delayed fluency and
automaticity and reduces the opportunity to acquire the superior vocabulary,
declarative knowledge, spelling and reading comprehension associated with
increased exposure to print[49,50,
The major limitation of this study is that the data are based on parental
report. Parentsâ€™ answers may portray a more socially desirable response and
as such they may have overstated the measures of literacy engagement in the
home, and their priorities regarding literacy for their child. Additionally
childrenâ€™s reported skills and interests are estimates only and may not be
an accurate representation. To counterbalance the view of the parents, the
teachers of these same children were asked a similar set of questions. A
report on this data is in preparation. Even with this second data source it
may still be that the schools and parents who agreed to participate in the
study may have been those for whom literacy was a higher priority.
The study would have been enhanced by the inclusion of a control group of
typically developing children. Data from similar studies with typically
developing children have been included where appropriate to mitigate this
Although analysis of the school decile for non-respondents indicated more
of these children attended middle decile schools with slightly fewer from
both high and low decile schools, the decile distribution is not markedly
different from that of the children included in the study, which therefore
may be considered representative of a wider sample. Finally, although the
decile of the schools that participants attended is known, no direct
information was gathered on familiesâ€™ socio-economic status or on maternal
Despite these limitations, the study represents
the first attempt to gather systematic data
regarding home literacy environments and practices
for New Zealand children with Down syndrome. The
study provides valuable information for parents and
professionals about what literacy environments
children with Down syndrome currently experience and
may shape directions for future investigation with
a A copy of the survey is available
from the first author on request.
b Although there are no New Zealand
national prevalence data for Down syndrome births,
Stone reported stable yearly prevalence data of
1.17 per 1000 births between 1997 and 2003. Mean New
Zealand birth rate for the period during which
participants were born (1992 to 2001) was 57,799 (SD
= 1,305). From these data it can be estimated
for the purposes of the research that 65-70 children
with Down syndrome were born in New Zealand annually
during that period and that approximately 575
children with Down syndrome are in school years 1-8
(Children are required to attend school from the age
of 6 (Year 1) although they may, and most do, attend
c (There are 28 non-residential
special schools in New Zealand located in 14
different towns and cities. Sixty-eight percent of
the special schools are located in the six largest
urban areas .)
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This research report is based on a component of
the first authorâ€™s doctoral research under the
supervision of the second and third authors. The
authors would like to thank parents and caregivers
who completed the survey. Thanks also go to Pat Coope, statistical consultant, for support and
assistance with statistical analysis.
All authors listed in the byline (van Bysterveldt, Gillon and
Foster-Cohen) have made contributions appropriate for assumption of
authorship and have agreed to submission of the manuscript. This paper is an
original manuscript and has not been previously published, nor is it under
review elsewhere. The project has received ethical clearance from the Human
Ethics Committee, University of Canterbury and from The Champion Centre
Research Committee. Conflicts of interest have not been identified.
The first author received financial support for her doctoral research
from the following sources: Tertiary Education Commission of New Zealand Top
Achiever Doctoral Scholarship; Medical Staffing International-New Zealand
Speech-Language Therapistsâ€™ Association Post-Graduate Award; New Zealand
Speech-Language Therapistsâ€™ Association Research Award. The role of these
sponsors was financial support only.
Received: 5 December 2008; Revised version accepted: 4 March 2009;
Published online: January 2010
DSE's Reading and Language Intervention for Children with Down Syndrome (RLI) is an evidence-based programme designed to teach reading and language skills to children with Down syndrome.
RLI incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomised controlled trial and found to improve rates of progress compared to ordinary teaching.
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