ArticlePDF Available

Examining the effect of networks for students with special educational needs

Authors:
  • RehabiliteringsCenter for Muskelsvind

Abstract and Figures

Fewer students with disabilities complete upper secondary education than students without disabilities. Danish students with Duchenne muscular dystrophy (DMD), attending either a mainstream or a special needs school, their teachers and parents participated in a cross-sectional and intervention study about factors hindering or promoting the best possible schooling and school experience. The study was based on virtual online networks and seminars and results were accumulated from interviews and questionnaires. We found that teachers benefited most from physical networking and parents most from virtual networking. The students only made little or no use of the networks. The teachers' need for access to expert knowledge about DMD was met. More than 80% of the teachers and parents said they would continue using the networks if they were made permanent.
Content may be subject to copyright.
Examining the effect of networks for students with special educational
needs
Ann-Lisbeth Højberg* and Jørgen Jeppesen
RehabiliteringsCenter for Muskelsvind, The National Rehabilitation Centre for Neuromuscular
Diseases, Denmark
(Received 4 December 2009; accepted 5 November 2010)
Fewer students with disabilities complete upper secondary education than
students without disabilities. Danish students with Duchenne muscular dystrophy
(DMD), attending either a mainstream or a special needs school, their teachers
and parents participated in a cross-sectional and intervention study about factors
hindering or promoting the best possible schooling and school experience. The
study was based on virtual online networks and seminars and results were
accumulated from interviews and questionnaires. We found that teachers
benefited most from physical networking and parents most from virtual
networking. The students only made little or no use of the networks. The
teachers’ need for access to expert knowledge about DMD was met. More than
80% of the teachers and parents said they would continue using the networks if
they were made permanent.
Keywords: networks; primary and upper secondary school; special educational
needs; hindering and promoting factors; Duchenne muscular dystrophy
Introduction
Studies show that young people with no upper secondary schooling are at greater
risk of being marginalized in the labour market and in society at large (Jensen and
Jensen 2005; Ejrnæs 1992), and several studies point to the fact that fewer people
with a physical disability enrol in an upper secondary educational programme than
young people without a physical disability. Even fewer in the first group complete a
higher education (Capacent 2009; Krog 2009; Højberg and Steffensen 2008; Center
for Ligebehandling af Handicappede 2005; Rahbek et al. 2005).
Denmark has signed the UN Standard Rules on the Equalization of Opportu-
nities for Persons with Disabilities and ratified the Salamanca Statement, thus
committing Denmark to take an inclusive approach to all students (Alenkær 2008;
Tetler 2008).
Students in Denmark either attend a mainstream class at a mainstream primary
and upper secondary school, a school for children with special educational needs
(SEN school) or a special educational needs class (SEN class) at a mainstream
school. Children attending SEN schools or SEN classes usually have cognitive
difficulties, but in some instances they are enrolled in a SEN school because of
accessibility issues or the availability of physiotherapy. SEN schools and SEN classes
*Corresponding author. Email: anho@rcfm.dk
Scandinavian Journal of Disability Research
Vol. 14, No. 2, 2012, 126147
ISSN 1501-7419 print/ISSN 1745-3011 online
#2012 Nordic Network on Disability Research
http://dx.doi.org/10.1080/15017419.2011.558188
http://www.tandfonline.com
are characterized by fewer students, more teachers and pedagogues, and children
with various types of functional disabilities, physical as well as cognitive. Normally
students with functional disabilities attend mainstream schools, but typically there
are only few of them at each individual school and rarely more than one in a class.
Many children with muscular dystrophy do well in school (von Gontard et al.
2002; Riviere and Lecuyer 2002) while others are not at the same academic level as
their peers without muscular dystrophy.
One of the best described muscular dystrophy groups in national and interna-
tional literature and the target group of this study is boys with Duchenne muscular
dystrophy (DMD) (Hinton 2000; Wicksell et al. 2004; Billard et al. 1992; Greve
1993), a rapidly progressive, neuromuscular disease that only affects boys. Boys with
DMD are wheelchair dependent around the age of 12, require practical help during
adolesence and depend on permanent assisted ventilation due to respiratory
insufficiency from the age of 20 approximately (Muskelsvindfonden 1996). Accord-
ing to the Scandinavian Consensus Programme for DMD (Sejersen
et al. 2003), 25% to 30% of children with DMD are mentally retarded and most
of them have specific cognitive or language problems. For a large portion of these
children, a special needs programme is often the best possible solution (Catlin and
Hoskin 2006). Experts also emphasize the importance of a special educational effort
for some children and youths with reduced functional capacity no matter how it is
organized (Kirkebæk 2009).
Practical experience and studies by the National Rehabilitation Centre for
Neuromuscular Diseases in Denmark (RCfM) have shown that teachers generally
lack specific knowledge about their studentsdisabilities and competences and need
help and guidance to identify relevant expectations of and challenges for the
students. If a school has no previous experience with disabled students, its teachers
will not be able to seek advice from experienced colleagues. Many teachers of
disabled students have, thus, requested an opportunity to exchange knowledge with
teachers who are experienced in this field. One study points to the teachers feeling of
powerlessness and incompetence in their job as an essential barrier to inclusion
(Sloth 2005).
Starting mainstream school is normally unproblematic for boys with DMD, but
in fourth through sixth grades (age 913) they often find themselves isolated
intellectually and socially. The reason for this is multifaceted: Absence from school
due to regular physical therapy, adaptation of aids, hospitalizations, etc; Many day-
to-day functions are much more time-consuming for them than for their
classmates; DMD is a progressive disease resulting in a gradual loss of functional
abilities which they have to learn to cope with. The boys have not always been met
with the same challenges, expectations and demands as other boys; They have
received special care from family members, teachers and pedagogues to such an
extent that they have lost their ability to take initiative, identify their needs, accept
or object to things, and make decisions (Højberg and Steffensen 2008); And finally,
the lack of accessibility and technical aids may be a hindrance to participate in the
class as an equal.
Research question
The adequacy of the Danish school system is a topic for continued discussion, but
this study takes its point of departure in the existing school system, acknowledging
Scandinavian Journal of Disability Research 127
the fact that a significant number of boys with DMD have special educational needs
that would possibly not be met without the existence of SEN schools. Within the
given framework, the study aims to identify factors that either hinder or promote
good schooling and a good school experience. Furthermore, the study wants to
examine whether the establishment of physical and virtual networks for parents,
teachers and students could be a promoting factor.
Material and method
Population
All boys with DMD registered with RCfM as per 1 August 2006, who in the school
year 2006/2007 attended kindergarten through fourth grades, and all boys with
DMD registered with RCfM as per 1 August 2007, who in the school year 2007/2008
attended sixth through eighth grades were invited to participate in the study. The
study population was made up of a total of 60 boys of which 33 attended a
mainstream school and 27 a SEN school. The parents of two boys said they were too
busy with other projects, and the parents of four boys did not respond to the
invitation to participate in the study. The analysis population, thus, consisted of 54
boys, their parents and teachers (Table 1).
Design
The study was a combined cross-sectional and intervention study. The cross-sectional
study consisted in accumulating knowledge about the factors that hinder or promote
the best possible schooling and school experience and was carried out at the
beginning and end of the project. The intervention consisted in examining the effect
of networks and was carried out in the shape of instruction and exchange of
knowledge at seminars and dissemination of information and communication on
websites for teachers and parents (SKUD06.dk) and the oldest students (MSN
Messenger).
Data were assessed for mainstream schools and SEN classes/schools to account
for the differences and similarities between the two types of school. In the study we
refer to both SEN class and SEN school as SEN school although we are aware that
Table 1. Number of students represented in SKUDs cross-sectional study at project start
and end.
Students represented
Project start (nationwide n54
students)
Project end (3 regions n 40
students)
Mainstream school
n30 students
SEN school
n24 students
Mainstream school
n22 students
SEN school
n18 students
Teachers 20 (67%) 22 (92%) 8 (36%) 14 (83%)
Parents 30 (100%) 24 (100%) 20 (91%) 13 (75%)
Students 29 (97%) 24 (100%) 19 (86%) 18 (100%)
Note: Responses from teachers and parents correspond to the number of students they represent.
128 A.-L. Højberg and J. Jeppesen
there are several differences between the two types of schools and schooling (Center
for Ligebehandling af Handicappede 2010).
The study was carried out in the period 1 October 2006 to 31 December 2008. It
was launched under the name Project SKUD School and education project for
children and youths with DMD, and the project was funded partly by RCfM and
partly by grants from the Danish Ministry of Education.
In accordance with legal requirements, RCfM has been authorized by the
Danish Data Protection Agency (Datatilsynet) to collect, register, process, and
publish data about neuromuscular patients for scientific and research purposes.
Furthermore, the collection of data is authorized by written consent from the
individual patient.
Cross-sectional study
At project start, the cross-sectional study comprised the total analysis population. At
the end of the project, the cross-sectional study had been limited to include the 43
persons from the analysis population living in the regions North Denmark Region,
Central Denmark Region and the Region of South Denmark due to resource issues.
Three of the boys who had declined to participate in the study lived in one of the said
regions, and this gave an analysis population of 40 boys for the final cross-sectional
study (Table 1).
The cross-sectional study at project start was carried out as interviews with
teachers, parents and students on the basis of a structured questionnaire. The
interview guide allowed for both yes/no answers as for more elaborate answers.
Interviews were carried out by the project leader during visits to the home or
school. A few participants were interviewed over the telephone, either for practical
reasons or because the person had wanted it that way.
The follow-up cross-sectional study at project end was carried out using a self-
reported questionnaire filled in by teachers and parents, while the students were
primarily interviewed over the telephone or, in a few cases, at home, at school or in-
house at RCfM. Many questions were repetitions of the questionnaire used at project
start with all factual questions omitted to avoid too many repetitions. Some
questions were only posed to one or two of the respondent groups as not all groups
were able to answer all questions (Figure 1).
The teacher category was mainly made up of class teachers, that is, teachers
responsible for the contact between school and home, social activities such as school
camps, etc. In a few cases, they were replaced by other teachers or a classroom
assistant who knew the student well.
Data analysis was grouped into four themes: (1) Academic and cognitive skills;
(2) Social competences; (3) Opinions, expectations and knowledge; and (4)
Organizational, environmental and resource factors. Themes were defined on the
basis of a described model for planning, understanding and explaining an
intervention in practice (Yeo, Berzins, and Addington 2007; Gielen and McDonald
1997). Data at project start were sorted by respondent groups teachers, parents
and students respectively and analysed under the four themes with the aim of
assessing factors concerning schooling and school experience of students with
DMD.
Scandinavian Journal of Disability Research 129
Data at the follow-up were analysed for the same four themes as at project start.
At least two of the three respondent groups were included in the assessment to ensure
a higher representation and to triangulate responses (Malterud 1996).
Intervention study
Physical and virtual networks were structured with a view to facilitate dialogue
between participants, disseminate information from RCfM and gather knowledge for
RCfM to be distributed among the participants.
The effect of network interventions was assessed using a questionnaire for
teachers and parents at project end and by spot evaluations at seminars. Traffic on
websites was registered on a monthly basis. The number of students represented
appears from Table 2.
Table 2. Number of students represented at SKUD seminars and websites.
Students represented
Network Mainstream school SEN school
Seminars for teachers of all students 9 (41%, n 22) 13 (72%, n 18)
Seminars for parents of young students 5 (38%, n 13) 1 (10%, n 10)
Seminar for old students 1 (11%, n 9) 5 (63%, n 8)
SKUD06.dk for teachers of all students 13 (59%, n 22) 15 (83%, n 18)
SKUD06.dk for parents of all students 17 (77%, n 22) 6 (33%, n 18)
MSN Messenger for old students 0 (0%, n 9) 3 (38%, n 8)
Note: The number of students which could have been represented are listed in parenthesis.
Figure 1. Flowchart of nationwide and regional questionnaires, network interventions,
participant evaluations and assessments.
130 A.-L. Højberg and J. Jeppesen
Networks
The networks could be accessed in various ways: Participants could meetonline via
emails and conference sites or they could meet face-to-face at meetings and seminars.
Seminars
Seminars were arranged for teachers, parents or students respectively and potential
participants from the three selected regions were invited by mail or email. All
seminars included both presentations and experience-sharing, and participation was
free of charge.
We arranged four seminars for the teachers at which we discussed the most recent
medical research in DMD, disabilities in general, cognitive and psychosocial
problems and pedagogue/teacher-related topics. Two of the seminars were aimed at
primary school teachers and two were for all teachers.
We gave a seminar for the parents of the youngest students about practical help
and the schoolsneed for information. Finally, we had reserved one seminar for the
oldest students about the MSN Messenger platform and team building.
SKUD06.dk
The website SKUD06.dk was designed as a closed discussion forum for teachers and
parents respectively and with a shared platform for teachers and parents on which
they could read and upload information about topics of interest and RCfM could
post information.
Class teachers, other teachers, pedagogues and classroom assistants affiliated
with the student had access to the teachersforum. The project management (the
project manager and one journalist) had access to all forums and could upload new
information to all platforms.
MSN Messenger
The oldest group of students with DMD was offered access to a virtual network.
They were approached by an ad hoc project worker with an invitation to contact him
first and then to establish contact with the other participants.
Ethical issues
The idea of interviewing the students gave rise to some ethical considerations. Would
the youngest students be able to answer the questions? Would they experience
stigmatization because they were given special attention? Would they be forced to
answer questions that they would not otherwise have been asked to consider at such a
young age? Nevertheless, we decided to include all the students, one of the reasons
being that all the participating families were familiar with RCfM prior to the study. We
also decided to approach the parents before the interviews to give them an opportunity
to prepare the student for our visit. Furthermore, students at all grade levels were
interviewed but not asked to self-report. Some of the students had difficulties in
understanding certain questions which we then attempted to rephrase. Finally, we
decided to ask fewer questions to the students than to their parents and teachers.
Scandinavian Journal of Disability Research 131
Results
I. National cross-sectional study at project start regarding hindering and promoting
factors in schooling
Mainstream school
Teachers of mainstream classes characterized the boys with DMD as students who
are not quite at the same academic level as their peers but who have adequate social
skills. The students were described as having some difficulties in the class, and the
majority of teachers said it is a challenge to have students with DMD in their class. In
spite of all this, most teachers expected the same of students with DMD as of other
students. When asked whether it is a problem to have a personal assistant in the
classroom, an equal number of teachers answered yes, no and dont know. Three
fourths of the teachers said they did not have adequate knowledge about muscular
dystrophy.
In assessing their childrens academic skills, the parents were more positive than
the teachers although they did report a significantly higher number of problems with
personal assistants than the teachers. Avery small number of parents found that their
sons lacked expectations for future career opportunities and half of them did not
think the teachers knew enough about muscular dystrophy.
More than half of the students could not point to anything negative about their
class, and fewer of them knew what they wanted to be when they grew up.
SEN school
A much larger portion of the students at SEN schools were characterized by their
teachers as lacking age-appropriate academic skills and social competences.
Conversely, these same teachers reported that the students had fewer problems
in class but more than half of them said it was a challenge to have the student in their
class. Teachers at SEN schools rated their own knowledge of DMD the same as
teachers at mainstream schools.
Parents agreed with the teachers about the boysacademic skills but did not find
having personal assistants in the classroom as problematic as the teachers. Less than
half of the parents did not believe their sons had any expectations as to future career
opportunities but almost half of them found that the teachers knew enough about
muscular dystrophy.
More than half of the students could not point to anything negative about their
class and even fewer of them had any idea of what they wanted to be when they grew up.
Factors relating to both types of school
Physical impairment as a consequence of muscular dystrophy was considered the
dominant reason why it was difficult for the boys to be in a class. When posed to the
students, the question was accompanied by the question what is good about being in
the class?to which the majority of students in both types of schools (approximately
half of all the students) answered friendships with classmates.
When teachers referred to the special challenges related to having a student with
muscular dystrophy in their class, they typically meant practical problems and
extensive planning of all school and extracurricular activities to accommodate for his
132 A.-L. Højberg and J. Jeppesen
special needs. (A table of data from project start regarding schooling and school
experience of boys with DMD can be obtained from the corresponding author).
II. Regional cross-sectional study at project end regarding hindering and promoting
factors in schooling
(a) Academic and cognitive skills (Table 3)
Mainstream school. A little more than half the teachers rated the students academic
skills poorer than that of his peerswhile even more said that the student was good or
fairly good at remembering messages and staying concentrated on the things he liked
to do. His ability to remember academic information and concentrate on the things
he was supposed to do did, however, not receive the same positive rating.
Parents rated the students academic and cognitive skills higher than the teachers
did, especially the students ability to remember messages and keep his concentration
and self-esteem.
The students strongly disagreed with their parentsand teachersassessment of
their ability to remember messages.
SEN school. Students at SEN schools are at a considerably lower academic level
than students at mainstream schools.
In spite of that, almost just as many respondents said that the student was good
or fairly good at remembering academic information, and even more said that the
student was good or fairly good at remembering messages. All teachers and the
majority of parents said that the students ability to concentrate on the things he was
supposed to do was good or fairly good, and the students self-confidence was rated
high or fairly high while his self-esteem was rated even higher.
Many of the respondents said there were subjects the students did not participate
in, but the students tended to disagree.
Factors relating to both types of school. Parents as well as teachers and students said
that typically, students did not participate in subjects that require physical exercise or
activities, and the teachers added that the students did not participate in some
academic or creative subjects or activities. The parents and especially the students did
not share this perception. Physical impairment was generally stated as the main
reason for non-participation, and all the students exclusively pointed to this as the
reason.
(b) Social competences (Table 3)
Mainstream school. The studentssocial competences was reported as good or fairly
good, but none of the students or teachers said that the student frequently took part
in planning recess activities.
Parents were very positive about the studentsability to socialize in their leisure
time, while more than half of the students did not share their parentsopinion.
SEN school. Most of the respondents said the students had good or fairly good
social competences, but none of the students, and only few of the teachers answered
in the affirmative when asked whether the student frequently takes part in planning
recess activities.
Scandinavian Journal of Disability Research 133
Table 3. Academic and cognitive skills and social profile of students with DMD.
Mainstream school SEN school
Yes No Don’t know Yes No Don’t know
Academic level lower than peers (TP) 44 (6325) 39 (1265) 17 (2510) 82 (8677) 7 (015) 11 (148)
Good or fairly good at remembering academic
information (TPS)
73 (628573) 17 (251511) 10 (13016) 77 (648583) 17 (29156) 6 (7011)
Good or fairly good at remembering messages
(TPS)
62 (759021) 9 (12105) 29 (12074) 80 (788478) 7 (786) 13 (15816)
Good or fairly good at concentrating on things he
likes to do (TPS)
89 (7610090) 1 (005) 10 (2405) 96 (93 10094) 0 (000) 4 (706)
Good or fairly good at concentrating on things he
has to do (T P)
79 (6295) 15 (255) 6 (130) 93 (10085) 7 (015) 0 (00)
High or fairly high selfconfidence (T P) 64 (6365) 27 (2430) 9 (135) 78 (7285) 15 (1415) 7 (140)
High or fairly high selfesteem (T P) 81 (7585) 11 (1310) 8 (125) 85 (9377) 12 (023) 3 (70)
Shows good or fairly good social competences
(TPS)
89 (888595) 11 (12155) 0 (000) 88 (868495) 4 (705) 8 (7160)
Mostly has a say in recess activities (TS) 0 (00) 91 (8895) 9 (125) 10 (210) 77 (7183) 13 (817)
Classmates frequently visit student at home
(PS)
66 (7558) 34 (2542) 0 (00) 34 (4622) 63 (5472) 3 (06)
Is frequently visited by other than classmates
(PS)
54 (7037) 46 (3063) 0 (00) 24 (3116) 70 (6278) 6 (76)
Does frequently go places with classmate other
than home (P S)
51 (7031) 39 (2553) 10 (516) 33 (3828) 61 (5467) 6 (85)
Note: Data listed as average (%) of total responses from the respondent groups first and answers from the respondent groups respectively are shown in parenthesis: Teachers
(T), Parents (P), Students (S).
134 A.-L. Højberg and J. Jeppesen
The students did not spend nearly as much time with classmates in their leisure
time as students in mainstream classes, and parents of SEN school students believed
that their sons spent more time with classmates outside school than their sons said
they did.
(c) Opinions and expectations (Table 4)
Mainstream school. Approximately half of the teachers expected the same of the
studentsacademic performance as they did of their peerswhereas their expectations
of the studentsability to complete mainstream upper secondary education were not
quite as high. Parents generally had higher expectations than the teachers, notably
that the student would graduate from lower secondary school and be capable of
attending an upper secondary educational programme. Asked whether they received
the same amount of homework as their classmates, the studentsresponses stood out
in that they all said that they did. The majority of all respondents had not considered
changing school.
Teachers, parents and students all found it was important to continue with an
educational programme after ninth grade. On a scale from 0 to 10 where 0 is Not
importantand 10 is Very important, the teachers, on average, found the
importance to be 9, the parents 8.9 and the students 7.4.
SEN school. More parents than teachers believed the teachers expected the same of
the student as of their classmates, but the teachers said the question was somewhat
difficult to answer because their teaching was tailored to the individual student.
None of the parents and only a small portion of the other respondents had
considered changing schools. None of the teachers expected the student to graduate
from ninth grade, neither that the student was qualified to continue in a mainstream
upper secondary school. Parents and students alike were unsure of what to expect
after primary and lower secondary school.
Teachers, parents and students at SEN schools found education beyond ninth
grade to be less important than respondents at mainstream schools. On a scale from 0
to 10 where 0 is Not importantand 10 is Very importantthe teachers rated the
importance to be 3.8 on average, whereas the parents rated it 6.7 and the students 6.1.
(d) Organizational, environmental and resource factors (Table 5)
Mainstream school. Teachers and parents considered the teacherslack of knowl-
edge about DMD a problem. Parents and students pointed to accessibility as a
problem whereas teachers did not report any lack of accessibility at the school. Far
the majority of the parents said that the student received practical help at school
while only half of the teachers said the same. Most respondents found the scope of
practical help appropriate and said that a computer was available for the student,
and especially the parents found the teacher-parent cooperation satisfactory.
SEN school. Teachers at SEN schools know more about muscular dystrophy than
teachers at mainstream schools, and this seemed to be the general belief. Help with
practical matters and availability of computers were not considered problematic, and
especially the parents were very satisfied with the school-home cooperation.
Scandinavian Journal of Disability Research 135
Table 4. Opinions and expectations of students with DMD at project end.
Mainstream school SEN school
Yes No Dont no Yes No Dontno
Is expected to write same amount of
papers as classmates (TPS)
58 (505074) 28 (372521) 14 (13255) 34 (213844) 43 (644617) 23 (1516 39)
Has same amount of homework as
classmates (LE)
82 (63100) 12 (250) 6 (120) 70 (5783) 23 (2817) 7 (150)
Is given special consideration during
class periods (T PS)
32 (253537) 61 (754563) 7 (0200) 35 (502333) 58 (43 6961) 7 (786)
Is given special consideration during
recess (TPS)
21 (371016) 71 (637079) 8 (0205) 36 (363833) 59 (64 4667) 5(0160)
Has considered changing school
(TPS)
17 (251510) 80 (758579) 3 (0011) 39 (7011) 55 (8610078) 6 (7 011)
Expects to take 9th grade exam
(TPS)
72 (639063) 7 (1255) 21 (25532) 11 (0 1517) 50 (795417) 39 (21 3166)
Expectations re. qualifications for
mainstream upper secondary
school (TPS)
53 (387053) 15 (25 516) 32 (3725 31) 11 (01617) 49 (8638 22) 40(144661)
Will an extra year (10th grade)
improve qualifications for upper
secondary school (TPS)
49 (504553) 14 (0 2021) 37 (503526) 33 (216217) 29 (501522) 38 (292361)
Do you/your son expect he will have a
job as an adult (P S)
52 (5053) 10 (200) 38 (3047) 28 (2333) 4 (80) 68 (6967)
Note: Data listed as average (%) of total responses from the respondent groups first and answers from the respondent groups respectively are shown in parenthesis: Teachers
(T), Parents (P), Students (S).
136 A.-L. Højberg and J. Jeppesen
Table 5. Organizational, environmental and resource factors for students with DMD at project end.
Mainstream school SEN school
Yes No Dont no Yes No Dontno
Do you as a teacher/does the
teacher know enough about
muscular dystrophy (T P)
28 (3720) 27 (13 40) 45 (5040) 52 (4361) 15 (7 23) 33 (50 16)
Are there rooms at school the
students cannot access
because of muscular
dystrophy (TPS)
20 (03526) 71 (886063) 9 (12511) 11 (14811) 86 (86 8489) 3 (080)
Does the student receive
practical help in school
(TPS)
75 (509084) 21 (381016) 4 (1200) 90 (88 9488) 6 (666) 4 (606)
Is the scope of practical help
appropriate (TPS)
86 (888089) 8 (01511) 6 (1250) 85 (7184100) 10 (2180) 5 (880)
Are there any problems related
to the practical help at school
(TP)
21 (1230) 58 (50 65) 21 (385) 11 (716) 63 (5769) 26 (3615)
Does the student have a
computer at school
(TPS)
85 (1007579) 12 (01521) 3 (0100) 84 (877789) 11 (715 11) 5 (680)
Does the teacher-parent
cooperation work (TP)
68 (5085) 7 (015) 25 (500) 79 (6493) 3 (07) 18 (360)
Note: Data listed as average (%) of total responses from the respondent groups first and answers from the respondent groups respectively are shown in parenthesis: Teachers
(T), Parents (P), Students (S).
Scandinavian Journal of Disability Research 137
III. Participant evaluation of content of network interventions
Results of seminars
Evaluations from seminars were characterized by a high approval rating of the
presentations and topics which were considered relevant, educational and inspiring,
and teachers frequently mentioned exchange of experience and the lectures as the
most rewarding feature of the seminars, whereas their lack of time was mentioned as
a major obstacle. Parents most frequently mentioned the chance to meet other
parents as the best seminar feature and geographic distance and difficulty in
understanding material as the major obstacles.
Teachers were highly motivated for learning more about cognitive difficulties,
expectations and challenges in boys with DMD and they pointed to social and
psychological factors as other relevant topics. They suggested supplementary topics
such as scanning of school books, computer technology in general, technical aids,
disability sports and more examples from real lifeand said they wished there had
been more time for sharing experience and discussion.
They were very satisfied that parts of the seminars were divided into themes for
teachers in mainstream schools and SEN schools respectively and into student age
and functional level, and there was a widespread agreement that seminars should
continue.
Activity at SKUD06.dk
The following themes were discussed at the website SKUD06.dk: education;
pedagogical and practical help; school camps and field trips; accessibility and
technical aids; computer technology; muscular dystrophy and disabilities (about the
muscular dystrophy diagnosis and living with a disability); friends and leisure time;
and about SKUD (features related to the project). One single theme Cooperation
was not discussed (A table of recorded data can be obtained from the corresponding
author).
In their closed forum, the teachers made a total of 1068 searches. The topic most
frequently searched in was School camps and field trips with most searches related to
the topic Accessible school camps, and this was also where teachers uploaded most
contributions. The theme Pedagogical and practical help was visited frequently, and
under this topic the Role of the personal assistant received special attention. Fewest
searches were made for the topic Teaching.
Parents made a total of 435 searches in their forum and were most interested in
Accessibility and technical aids, notably the topics Electric wheelchair and Mobile
phone, and this is where the parents uploaded most contributions. Under the theme
Pedagogical and practical help, the topic Role of the personal assistant was
the most popular whereas the Computer technology theme was not visited by the
parents in their own forum.
The joint parent-teacher forum had 1095 searches most of which were aimed at
the Muscular dystrophy and disabilities theme, notably the topic Psychological
support to boys with muscular dystrophy, descriptions of various books, reports and
films, and an ultra short description of the target group. The theme About SKUD
was frequently visited, and this was also where they could find monthly newsletters.
The themes Pedagogical and practical help and School camps and field trips were not
138 A.-L. Højberg and J. Jeppesen
visited in the joint forum. The topics scanning of books, Sports at school and
Motivation each had more than 100 searches.
Results of SKUD06.dk
At the seminars teachers or parents were asked to evaluate the website SKUD06.dk
with the following results:
Scientific articles placed on SKUD06.dk were positively received, and notably
those dealing with academic and cognitive factors were singled out by many, but
articles about problems in everyday life and new technical aids were also mentioned
as useful.
It was suggested that we present articles with advice on computer technology and
more topics related to school camps.
There were different opinions on the usability of the website. Many respondents
emphasized that it was a good place to find help along with its user-friendliness and
the procedure of sending a reminder by email every month informing about news at
the site was received positively.
Other respondents reported difficulties in entering the site due to either technical
barriers, forgotten passwords or an illogical lay-out of the site and many respondents
said the site was slow, that they felt bad about not getting started and that they were
pressed for time.
Teachers described information, knowledge bank, articles and instructions as the
best features of SKUD06.dk and problems with accessibility and lack of clarity as
the websites weakest points. Parents frequently mentioned awareness and focus on
disabled children as the best about SKUD06.dk and their own lack of involvement
and initiative and not being online very often as its biggest flaws.
Results of the virtual platform MSN Messenger
The 16 oldest students were invited to participate in an MSN communication
session. Six persons did not wish to participate, the ad hoc employee was never able
to get in touch with two persons, and four said they were interested but never online.
Four persons communicated online with the project worker but it was not possible
for us to register whether the four participants communicated with each other.
IV. Participant assessment of effects of network interventions
Mainstream school
Almost half of the respondents (parents and teachers) said that SKUD had given the
teachers more knowledge about muscular dystrophy and an almost similar number of
respondents said they were unsure about that but none of the teachers answered No
to the question (Table 6).
According to the teachers, SKUD had no effect on the studentsacademic level
or their ability to remember or concentrate, but they had noticed an effect on the
studentssocial competences. They did not find SKUD had changed the schools
views on what to require and expect of the students, nor its views on accessibility and
the need for improvements.
Scandinavian Journal of Disability Research 139
Table 6. Effect of network interventions for students with DMD.
Mainstream school SEN school
Yes No Dont no Yes No Dontno
Has SKUD given you/the teachers more
knowledge about muscular dystrophy (TP)
45 (5040) 12 (025) 43 (5035) 56 (5062) 11 (148) 33 (3630)
Has SKUD changed the students social
competences (TP)
34 (635) 55 (2585) 11 (1210) 7 (015) 63 (79 46) 30 (21 39)
Has SKUD changed the schools requirements of
expectations of the student (TP)
25 (2525) 49 (6335) 26 (1240) 19 (15 23) 47 (71 23) 34 (14 54)
Has SKUD changed your perception of the
students need for practical help (TP)
21 (375) 79 (6395) 0 (00) 18 (22 16) 64 (57 69) 18 (21 15)
Has SKUD changed the students academic
competences (TP)
2(05) 69 (6375) 29 (3720) 11 (023) 63 (7946) 26 (2131)
Has SKUD influenced the students ability to
remember and concentrate (TP)
0(00) 85 (7595) 15 (255) 7 (015) 55 (71 39) 38 (2946)
Has SKUD made you aware of the need for
changes to the schools accessibility (TP)
40 (080) 55 (10010) 5 (010) 11 (716) 74 (8661) 15 (7 23)
If SKUD was permanent, would you participate
(TP)
82 (8875) 11 (1210) 7 (015) 85 (9377) 11 (715) 4 (08)
Note: Data listed as average (%) of total responses from the respondent groups first and answers from the respondent groups respectively are shown in parenthesis: Teachers
(T), Parents (P).
140 A.-L. Højberg and J. Jeppesen
In contrast to this, almost all parents said that SKUD had changed their
perception of the studentsneed for practical help.
Parents found SKUD to be a fine initiative but said they had not used it as much
as they would have liked. They hoped the project had given a boost to the schools
awareness of their sonsspecial needs and problems related to schooling and
education.
SEN school
More than half of the respondents said that SKUD had brought more knowledge about
muscular dystrophy to the teachers while one-third were unsure about that (Table 6).
None of the teachers thought that SKUD had had an effect on the students
academic or social qualifications, and most teachers did not think SKUD had
changed the schools views on what to require and expect from the student, nor its
views on accessibility and the need for improvements. A small portion of the parents
thought SKUD had had an effect on the students academic qualifications and the
schools requirements and expectations.
Factors related to both types of school
More than half of the teachers said that they had participated in SKUD as much as
they wanted to. The reasons stated for non-participation were matters of time or the
fact that they had only recently begun to teach the student and therefore not been
able to join SKUD from the beginning. The majority of all respondents said they
would participate in SKUD if it was permanent while only very few of them said they
would not.
Teachers and parents were asked to evaluate their expectations of the project and
the outcome of their participation in networks (Table 7).
Discussion
Material and method
The initiative to establish networks to improve the educational conditions for this
group of students has not previously been studied and no comparative studies have
Table 7. Evaluation of SKUD.
Mainstream school SEN school
Teachers
(n 8)
Parents
(n 20)
Teachers
(n 14)
Parents
(n 13)
Has SKUD met your
expectations?
9.2 (810) 5.1 (010) 5.9 (010) 5.9 (010)
Outcome of physical networks
and seminars
7.8 (010) 2.9 (010) 3.9 (010) 2 (08)
Outcome of virtual network and
SKUD06.dk
3.8 (09) 3.3 (0 8) 3.2 (0 6) 2.5 (0 8)
Note: Mean assessment on a scale from 0 to 10, where 0 means No/Nothingand 10 means A lot. Range
in parentheses. Data at project end.
Scandinavian Journal of Disability Research 141
been made of students in mainstream and SEN schools. Although commenting on
the generalizability to other target groups should be exercised with great care, young
persons with DMD could be comparable with other minority groups characterized
by a combination of cognitive and physical difficulties, disease progression,
stigmatizing and massive dependency of other people. For instance, young persons
with epilepsy, cerebral palsy or spina bifida or other groups of young people who are
introduced to new life-extending treatments.
The intervention study included students with DMD in three regions which gave
us an opportunity to generalize at the national level as the analysis population, at the
time of analysis, consisted of 40 students in the three selected regions out of a total
national population of 60 students of which 54 participated in the study.
The cognitive functional level varies considerably in children and young persons
with DMD (Hinton 2000; Billard et al. 1992) and there are, thus, both students with
DMD at mainstream and SEN schools. This calls for a similar division of study
design which, in turn, complicates the assessment of data, analysis and results, but on
the other hand strengthens the validity of the study in that it minimizes the risk of
study data bias (Malterud 1996). For the same reason, data from mainstream schools
and SEN schools are kept separate (Table 1).
Initially, attendance for the project was high with 90% of the study population
represented in the cross-sectional study at project start. In the final cross-sectional
study of three regions, representation was even higher with 93% of the study
population represented. Representation in networks ranged from 0% to 83% with a
total mean representation of 43% (Table 2).
Participation from teachers in mainstream schools at the end of the cross-
sectional study was 37% which we consider to be very low. Although many children
with functional impairment are now physically integrated in mainstream schools, no
extra measures are taken to ensure that the teaching is also inclusive (Alenkær 2008).
Much of the national and international literature discusses this issue (Tetler and
Langager 2009; Booth 2004; Moos et al. 2006; Tetler 2000; Cornwall 1996), but it has
not been the primary focus of this study. However, during the study we experienced
that teachers often find it difficult to give priority to extracurricular activities such as
filling in questionnaires. Moreover, their interest in making the extra effort may be
very little as it is unlikely there will be another student with muscular dystrophy at
their school in their time. Teachers at SEN schools seemingly had more time to
participate than teachers at mainstream schools and this also became apparent when
more employees from one SEN school were able to attend the same seminar. SEN
schools may see such days as an investment for future use because they have good
reason to expect more students with similar problems. Their need for special
knowledge about students with DMD might be greater as they usually deal with both
physical and cognitive problems.
Responses were triangulated at data assessment to ensure answers from at least
two respondent categories. This allows for more answers to the same questions and
gives a higher mean response rate. To give readers an insight into the responses of
each group, we have chosen to add these, knowing that deviations might be based on
few answers.
Almost all the students were enrolled in the project but few of them participated
actively in the formation of networks. The most active participation was seen in
students from SEN schools which was also the group who reported the smallest
number of friends outside school (Table 3), and we can thereby conclude that their
142 A.-L. Højberg and J. Jeppesen
incentive to network was greater. At the same time, they were the ones who had most
troubles in using the MSN Messenger website because it was difficult for them to use
the Internet, remember passwords and initiate communication.
If we look at how parents and teachers evaluate the outcome of networking
alone, we see a comparatively small effect. However, when asked if they would
participate in a similar, permanent project, the majority of the respondents said they
would do that. We can thus conclude that the desire to form networks was intact,
however, provided that we improve and develop the contents and organization of the
project. The importance of ensuring social interaction for the purpose of experience
exchange and sharing of innovative ideas has also been pointed out in a Norwegian
study (Skogen 2004).
Discussion of results
Knowledge
The number of teachers who said they lacked knowledge about DMD was reduced
considerably. We believe that in giving teachers more knowledge, they have become
aware that easy access to information is important for their role as a teacher.
Participation in SKUD (interviews/questionnaires and networks) seems to have
made the participants more aware of the many-facetted problems, thus making their
assessments at project end more well considered and reliable.
Choice of school
Results in our study clearly show how the two school types differ in respect of
opportunities and expectations. Mainstream schools were characterized by a higher
academic level and greater expectations in terms of writing papers, taking the final
exams, further education and future career opportunities. This emphasizes the
importance of enrolling the student in the right type of school. And it shows that
testing the cognitive skills of students with DMD before they begin school makes
good sense.
Friendships
Friendships are important for most people and sometimes crucial for young people
including children and youths with functional impairment (Høgsbro et al. 1999). A
large portion of the students in the study have a relatively small social network and
their friendships are, to a great extent, related to school especially at SEN schools
and thereby of great importance as an integrating factor for these students. The
possibility to form friendships is experienced very differently at the two types of
schools. At mainstream schools, students with muscular dystrophy rarely have other
students they can identify with and the risk of feeling different is imminent. But it is
possible to build friendships at school and continue them outside school. At SEN
schools, the presence of several other students with a physical impairment minimizes
the risk of the boys feeling stigmatized. At SEN schools, a larger portion of the
students with DMD are also involved in planning recess activities than in
mainstream schools. In contrast, the students at SEN schools have fewer friends
outside school, typically because the schools are not located in their neighbourhoods
Scandinavian Journal of Disability Research 143
and having friends over requires some planning. According to Norwegian research, a
childs place of residence is decisive for the size and composition of his network (Bø
and Schiefloe 2007), and when long transport times prevent daily contact with
friends, this becomes an important issue and makes high demands on the teachers
and parentsability to create the necessary space and framework for establishing
friendships.
Network
In the following, we will discuss the SKUD network in relation to aim, organization
and effect (Gielen and McDonald 1997).
Participants in the networks were informed about the importance of having direct
access to knowledge. They said this was very rewarding and would recommend it for
future use. Many teachers, parents and students had joint access to information
which would otherwise have been given to each of them individually and they had
rich possibilities for exchanging experience. This was much appreciated at seminars.
By allowing employees from both types of school to share experience, their
mutual insight in the other type of school increased.
The balancing of teachersand parentsexpectations to one another was
strengthened through the increased access to information. Parents often expect
more from the school than it is able to honour and by participating in networks, the
teachers have shown an interest in the students specific problems which is
appreciated by the parents.
The lack of financial resources at the individual schools was an obstacle as the
project budget only covered seminars and could not reimburse the schools for the
costs of having teachers out of house.
Conclusion and perspectives
The focus of this study was to examine networking among students with DMD, their
class teachers and parents as a method to gather knowledge about the factors
hindering or promoting the best possible schooling and school experience. The
participants in the study were students with DMD in mainstream and SEN schools,
their parents and teachers. In their assessment of the projects effect, the majority of
parents and teachers said they would participate in SKUD if it was a permanent
offer. We can thereby conclude that the project apparently met a widespread demand
for more information.
At project start, both parents and teachers said that the teachers needed more
information about DMD. Teachers found that having a student with muscular
dystrophy in their class was a great challenge, and many of the teachers in
mainstream classes had experienced significant problems with having a personal
assistant present during class periods. The project aim of ensuring access to much
needed relevant, specialized knowledge increased the awareness of a variety of
problems associated with students with functional impairment. The majority of
respondents said they had obtained more knowledge and this resulted in more
competent evaluations of the studentscompetences and difficulties.
On the basis of the project results, we recommend that schools which accept
children with functional impairments be given access to expert knowledge about
special conditions related to the individual student.
144 A.-L. Højberg and J. Jeppesen
The study proved a need for establishing networks especially those formed at
seminars and especially for teachers. Participation in the networks varied for the
different types of respondent groups and especially teachers at mainstream schools
found it difficult to participate because they were pressed for time. The need for more
knowledge, on the other hand, was pronounced and parents expressed a wish that the
teachers had more knowledge.
Participation in networks does not alter the studentsacademic skills but
exchange of experience might help prompt qualified solutions to complicated
problems.
The choice of school type will greatly influence the individual student. He will be
exposed to very different opportunities, expectations and conditions in a SEN
environment than in a mainstream school and vice versa. Whether the existing school
system offers adequate physical and academic environments for students with a
combination of physical and cognitive impairment has not been the main focus of
this study, but the study shows that students in mainstreams schools are given more
academic challenges and have better opportunities for establishing friendships
outside school. On the other hand, the risk of stigmatization is less pronounced at
SEN schools. Because social and cognitive competences vary considerably in children
with DMD, we also recommend that children with DMD take a child neuropsycho-
logical test before starting school. This may help qualify the choice of school type.
Students with DMD generally have fewer friends than students without muscular
dystrophy. Especially SEN school students see fewer friends outside school than their
peers. This emphasizes the importance of taking relevant and viable initiatives and
ensuring that teachers are able to create the necessary space and framework for
retaining friendships.
Results from SKUD can be generalized to other diagnoses for students with
special needs, for example, students with progressing functional types of impairment
who depend heavily on other people and whose perspective on life have changed due
to new treatments. Experience gathered from the SKUD network will also be
relevant for other teachers of children with special educational needs and for
establishing networks for those teachers.
The long-term aim for students with a functional impairment is to enable
continuation to upper secondary education and to support them in living an
independent youth and adult life at their own terms. Half of the teachers and parents
of students at mainstream schools and more than half of the parents of students at
SEN schools found that an extra preparatory year after ninth grade would improve
the students qualifications to complete an upper secondary education. This
emphasizes the importance of setting up initiatives that take the students cognitive
as well as physical needs into account.
The interest in specialized information combined with a pronounced indication
that the project has increased the knowledge of DMD clearly shows that the
networks had the desired effect. The teachersneed for specialized information and
general knowledge about DMD was met and parents unequivocally say that the
teachers now are more knowledgeable about DMD. The study group which benefited
most from the study and notably from the physical networks was teachers at
mainstream schools. In conclusion, the authors of this article therefore greatly
recommend networks as a forum for dissemination of information and as a platform
for experience exchange.
Scandinavian Journal of Disability Research 145
Acknowledgements
The authors would like to thank Annette Mahoney, MA in translation and interpretation, for
her great help with linguistic problems, translation and other didactic issues during our work
on this article.
References
Alenkær, R. 2008. Den inkluderende skole en grundbog (The inclusive school an
introduction, not available in English). Copenhagen: Frydenlund.
Billard, C., P. Gillet, E. Uicaut, P. Bartrand, J.-L. Signoret, M. Fardeau, M.-A. Barthez-
Carpentine, and J.J. Santini. 1992. Cognitive functions in Duchenne muscular dystrophy: A
reappraisal and comparison with spinal muscular atrophy. Neuromuscular Disorders 2, nos.
5/6: 3718.
Booth, T. 2004. Inkluderingsha
˚ndbogen (The Inclusion Handbook, not available in English).
Copenhagen: Danmarks Pædagogiske Universitet.
Bø, I., and M. Schieoe. 2007. Sosiale landskap og social kapital. Innføring i nettværkstenkning
(The social landscape and social capital an introduction to network training, not available
in English). Oslo: Universitetsforlaget.
Capacent. 2009. Uddannelsesresultater og -mønstre for børn og unge med handicap (Educational
results and patterns for children and young people with a disability, not available in
English). Copenhagen: Capacent.
Catlin, N., and J. Hoskin. 2006. PPUK learning and behaviour toolkit for Duchenne muscular
dystrophy. London: PPUK.
Center for Ligebehandling af Handicappede. 2005. Overgang fra grundskole til ungdomsud-
dannelse (Transition from primary and lower secondary school to upper secondary school,
not available in English). Copenhagen: Center for Ligebehandling af Handicappede.
Center for Ligebehandling af Handicappede. 2010. Notat on faglighed i specialskoler og
specialklasser (Note about professional competences in SEN schools and SEN classes, not
available in English). Copenhagen: Center for Ligebehandling af Handicappede.
Cornwall, J. 1996. Choice, opportunity and learning. Educating children and young people who
are physically disabled. London: David Fulton.
Danish Ministry of Education. 2004. Lov om ungdomsuddannelse for unge med særlige behov.
(The Danish act on upper secondary education for youths with special needs, not available
in English). Retsinformation. https://www.retsinformation.dk/Forms/R0710.aspx?
id25361.
Ejrnæs, M. 1992. Æblet falder langt fra stammen (The apple falls far from the three, not
available in English).Copenhagen: Fremad.
Gielen, A.C., and E.M. McDonald. 1997. The PRECEDE-PROCEED Planning Model. In
Health Behavior and Health Education. Theory, Research, and Practice, ed. K. Glanz, F.M.
Lewis, and B.K. Rimer, 35983. San Francisco: Jossey-Bass Publishers.
Greve, J. 1993. Drenge med Duchennes muskeldystrofi om forudsætninger undervisning
fritid (Boys with Duchenne Muscular Dystrophy about conditions education leisure
time,not available in English). A
˚rhus: Muskelsvindfonden.
Hinton, V.J., D.C. De Vivo, N.E. Nereo, and E. Goldstein. 2000. Poor verbal working memory
across intellectual level in boys with Duchenne dystrophy. Neurology 54, no. 11: 212732.
Høgsbro, K., B. Kirkebæk, S.V. Blom, and E. Danø. 1999. Ungdom, udvikling og handicap
(Youth, development and disability, not available in English).Copenhagen: Samfundslitter-
atur.
Højberg, A.-L., and B.F. Steffensen. 2008. Developing and maintaining of user-dened
personal competencies among young adults with congenital physical disability. Develop-
mental Neurorehabilitation 11, no. 3: 22535.
Jensen, U.H., and T.P. Jensen. 2005. Unge uden uddannelse. Hvem er de, og hvad kan der gøres
for at fa
˚dem i gang (Youths without an education. Who are they and what does it take to get
them started?, not available in English). Copenhagen: Socialforskningsinstituttet.
Kirkebæk, B. 2009. Det almenpædagogiske og det specialpædagogiske hvorfor der stadig er
behov for en specialpædagogisk faglighed (Mainstream and special pedagogy why there is
still a need for special pedagogic expertise). In Specialpædagogik i skolen en grundbog
146 A.-L. Højberg and J. Jeppesen
(Special pedagogy in school an introduction, not available in English), ed. S. Tetler and
S. Langager, 6375. Copenhagen: Gyldendal.
Krog, T. 2009. Et aktivt liv med de samme muligheder som andre (An active life with the same
possibilities as others, not available in English). Aarhus: Muskelsvindfonden.
Malterud, K. 1996. Kvalitative metoder i medicinsk forskning. En innføring (Qualitative
methods in medical research. An introduction, not available in English). Oslo: Tano
Aschehoug.
Moos, L., P. Fibæk Laursen, M. Mottelson, and C. Jørgensen. 2006. Inklusion I praksis
kommunal skoleudvikling i Randers (Inclusion in practice development in school practice
in Randers municipality, not available in English). Frederikshavn: Dafolo.
Muskelsvindfonden. 1996. Muskelsvind hos børn en bog for forældre til muskelsvindbørn
(Muscular dystrophy in children a book for parents of children with muscular dystrophy,
not available in English). A
˚rhus: Muskelsvindfonden.
Rahbek, J., B. Werge, A. Madsen, J. Marquardt, B.F. Steffensen, and J. Jeppesen. 2005. Adult
life with Duchenne muscular dystrophy: Observations among an emerging and unforeseen
patient population. Pediatric Rehabilitation 8: 1728.
Riviere, J., and R. Lecuyer. 2002. Spatial cognition in young children with spinal muscular
atrophy. Developmental Neuropsychology 21, no. 3: 27383.
Sejersen, T., J. Jakobsen, T. Løvlie, R. Melsom, I.L. Peterson, C. Aashamar, H. Langsholt,
et al. 2003. Scandinavian Consensus Programme on Duchenne Muscular Dystrophy. Aarhus:
RehabiliteringsCenter for Muskelsivnd. http://www.rcfm.dk/leadmin/rcfm_ler/dokumen-
ter/DMD_ENG.pdf
Skogen, K. 2004. Innovasjon i skolen, kvalitetsutvikling og kompetanseheving (Innovation in
school, boosting quality and competences, not available in English). Oslo: Universitetsfor-
laget.
Sloth, B. 2005. Folkeskolens rummelighed belyst gennem praksisforskning (Inclusion in
Danish primary and lower secondary school illustrated through practice research, not
available in English). Ringkøbing: Ringkøbing Amt.
Tetler, S. 2000. Imellem integration og inklusion: Om nødvendigheden af at udvikle
rummelighedens didaktik (Between integration and inclusion: About the necessity of
developing accommodating didactics, not available in English). København: Danmarks
Lærerhøjskole.
Tetler, S. 2008. Historien bag begrebet den inkluderende skole(The history behind the concept
The including school). In Den inkluderende skole en grundbog (The including school an
introduction, not available in English), ed. Rasmus Alenkær, 3 1 46. Copenhagen:
Frydenlund.
Tetler, S., and S. Langager. 2009. Specialpædagogik i skolen en grundbog (Special pedagogy in
school an introduction, not available in English).Copenhagen: Gyldendal.
von Gontard, A., M. Backes, C. Laufersweiler-Plass, P. Melchers, G. Lehmkuhl, and S.
Rudnik-Schoneborn. 2002. Intelligence and cognitive function in children and adolescents
with spinal muscular atrophy. Neuromuscular Disorders 12, no. 2: 1306.
Wicksell, R.K., M. Kihlgren, L. Melin, and O. Eeg-Olofsson. 2004. Specic cognitive decits
are common in children with Duchenne muscular dystrophy. Developmental Medicine &
Child Neurology 46: 1549.
Yeo, M., S. Berzins, and D. Addington. 2007. Development of an early psychosis public
education program using the PRECEDE-PROCEED model. Health Education Research 22,
no. 5: 63947.
Scandinavian Journal of Disability Research 147
... Digitalization of the society also affects the parents whose children have disabilities. Højberg and Jeppesen [3] found out that parents of children with disabilities benefitted from virtual networking. ...
Article
Purpose To provide evidence-based guidance specific to allied health and nursing practice for the assessment and management of individuals with Duchenne muscular dystrophy (DMD). Materials and methods Thirteen key focus areas were identified in consultation with health professionals and consumer advocacy groups. A series of systematic literature reviews were conducted to identify assessment and management strategies for each key focus area. A consensus process using modified Delphi methodology, including an Australia-New Zealand expert consensus meeting, was conducted. Recommendations underwent consultative review with key groups before being finalised and prepared for dissemination. Results This clinical practice guideline (CPG) generated 19 evidence-based recommendations, 117 consensus-based recommendations and five research recommendations across the 13 focus areas to inform allied health assessment and management of individuals with DMD. Conclusions The resulting recommendations can be used in conjunction with existing medical CPGs to improve, standardise and advocate for allied health and rehabilitation care in DMD. The process used here may be useful for the development of CPGs in other rare diseases. • Implications for rehabilitation • Implementation-ready evidence-based statements to guide clinical care of individuals with DMD are provided with the potential to improve participation, function in the community and quality of life. • A model for developing best practice statements for other rare neurological diseases is described. • Allied health and nursing health professionals should focus research efforts to generate quality evidence to support rehabilitation practice.
Conference Paper
Full-text available
The changing age structure of population, with its growing number of ageing people, is a worldwide phenomenon among industrialized countries, and Finland is not an exception. This has implications for swiftly rising healthcare and social welfare costs, but also for new type of demand in related services, and thus creates business opportunities for Finnish know-how. Through qualitative semi-structured interviews, this research builds an understanding of the desires, needs, and challenges that the ageing people have in their every-day life and especially in their use of digital technology and different kinds of digital services. This will further provide insight into the service creation for the needs of elderly people in Finland. The results presented in this paper are part of a larger research project, of which this paper represents the pilot study phase.
Conference Paper
The changing age structure of the population, with its growing number of ageing people, is a worldwide phenomenon among industrialized countries, and Finland is not an exception. This has implications for swiftly rising healthcare and social welfare costs, but also for a new type of demand in related services, and thus creates business opportunities for Finnish know-how. Through qualitative semi-structured interviews, this research builds an understanding of the desires, needs, and challenges that the ageing people have in their every-day life and especially in their use of digital technology and different kinds of digital services. This will further provide insight for the service creation for the needs of elderly people in Finland. The results presented in this paper are part of a larger research project, of which this paper represents the pilot study phase.
Article
Full-text available
Success in visuospatial tasks has often been demonstrated in teenagers with spinal muscular atrophy (SMA). However, what has been tested in these studies, with the Wechsler Intelligence Scale for Children-Revised (Wechsler, 1974) performance scale, does not deal with the spatial capacities that co-occur with the advent of self-produced locomotion. Indeed, various studies have shown that occurrence of locomotion in infancy is correlated with the development of visuospatial cognitive competencies, suggesting that locomotor experience might play a central role in spatial development, especially in the realm of manual search for hidden objects. It is thus of interest to assess spatial search skills in SMA young children suffering total deprivation of locomotor experience. Twelve Type-2 SMA children with a mean age of 30 months were compared with controls with respect to their spatial search skills in a memory-for-locations task. In this search task, hiding containers were rotated 180 degrees before search was permitted. The performance obtained with the SMA group did not differ from that obtained in the healthy control group. SMA patients searched correctly for a hidden object in the 3-choice search task. Locomotor impairment does not appear to be a key risk factor for dramatic slowing down or deviation in the development of spatial search skills, as assumed by some authors. Further research is needed to identify the alternative pathways to normal spatial development that are used by SMA young children.
Article
Full-text available
The knowledge of adult life with Duchenne muscular dystrophy (DMD) is sparse. The purpose of this study was to review existing information and describe body functional, social participatory and quality of life profiles of the ordinary adult Danish DMD patient. Sixty-five study subjects aged 18-42 years were included in a cross-sectional survey based on data from a semi-structured questionnaire comprising 197 items. The ordinary adult DMD patient states his quality of life as excellent; he is worried neither about his disease nor about the future. His assessment of income, hours of personal assistance, housing, years spent in school and ability to participate in desired activities are positive. Despite heavy immobilization, he is still capable of functioning in a variety of activities that are associated with normal life. He lacks qualifying education and he is in painful need of a love life. The frequency of pains is surprisingly high; nearly 40% has pains daily. The nature, magnitude, consequence and possible cure of these reported pains must be scrutinized. Parents and professionals, paediatricians not the least, must anticipate in all measures taken that the DMD boy grows up to manhood and will need competences for adult social life in all respects.
Article
In order to clarify cognitive functions in Duchenne muscular dystrophy (DMD), we performed a new controlled neuropsychological study. IQ (WISC-R), verbal skills (fluency, confrontation naming and syntax comprehension) and memory abilities (BEM) were studied in two matched groups; 24 DMD children and 17 spinal muscular atrophy (SMA) children aged 12-16 yr. A significant difference appeared between the DMD and SMA patients: only in the DMD group were there significant disabilities in certain specific functions and normal scores in others. Despite similar education, the DMD children more often had significantly greater learning disabilities. There were more DMD left-handers. Verbal IQ was significantly low whereas performance IQ was at a normal level. DMD children also performed poorly in reading tasks and in some memory functions such as story recall and verbal recognition. Specific cognitive disabilities in certain DMD children, not seen in SMA children, suggest a relationship with a DMD genetic disorder.
Article
To determine whether all boys with Duchenne muscular dystrophy (DMD) have a similar verbal and memory profile of skills, or whether only a subset is affected, and to determine whether the weak areas in their profile are substantially different from a control group. Performance of patients with DMD on neuropsychological tests of verbal and memory skills was examined in two ways. Standardized test scores for 80 boys with DMD (estimated IQ range, 70 to 160) were ranked individually from worst to best, and the individual rankings were compared across the group using Friedman rank analysis. Additionally, performance of 41 boys with DMD was compared with that of their sibling control subjects of similar age and estimated IQ using multivariate analysis of variance. Individual cognitive profiles were significantly similar among the subjects with DMD, such that for most subjects digit span, story recall, and comprehension were the tests on which each performed most poorly. This finding remained true regardless of whether they were of high or low intellectual function. In contrast, no significant cognitive profile was found among their sibling control subjects, and when compared with their siblings, the DMD group scored significantly more poorly on digit span, comprehension, and story recall, but not on other verbal and memory measures. Boys with DMD have a specific cognitive profile, regardless of their general level of cognitive function. Specifically, boys with DMD performed more poorly on tests requiring attention to complex verbal information than they did on other verbal or memory measures. The possibility that the missing dystrophin brain products may contribute to selective cognitive processing is considered.
Article
Spinal muscular atrophy is a chronic disease characterised by loss of motor function. The aim of the study was to analyse cognitive functions in a large group of patients with spinal muscular atrophy. It was hypothesised that their intelligence is comparable to controls, but not above average as previously postulated. Ninety-six children and adolescents with spinal muscular atrophy I-III, aged 6.0-18.11 years, 45 non-affected siblings and 59 healthy, matched controls were examined with one- (CPM/SPM), as well as multi-dimensional intelligence tests (Kaufman-ABC; Wechsler tests). The mean IQ measured with the CPM/SPM tests was 109.6 for the spinal muscular atrophy group, 107.3 for the sibs and 104.1 for the healthy controls (no significant difference). In the older children and adolescents (SPM only) the mean IQ was significantly higher for the spinal muscular atrophy patients (109.6) than for the controls (95.4). The standard score in the 'mental processing composite' scale of the Kaufman-ABC was identical in the spinal muscular atrophy group and controls (103.8). The cognitive profile was relatively homogeneous. However, the older children and adolescents did have a significantly higher verbal IQ (113.8) than controls (104.6) in the Wechsler tests. There were no significant differences in any of the tests among different grades of severity (spinal muscular atrophy types I-III). It can be concluded that children and adolescents with spinal muscular atrophy have a general intelligence in the normal range. By adolescence, environmentally mediated aspects of intelligence are higher in patients with spinal muscular atrophy. It could be speculated that the development of cognitive skills and knowledge is a creative way to compensate the many restrictions due to their physical handicap.
Article
A neuropsychological assessment was conducted to study cognition, with emphasis on memory, information processing/learning ability, and executive functions in boys with Duchenne muscular dystrophy (DMD). A group of 20 boys with DMD, aged 7 to 14 years (mean age 9 years 5 months, SD 2 years 2 months), was contrasted with 17 normally developing age-matched comparison individuals, using specific neuropsychological tests (Block Span, Digit Span, Story Recall, Rey Auditory Verbal Learning Test, Rey Complex Figure Test, Spatial Learning Test, Verbal Fluency, Trail Making Test, Tower of London, Memory for Faces, and Raven's Coloured Progressive Matrices). The DMD group performed significantly worse on all aspects of memory, learning, and executive functions. There was no significant difference in general intellectual ability between the two groups. Analyses of group differences indicate that problems in short-term memory are the most apparent, suggesting specific cognitive deficits. The differences between the groups were similar for both verbal-auditory and visuospatial tests, thus contradicting the idea that cognitive deficits are related to type of stimulus presented. It is concluded from this study that short-term memory deficits might play a critical role in the cognitive impairment and intellectual development seen in those with DMD.
Article
Early diagnosis and treatment are recognized strategies to reduce the long-term functional effects of chronic diseases, including psychotic disorders such as schizophrenia. Treatment may be delayed if youth, young adults and parents are not aware of the early signs and symptoms of psychosis, the need for early diagnosis and treatment and where and how to get help. This article describes the use of the PRECEDE component of PRECEDE-PROCEED model as a conceptual framework in the development of an early psychosis public education program's objectives designed to meet the learning needs of the target population (youth and young adults ages 15-30 years and their parents). The PRECEDE framework provided a strong conceptual model in the program's planning.
Article
Outcomes from a developmental instructional training course for youths with congenital physical disability have been investigated for the purpose of clarifying whether or not the participants' personal competencies in terms of living an independent life were developed and whether or not these competencies were maintained after termination of the project. In the course of the intervention, there was focus on user involvement and each participant defined his own occupational performance problems, articulated specific goals for the intervention and evaluated the results by means of the Canadian Occupational Performance Measure (COPM). Eight young adults participated in the course from 16-26 months with a follow-up evaluation 10-20 months later. Changes in COPM scores on performance and satisfaction indicate that the participants developed personal competencies and that it was possible to maintain some of these competencies after completion of the course.