Transcript Slide 1

FACILITATING PARTICIPATION IN
CHILDREN WITH
4-LIMB CEREBRAL PALSY
or
Understanding your diagnosis –
does it matter?
A qualitative study of
parents’ & professionals’ opinions
Research Team
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Nicky Wood, Consultant Clinical Psychologist,
EKHUFT
Marian Nairac, OT, Team Coordinator School
Age Therapies Team, Kent Community Health
Trust (KCHT)
Kerynne Thompson, Undergraduate Student
Psychologist on Placement, UKC
Freidl Van Vuuren, SLT, Kent Communication &
Assistive Technology Service (Kent CAT), KCHT
Becky Judge, SLT EKHUFT
Background
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Emerged from issues/questions from clinical
practice re participation during therapy and other
activities
Nothing currently available specific to 4 limb CP
Resources we have found involve children with
speech
Ideas – Marian
Research background – Nicky
Data collection, write up – Kerynne
With wider consultation and expertise from
project team
Clarifying terms
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Cerebral palsy (CP) one of most common causes of
childhood disability 2.5 per 1000 births (Stanley et al. 2000)
Children included in the study had 4 limb involvement and
limited or no speech.
Children included in the study had a Gross Motor Function
Classification System (GMFCS) of IV or V and a Manual
Ability Classification System (MACS) of IV or V
The International Classification of Functioning, Disability and
Health (ICF) (WHO 2001), participation is defined by an
individual’s involvement in life situations and environmental
factors. When such factors are found to have a positive
influence on participation, they are termed ‘facilitators’;
negative influences are termed ‘barriers’
Participation
 C&YP
with CP have significant barriers to
participation in education, personal care and
recreation, and participate less than their
non-disabled C&YP (Parkes et al, 2010)
 To be effective self-advocate need to know
yourself; research findings that C&YP have a
lack of understanding about their disability
and its impact on their lives (Abernathy &
Taylor, 2009; Jones, 2006)
What do C&YP with CP know about their diagnosis
and prognosis?
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C&YP with physical disabilities think they may outgrow their
impairment (Connors & Stalker, 2007)
These C&YP can develop erroneous ideas to make sense of
their circumstances – can lead to self-blame and guilt (Jones,
2006)
These impact self-esteem; can lead to long-term difficulties and
confusion about disability. Also has implications with regard to
realistic decision making and having obtainable future goals
Learned helplessness (LH) - individuals who have others make
too many life decisions for them can become passive and
develop learned helplessness (Abernathy & Obenchain, 2003;
Seligman, 1975)
Young adults with LH can have unrealistic appraisal of their
abilities; denying disability. Although non-disabled individuals can
also have unrealistic expectations. Need to develop accurate
sense of self to strive for reachable goals (Zetlin &
Hosseini,1989)
How do they know about their diagnosis?
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Parents/carers take responsibility of advocating; are often the main source of
explanation regarding C&YP impairments
…but not much discussion within families. Some parents express dread at
being asked for explanations, can give general reasons such as child is
‘special’ or it was ‘God’s plan’. (Connors & Stalker, 2007)
Only in some cases did they explain that impairment was due to an accident
or illness around birth; though still quite vague explanations
Sometimes role had been delegated to teachers, but research suggests that
many remain unskilled or not confident in the task
Research into specific activities and discussions that teachers do in class to
increase C&YPs understanding. Results show lack of communication
between students and teachers regarding disability Abernathy & Taylor
(2009)
Central idea: enabling C&YP to access information re their
disorder is empowering, they can make informed decisions
regarding their lifestyle and welfare, including opportunity to
manage their personal needs = participation increase
Aims of Research?
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Overarching aim – the need to do something about this lack of
understanding, produce something to address this need, esp necessary
with C&YP with CP with no functional speech
Design is qualitative and exploratory, using topic guide, open-ended
semi-structured interview format
Primary:
To identify needs of C&YP regarding information about their diagnosis
and prognosis
To get adults’ ideas about what might be useful in terms of a resource
Secondary: develop an appropriate resource to aid C&YP with CP in
understanding their condition
Areas interview covered:
The extent to which C&YP understand their diagnosis and prognosis
Their understandings of health care & interventions they receive
Barriers in receiving health care or education due to lack of
understanding of their condition
What adults feel is needed to address these issues
How such a resource might be presented and used
Participants
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Inclusion criteria
C&YP with 4 limb CP
Limited or no functional speech
Assumed unimpaired cognition
Service users within the hospital trust
Primary school-aged children:3 boys,1 girl aged 6-10 were identified by
members of the research team
Children all using AAC (Augmentative and Alternative Communication)
supports. 4 children - all wheelchair users who use eye pointing
communication books, communication cards and/ or switches and eye
gaze to access communication
Pragmatic sampling - capture parental and professional opinion re
needs of a particular subset of children, rather than a statistically
representative sample
Parents contacted by letter & info sheet asking them to opt in. Parents
asked to nominate professionals to interview
11 participants: 4 mums, 5 therapists; 2 Teaching Assistants
Been working with the children identified for 1-6 years
Data
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All interviews about 30 mins
All interviews audiotaped and transcribed
Analysed using Grounded Theory (Glaser & Strauss, 1967)
Groups data into themes reflecting participants’ opinions,
thoughts and feelings
Inter-rater reliability
First 5 interviews were independently analysed by 2
researchers
Initial themes identified by each independently
Initial themes compared and assessed for consistency
Initial themes were further developed, refined, discussed by 3
team members across latter transcripts
Thematic framework for analysis identified
Framework was applied to each transcript
Themes grouped as necessary
Results – What we found
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Qu: What do you think X understands about his/her condition?
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Overarching theme: Not thought about it much at all and a bit
thrown by the question!
Across topic areas and questions. Adults were able to then go on and
talk about why and talk about their thoughts re what children knew and
how they came to know it
“I don’t know, I’ve never been asked that question, so it’s quite
tricky to be answering” (P3)
“Yeah, that’s a hard one. Don’t know, really don’t know” (P5)
“I haven’t got a clue” (P10)
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But many felt it was an important issue that they perhaps should have
given more thought to
“That’s terrible, we haven’t –” (P3)
“It’s good to raise this sort of awareness and whether X does have
an understanding because I hadn’t considered it” (P7)
Child’s Understanding of Their Condition cont.
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Theme: Communication Difficulties Major barrier to adults being unsure.
Often making assumptions as to to the child’s understanding.
“I could only guess or surmise…” (P2)
“Probably because his communication isn’t good so we’ve never even
asked the question” (P3)
Theme: Assumed Limited Understanding. Due to the limitations of
having CP, adults thought C&YP had basic awareness of their condition
“... he knows it affects the way his body controls his arms and his
legs” (P1).
“he understand that there’s things he can do, things he can’t do,
things he finds harder” (P3)
Reported some conversations, but no understanding of complexity:
“…we’ve said that he was poorly when he was first born and there
were a few problems and he had to stay in the special care unit” (P1).
“…we’ve said it’s come from brain damage but what he actually
comprehends of that and fully takes in, we’re not sure” (P5)
Child’s Understanding of Their Condition cont.
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Theme: Knowledge Due to Difference from Other Children 3/4
were in mainstream, so diffs to typically developing peers are clear.
Majority had sibs
“…she knows that she’s in a chair, she knows that she’s not
moving the same as other people” (P8).
 “…he can see what’s around him that he’s not able to get up and
walk like the other children […] and he’s not quite the same as
his little sister” (P7)
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Theme: Lack of Sureness about Future. Adults reported not being
sure re C&YP’s understanding of future (n=6)
“She has regular physio, she has a walking frame so in some
respects, you can see where she would think ‘is this not going
to change over time?’” (P11).
 “Although we’ve never said that ‘you’re going to talk’ or
anything like that, I think he still thinks that he will one day.”
 “She’s going to be a physiotherapist, that’s what she’s put down
that she want to do […] and that’s sometimes when you think
‘has she realised?’”
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How Had Adults Communicated With Child About CP?
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Overarching Theme: Limited Communication Regarding CP. Adults
reported having not really communicated with children about their condition
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Theme: Conversations When needed. The majority (n=9) reported that
communication tended to happen when needed, e.g .during therapy or class
 “… ‘if you don’t sit properly in your chair, your back will hurt when you get
older’…” (P2)
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Reports of not wanting to burden children with “too much detail […] that "might
frighten or upset [them]” (P1) and were aware of need to be sensitive. " I might
just open a can of worms” (P2)
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Theme: Age as a Barrier for Discussion. ?best age to do this:
“I probably wouldn’t discuss that until they got maybe a little bit
older…” (P9)
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Also emotional maturity; would C&YP be able to handle info?
“He can make mountains out of molehills so I don’t want to say
something that’s going to have a completely unexpected
consequence” (P1)
"…he’s quite emotionally immature so sometimes he’ll get cross
about the slightest little thing” (P5)
How Had Adults Communicated With Child About CP?
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Theme: Limited Resources. Lack of communication
due to lack of relevant literature and help. Some
mentioned resources e.g. the Motability magazine,
the Scope website & Mr. Tumble
 None could id. a resource for C&YP with CP,
however a storybook was mentioned“…about a
child in a wheelchair…” (P5) to which there
seemed to be different responses from children:
 “…he really enjoyed that and wanted to read it
several times” (P5).
 “…it wasn’t that great… [it didn’t have] much of a
good story, it didn’t capture him” (P3)
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Theme: Concern re Whose Role it is to Discuss
CP. majority (n=5) of professionals felt not their role.
They assumed it was parents’ role
Barriers to Participation
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Theme: Practicalities of Having 4 limb CP. Need
for adult support to facilitate participation. E.g.
Physical support, supervision and someone who is
familiar with the C&YP communication style and any
AAC.
“He’s very limited with participation it’s only what’s
provided for him what he can do” (P7)
“…for him to go to after school club, we’ve had to
specifically arrange one-to-one support for
him…” (P1).
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Theme: Intra-child factors.
Emotional/sensory/physical factors beyond having
the condition itself, yet in their own right limit the
child’s participation
Barriers to Participation
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Sub-themes:
Frustration and upset; “…he’ll get cross and then it
just crescendos into this big major tantrum that then
stops him from doing other things.” (P5)
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Anxiety; of the unfamiliar and anticipatory anxiety.
“…he can be quite fearful of new situations and you
have to stage manage some of those things” (P1)
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Sensory Issues. “He’s quite sensitive to noise …
what he tends to do is anticipate that in new
situations there’s going to be a noise that he doesn’t
like… a couple of years ago, we took him to a circus
and that was fine to start with but some noise set
him off and I had to take him out and then we sat
watching the circus from the door, the tent” (P5)
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Also low motivation, and fatigue.
What a resource should look like
If something were available to help C&YP understand their
condition what would it look like?
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Book format (n=7) simple to use, portability and
also its ready availability
“He likes the computer but he has to be much
more supported to use a computer. Whereas to
use a book you could get it out at any time, you
can use it in a bigger variety of settings” (P4)
 Technology based (n=6) good storage and flexible
“…that would allow something to be stored, to
have photographs in, and to be a really
personal resource…” (P6)
What a Resource Should Look Like
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Normalised: be like other mainstream resources:
“Something that would come off a shelf and would be read
along with other books. I don’t think it [needs to be]
announced as a special needs book” (P4)
“…something that can also be read by other people who
are interested and to whom it affects – for example, the
rest of the family, the class, and things like that. So it
needs to be not necessarily directed specifically at X”
(P1)
 Positivity and Sensitivity: +ve aspects should be there:
“…real positive; this is what you can do, just because
you’re in a chair, just because you can’t do this… or
people think you can’t, you can achieve a lot of things”
(P8)
What Should be in the Resource?
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Explanation of CP and of Cause
“…‘what is CP?’ because some children with
CP are completely mobile, and without a
really good eye you might even not pick
them out or you have children like X who are
totally dependent or some children who are
even more affected than X” (P 2)
 Prognosis and life development
“When she gets older, hopefully we’ll be able
to get somewhere where she can live, her
own living area, independent, employ her
own people to look after her” (P8)
“Real actual people talking about maybe their
childhood and what they’ve achieved” (P6)
What Should be in the Resource?
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Understanding of treatments
 Facilitation of choice making and decision taking
 Objectivity and independence of resource
“I just think it would be really nice for X to be in control
of something that’s not being done to X, not being
read to X, not being put upon X…” (P11)
or hearing about their condition in a tangential way:
“He might come across other children in senior school
who know a lot more than he does… you don’t really
want the first thing he understands about it to come
from another teenager” (P 2)
Conclusions & Reflections
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Surprise at some of the findings:
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Central issue - Many participants given little thought to the C&YP’s
understanding of their condition, but during interviews recognised this as
a relevant issue
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Our initial conceptions vs actual findings: we assumed lack of
understanding was a key issue as barrier to participation, but participants
identified practicalities of the condition itself as barriers e.g.
communication and physical difficulties
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Most reported not doing much to inform C&YP about their condition and
identified barriers to this e.g. communication. When this did happen often
it was in the form of ‘ad hoc’ conversations. not systematic info. gaps in
info, no chance to address questions ; no way to determine just how much
information children may or may not want; no way check understanding
and consequences of receiving this information
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Lack of relevant resources to facilitate discussion was an identified
issue. Indicating need for resource
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Adults were generally enthusiastic regarding the development of a
resource. Differing ideas about what this should look like
Next Steps
 Produce
prototypes
 Focus group responses to prototype
 New student starting September 2013
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