Crossing the Boundaries: Children

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Crossing the BoundariesChildrens Young
Peoples Research

• The Robert Gordon University
• Health Services Research Group

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Long term outcome for children with
Developmental Coordination Disorder (DCD)
their families

• Dr E Stephenson
• August 2005

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Part of PhD research undertaken through The
Robert Gordon University, in collaboration with
Royal Aberdeen Childrens Hospital

• - completed November 2004

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The wider study investigated

• effectiveness of occupational therapy screening
  assessment in a one-stop clinic (single entry
  point single assessment framework)
• longer term outcome for children with DCD 6
  years after initial assessment
• impact of DCD on families

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Developmental Coordination Disorder (DCD)

• DSM-IV criteria (American Psychiatric Association
  1994)
• Performance in daily activities requiring motor
  coordination substantially below that expected .
• Disturbance significantly interferes with
  academic achievement or activities of daily
  living
• Disturbance not due to general medical condition
• (e.g. cerebral palsy)
• If mental retardation present, motor
  difficulties are in excess of it

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Alternative terms

• Specific Developmental Disorder of Motor Function
  (SDDMF) (ICD-10 World Health Organisation
  1992)
• Criteria similar to DCD, but does not include
  children with cognitive delay
• Dyspraxia
• Used in the UK in a similar generic way to DCD
  SDDMF, mainly in non-medical contexts

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DCD / SDDMF / (Dyspraxia in UK)
Motor (Execution)
Praxic
Mechanical
Postural /- Co-ordination
Post / Co-ord
Praxic
Bilateral Skills Deficit
Gen Praxic Problems
High Level problem
Tone
Postural Responses
Co-ord Control
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Long term outcome for children

• Surveyed via questionnaires completed by parents,
  6 years after initial assessment
• Respondents- 36 families (51 of those
  contacted), but representing 66 of those who had
  replied to a survey 5 years before
• Respondents, therefore, a self-selected group,
  though DCD had been identified on initial
  assessment for ALL of their children

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• One questionnaire, filled in by the child
  herself, was excluded
• Investigation included motor, academic,
  emotional, behavioural and social aspects

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Reported long-term outcomes

• Ages ranged from 10 - 20 years (n35)
• 84 were boys
• High persistence of problems across several of
  the areas investigated
• 80 had persisting problems reported in 3 or more
  areas

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Nature of persisting problems reported

• Motor problems - 80 (n28)
• Academic problems - 77 (n27)
• Emotional problems - 86 (n30)
• Unacceptable behaviour - 43 (n15)
• Social difficulty - 31 (n11)

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Number of areas affected

• 
  (n35)
• All areas - 17 (n6)
• 4 areas - 29 (n10)
• 3 areas - 34 (n12)
• 2 areas - 3 (n1)
• 1 area - 8.5 (n3)

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Link between motor problems other areas

• In children with persisting motor problems
  (n28), 93 (n26) had difficulties in at least 2
  other areas
• In those children with no persisting motor
  difficulty (n7) only one had problems in 2 or
  more areas

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Link between persisting problems initial
assessment findings

• There was no obvious relationship between
  persistence of problems degree, or nature, of
  motor difficulty identified on initial
  assessment.
• However, DCD had been identified on initial
  assessment for ALL of the respondents children.
  56 had pronounced DCD
• In contrast, of the non-respondents children,
  many had alternative primary problems.
• 18 only had pronounced DCD.

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The impact of DCD on families

• Established through in-depth interviews with 12
  mothers
• Areas investigated included perceived effect of
  DCD on families adaptations made educational
  social implications emotional issues

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Profiles of 12 children

• 4 had primary diagnoses other than DCD
• 2 only had DCD in isolation (ie. No
  co-morbidities or co-existing problems)
• this is congruent with current research on
  co-morbidity, and typical of referrals to DCD
  clinics (Kaplan et al 1998 COT/NAPOT 2003
  Dunford et al 2004)

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Key themes emerging from interviews

1. Effect of motor problems on children
2. Impact of childrens problems on mothers
3. Need to fight the system to get services
4. Emotional effect of DCD on children
5. Bullying social issues
6. Impact within the family

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1. Effect of motor problems on children

• Where DCD was the primary diagnosis, 6 of the 8
  children had persisting motor difficulty
• The 4 children with alternative primary
  diagnoses, that included DCD, seemed even more
  profoundly affected
• Functional areas affected in these 10 children
  included PE, sports, playtime activities,
  dressing, eating, writing
• Where motor aspects were maturing, continuing
  effects of earlier failure were described

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2. Impact of childrens problems on mothers

• Two main sub-themes emerged
• a) time commitment b) emotional effects
• All 12 mothers considered time commitment to the
  child with difficulties to be considerably
  greater than for other children
• Mothers described worry, stress, distress, anger,
  frustration, fatigue. Several felt emotionally
  drained, over-protective, guilty
• A degree of guilt was felt by 9 of the 12 despite
  their time commitment

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3. The need to fight the system

• 11 mothers had felt this need
• The perceived need to fight for childrens rights
  seemed to apply particularly to educational
  issues
• Most felt that a degree of support had been
  provided by individual teachers
• 3 mothers also felt they had struggled to obtain
  a diagnosis follow-up therapy

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4. Emotional effect on children

• All 12 mothers described emotional problems in
  their children
• These included anger, frustration, unhappiness,
  distress, depression, low self-esteem,
  embarrassment, shyness
• Opting out behaviours were the result for most
  children
• 4 families had been offered psychiatric help

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5. Bullying social issues

• Long-term persistent bullying was experienced by
  5 children
• For a further 4 children bullying episodes were
  more sporadic
• Half the children chose a degree of self-imposed
  isolation
• For 3 children no social problems were described

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6. Impact of DCD on the family

• Significant effects were reported by all 12
  mothers
• Impact extended to fathers, siblings, in some
  cases extended family members, who made
  adjustments to accommodate the childs needs
• There were often parental differences, resulting
  in separation for 2 couples
• Some mothers felt their husbands to be
  particularly supportive

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Questions that arise

• What are the factors that influence outcome for
  children with DCD?
• Organic v environmental?
• Resilience child, family, community?
• Can we address the high levels of distress in
  mothers, as reported here?
• Early diagnosis?
• Can outcome be predicted?
• Local service provision?

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• Given limited resources (health, education,
  community support), what are the priorities for
  intervention?
• - Multi-agency, single entry point approach to
  assessment?
• - More support locally for families teachers?
• - Provision of direct therapy for children?

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Summary

• DCD is seen as a mild disorder, but children do
  not necessarily grow out of it - - motor
  problems other areas of difficulty persist
• The functional and socio-emotional effects are
  pronounced
• The impact on families is considerable
• Parents perceived need to fight the system for
  resources is of concern

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Finally

• Given high incidence (4.5 - 6) of DCD in the
  child population (WHO 1992 APA 1994 Sugden and
  Chambers 1998), and poor outcome (Rasmussen and
  Gillberg 2000 Hadders-Algra 2002 Stephenson
  2004)
• should services for children with DCD not
  be a higher priority within health care,
  education, the community?

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Long term outcome for children with
Developmental Coordination Disorder (DCD)
their families

• Dr E Stephenson
• August 2005