Crossing the Boundaries:Children’s & Young People’s Research

The Robert Gordon University

Health Services Research Group

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

& their families

Dr E Stephenson

August 2005

Part of PhD research undertaken through The Robert Gordon University, in collaboration with

Royal Aberdeen Children’s Hospital

- completed November 2004

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

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

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

DCD / SDDMF /

(“Dyspraxia” in UK)

Motor (Execution)

Praxic Postural +/- Co-ordination

Mechanical

Gen Praxic Problems

Bilateral Skills Deficit

High Level problem

Tone Postural Responses

Co-ord + Control

Praxic Post / Co-ord

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

• One questionnaire, filled in by the ‘child’ herself, was excluded

• Investigation included motor, academic, emotional, behavioural and social aspects

Reported long-term outcomes

• Ages ranged from 10 - 20 years (n=35)

• 84% were boys

• High persistence of problems across several of the areas investigated

• 80% had persisting problems reported in 3 or more areas

Nature of persisting problems reported

• Motor problems - 80% (n=28)

• Academic problems - 77% (n=27)

• Emotional problems - 86% (n=30)

• Unacceptable behaviour - 43% (n=15)

• Social difficulty - 31% (n=11)

Number of areas affected

(n=35)

• All areas - 17% (n=6)

• 4 areas - 29% (n=10)

• 3 areas - 34% (n=12)

• 2 areas - 3% (n=1)

• 1 area - 8.5% (n=3)

Link between motor problems & other areas

• In children with persisting motor problems (n=28), 93% (n=26) had difficulties in at least 2 other areas

• In those children with no persisting motor difficulty (n=7) only one had problems in 2 or more areas

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.

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

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)

Key themes emerging from interviews

1. Effect of motor problems on children

2. Impact of children’s 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

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

2. Impact of children’s 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

3. The need to fight the system

• 11 mothers had felt this need• The perceived need to fight for children’s

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

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

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

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 child’s needs

• There were often parental differences, resulting in separation for 2 couples

• Some mothers felt their husbands to be particularly supportive

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?

• 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?

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

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?

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

Dr E Stephenson

August 2005