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Changes in parents' concerns

Moving from child to adulthood CHILD

Background to the study

Method Parents concerns at initial childhood assessment were examined. Parents later completed a questionnaire to examine concerns about their child as a young adult. A coding dictionary was undertaken to extract key themes (Kappa inter-rater reliability = 0.84; p<0.001).

E moti on & P sych

60 50

E ducat i on EF

40

%

The Dyscovery Centre is a trans-disciplinary centre for children and adults with developmental disorders based in Wales, UK; running since 1997. Referrals come from across the UK. Over the past 12 years children have been seen with DCD and have then be seen as adults, allowing a longitudinal perspective to be gained.

Soci al

30 20

M otor

10

Futur e

28 parents of 28 children seen in the previous 10 years. Gender of children: 75% male; 25% female. Mean age at initial assessment = 11.4 years; (range = 8-15 years; SD = 2.02). Mean age at review = 18.4 years; (range = 16-23 years; SD = 1.86).

Wr i ti ng

0

M aths ILS

A rea o f co ncern

Readi ng

HOME Concerns as a young adult

Do you have any c onc erns about your c hild’s everyday func tioning at hom e and at s c hool/work /univers ity? 60% reported c onc erns at hom e 64% had c onc erns i n educ ation/work

60

60

50

Em o tio n & P sych

50

EF

40

ILS

40

S o c ia l

30

So cial

30

E m o t io n & P s yc h

20

EF

E d u c a t io n

10

Educatio n

20 10

W rit in g

%

%

EDUCATION/W ORK Concerns as a young adult

0

0 A r e a o f c o nc e r n

A rea o f co ncern

THEMES Social

CHI LD - Peers do not tolerate her inability to play - Inadequate social and life skills

HOM E - [He] has few friends and is very solitary - No social life outside home

Executive Functioning (EF)

Emotion & Psychological

Independent living skills

EDUCA T IO N/ W ORK - Whilst he has been successful at [college] this first year, organisation and prioritising are still a concern

HOM E - Needs time to organise himself

CHI LD - Inability to cope under time pressure - He is hampered by the difficulty he finds in copying correctly

EDUCAT IO N/W ORK - She still lacks social skills which permits her getting on with her peers. She has no close friend - Sometimes does not want to go [to college] because of what other students say to him

HOM E - He is often depressed and withdrawn, often feels he is a failure at everything

CHIL D - When asked by the teacher where he saw himself in class he replied bottom. Obviously he isn’t - Sensitive to perceived failure, self confidence [has] diminished significantly

CHIL D - Persistent dressing problems - Stays close to her parents when out and travelling

EDUCAT IO N/ W ORK - Low self esteem, lacks confidence - Does not appear to be coping

HOM E - Personal hygiene is still poor. Although no longer living at home….he constantly requires support with numerous issues

STABILITY In some individuals, parent concerns did not change over ti me and concerns in adulthood mirr ored the initial concerns in childhood.

Case Study B

Case Study A THEN at 14 years

THEN at 10 year s

DCD (cutlery, writing) and receptive language difficulties (not picking up non verbal cues). Hated team games. Enjoyed dance.

Feels under pressure at school and has difficulty making friends. Peers do not tolerate her inability to play. Difficulty doing PE and games. Dressing, tying shoe laces, writing.

NOW at 22 years:

NOW at 18 years

HO M E : Finds it very difficult to hold her own in family conversations. W O RK : Relating to people at work. Confidence. She still has significant problems compared to peers. Still has difficulties with: Motor difficulties: writing. Socially: lacks confidence, difficulties turn taking. Executive Functioning: finding way around new buildings, managing money. Medically: stress incontinence.

HO M E: Needs lots of support. Lacks confidence. Anger issues. Started and stopped driving. EDUCAT I O N: Hates groups, feels everyone is looking at her. Low self-esteem. Lacks confidence. Mental health: anxiety, agoraphobic and obsessive. Still has difficulties with: Motor difficulties: writing.

CONCLUSIONS

a re nt s are t h e o bv i o us i nf or m ant s and ob ser v er s of t h ei r chi l d’s beh av io ur . S t ab i li t y in con cer ns o v er t i m e i s a pp ar ent i n so m e i nd iv i dua l s. Despi t e al l chi l d ren h av i n g a di ag no si s of DCD n chi l dh ood , t h ei r di f f ic ul t i es a s youn g a du lt s we re m or e p er v asi v e i ncl u di ng soci al a nd e x e cut i v e f u nct i on i ng di f f i cul t i es. is app ar en t t ha t wha t con cer ns p ar en t s as t h ei r chi l d b ecom es an ad ul t i s t h ei r l ev e l of i nde pen de nce and soci al a bi l i t y as t hi s wi l l i m pa ct on b ecom i ng a com p et en t a du lt . Pa re nt s a pp ear t o be l ess o nce rn ed a bo ut m o t o r ski l l s, ap ar t f r om wr it in g. t er v e nt i on wit h ch i ld re n wi t h DCD sho ul d hav e g re at e r em ph asi s on so ci al an d em ot i o na l f un ct i on in g f ro m a youn g a ge as t h ese can b e se en t o h av e a pe rv asi v e and e ndu ri ng i m pa ct on chi l dr e n wi t h DC hi s i s r ei nf or ced by wor k f rom ano t he r aspe ct o f t h i s st u dy whe re i nt e r v i ews and q uest i on na ir e s wer e gat her e d f rom adu l t s wi t h DCD t he m se l v es.

Contacts Am and a K ir by : am a nd a. ki rb y@ n ewpor t . ac. uk Dav i d Su gde n: D.A.Sugden@education.leeds.ac.uk Li sa E dwar ds: lisa.edwards@newport.ac.uk

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