How do parents experience the Pirate Group

Intervention (CIMT-BITT) for children with unilateral

Cerebral Palsy in the age from 2,5 to 8 years old?

Results of a mirror interview

R. van Thiel Occupational therapist, Sophia Rehabilitation Centre, The Hague, The Netherlands

C. B. Bouwhuis Paediatric Rehabilitation Physician, Sophia Rehabilitation Centre, Delft, The Netherlands

I.T.M. Timmermans Staff member, expert group Cerebral Palsy, Sophia Rehabilitation Centre, The Hague, The Netherlands

Introduction

• The Pirate Group Intervention is a child friendly modified

Constraint Induced Movement Therapy (CIMT) for

children with unilateral Cerebral Palsy (Aarts e.a., 20121).

Children learn by the combination of CIMT and goal

directed task-specific bimanual training (BITT) to perform

bimanual tasks. Short and long term effectiveness has

been proven.

• The Pirate Group Intervention has been developed in The

Netherlands by 'Sint Maartens Clinic, Nijmegen1' and has

been implemented at various rehabilitation centres in

the Netherlands, including at Sophia Rehabilitation

Centre (2012).

• This intervention is a briefly intensive time consuming

program for the children as well as for the caregivers. In

order to get insight into caregivers’ experiences and to

improve quality of care and care process, we performed

a mirror interview.

Methods - Pirate Group intervention

• Pirate Group Intervention (CIMT/BITT) at Sophia

Rehabilitation Centre (October-December 2012) • An 8 week program 3 times a week, 3 hours a day ; 6

weeks (54 hours) CIMT followed by 2 weeks bimanual

training (BiTT) aimed at extending play and self-care

activities. • 6 children (age 5-7 years) participated

Mirror interview

• The mirror interview consisted of an open conversation

with the parents, in the form of a group discussion2 and is

directed by an independent moderator.

• The parents experiences were the topic of the

conversation. The moderator invents a few topics in

advance, which are important to discuss.

• Therapists were present at the interview, but they only

listened to the parents' reports and could not join the

conversation.

• Goal is to gain direct feedback from the parents.

Results

Though the Pirate Group Intervention is an intensive and

time-consuming program, parents looked back positively.

Children used their hand more actively in activities of daily

life. It was visible to the parents that the children had made

more progress by participating the Pirate Group

Intervention than with regular therapy. Commitment and

assistance from family are important to accomplish the

intervention.

Quotes

• “In a period of 8 weeks al lot has been achieved, the

formula is good.

• "The children are made independent."

• "Within eight weeks, my child learned more than two

years of regular therapy."

• "After several weeks my child was more aware of his

disability (left hand does not know what he wants). There

has been not much attention

• "The exercises at home we sometimes experienced as

heavy and in the weekend we did not always have the

time and energy to do it.”

Discussion mirror interview

• There is a limitation of the time. About 2, 5 hours.

• It may be that not all topics are relevant for all parents.

• It is a group evaluation and about personal (private)

experiences, this could be a barrier for some parents to

talk free.

• Since the mirror interview is a formal interview, it might

be a barrier for parents to speak freely. They need an

informal moment with the therapists.

• Some parents cannot forget that de therapists are in the

same room, what makes is difficult to be honest about

the critical points. The setting is important; if the parents

can see the therapist it’s even harder to be honest.

• For some parents it is more difficult to speak up freely,

without limit, in a group.

• The method mirror interview has only existed since 2012

and is still in development. A personal semi-structured in

depth interview is also helpful method.

Conclusion

The mirror interview is a method in order to get insight into

caregivers’ experiences of an intensive time-consuming

program as the Pirate group intervention. Parents recognise

the benefits of the therapy like increased use of the affected

arm and increase in self-care. They experience it as very

intensive period, with difficulty to keep their children

motivated en implement the schedule in daily routine.

However the results at activity and participation level

outweigh the costs. Suggestions will be taken into account.

More mirror interviews will be performed in future in order

to improve quality of care.

References

1. Aarts, P. B. et al (2012), The Pirate Group Intervention Protocol: Description and a Case Report of a Modified Constraint-induced Movement Therapy Combined with

Bimanual Training for Young Children with Unilateral Spastic Cerebral Palsy. Occup. Ther. Int., 19: 76–87. doi: 10.1002/oti.321

2. Mul, M. et al (2009) Mirror interviews, a method for feedback from patients (Original in Dutch: Spiegelbijeenkomsten, een methode voor feedback van patiënten).

Amsterdam AMC; 2nd edition.

The enthusiasm of the team brings a

lot of good and gives satisfactory

results: compliments!

You do not know in advance what to expect, but it's

worth it.

It's Hard to keep motivating your child.