Psychosocial issues for children with Cerebral Palsy

Knowledge DatabaseSlide Presentation for the lecture of: Dido Green Oxford Brookes University, UK

Topic of lecture: Expectations for Therapy and Relationship to Confidence and Competence and Intervention Outcomes for Children with Unilateral Cerebral Palsy

The lecture was given at Beit Issie Shapiros 6th International Conference on Disabilities Israel

Year: 2015

HOPEExpectations for therapy and relationship to confidence and competence and intervention outcomes for children with unilateral cerebral palsy.Dido GreenUnity and Diversity in ActionBIS 6th Conference, Tel Aviv 2015

With thanks to Sophie White, MSc Student, Oxford Brookes Univ. Breathe Arts Health Research

Thank you for this opportunity to share with you some of our work exploring the experience of therapy from childrens perspective. This work began in Israel in 2010 following a project to try and engage children in therapy programmes that their parents did not need to nag them to do.2

They wont sit next to me (at school) as they dont want to catch my disease!Games at school they always chose me last and then the other side gloats when they win.About new Friends P (older boy) because hes grown up and hes OK

I am a one handed boy I dont want to be associated with them.

What do the children say? Are we listening?

Breathe Arts Health Research

Psychosocial factors may influence development of movement efficacy in children with UCP (Curtain & Clarke 2005,Gilmore etal 2010, Skold etal 2007, Green et al 2013), Up to 61% of children with UCP may have persistent mental health problems affecting perceptions of confidence, competence and positivity (Goodman & Graham 1996; Parkes et al 2008). Therapeutic outcomes from interventions for children with UCP are influenced by childrens engagement which may be linked to mastery motivation (Miller et al, 2014).Yet few studies investigate psychosocial factors

Background to current study

Many factors affect upper limb movement development and functional ability of CH. Neurological and physical factors as well as interventions are more widely researched in contrast to psychosocial factors.

However psychosocial factors have been suggested to influence development of movement efficacy in this population and a strong relationship between self-esteem and motor competence has been identified in developmental psychology theories.

The reported prevalence of mental health problems in CH varies but could be as much as 61% as Goodman & Graham found in their study. These mental health problems are likely to persist into adulthood, resulting is profound effects on wellbeing across the lifespan.

A study of mental health problems in children with CP by Parkes isolated the prevalence of difficulties in emotional domains which are directly comparable to perceptions of confidence, competence and positivity, finding 29% of children with such difficulties.

This study will explore the relationship between the perceptions of confidence & competence and movement skill in children with CH

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Aims and ObjectivesA Mixed methods study to:Explore the expectations and experiences of children with UCP participating in an intensive 60 hour day-camp using a magic-themed hand-arm bimanual intensive therapy (Magic-HABIT).Explore the perspectives of children through semi-structured interviews

Breathe Arts Health Research

To explore the effects of a motivationally themed Occupational Therapy intervention program on the perceptions of confidence and competence in CH.

To identify links between the perceptions of confidence and competence and gains in hand skill in CH.

- To identify if severity of hemiplegia or initial degree of positivity are associated with perceptions of confidence and competence.

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Intervention2 week (60 hours) therapy camp for UCP

Integrating magic tricks and performing into Occupational Therapy and the Hand Arm Bimanual Intensive Therapy (HABIT) protocol.

Breathe Arts Health Research

The Breathe Magic Intervention is a 2 week therapy camp for children with hemiplegia.

The camp program following a magic themed Hand-arm Bimanual Intensive Therapy (HABIT) protocol.

The HABIT protocol requires intensive bimanual use of the hands which was achieved through children learning and performing specifically modified magic tricks requiring two handed use.

Tricks were scaled to require increasingly skilled hand movements throughout the two week program. Developing confidence in the performance of skills and perception of ability was encouraged throughout the program. 7

MethodologyChildren participating in Magic camps

Within-study repeated measures design.

Assessments, pre, post camp and 3- month follow-up

Breathe Arts Health Research

Data was available from an ongoing multi-site study by Green et al, which is investigating the effectiveness of a magic themed HABIT protocol and Occupational Therapy (OT) intervention program on upper limb motor competence of CH.

In this study data was collected from Magic camps run between 2011 and 2013 in London and in Tel Aviv Israel.

A within-study repeated measures design was used, collecting data at 3 or 4 time points. Before, after, 3 months and 6 months after the intervention.

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Outcome measures The Childrens Hope Scale (Snyder, 1997)Self report of positiveness and resilience6 questions of goal achievement behaviours

Jebsen Taylor Test of Hand Function timed test of grasp and release across 6 tasks.

Childrens Hand Experience Questionnaire (CHEQ) (Skold et al. 2011)

Semi-Structured Interviews with children (&parents)

The data used in this study was originally collected using 3 outcome measures:

Data measuring a childs positivity is from the Childrens Hope Scale. Developed by Snyder et al in 1997, this is a self-rating questionnaire completed by children.

Data regarding hand skill is from the Jebsen Taylor Test of Hand Function. This is a standardised assessment using time taken across 6 grasp and release activities to indicate hand skill.

Data measuring independence in daily bimanual activities and perceptions of confidence and competence is from the Childrens Hand Experience Questionnaire (CHEQ) (Skold et al 2011). 9

29 activities children commonly do in daily life

www.cheq.se Skold et al. 2011

Questions:1) Are the activities performed independently?

2) Are one or two hands are used in the activities?

3) The experience of doing activities according to grip efficacy time taken in comparison to peers experience of feeling bothered

Negative 1----2----3----4 Positive

The CHEQ is designed to capture the childs experience of using the affected hand in bimanual activities.

It is self-rating questionnaire which was completed by children, or by parents for children under the age of 11.

Children are required to rate their experience of 29 common daily activities. That is: how good they feel their grip ability is, the length of time the activity takes compared to peers and how bothered they are by their ability.

Experience is rated on a 4 point scale where lower score are negative and higher scores positive

The questions regarding the childs experience of doing the activity give the data being used in this study to measure perceptions of confidence and competence.10

Sample characteristics2011-2013 (White, 2014)Sample sizeAge months Mean (SD)MACSMean (range)MASMean (range)Behaviour ProblemsMild(opting out) to significant (affecting own + others participation).n=34125.2 (32) 2.1 (1-3)1.9 (0-4)Mild n=10Moderate n=3Significant n=1

SD=standard deviation; MACS=Manual Ability Classification System; MAS=Modified Ashworth Scale;

The data of 34 children has been used in this study. Missing data has been prorated where appropriate.

There was an age range of 7-16 years, with a mean of 10 years 3 months. 61% were boys and 39% were girls.

The sample had Manual ability classification system levels ranging from 1-3 with a mean level of 2.1

The sample had a Modified Ashworth Score range of 0-4 with a mean of 1.9.

13 Children has recognised behavioural difficulties

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Results (White 2014)Hand Skill JTTHFF(2,31) 8.11p=0.001 eta2 0.344

Changes in performanceTotal Speed in Seconds

Independence CHEQ F(2,26) 23.27, p