A Descriptive Study of CP

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A Descriptive

Study of CP

Patient’s

Preferences for

Adventures

Judith Lang, BSN,RN,CPN; Lamara Love, BSN,RN,CPN; Sha Clark, LISW-S;

Victoria von Sadovszky, PhD, RN, FAAN

Neither party has

any conflict of

interest to report.

Disclosures

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Purpose

The purposes of this study were:

1. Ascertain what types of adventures

children with CP would like to partake

in friends or by themselves and

2. Examine their reasons for choosing

those adventures.

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Background

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Cerebral Palsy• Most common motor disability in childhood

– 1 in 323 children

– More common in boys than girls

– More common in African American children than White and

Hispanic

• 77.4% will have spastic CP

• 60% have another developmental disability

– 40% intellectual disability

– 35% epilepsy

– Nearly 1 in 4 will have both intellectual disability and epilepsy

(CDC, 2015)

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Living with Cerebral Palsy• Physical

– Mobility (CDC, 2015)

• 58.2% walk independently

• 30.6% limited to no walking ability

• 11.3% hand-held mobility device

– Increased pain (Levy-Zaks, et al., 2014)

• Psychosocial (Dickinson, et al., 2007; Levy-Zaks, et al.; Parkes, et al., 2008)

– Reduced quality of life

– Reduced autonomy

– Increased pain

– Increased depression, anxiety, and agitation

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Interventions to Improve Physical &

Psychosocial Consequences

• Not many evidence-based interventions to

improve physical & psychosocial

consequences

• Mainstreaming and rehabilitation (Skjeldal, et al., 2008)

– Improve physical mobility

– Increased social functioning

– Increased self-esteem

– Increased self-care

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What is not known

• Video gaming (avatars) plus

mainstreaming aid in improving physical

mobility & psychosocial consequences:

– Long-term goal:

• To create story-based, video game that would

increase socialization with peers, independence, and

quality of life

– Short-term goal:

• Ascertain the types of stories or adventures with

which children want to play on a video game

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Research Questions

Among children with CP:1. What are children’s interests in adventures?

2. What adventures were rated the highest?

3. What are the reasons for choosing those

adventures?

4. Are there differences in choice of adventure by:

a) Gender?

b) Ethnicity/race?

c) Level of mobility?

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Methods

SampleN = 67 n (%) M (SD)

Age 7.8 (4.1)

Gender

Boys 35 (50.7)

Girls 32 (46.4)

Ethnicity

Caucasian 33 (47.8)

African American 7 (10.1)

Asian American 4 (5.8)

Hispanic 3 (4.3)

More than 1 ethnic group 3 (4.3)

Ethnicity by larger groups for analyses

Children of Color 36 (52.2)

White 33 (47.8)

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Sample (continued)

Level of Mobility n (%)

Pushed in stroller/wheelchair 23 (33.3)

Walks without assistance 18 (26.1)

Walks with aid 5 (7.2)

Carried by an Adult 3 (4.3)

Propels self in wheelchair 1 (1.4)

Ambulatory

Non-ambulatory (carried, pushed, self-propelled) 27 (39.1)

Ambulatory (walks with or without assistance) 23 (33.3)

Procedure• IRB approval

• Patients recruited from clinic for 5 minute survey

• Verbal consent/assent

• Child, if able, or parent chose from visual board

that replicated questionnaire

• Clinic personnel recorded on questionnaire:

– Which adventure (from list) sounded fun

– Rating of adventures

– Demographic information

• Participants thanked for their time

• Created a form to ascertain:

– Interest

– Rating of “fun”

– Reason for adventure

– Demographic:

• Age

• Gender

• Race

• Level of mobility

• Informed by literature & practice:

– Adventures chosen by assistive

equipment available

– Responses adapted to children with

CP

– Reasons from

Kids We Need Your Help! We are interested in creating stories with special adventures. We would like your help in

choosing the different adventures. Please select from the following adventures. Thanks!

The

Adventure

Are you

interested?

How fun does this

adventure sound?

What is your reason for

picking this adventure?

Hockey

Yes

No

Sounds like fun

It’s new or exciting

I could be with others

(family or friends)

Not fun

at all

Might

be fun

Lots of

fun

I’d be proud of myself

I’d learn something new

Other______________

Camping

Yes

No

Sounds like fun



(family or friends)

Not fun

at all

Might

be fun

Lots of

fun



Other______________

Having Super

Powers

Yes

No

Sounds like fun



(family or friends)

Not fun

at all

Might

be fun

Lots of

fun



Other______________

Rock Climbing

Yes

No

Sounds like fun



(family or friends)

Not fun

at all

Might

be fun

Lots of

fun



Other______________

Data Collection

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Data Analysis• Descriptive statistics:

– RQ 1: Interest in adventures

– RQ 2: Ratings of adventures

– RQ 3: Reasons for choosing those adventures

• t-test– RQ 4: Differences across:

• Age

• Gender

• Ambulatory

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Results

RQ 1: Children’s Interest in the Adventures

Campingn (%)

Hockeyn (%)

Rock Climbn (%)

Super Powersn (%)

Total group 44 (63.8) 27 (39.1) 24 (34.8) 34 (49.3)

Gender

Boys 21 (60.0) 16 (32.3) 14 (40.0) 19 (54.3)

Girls 21 (65.6) 10 (45.7) 10 (31.3) 15 (46.9)

Ethnicity

Caucasian 19 (57.6) 10 (66.7) 10 (30.3) 14 (42.4)

African American 3 (50.0) 2 (28.6) 0 2 (28.6)

Asian American 2 (50.0) 2 (50.0) 2 (50.0) 3 (75.0)

Hispanic 2 (66.7) 1 (33.3) 1 (33.3) 3 (100)

More than 1 ethnic group 2 (66.7) 2 (66.7) 1 (33.3) 2 (66.7)

Ambulatory

Ambulatory 14 (60.9) 9 (39.1) 9 (39.1) 13 (56.5)

Non-ambulatory 14 (51.9) 8 (29.6) 5 (18.5) 11 (40.7)

Note: Number indicates number of “yes” responses. Percentages listed across group, not activity.

RQ 2: Adventures Rated the Highest

N M (SD) n (%)

Not fun at all

Might be fun

Lots of fun

Camping 68 2.24 (.95) 24 (34.8) 4 (5.8) 40 (58.0)

Hockey 69 1.72 (.92) 40 (59.4) 6 (8.7) 22 (31.9)

Rock Climbing 69 1.70 (.98) 43 (62.3) 4 (5.8) 22 (31.9)

Having Super Powers 67 1.91 (.98) 35 (50.7) 3 (4.3) 29 (42.0)

Note: Scale 1 (not at all fun) – 3 (lots of fun)

RQ 3: Reasons for Choosing Adventure

Sounds Fun

n (%)

New/ Exciting

n (%)

Be with Othersn (%)

Proud of Myselfn (%)

Learn Something

n (%)

Other

n (%)

Did NotRespond

n (%)

Camping 21 (39.6) 5 (9.4) 8 (15.1) 1 (1.9) 4 (7.5) 4 (7.5) 10 (18.9)

Hockey 17 (50.0) 3 (8.8) 5 (14.7) 4 (11.8) 5 (14.7) 3 (10.7) 5 (14.7)

Rock Climbing

13 (48.1) 1 (3.7) 5 (18.5) 1 (3.7) 0 4 (14.8) 3 (11.1)

Super Powers 14 (41.2) 4 (11.8) 2 (5.9) 3 (8.8) 2 (5.9) 4 (11.8) 5 (14.7)

Note: Percentages across type of activity. Children could give more than 1 response for reason.

RQ 3: Differences in Interest

Gender Ethnicity Level of Mobility

Boysn = 35

n (%)

Girlsn = 32

n (%)

Children of Color

(n = 36)n (%)

White(n= 33)

n (%)

Ambulatory(n = 23)

n (%)

Non-Ambulatory

(n = 27)n (%)

Camping 21 (60.0) 21 (65.6) 25 (69.4) 19 (57.6) 14 (60.9) 14 (51.9)

Hockey 16 (32.3) 10 (45.7) 17 (48.6) 10 (30.3) 9 (39.1) 8 (29.6)

Rock Climbing 14 (40.0) 10 (31.3) 20 (55.6) 14 (42.4) 9 (39.1) 5 (18.5)

Super Powers 19 (54.3) 15 (46.9) 14 (38.9) 10 (30.3) 13 (56.5) 11 (40.7)

Note: Number designates number of “yes” responses. No significant relationships.

RQ 3: Differences in Ratings


Boysn = 35

M (SD)

Girlsn = 32

M (SD)

Children of Colorn = 36M (SD)

Whiten= 33

M (SD)

Ambulatoryn = 23

M (SD)

Non-Ambulatory

n = 27M (SD)

Camping 2.14 (.97) 2.29 (.94) 2.33 (.93) 2.13 (.98) 2.17 (.98) 2.00 (.98)

Hockey 1.83 (.95) 1.59 (.87) 1.86 (.93) 1.56 (.90) 1.74 (.96) 1.52 (.85)

Rock Climbing

1.80 (.96) 1.63 (.91) 1.78 (.96) 1.61 (.90) 1.74 (.96) 1.41 (.20)

Super Powers

2.03 (1.00) 1.84 (.97) 2.08 (.97) 1.71 (.94) 2.00 (1.00) 1.72 (.75)

Note: No significant differences were found.

RQ 3:Differences in Reasons – Camping


Boys

n (%)

Girls

n (%)

Children of

Color

n (%)

White

n (%)

Ambulatory

n (%)

Non-

Ambulatory

n (%)

Sounds like fun 10 (47.6) 10 (45.5) 15 (60.0) 6 (30.0) 8 (57.1) 5 (33.3)

New/exciting 1 (4.8) 4 (18.2) 2 (8.0) 3 (15.0) 2 (14.3) 2 (13.3)

Be with others 3 (14.3) 5 (22.7) 1 (4.0) 7 (35.0) 4 (28.6) 3 (20.0)

Proud of self 0 1 (4.5) 1 (4.0) 0 0 0

Learn something 1 (4.8) 3 (13.6) 0 4 (20.0) 3 (21.4) 1 (6.7)

Other 3 (14.3) 0 4 (16.0) 0 0 0

Note: Percentages across sub-group. Children could give more than 1 response for reason.

RQ 3:Differences in Reasons – Hockey


Boys

n (%)

Girls

n (%)

Children

of Color

n (%)

White

n (%)

Ambulatory

n (%)

Non-

Ambulatory

n (%)

Sounds like fun 9 (50.0) 8 (80.0) 11 (64.7) 6 (50.0) 5 (55.6) 6 (60.0)

New/exciting 2 (11.1) 1 (10.0) 2 (11.8) 1 (8.3) 1 (11.1) 1 (10.0)

Be with others 3 (16.7) 2 (20.0) 3 (17.6) 2 (16.7) 2 (22.2) 1 (10.0)

Proud of self 0 0 0 0 0 0

Learn something 0 0 0 0 0 0

Other 3 (16.7) 0 4 (23.5) 0 0 0


RQ 3: Differences in Reasons – Rock

Climbing


Boys

n (%)

Girls

n (%)

Children

of Color

n (%)

White

n (%)

Ambulatory

n (%)

Non-

Ambulatory

n (%)

Sounds like fun 7 (50.0) 6 (60.0) 9 (64.3) 4 (40.0) 5 (62.5) 2 (33.3)

New/exciting 1 (7.1) 0 1 (7.1) 0 1 (12.5) 0

Be with others 1 (7.1) 4 (40.0) 2 (14.3) 3 (30.0) 2 (25.0) 1 (16.7)

Proud of self 0 1 (10.0) 1 (7.1) 0 0 0

Learn something 0 0 0 0 0 0

Other 4 (28.6) 0 3 (21.4) 1 (10.0) 1 (12.5) 0


RQ 3: Differences in Reasons – Super

Powers


Boys

n (%)

Girls

n (%)

Children

of Color

n (%)

White

n (%)

Ambulatory

n (%)

Non-

Ambulatory

n (%)

Sounds like fun 7 (41.2) 7 (50.0) 11 (55.0) 3 (27.3) 5 (41.7) 3 (33.3)

New/exciting 2 (11.8) 2 (14.3) 3 (15.0) 1 (9.1) 1 (8.3) 3 (33.3)

Be with others 1 (5.9) 1 (7.1) 1 (5.0) 1 (9.1) 1 (8.3) 1 (11.1)

Proud of self 3 (17.6) 0 1 (5.0) 2 (18.2) 1 (8.3) 2 (22.2)

Learn something 1 (5.9) 1 (7.1) 0 2 (18.2) 1 98.3) 1 (11.1)

Other 3 (17.6) 1 (7.1) 3 (15.0) 1 (9.1) 1 (8.3) 0


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Discussion• First study to examine activities of interest in this population

• Camping is number one choice

• No differences between groups, but need a larger sample

• Concern over representativeness of sample

• Limitations

– Small sample

– Group responses vs. individual responses

• Next steps

– Expand sample

• Greater representation

– More adventures

– Ascertain other reasons

Questions

Documents

A Descriptive Study of CP