a descriptive study of cp
TRANSCRIPT
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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
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______________
Having Super
Powers
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______________
Rock Climbing
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______________
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
Gender Ethnicity Level of Mobility
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
Gender Ethnicity Level of Mobility
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
Gender Ethnicity Level of Mobility
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
Note: Percentages across sub-group. Children could give more than 1 response for reason.
RQ 3: Differences in Reasons – Rock
Climbing
Gender Ethnicity Level of Mobility
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
Note: Percentages across sub-group. Children could give more than 1 response for reason.
RQ 3: Differences in Reasons – Super
Powers
Gender Ethnicity Level of Mobility
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
Note: Percentages across sub-group. Children could give more than 1 response for reason.
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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