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Educational Materials for Adolescents with Chronic
Pain and their Parents – A Needs Assessment
Jacqueline Hanley, RN, BSc(H), BScN1, 2, Jennifer Tyrrell, RN, MN1
1The Hospital for Sick Children, Toronto; 2Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Adolescents with chronic pain and their
parents have informational needs regarding
pain management and coping strategies2, 3.
In the SickKids Chronic Pain Clinic, a
multidisciplinary team provides extensive
verbal teaching about pain and pain
management, yet patients are infrequently
provided with chronic pain-specific
educational materials.
Printed materials that supplement verbal
instruction may improve patient knowledge,
satisfaction, and treatment adherence1, 4.
Young adults have also endorsed
development of an internet site directed at
self-management of chronic pain3.
Background
Activities
! A survey based upon information
frequently addressed during appointments
was developed in collaboration with the
multidisciplinary team and Quality & Risk
Management
! Usability testing for clarity and
comprehension was done with 1 parent
and 2 patients
Setting
! SickKids Chronic Pain Outpatient Clinic
Sample
! A convenience sample of 11 parent/
patient dyads with chronic pain were
invited to complete the survey during their
appointments
Methods
ImplicationsResults
References
Acknowledgements
1.  Kyngäs, H. (2003). Patient education: perspective of
adolescents with a chronic disease. Journal of Clinical Nursing,
12(5), 744-751.
2.  Stinson, J. N., Lalloo, C., Harris, L., Isaac, L., Campbell, F.,
Brown, S., ... & Karim, A. (2014). iCanCope with Pain™: User-
centred design of a web-and mobile-based self-management
program for youth with chronic pain based on identified health
care needs. Pain Research & Management: The Journal of the
Canadian Pain Society, 19(5), 257.
3.  Stinson, J., White, M., Isaac, L., Campbell, F., Brown, S.,
Ruskin, D., ... & Karim, A. (2013). Understanding the
information and service needs of young adults with chronic pain:
Perspectives of young adults and their providers. The Clinical
journal of pain, 29(7), 600-612.
4.  Thomas, R., Thornton, H., & Mackay, J. (1999). Patient
information materials in oncology: are they needed and do they
work?. Clinical Oncology, 11(4), 225-231.
We would like to thank the staff at the
SickKids Chronic Pain Clinic for their input
into the design of the needs assessment
Purpose
2
9
8
11
9
7
9
4 4
5
1
2
6
7
6 6
5
7
6
5
6
W
hat to
expect
Explanation
of pain
Psychological strategies
Physical strategies
Pharm
acological strategies
How/W
hy a
3-P
approach
Coping
in
school
Sleep
habits
Talking
to
fam
ily/friends
Pain
&
em
otions
other
During Appointment
This project aims to identify the
informational needs of adolescents with
chronic pain and their parents to inform
development of educational materials
designed to facilitate understanding of topics
addressed in clinic appointments.
1
2
3
4
2 2
4
6
7
4
3
1
2
1
2 2
1
2
W
hat to
expect
Explanation
of pain
Psychological strategies
Physical strategies
Pharm
acological strategies
How/W
hy a
3-P
approach
Coping
in
school
Sleep
habits
Talking
to
fam
ily/friends
Pain
&
em
otions
other
After Appointment
Parent
Patient
! The most common topic identified for educational materials
was physical strategies for managing pain (Fig. 1)
! There was little desire for information before appointments
(not shown). Parents, more so than patients, desired
information about a variety of topics after the appointment
(Fig. 2).
! Other topics identified by parents included support groups,
accupressure/accupuncture, and how to help their child cope
1
3
4 4 4
1
2 2
1
22
5
1
2
1
3 3
1
2
W
hatto
expect
Expla
natio
n
ofpain
Psycholo
gic
alstrategie
s
Physic
alstrategie
s
Pharm
acolo
gic
alstrategie
s
H
ow
/W
hy
a
3-P
approach
C
opin
g
in
schoolSle
ep
habits
Talk
in
g
to
fam
ily/frie
nds
Pain
&
em
otio
ns
Identified Priorities
Parent Patient
! Patients and parents
endorsed psychological
strategies for pain
management as priorities
! Parents additionally
identified physical and
pharmacological strategies
as priorities
! Patients preferred
information in brochure
and electronic form
during their visit
! Parents’ most
commonly identified
preference was for a
website
FIGURE 1 FIGURE 2
FIGURE 3
FIGURE 4
4
3
5
4
9
1
6
1 1
5
3
Flyer during appt
Flyer mailed home
Electronic flyer emailed
Electronic device during appt
Website
Other
Preferences for form of Educational Materials
Parent Patient
EDUCATIONAL TOPICS IDENTIFIED
PRIORITY TOPICS FOR EDUCATIONAL MATERIALS
FORM OF EDUCATIONAL MATERIALS
TABLE 1: Adolescent Characteristics
Age (years) Average 14.6
Range 12-16
Time since Diagnosis Range 1m-6y
Types of Pain Neuropathic 4
(reported by parents) Widespread 2
Abdominal 1
MSK 2
Other 2
Unknown 2
Adolescents n=7 Parents n=11
! Results suggest educational material
development should begin with brochures
about psychological, physical, and
pharmacological strategies for managing
pain. Ideally, these would be customizable
and personalized1.
! Although not explored, there may be a
relationship between parents’ desire for
information after appointments and their
request for web-based information.
! These findings suggest the existing clinic
website could be further developed and
better shared with patients and families.
! These findings align with previous
literature2 that identified a need for
accurate, updated web-based chronic pain
management information
! Additional research is required to
determine if such educational materials
impact patient and parent knowledge and
adherence to pain management plans.

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JHanley Poster 1072

  • 1. Educational Materials for Adolescents with Chronic Pain and their Parents – A Needs Assessment Jacqueline Hanley, RN, BSc(H), BScN1, 2, Jennifer Tyrrell, RN, MN1 1The Hospital for Sick Children, Toronto; 2Lawrence S. Bloomberg Faculty of Nursing, University of Toronto Adolescents with chronic pain and their parents have informational needs regarding pain management and coping strategies2, 3. In the SickKids Chronic Pain Clinic, a multidisciplinary team provides extensive verbal teaching about pain and pain management, yet patients are infrequently provided with chronic pain-specific educational materials. Printed materials that supplement verbal instruction may improve patient knowledge, satisfaction, and treatment adherence1, 4. Young adults have also endorsed development of an internet site directed at self-management of chronic pain3. Background Activities ! A survey based upon information frequently addressed during appointments was developed in collaboration with the multidisciplinary team and Quality & Risk Management ! Usability testing for clarity and comprehension was done with 1 parent and 2 patients Setting ! SickKids Chronic Pain Outpatient Clinic Sample ! A convenience sample of 11 parent/ patient dyads with chronic pain were invited to complete the survey during their appointments Methods ImplicationsResults References Acknowledgements 1.  Kyngäs, H. (2003). Patient education: perspective of adolescents with a chronic disease. Journal of Clinical Nursing, 12(5), 744-751. 2.  Stinson, J. N., Lalloo, C., Harris, L., Isaac, L., Campbell, F., Brown, S., ... & Karim, A. (2014). iCanCope with Pain™: User- centred design of a web-and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Research & Management: The Journal of the Canadian Pain Society, 19(5), 257. 3.  Stinson, J., White, M., Isaac, L., Campbell, F., Brown, S., Ruskin, D., ... & Karim, A. (2013). Understanding the information and service needs of young adults with chronic pain: Perspectives of young adults and their providers. The Clinical journal of pain, 29(7), 600-612. 4.  Thomas, R., Thornton, H., & Mackay, J. (1999). Patient information materials in oncology: are they needed and do they work?. Clinical Oncology, 11(4), 225-231. We would like to thank the staff at the SickKids Chronic Pain Clinic for their input into the design of the needs assessment Purpose 2 9 8 11 9 7 9 4 4 5 1 2 6 7 6 6 5 7 6 5 6 W hat to expect Explanation of pain Psychological strategies Physical strategies Pharm acological strategies How/W hy a 3-P approach Coping in school Sleep habits Talking to fam ily/friends Pain & em otions other During Appointment This project aims to identify the informational needs of adolescents with chronic pain and their parents to inform development of educational materials designed to facilitate understanding of topics addressed in clinic appointments. 1 2 3 4 2 2 4 6 7 4 3 1 2 1 2 2 1 2 W hat to expect Explanation of pain Psychological strategies Physical strategies Pharm acological strategies How/W hy a 3-P approach Coping in school Sleep habits Talking to fam ily/friends Pain & em otions other After Appointment Parent Patient ! The most common topic identified for educational materials was physical strategies for managing pain (Fig. 1) ! There was little desire for information before appointments (not shown). Parents, more so than patients, desired information about a variety of topics after the appointment (Fig. 2). ! Other topics identified by parents included support groups, accupressure/accupuncture, and how to help their child cope 1 3 4 4 4 1 2 2 1 22 5 1 2 1 3 3 1 2 W hatto expect Expla natio n ofpain Psycholo gic alstrategie s Physic alstrategie s Pharm acolo gic alstrategie s H ow /W hy a 3-P approach C opin g in schoolSle ep habits Talk in g to fam ily/frie nds Pain & em otio ns Identified Priorities Parent Patient ! Patients and parents endorsed psychological strategies for pain management as priorities ! Parents additionally identified physical and pharmacological strategies as priorities ! Patients preferred information in brochure and electronic form during their visit ! Parents’ most commonly identified preference was for a website FIGURE 1 FIGURE 2 FIGURE 3 FIGURE 4 4 3 5 4 9 1 6 1 1 5 3 Flyer during appt Flyer mailed home Electronic flyer emailed Electronic device during appt Website Other Preferences for form of Educational Materials Parent Patient EDUCATIONAL TOPICS IDENTIFIED PRIORITY TOPICS FOR EDUCATIONAL MATERIALS FORM OF EDUCATIONAL MATERIALS TABLE 1: Adolescent Characteristics Age (years) Average 14.6 Range 12-16 Time since Diagnosis Range 1m-6y Types of Pain Neuropathic 4 (reported by parents) Widespread 2 Abdominal 1 MSK 2 Other 2 Unknown 2 Adolescents n=7 Parents n=11 ! Results suggest educational material development should begin with brochures about psychological, physical, and pharmacological strategies for managing pain. Ideally, these would be customizable and personalized1. ! Although not explored, there may be a relationship between parents’ desire for information after appointments and their request for web-based information. ! These findings suggest the existing clinic website could be further developed and better shared with patients and families. ! These findings align with previous literature2 that identified a need for accurate, updated web-based chronic pain management information ! Additional research is required to determine if such educational materials impact patient and parent knowledge and adherence to pain management plans.