jhanley poster 1072
TRANSCRIPT
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
Implications Results
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
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What to expect
Explanation of pain
Psychologica
l strategies
Physical st
rategies
Pharmacologica
l strategies
How/Why a
3-P approach
Coping in school
Sleep habits
Talking to
family/
friends
Pain & emotions 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.
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What to expect
Explanation of pain
Psychologica
l strategies
Physical st
rategies
Pharmacologica
l strategies
How/Why a
3-P approach
Coping in school
Sleep habits
Talking to
family/
friends
Pain & emotions 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
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Wha
t to ex
pect
Explan
ation
of pa
in
Psych
ologic
al str
ategie
s
Physic
al str
ategie
s
Pharm
acolo
gical
strate
gies
How/W
hy a
3-P ap
proac
h
Coping
in sc
hool
Sleep h
abits
Talki
ng to
family
/frien
ds
Pain &
emoti
ons
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
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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.