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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How/W

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3-P ap

proac

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Coping

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hool

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Talki

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Pain &

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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

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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.