Methods
Participants
Participants were recruited through telephone and email correspondence using contacts
from The National Childrens Cancer Society and many community agencies serving young
adult survivors nationwide (see Appendix A for list). Flyers were created for both cohorts to use
during the recruitment phase (see Appendices B and C for flyers). When a survivor contacted the
research team in response to the flyer, they were given further description of the program and
emailed descriptive materials, including the consent form. A follow-up email or phone call for
questions may result in enrollment. If the survivor was interested and enrolled, then they
emailed back a signed consent form, and password encrypted pre-assessment materials were
sent. Written informed consent was obtained from each participant prior to the start of the
program. All university procedures were followed for social media use, and links were included
as part of the participant consent form. The participants were invited to join a secret Facebook
group formed separately for each cohort. If anonymity was sought, the participants created a
new Facebook Gmail account and a name and profile picture of their choosing.
Two cohorts participated in a six-week web-based self-management program delivered
via Facebook (n1=6; n2 = 5; see Table 1 for demographics). To be included in the study,
participants had to be a childhood cancer survivor at least two years post cancer treatment, age
18-30, independent in activities of daily living (ADLs), and have unsatisfactory education and/or
work status due to cancer late effects. For the first cohort, 39 potential participants contacted the
research team with interest: 7 consented then 6 returned assessments and enrolled onto the
Facebook program. For the second cohort, 12 potential participants contacted the research team
with interest: 5 consented and 5 returned assessments and enrolled onto the Facebook program.
Cohort 2
Combined
M
SD
20.00
1.67
20.80
2.68
20.36
3.10
M
SD
11.67
4.63
11.60
2.70
11.64
3.70
M
SD
8.33
6.22
Frequency (%)
1 (16.7)
5 (83.3)
8.80
4.71
Frequency (%)
1 (20.0)
4 (80.0)
8.55
5.32
Frequency (%)
2 (18.2)
9 (81.8)
3 (50.0)
1 (16.7)
1 (16.7)
1 (16.7)
3 (60.0)
1 (20.0)
1 (20.0)
6 (54.5)
2 (18.2)
1 (9.1)
2 (18.2)
1 (16.7)
1 (20.0)
2 (18.2)
3 (50.0)
3 (60.0)
6 (54.5)
2 (33.3)
1 (20.0)
3 (27.3)
3 (50.0)
2 (40.0)
5 (45.5)
3 (50.0)
3 (60.0)
6 (54.5)
Age
Age at diagnosis
Survivor years
Gender
Male
Female
Ethnicity
White
Black
Hispanic
Asian
Highest earned
degree
HS diploma
or GED
Some
college
College
Main occupation
Full or parttime work
Student
Note. n = 11 (n1 = 6, n2 = 5).
Intervention
A six-week self-management program was delivered via Facebook for the management
of late effects in order to improve school and/or work performance among young adult childhood
cancer survivors. The self- management program was converted from face-to-face delivery to
Yes (%)
9 (81.8)
1 (9.1)
2 (18.2)
11 (100)
No (%)
2 (18.2)
10 (100)
9 (81.8)
0 (0)
Process Evaluations
Weekly chat themes. Weekly chat coding was done differently between the two cohorts
based on student leader preference. The student leader from the first cohort combined all the
weekly chat themes and separated them between Leader themes and Survivor themes (see
Appendix N for weekly chat themes for cohort 1). The student leader from the second cohort
had one identifying theme for each week (see Appendix O for weekly chat themes for cohort 2).
Some common weekly chat themes identified for both cohorts include late effects impact on
school and work, self-management strategies, advocacy, sharing personal stories, relationship
with healthcare providers, and program feedback.
Weekly feedback sheets. Weekly feedback sheets were sent out at the end of each
weekly session to each participant in both cohorts. Only three feedback sheets were returned
during the course of the two 6-week programs by participants who liked the program.
Outcome Evaluations
Outlined in this section are the results of the pre- and post-tests for the different
assessments used to measure program outcomes, which include the Awareness Questionnaire, the
Impact of CancerChildhood Survivors (IOC-CS) Instrument, and the Late Effects and Strategy
Survey. Eleven pre-tests were completed for each measure (n1 = 6, n2 = 5); however, only four
post-tests were completed (n1 = 2, n2 = 2).
Frequency (%)
9 (81.8)
2 (18.2)
2 (18.2)
2 (18.2)
1 (9.1)
1 (9.1)
1 (9.1)
4 (36.4)
1 (9.1)
1 (9.1)
1 (9.1)
1 (9.1)
1 (9.1)
2 (18.2)
3 (27.3)
1 (9.1)
3 (27.3)
1 (9.1)
1 (9.1)
In order to gauge the participants level of awareness on how their late effects impact
their daily life, they ranked five statements on a 10-point scale (1 = disagree to 10 = agree). The
participants agreed that late effects did impact their participation in daily life (Mdn = 7); and they
showed insight into their late effects as determined by how they ranked the statement I have
problems but dont know why (Mdn = 4). However, according to the last two statements, the
participants did not always use strategies during or anticipate the need before activities that may
Table 6
Results of Impact of Cancer Childhood Survivors (IOC-CS) Instrument (pre-test)
Subscale (a)
Your Body and Your Health (50)
Cancer Treatment and Health Care (25)
Mdn
34
21
Min
19
11
7 (63.6)
5 (45.5)
8 (72.7)
9 (81.8)
Not at
all (%)
0 (0)
1 (9.1)
0 (0)
0 (0)
Not at all
Occasionally (%)
0 (0)
0 (0)
0 (0)
2 (18.2)
7 (63.6)
0 (0)
1 (9.1)
5 (45.5)
1 (9.1)
2 (18.2)
1 (9.1)
4 (36.4)
0 (0)
0 (0)
0 (0)
0 (0)
1 (9.1)
0 (0)
1 (9.1)
0 (0)
0 (0)
1 (9.1)
0 (0)
1 (9.1)
N (%)
Occasionally
(%)
2 (18.2)
0 (0)
7 (63.6)
1 (9.1)
Occasionally
Routinely (%)
3 (27.3)
1 (9.1)
0 (0)
2 (18.2)
5 (45.5)
0 (0)
5 (45.5)
4 (36.4)
2 (18.2)
1 (9.1)
3 (27.3)
2 (18.2)
4 (36.4)
1 (9.1)
1 (9.1)
2 (18.2)
APPENDIX A
List of Community Agencies
APPENDIX B
Flyer for Cohort 1 Recruitment
APPENDIX C
Flyer for Cohort 2 Recruitment
APPENDIX D
Examples of Discussion Questions
Example Facebook Wall Discussion Questions
Week 1: You all have said that late effects have impacted your school and/or work performance
in some way. Please comment with 2-3 obstacles related to late effects that may affect the
achievement of your 3-6 month goal.
Week 2: After learning about Executive Function and realizing how you use it in everyday life,
can you think of any Executive Function challenges due to your late effects?
Week 3: Post 1 or 2 jobs that interest you. Explore the details of the job, such as abilities,
interests, skills, knowledge, work activities, work context, and work values. How do the jobs you
searched on O*NET relate to your personal school/work goals?
APPENDIX F
Facebook Group Video Labels
1. Welcome Video
2. Alicias Late Effects
3. Tylers Late Effects
4. Alicias Strengths
5. Tylers Strengths
6. Alicias Action Plan Example
7. Tylers Action Plan Example
8. Alicias Work Inventory
9. Tylers Work Inventory
10. OT Students and Self-Management
11. Alicia and Self-Management
12. Tyler and Self-Management
13. Executive Function
14. O*NET Instructional Guide Part 1
15. O*NET Instructional Guide Part 2
16. Alicias Environmental Press
17. Tylers Environmental Press
18. School Role Play
19. Work Role Play
APPENDIX G
Action Plan Format
Action PLAN:
By writing an action plan, you are communicating to yourself that you are
willing and able to change or shift a behavior.
In your action plan, include the following:
The exact behavior you want to change, alter, increase or decrease.
What strategy will you use to try to change your behavior?
When will you try the new strategy?
How often will you try the new strategy?
Write an action plan, related to your long-term 6-month goal, to accomplish this week. Share
your action plan with the group.
Disagree a little
Not sure
Agree a little
Agree a lot