Running Head: Web-Based Self-Management Program 1

Running head: WEB-BASED SELF-MANAGEMENT PROGRAM
Web-Based Self-Management Program for

Young Adult Childhood Cancer Survivors
Anna Dominique R. Alvarez
Washington University School of Medicine in St. Louis
Program in Occupational Therapy
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.

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Table 1
Participant demographics for cohorts 1 and 2
Cohort 1
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

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Facebook delivery through a series of key informant interviews followed by one discussion
group of the key informant interviews (Berg, Nesbit, & Gabris, 2015).
Leader training. Each cohort was led by a graduate student, a trained cancer survivor
who had attended college and was living and working independently, and two facilitators who
were the researchers overseeing the development of this program. All leaders participated in 12
hours of training that included the following topics: motivational interviewing, goal writing,
leading brainstorming, self-management of cancer late effects, strengths-based programming,
writing responses to postings and chats, and handling inappropriate postings. In addition, the
university required all leaders to receive HIPAA and IRB training and knowledge of the
university social media rules and regulations. Leaders assisted in making the videos and
informative files that complemented the program and were available on Facebook.
Weekly session topics. The session topics included the following: (1) Introduction to
Late Effects and Self-Management, and Identification of Long-Term School and/or Work Goal;
(2) Problem-Solving Strategies for Late Effects, and Career Exploration; (3) Connecting SelfManagement Skills to School/Work; (4) Adapting the School and Work Environment; (5)
Partnering with Health Providers, and Developing a Resource List; and (6) Summarizing
Lessons Learned, and Revisiting Long-Term Goals.
Facebook features. The Facebook features that were used included a repository of 2minute teaching videos and one-page topic files, live weekly leader facilitated chats, and daily
postings to the wall. There were a number of key components integrated into the six-week
program. One of the components was daily Facebook posts, which included discussion
questions, files, and videos. The discussion questions were used to facilitate interaction among
the participants (see Appendix D for example discussion questions). The 14 files were composed

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of different informational worksheets and resources to help guide the participants with the
weekly topic (see Appendix E for list of file labels). The 19 videos were used as another medium
to educate the participants on certain concepts, such as the cognitive late effect of executive
function (see Appendix F for list of file labels). Brainstorming, another key component of this
program, was encouraged among the participants to problem solve school or work issues.
Identifying personal strengths and using those strengths to overcome challenges was a major
focus of this program.
The creation of goals is another key component of this program. At the beginning of the
program, each participant identified one long-term school and/or work goal. If necessary, the
goals were modified to be measurable with a time frame of three to six months. To help the
participants work toward their long-term goals, weekly action plans were created (Lorig et al.,
2012; see Appendix G for action plan format). Lastly, weekly 30-minute live chats were part of
this program, which gave the participants and facilitators the opportunity to meet at the same
time and discuss weekly topics.
Changes between the two cohorts. Although the key components of the program
remained unchanged, there were a few modifications to the program delivery between the two
cohorts based on informal feedback garnered from the participants and leaders of the first cohort.
First, the overall flow of the six-week program was refined to better fit the needs of this
population as determined from the first cohort (see Appendices H and I for Facebook flow for
cohorts 1 and 2, respectively). The first three weeks had more changes between the two cohort
as opposed to the later three weeks, where the flow remained relatively unchanged. This allowed
for better organization and foundational basis of the programs goals for the second cohort. One
example of a change between the flow of the two cohorts was that the participants of the first

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cohort were instructed to play a Facebook game called Block Puzzle as an icebreaker then
determine if they had issues playing it due to their late effects. The leaders of the first cohort
thought that the participants did not learn anything significant from the game; thus, the
icebreaker for the second cohort consisted of simple icebreaker questions the participants could
ask each other without the release of PHIs in order to get to know the participants better and have
them feel more comfortable as a group (i.e., What is your favorite ice cream flavor?).
In addition to the flow, the scheduling of when the daily posts were posted was changed.
Each post was labeled with the week and day with which it was associated (i.e., Week 1 Day 1
for the first post). For the first cohort, the daily posts were all posted at the beginning of each
week, and the participants were given the opportunity to go through them at their own pace
before the weekly live chat. However, due to how Facebook was set up, the posts would
rearrange themselves according to the most recent activity, which resulted in a disorganized flow.
In order to combat this for the second cohort, the posts were posted daily instead of weekly.
The weekly live chats were modified between the two cohorts, as well. The graduate
student and lay leaders switched from the first cohort to the second due to academic calendars
and wanting to give both trained lay leaders an opportunity to lead. Although the weekly chat
topics remained the same, prior to each chat, a prepared outline of discussion topics and probing
questions helped run the 30-minute chats more efficiently (see Appendix J for weekly general
chat outlines). The second cohort included an extra day on the seventh week for a final seventh
wrap-up live chat.
Lastly, creating action plans was an essential part of this program (Lorig et al., 2012).
For the first cohort, the participants were instructed to post their action plans on the Facebook
wall, which tended to become lost as more posts were added throughout the six weeks. Thus, for

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the second cohort, a second weekly chat was created for the participants to share action plans.
This chat was not live in a sense that the participants were not all on at the same time, giving
them the opportunity to post their action plans anytime throughout the day. Having the action
plans in the chat instead of on the Facebook wall made them easier to access throughout the
course.
Measures
Demographic Survey. Participants self-reported characteristics of age, gender, ethnicity,
highest earned degree, main occupation, and cancer-related history (age at diagnosis, years since
diagnosis, cancer name or type). This questionnaire also included participants history of using
the Internet to seek out general health or cancer-specific information and/or resources.
Qualitative Data. Information from weekly chats and Facebook daily posts were coded.
Weekly feedback sheets were sent to the participants to rate the program components on a 5point Likert scale (1 = strongly disagree to 5 = strongly agree; see Appendix K for weekly
feedback form).
Each of the following three assessments was given at baseline and at the completion of
the 6-week program:
Awareness Questionnaire. The Awareness Questionnaire (Dauwalder & Berg, 2014;
Dauwalder & Berg, 2015; Dauwalder, Vander Linde, Henry, Hayashi, & Berg, 2015) reflects the
insight that participants have regarding the impact late effects have on their school and work
activities (Crosson et al., 1989). The participants list their late effects and ranks each on how
much the late effect bothers them during their daily activities (1 = most to 10 = least) and causes
them worry, anxiety, or distress (1 = severe to 10 = no distress). Next, they write one personal
work- or school-related goal and list late effects that make it difficult for them to achieve this

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goal and strategies to decrease the impact of the late effect. Lastly, participants awareness on
how their late effects impact their daily life is gauged. They are asked to rate the following
statements in a 10-point scale (1 = disagree to 10 = agree): My late effects impact my
participation in daily life.; I have problems but dont know why; I am able to notice how my
late effects impact my participation in daily life right after a negative experience occurs;
During a negative experience that is due to my late effects, I use a strategy to be successful
despite the late effects; and Before an activity, I plan ahead concerning how my late effects
might cause negative experiences and prepare strategies to use in advance. Each statement
refers to a level of awareness (Crosson et al., 1989).
Impact of CancerChildhood Survivors (IOC-CS) Instrument. The IOC-CS
(Zebrack & Landier, 2011) consists of 50 items, comprising of 9 subscales: Your Body and Your
Health, Cancer Treatment and Health Care, Who are You?, Talking and Thinking about Cancer,
Meaning of Cancer, Memory and Thinking, Finances and Money, Socializing and Being with
Friends, and Life Goals. Participants rate perceived impact of cancer along a 5-point Likert scale
(1 = not at all to 5 = very much). Each subscale has a maximum score that can be achieved,
where a higher value indicated a greater impact of cancer on that particular subscale.
Late Effects and Strategy Survey. The Late Effects and Strategy Survey (Dauwalder &
Berg, 2014; Dauwalder & Berg, 2015; Dauwalder et al., 2015) lists different strategies (i.e.,
fitness/exercise, healthy eating, seeking support from others, etc.) and participant utilization of
the strategy. The participant rates how the strategy is applied (1 = not at all to 5 = routinely).
Program Evaluation. A program evaluation was also given to the participants
immediately after the 6-week course was completed. It asks the participants to rate their

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confidence with their own self-management skills on a 10-point Likert scale (1 = not at all
confident to 5 = totally confident; see Appendix L for program evaluation form).
6-Month Program Evaluation. After six months from the completion of the program, a
follow-up 6-month program evaluation was given to the participants of the first cohort. Similar
to the weekly feedback forms, the participants are asked to rate the program components on a 5point Likert scale (1 = disagree a lot to 5 = agree a lot; see Appendix M for 6-month program
evaluation form). It also gives the participants the opportunity to provide written feedback about
the programs efficacy.
Analysis
Quantitative analysis. Descriptive statistics were run with the use of IBM SPSS
software. Nonparametric tests were used to compare differences between the two cohorts and
pre- and post-test scores for the Awareness Questionnaire and the IOC-CS Instrument.
Qualitative analysis. Weekly chats were analyzed using emergent coding to identify
themes that were confirmed by a second coder. Participation in daily Facebook posts were also
coded into a Microsoft Excel document. Any written answers on the measures were documented
as well.
Results
Two cohorts participated in the program: the first cohort ran from May-June 2014, and
the second cohort ran from February-March 2015. There were no significant differences
between the two cohorts with their age, age at diagnosis, and survivor years (p > .05). The
participants gave their history of using online resources for general health and/or cancer-specific
concerns (see Table 2 for participants use of online resources for cancer-specific concerns).
Table 2

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Participants use of online resources for cancer-specific concerns
Use the Internet to find information
Participated in online support groups
Used chat rooms/online forums
Comfortable sharing information on the Internet
Note. n = 11.
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).

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Awareness Questionnaire. Prior to the beginning of the program, all eleven participants
listed at least one late effect on the Awareness Questionnaire, while one participant had up to six
late effects. The most common late effects were memory issues, fatigue/lethargy, difficulty
concentrating, and learning issues (see Table 3 for a list of the participants late effects).
Table 3
List of late effects identified through the Awareness Questionnaire
Late Effect
Memory issues
Lack of motivation
Digestive issues
Nerve pain/neuropathy
Lack of physical flexibility
Secondary cancer
Slower reaction times
Fatigue/lethargy
Weakness
Lack of appetite
Anxiety
Depression
Panic attacks
Missing bone marrow from hip/collapsed hip
Difficulty concentrating
Difficulty sleeping
Learning issues
Postural Orthostatic Tachycardia (POTS)
Seizures
Note. n = 11.
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

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be difficult due to their late effects (Mdns = 5; see Table 4 for participants level of awareness
pre-test). There were no significant differences between the two cohorts on their level of
awareness (p > .05). The post-test showed similar results but with an increase in the participants
use of strategies during and anticipated before activities that may be difficult due to their late
effects (Mdn = 7 and Mdn = 7, respectively; see Table 5 for participants level of awareness posttest). No significant differences were found between the pre- and post-test scores (p > .05).
Table 4
Level of awareness (pre-test)
Statement
Mdn
My late effects impact my participation in daily life.
7
I have problems doing tasks but dont know why.
4
I am able to notice how my late effects impact my participation in
7
daily life right after a negative experience occurs.
During a negative experience that is due to my late effects, I use a
5
strategy to be successful despite the late effects.
Before an activity, I plan ahead concerning how my late effects might
5
cause negative experiences and prepare strategies to use in advance.
Note. n = 11. Participants ranked each statement from 1 to 10 (1 = disagree to 10 = agree).
Table 5
Level of awareness (post-test)
Statement
Mdn
My late effects impact my participation in daily life.
7.5
I have problems doing tasks but dont know why.
6.0
I am able to notice how my late effects impact my participation in
7.0
daily life right after a negative experience occurs.
During a negative experience that is due to my late effects, I use a
7.0
strategy to be successful despite the late effects.
Before an activity, I plan ahead concerning how my late effects might
7.0
cause negative experiences and prepare strategies to use in advance.
Note. n = 4. Participants ranked each statement from 1 to 10 (1 = disagree to 10 = agree).
Impact of CancerChildhood Survivors (IOC-CS) Instrument. The results of the
IOC-CS pre-test showed that the participants ranked certain subscales higher, indicating a greater

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perceived impact of cancer on those subscales (see Table 6 for results of the IOC-CS pre-test).
Some of these subscales include Cancer Treatment and Health Care (Mdn = 21 out of 25
maximum points possible), Who are You? (Mdn = 16 out of 20 maximum points possible),
Meaning of Cancer (Mdn = 11 out of 15 maximum points possible), and Life Goals (Mdn = 12
out of 15 maximum points possible). The nonparametric test between the two cohorts showed a
trend to significance with the Meaning of Cancer subscale (p = .08), and a significant difference
with the Finances and Money subscale (p = .05).
The results of the post-test also showed a greater perceived impact of cancer on certain
subscales (see Table 7 for results of the IOC-CS post-test). These subscales include Cancer
Treatment and Health Care (Mdn = 21 out of 25 maximum points possible) Who are You? (Mdn
= 16.5 out of 20 maximum points possible), Meaning of Cancer (Mdn = 12.5 out of 15 maximum
points possible), and Life Goals (Mdn = 11.5 out of 15 maximum points possible). The
nonparametric test indicated no significant differences between the pre- and post-tests on all
subscales (p > .05).
Late Effects and Strategy Survey. The results of the pre-test for the Late Effects and
Strategy Survey highlighted certain strategies that were already being utilized by the participants
to manage their late effects (see Table 8 for results of the Late Effects and Strategy Survey pretest). Some of these strategies include healthy eating (81.8% of the participants), seeking
social/recreational/fun activities (81.8%), quiet leisure (90.9%), managing thoughts and emotions
(81.8%), going about regular activities (90.9%), and using strengths (90.9%). Out of those
strategies, 54.5% of the participants routinely used the strategies of managing thoughts and
emotions and going about regular activities.

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The results of the post-test for the Late Effects and Strategy Survey showed that all four
participants who completed it used the strategies of fitness/exercise, healthy eating, mental stress
management, seeking support from others who manage chronic conditions/other cancer
survivors, seeking support from family/friends/co-workers, managing thoughts and emotions,
conserving energy throughout the day/simplifying tasks/planning ahead, adapting daily activities
to lessen late effects, using Internet/social media (Facebook, chat rooms, etc.), and writing action
plans/goals. These results indicate an increase of strategies used among the participants from
pre- and post-test.
Program Evaluation. The program evaluation was sent out immediately after the 6week program. Only three participants completed the program evaluation; two from cohort 1
and one from cohort 2. The participants rated their confidence level on a 10-point Likert scale (1
= not at all confident to 10 = totally confident) on 28 statements. The median scores showed that
the participants rated the statements at least a 7. Notable statements that showed a median score
of 9 include can manage your own health every day, can set goals in life, and feel
comfortable talking about cancer.
6-Month Program Evaluation. The follow-up program evaluation was sent to the six
participants of the first cohort six months after their completion of the program. No feedback
forms were returned.
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

15
151515151515151515151515151515151515
Who are You? (20)
16
9
Talking and Thinking about Cancer (55)
42
34
Meaning of Cancer (15)
11
9
Memory and Thinking (25)
11
6
Finances and Money (25)
20
3
Socializing and Being with Friends (20)
13
9
Life Goals (15)
12
7
Note. n = 11. a = Maximum score participant can achieve in a subscale; higher scores indicate a
greater impact of cancer.
Table 7
Results of Impact of Cancer Childhood Survivors (IOC-CS) Instrument (post-test)
Subscale (a)
Mdn
Min
Your Body and Your Health (50)
34.5
25.0
Cancer Treatment and Health Care (25)
21.0
15.0
Who are You? (20)
16.5
16.0
Talking and Thinking about Cancer (55)
41.0
39.0
Meaning of Cancer (15)
12.5
11.0
Memory and Thinking (25)
11.0
9.0
Finances and Money (25)
15.5
12.0
Socializing and Being with Friends (20)
13.5
13.0
Life Goals (15)
11.5
10.0
Note. n = 4. a = Maximum score participant can achieve in a subscale; higher scores indicate a
more positive impact of cancer.
Table 8
Strategies used to manage late effects and frequency of use (pre-test)
Strategy
Fitness/exercise
Night time sleep
Daytime rest/naps
Healthy eating
Communicate with health
professionals
Mental stress management
Use community resources
Take prescribed medication
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)

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Seek social activities
9 (81.8)
0 (0)
1 (9.1)
1 (9.1)
Seek support from others who
2 (18.2)
0 (0)
0 (0)
1 (9.1)
manage chronic conditions
Quiet leisure
10 (90.9)
0 (0)
2 (18.2)
0 (0)
Seek support from
8 (72.7)
1 (9.1)
1 (9.1)
1 (9.1)
family/friends/coworkers
Spirituality/religion/faith/prayer
5 (45.5)
0 (0)
2 (18.2)
0 (0)
Manage thoughts and emotions
9 (81.8)
1 (9.1)
0 (0)
1 (9.1)
Go about regular activities
10 (90.9)
0 (0)
1 (9.1)
0 (0)
Conserve energy/simplify tasks
8 (72.7)
0 (0)
2 (18.2)
1 (9.1)
Adapt daily activities
8 (72.7)
0 (0)
0 (0)
1 (9.1)
Use Internet/social media
6 (54.5)
0 (0)
1 (9.1)
0 (0)
Write action plans/goals
7 (63.6)
0 (0)
0 (0)
1 (9.1)
Use strengths
10 (90.9)
0 (0)
0 (0)
4 (36.4)
Note. N = number of participants out of 11 who responded yes to using the strategy.
References
Berg, C., Nesbit, K., & Gabris, P. (2015). Development of a Facebook self-management program
for young adult survivors of childhood cancer. Manuscript in preparation.
Crosson, B., Barco, P.P., Velozo, C.A., Bolesta, M.M., Cooper, P.V., Werts, D., & Brobeck, T.C.
(1989). Awareness and compensation in postacute head injury rehabilitation. Journal of
Head Trauma Rehabilitation, 4(3), 46-54.
Dauwalder, C., & Berg C. (2014). Work readiness program for young adult cancer survivors:
Using guided discovery to positively impact awareness. Work and Industry Special
Interest Section, 28 (3), 1-4.
Dauwalder, C., & Berg, C. (2015). Work readiness tools for young adults with chronic
conditions. WORK: A Journal of Prevention, Assessment, and Rehabilitation, 52 (3).
Dauwalder, C., Vander Linde, J., Henry, J., Hayashi, R., & Berg, C. (2015). The practicality of a
self-management work readiness program for young adult childhood cancer survivors: A
feasibility study. Journal of Adolescent and Young Adult Oncology. Manuscript submitted
for publication.
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)

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Lorig, K, Holman, H., Sobel, D., Laurent, D., Gonzalez, V., & Minor, M. (2012). Living a
healthy life with chronic conditions: Self-management of heart disease, arthritis,
diabetes, depression, asthma, bronchitis, emphysema, and other physical and mental
health conditions. Boulder, CO: Bull Publishing Company.
ZebracK, B.J., & Landier, W. (2011). The perceived impact of cancer on quality of life for posttreatment survivors of childhood cancer. Quality of Life Research, 20 (10), 1595-1608.
APPENDIX A
List of Community Agencies
APPENDIX B
Flyer for Cohort 1 Recruitment

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APPENDIX C
Flyer for Cohort 2 Recruitment

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FOR IRB USE ONLY
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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?

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Week 4: What does environment mean to you? Comment below describing your favorite
environment/place, the types of activities that you do there, how you feel mentally/physically
when you are there, and how you can make it better.
Week 5: What are your health responsibilities before, during, and after a clinic visit? Or more
specifically, what are your health responsibilities as a childhood cancer survivor to manage lifelong health?
Week 6: Have school or work goals changed for anyone over the course of the program? How do
you plan to implement these goals?
Example Facebook Live Chat Discussion Questions
Week 1: Have you tried brainstorming some of your strengths that can help you overcome your
challenges? Im sure the other participants could help brainstorm ideas to help you as well!
Week 2: What is one school or work activity that you currently struggle to do or do not do at all
because of late effects, and what are strategies that you have tried?
Week 3: Anything we can help you with brainstorming when it comes to how your late effects
impact how you achieve your long-term school or work goal?
Week 4: What questions might you prepare for your next work interview, college visit, or
meeting with a boss, academic advisor, or teacher? Would you think about discussing your
accommodations then?
Week 5: What resources do you use now that you would like to share with the group?
Week 6: Do you have any general feedback about the program? Pros, cons, or things to improve?
APPENDIX E
Facebook Group File Labels
1. Introduction to Late Effects and Self-Management
2. What is Self-Management Visual
3. Identify Strengths
4. Work Inventory Form
5. Action Plan: Weekly Goal Instructions
6. Action Planning: Weekly Goal Format
7. Late Effects Problem Solving Worksheet
8. Strategies for Managing Late Effects
9. O*NET Instructions Guide
10. Career Planning Worksheet
11. Executive Function
12. Environmental Press, You and Your Environment
13. Laws and How They Apply to You

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14. Developing a Resource List and Partnering with Health Providers
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 Planning/Weekly Goal Format

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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.
How confident are you towards this goal?

0 = not confident-12---34---5---6----7---8---9---10 = confident
How will you know you are successful?
APPENDIX H
Facebook Flow for Cohort 1
Week 1: Identifying school/work Goals, Understanding the Impact of late-effects on school and
work, Understanding the role of self-management
Education Files:
1) Introduction to Late-Effects and Self-Management
2) What is Self-Management Visual
3) Personal profile/Strength mapping Instructions
4) Work profile form
5) Action Plan Instructions

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6) Action Planning Format
Videos: (Skill based)
1) Welcome video (CB & PG)
2) Late-Effects (Lay Leaders)
3) Self-management example (OT Students)
4) Personal profile/Strength Mapping (Lay Leaders)
5) Work Profiles (Lay Leaders)
6) Action Plans (Lay Leaders)
Day 1: Ice Breaker and Introduction
1) Ice breaker: Play Block Puzzle game on FB for 15min;post how you did (what level you
got to, what score), if you thought the game was challenging, if you needed to use any hints,
if you noticed any personal strengths, or what challenges the game presented for you
2) Encourage participants to read over the Introduction to Late-Effects and Self-Management
File and the What is Self-Management Visual File
3) Invite participants to view welcome video and comment if desired, begin to think about a 3 to
6 month school or work goal: post 3-6 month goal tomorrow (lay leaders can list an
example) goals dont have to be just I want to be a., it can be something like I want to
have a job where I work outside etc. Just to leave their options open when searching for
jobs that interest them
Day 2: Late-effects
1) Refer participants to late-effects video (lay leaders)
2) Post has anyone noticed the impact of late-effects on school/work function? Ask participants
to describe, have an example from co-leader
3) Encourage participants to play block puzzle game if they havent already, or refer back to it
4) Post: now that you know a little bit more about late-effects, did you notice the impact of lateeffects on playing this game?
5) Ask participants to post or message feedback for the day to the co-leaders
Day 3: Strength Mapping& Work Profile
1) Leaders post an example of a personal profile/strength map and work profile (refer to files
above)
2) Refer participants to personal profile/strength mapping video and work profile video (lay
leaders)
3) Ask participants to create a personal profile/strength map and work profile, and post it to the
FB page, posts can be in any format (word doc, photo)
4) Encourage students to look through each others strength maps and work profiles
5) Post do you notice any similarities with each other? How can your strengths help with school
and work goals?
Day 4: Self-Management
1) Refer participants to the self-management video (OT students)

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2) Post: Self-management happens every day and requires that you build skills and maintain
those skills to manage your late effects over time. What are some self-management skills that
you already use on a regular basis to deal with your late effects? (Co-leader post example)
How have you used the strengths that you shared yesterday as self-management strategies to
overcome late-effects?
3) Remind participants about upcoming group chat about using self-management strategies
Day 5 Action Planning
1) Refer participants Action Planning Format and Action Plan Instructions Files
2) Refer participants to view action plan videos (lay leaders)
3) Post: your action plan for the week, make it related to a school or work goal (co-leader will
post an example and will monitor posts throughout the day to help modify goals if needed)
4) Post: next week we will continue to focus on strengths and learn about more self-management
strategies to help reach school and work goals
Weekly group chat
This week we have thought about our work goals, how late-effects might impact school and
work function, and learned about how we can use self-management skills to reduce the impact of
late-effects. ?did they learn this?
Discussion question: What do you hope to gain from learning self-management skills? Reframe:
what aspects of your life could benefit from SM strategies? How do you think you can apply
self-management strategies to school or work?
Ask for feedback from participants.
Week 2: Career exploration, Executive Function, Overcoming Inertia, Problem
Solving/Strategies
Education Files:
1) Late Effects Problem Solving Worksheet
2) Strategies for Managing Late-Effects
3) ONET Instructions Guide
4) O*NET Interest Profile Worksheet
5) Executive Function
Videos:
1) Procrastinationhttp://www.youtube.com/watch?v=4P785j15Tzk
2) Self-management that you use and how you incorporate your strengths (lay leaders)
3) ONET Instructions Part 1 and 2
4) Executive Function (OT students)
Day 1: Job Exploration
1) Post school and/or work goals if you have not yet done so
2) Visit O*NET (refer to file and video), pick 1 to 3 jobs that interest you and explore the details
of the job (abilities, interests, skills, knowledge, work activities, work context & work values;
note: how to do this is explained in the O*NET instructions)

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3) Post: how do the jobs you searched on O*NET relate to your personal school/work goals?
Would you consider further exploring these O*NET job opportunities?
4) Post or message feedback for the day to the co-leaders
Day 2: Executive Function
1) Refer participants to executive function file and video (OT students)
2) Ask participants to comment on the video (How else is executive function used?)
3) Post an everyday example of using executive function (can be anything, ie doing homework,
shoveling snow)What components of executive function are you using? (Lay leaders can
post an example)
Day 3: Overcoming Inertia
1) Post does anyone feel stuck or feel like they are in a period of inactivity? If yes, how does
that feeling relate to your late-effects? Does anyone feel like they can use their strengths to
overcome the feeling of being stuck?
2) Refer participants to additional video about procrastination; post Procrastination often results
from feeling overwhelmed, anxious, not in control, or just not knowing what to do; ask
participants if they can relate and encourage participants to post comments, ask students to
brainstorm some reasons they might procrastinate (co-leader post an example related to
school or work), post how can your strengths help you overcome inertia and reduce
procrastination (refer back to strength map and co-leader posts and example)?
Day 4: Problem Solving/Strategies to reduce late-effects
1) Refer participants to the late-effects problem solving worksheet and strategies for
managing late-effects files ;
Refer participants to Self-management that you use and how you incorporate your strengths
videos (lay leaders)
2)Post:
a) A school or work activity that you struggle to do or do not do because of late effects
and list strategies that you have tried;
b) post 1-2 different strategy suggestions for 2 other participants;
c) read through the strategies that were given to you, and post 1 strategy you will try.How
can you incorporate your strengths to help you with self-management? (Refer participants
to lay leader video).
3) Let participants know that they can use the problem solving worksheet (pg.20-21) from here
on in if they want to post a challenge for suggestions from the group
4) Remind participants about upcoming group chat
1) Refer participants back to action plan video and accompanying file if needed
2) Post: How did you do on your action plan from last week? (Co-leader posts his/her action
plan); postDoes anyone want help to brainstorm and problem solve through some strategies
if you were not able to meet your goal? (If brainstorming occurs, ask for participants to post
at least one strategy that the person brainstorming can try to meet/modify the goal). Leader
example

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3) Post: your new action plan for the week, make it related to a school or work goal (co-leader
will post an example and will monitor posts throughout the day to help modify and goals if
needed)
4) Post: next week we will be going more in-depth into school and work issues
5) ask participants to post or message feedback for the day to the co-leaders
Weekly Group Chat
Discussion of effective and ineffective strategies for school and work participation;
brainstorming and problem solving process with at least one discussant. Today we have posted
some strategies that you use to manage late-effects at work and school, and have helped each
other to come up with new strategies. What are some additional strategies that we can use to
help us meet our long term school/work goals?[we have to decide if this is the purpose of weekly
chat. It might tie up the whole 30 minutes.
Week 3: Connecting self-management skills to school/work participation; revisiting O*NET
with a focus on strengths
Education files:
1) O*NET instructions guide
2) O*NET interest profiler Worksheet
Videos:
1) ONET instructions Part 1 and 2
Day 1: Understanding School &Work
1)Post The jobs that we do are based on things that we are good at, things we enjoy, and things
we feel comfortable doing, but late-effects impact the work choices that we make and how we
get there. Post Has anyone noticed the impact of late-effects on school and work choices? (coleader posts an example)When choosing school and career paths it is important to consider
opportunities that minimize the impact of late-effects. What are some strategies that you can use
based on your strengths to increase school and work opportunities? (co-leader posts an example
related to example #1)
2) Refer participants back to their work profile worksheet, post Would you modify your work
profile at all based on last weeks discussion of strengths, problem solving strategies, and work
opportunities?participants can change the career they are planning for, general description of
work, strengths, challenges, or strategies.
Day 2: Back to O*NET
1. Refer participants to the O*NET instruction guide (and video)
2. Ask participants to revisit O*NET and to search for work opportunities based on strengths
3. Encourage participants to complete and upload a new O*NET interest profiler if they have
made any changes
4. Post What are some difference between the jobs recommended from the original search and
the jobs based on your interests and strengths? What are some jobs that meet your strengths
or needs for your late effects? Are they different than the jobs you searched in the first week?

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Days 3 & 4: Connecting interests, strengths, late-effects and school and work choices
1) Post: How has your exploration of strengths, the impact of late-effects, and possible job
opportunities over the last few weeks changed your perspective on choosing school and work
options? On your 3-6 month goal?
2) Post: the next 2days will be an opportunity for each of us to help others problem solve if they
are having difficulty making a decision about school or work goals, or if they need to
brainstorm some strategies to meet their goals (Invite participants to post, encourage
participants to respond with strategies for at least 2 others)
2) Post: How did you do on your action plan from last week? (co-leader posts his/her action
plan); post Does anyone want help to brainstorm and problem solve through some strategies
at least one strategy that the person brainstorming can try to meet/modify the goal).
needed)
4) Post: next week we will be discussing the school and work environment
Weekly Group Chat: How have this weeks activities changed the way you plan to reach your
long term school and work goals?
Week 4: Adapting the School and Work Environment
Education files:
Environmental Press: You and Your Environment
Laws and How They Apply to You
Educational videos:
School role play (OT students)
Work role play (OT students)
Environmental press has impacted school/work (lay leaders)
Day 1: Exploring the Environment
1) Refer participants to environmental press video (lay leaders) and Environmental Press:
You and Your Environment file
2) Discussion brainstorm: post What does environment mean to you? Describe your favorite
environment/ place, the types of activities that you do there, how you feel
mentally/physically when you are there, how you can make it better. If you can, upload an
image for us to see. (co-leader can post an example)
3) Post: Do you think you can bring features from your favorite environment into the school or
work place?
Day 2: Task Analysis of School Environment
1) Refer participants school role play video (OT students)

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2) Discussion post: Although not everyone is in school right now or is interested in going to
school, we all find ourselves in a situation of learning from time to time. How could you
change the environment in the video to support the physical, mental and social strengths
and challenges of the student that you see? How would you do this for yourself in
different learning situations?
Day 3: Task Analysis of Work Environment
1) Refer participants work role play video (OT students)
2) Discussion post: Todays exercise is similar to yesterdays, but with a focus on work.
Again, some of you may not be working at the moment but will be in the future. How
could you change the environment in the video to support the physical, mental and social
strengths and challenges of the employee that you see? How would you change your
own work environment? If not working, how would you bring your strengths to adapt a
work environment?
3) Ask participants to post or message feedback on task analysis process, did co-leaders
incorporate it in comments to participants?
Day 4: ADA at work and school/Disclosure
1) Refer participants to Laws and How They Apply to You worksheet
2) Post: What accommodations can help you succeed at school/work? Do you feel comfortable
asking for accommodations in the school or workplace? How have you advocated for
yourself in the past? How can the ADA protect your rights and opportunities?
plan); post Does anyone want help to brainstorm and problem solve through some strategies if
you were not able to meet your goal? (If brainstorming occurs, ask for participants to post at least
one strategy that the person brainstorming can try to meet/modify the goal).
needed)
4) Post: next week we will develop resources to help us find the information that we need and
to partner with your health provider
Weekly Discussion: Continue to discuss any concerns participants may have about disclosing a
health condition and brainstorm/problem solve strategies for at least one participant. What
questions might you prepare for your next work interview, college visit, or meeting with a boss
or academic advisor, or teacher?
Week 5: Developing a Resource List and Partnering with Health Providers
Within the information included in week 5 can we stress why its important to develop a resource
list and a good partnership with health care providers to manage the late effects and maintain
life-long health issues that could occur.
Educational files:

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Developing a resource list and partnering with health providers
Videos:
Preparing for a clinic visit/communicating with health provider (OT students)
Days 1& 2: Searching for reliable web resources and generating a resource guide
1) Post: the goal for the next 2 days is to develop a resource guide as a group that you can
refer to when you need information about health, professional or social organizations,
advocacy, or school/work. What are some community or on-line resources that you
currently use and that you would like to share with the group? Describe the resources
that you use and post links to sites.
2) Refer participants to Developing a resource list and partnering with health providers
file if they want a better understanding of credible on-line health resources
3) PostWe will be putting together a reference list for the group to access based on the links
that you post. The resource list can be based on any topic that you find helpful, like a
blog, support group, scholarship opportunity, and so on.
Days 3 & 4: Health partnerships;generated a tool for clinic visits
1) Post In the next 2 days we will brainstorm some ways we can be active partners in our
own health.How do you prepare for any medical appointment? Do you just show up? Do
you leave with more questions? Do we remember to ask the questions we have? How
best to utilize the time? Can they offer any examples of how their health provider helped
develop a health strategy to reduce the impact of a late effect in the work place?
2) Refer participants to video for preparing for a clinic visit
3) Discuss need for and create a tool we can use with doctors or other health professionals.
4) Post What are your health responsibilities before, during, and after a clinic visit? OR
What are your health responsibilities as a childhood cancer survivor to manage life-long
health.
5) After brainstorm, post any other responsibilities that may have been missed.
6) Post Lets create a form that you could use for yourself at a clinic visit based on the
responsibilities that you all brainstormed. What are the most important things for you all
to include?
3) Post: your new action plan for the week, make it related to a school or work goal (coleader will post an example and will monitor posts throughout the day to help modify and
goals if needed)
4) Post: next week we will summarize and bring everything back to self-management
Weekly discussion: Participants will provide feedback on the resource guide and clinic form
development process. What are the benefits to coming prepared to a doctors appointment?

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Week 6: Summary and Revisiting Long Term Goals
Day 1: Strengths and Challenges
1) Post Over the past few weeks you have identified the impact of your late effects on
school and work. What are some strategies that you feel confident you will use in the
future?
Day 2& 3: Revisiting school and work goals
1) Post Have school or work goals changed for anyone over the course of the program?
How do you plan to implement those goals? (Encourage participants to review and edit
their work history profile and re-upload).
Day 4: Feedback and Question Day
1) Post Do you have additional questions related to late-effects, self-management, and
applying strategies to school and work?
2) Remind participants that group chat will also be an opportunity to provide feedback and
communicate with others.
3) Post: This week, develop a long term goal that you hope to accomplish within the next
3-6 months. We will brainstorm with you if you need help.
4) Encourage participants to help at least one person develop a long term goal if needed, or to
provide support.
5) Thank participants for their commitment to the course; remind them of post-tests to
evaluate the program.
Final weekly discussion: question? What are your overall perceptions of the program?
What was the value of participating in this group experience?
Weekly chat questions
Week 1
What aspects of your life could benefit from SM strategies? How do you think you can apply
self-management strategies to school or work?
Week 2
Today we have posted some strategies that you use to manage late-effects at work and at school,
and have helped each other to come up with new strategies. What are some additional strategies
that we can use to help us meet our long term school/work goals?
Week 3
How have this weeks activities changed the way you plan to reach your long term school and
work goals?

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Week 4
What questions might you prepare for your next work interview, college visit, or meeting with a
boss, co-worker, academic advisor, or teacher?
Week 5
What are the benefits to coming prepared to a doctors appointment?
Week 6
What are your overall perceptions of the program? What was the value of participating in this
group experience?
APPENDIX I
Facebook Flow for Cohort 2
Week 1: Getting to know group members, Identifying 6-month school/work goals,
Understanding the impact of late-effects on school and work, Understanding the role of selfmanagement, Identify first weekly action plan goal
Education Files:
1) Introduction to Late-Effects and Self-Management
2) What is Self-Management Visual
3) Identify Strengths
4) Work Inventory Form
5) Action Plan/Weekly Goal Instructions
6) Action Planning/Weekly Goal Format
Videos: (Skill based)
1) Welcome Video (CB & PG)
2) Late-Effects (Lay Leaders)
3) Self-Management Example (OT Students)
4) Personal Profile/Strength Mapping (Lay Leaders)
5) Work Profiles (Lay Leaders)
6) Action Plans (Lay Leaders)
Day 1: Ice Breaker and Introductions Live Chat
1) Flow of 6 weeks, daily menu, and live chats:
a. Live once a week
b. Look for discussion posts on wall daily
2) Ice Breaker: Getting to know group members
a. Each group member will post a question for everybody to answer No PHI (i.e.,
What was your funniest moment in past month? What is your favorite ice cream
flavor?)
3) Encourage participants to read over the Introduction to Late-Effects and SelfManagement file and the What is Self-Management Visual file
Day 2: Late-Effects and Identify Late-Effects
1) Invite participants to view welcome video and comment if desired, begin to think about a
3 to 6 month school or work goal: POST 3-6 month school or work goal tomorrow (lay

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leaders can list an example goals dont have to be just I want to be a, it can be
something like I want to have a job where I work outside, etc. just to leave their
options open when searching for jobs that interest them)
2) Refer participants to late-effects video (lay leaders)
3) POST: Identify late-effects. Has anyone noticed the impact of late-effects on school/work
function? Ask participants to post 2-3 obstacles related to late-effects and 3 to 6 month
goal.
Day 3: Identify your Strengths
1) Leaders POST an example of a strength (refer to files above)
2) Refer participants to personal profile/strength mapping video (lay leaders)
3) POST 3 strengths to wall
4) Encourage students to talk about each others strengths
5) POST: Do you notice any similarities with each other?
6) POST: How can your strengths help with school and work goals?
Day 4: Work Inventory
1) Leaders POST an example of a work demand and 2-3 solutions (refer to files above)
2) Refer participants to work inventory video (lay leaders)
3) Ask participants to create a work inventory
4) POST a work demand and 2-3 work strengths to the wall
5) Encourage students to look through each others work strengths
6) POST: Do you notice any similarities with each other? How can your strengths help with
school and work goals?
7) Post Action Plan on CHAT and talk about progress on Live-Chat on Tuesday
a. Refer participants to Action Planning Format and Action Plan Instructions
files
b. Refer participants to view action plan videos (lay leaders)
c. For CHAT: Post your action plan for the week, make it related to a school or
work goal (co-leader will have posted an example; leaders will monitor
throughout the day to help modify goals if needed during chat)
d. Tuesday Live Chat:
i. Action Plan progress
ii. Be prepared to discuss one weekly goal that relates to your long-term
work or school goal
iii. Everyones Action Plan will be on the CHAT
Day 5: Self-Management
1) Refer participants to the self-management video (OT students)
2) POST: Self-management happens everyday and requires that you build skills and
solutions to maintain those skills to manage your late-effects over time. What are some
self-management skills that you already use on a regular basis to deal with your late
effects? (Co-leader post example) How have you used the strengths that you shared as
self-management strategies to overcome late-effects?

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4) POST: Next week we will continue to focus on strengths and learn about more selfmanagement strategies to help reach school and work goals
a. Weekly feedback sheet: Email Christine Berg send template
Week 1 Group Live Chat: Tuesday
This week we have thought about our work goals, our late-effects and their impact on school and
work and about how self-management skills reduce the impact of late-effects.
Discussion Question: What daily challenges are you encountering? (Are there any similarities to
note amongst participants?) How are you trying to manage these challenges now? Do you use
your strengths to help you? What else do you need help figuring out that the group could help
you with?
We wrote a weekly goal/action plan last Friday. How is this going? How are strengths and lateeffects impacting this weeks goal. Begin to brainstorm with each other how to overcome
challenges.
Week 2: Overcoming inertia, Problem solving/strategies, Executive function, Beginning career
exploration
Education Files:
1) Late Effects Problem Solving Worksheet
2) Strategies for Managing Late-Effects
3) O*NET Instructions Guide
4) Career Planning Worksheet
5) Executive Function
Videos:
1) Procrastination http://www.youtube.com/watch?v=4P785j15Tzk
2) Self-management that you use and how you incorporate your strengths (lay leaders)
4) Executive Function (OT students)
Day 1: Overcoming Inertia
1) POST: Does anyone feel stuck or feel like they are in a period of inactivity? If yes, how
does that feeling relate to your late-effects? Does anyone feel like they can use their
strengths to overcome the feeling of being stuck?
2) Refer participants to additional video about procrastination; POST: Procrastination often
results from being overwhelmed, anxious, not in control, or just not knowing what to do;
ask participants if they can relate and encourage participants to POST comments, ask
students to brainstorm some reasons they procrastinate (co-leader post an example
related to school or work), POST: How can you strengths help you overcome inertia and
reduce procrastination (refer back to strengths and co-leader posts an example)?
Day 2: Problem Solving/Strategies to Reduce Late-Effects

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1) Refer participants to the Late-Effects Problem Solving Worksheet and Strategies for
Managing Late-Effects files; refer participants to Self-management that you use and
how you incorporate your strengths videos (lay leaders)
2) POST:
a. A school or work activity that you struggle to do or do not do because of lateeffects and list strategies that you have tried
b. 1-2 different strategy suggestions for 2 other participants
c. Read through the strategies that were given to you and POST 1 strategy you will
try. How can you incorporate your strengths to help you with self-management?
(Refer participants to lay leader video)
3) Let participants know that they can use the problem solving worksheet (pg. 20-21) from
here on in if they want to post a challenge for suggestions from the group
Day 3: Executive Function
1) Refer participants to Executive Function file and video (OT students)
2) Ask participants to comment on the video (How else is executive function used?)
3) POST an everyday example of using executive function (Can be anything, i.e., doing
homework, shoveling snow). What components of executive function are you using?
(Lay leaders can post an example)
4) Identify executive function challenges
5) Strategies specifically related to executive function challenges
Day 4: Job Exploration
1) POST school and/or work goals if you have not yet done so
2) Visit O*NET (refer to file and video) and take the MYNEXTMOVE survey (insert link?)
3) Post 3 O*NET letters for all to share on the wall. Any comparisons? Themes?
4) How does this support the work inventory you developed? What did you learn about
yourself?
5) Thursday CHAT: Action Plans
a. Refer participants back to action plan video and accompanying file if needed
b. POST: How did you do on your action plan from last week? (Co-leader posts
his/her action plan)
c. What strategies did you use to accomplish your goal?
d. POST: Who wants to go first to brainstorm and problem solve through some
strategies if you were not able to meet your goal? (If brainstorming occurs, ask for
participants to post at least one strategy that the person brainstorming can try to
meet/modify the goal). Leader example.
e. POST your new action plan for the week, make it related to a school or work goal
(co-leader will post an example and will monitor posts throughout the day to help
modify any goals if needed)
Day 5
1) POST: Next week we will be going more in-depth into school and work issues
2) Ask participants to post or message feedback for the day to the co-leaders:

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Discussion of effective and ineffective strategies for school and work participation.
Brainstorming and problem solving process with all discussants. Refer to career planning grid
What did you learn?
Week 3: Connecting self-management skills to school/work participation, Revisiting O*NET
with a focus on strengths
Education Files:
1) O*NET Instructions Guide
2) Career Planning Worksheet
Videos:
Day 1: Understanding School and Work
1) POST: The jobs that we do are based on things that we are good at, things we enjoy, and
things we feel comfortable doing, but late-effects impact the work choices that we make
and how we get there. POST: Has anyone noticed the impact of late-effects on school
and work choices? (Co-leader posts an example) When choosing school and career paths,
it is important to consider opportunities that minimize the impact of late-effects. What are
some strategies that you can use based on your strength to increase school and work
opportunities? (Co-leader posts an example related to example #1)
2) Refer participants back to their work inventory worksheet; POST: Would you modify
your work inventory at all based on last weeks discussion of strengths, problem solving
strategies, and work opportunities? Participants reflect on the career they are planning
for, general description of work, strengths, challenges, or strategies.
Day 2: Back to O*NET
1) POST 1 or 2 jobs that interest you [explore the details of the job (abilities, interests,
skills, knowledge, work activities, work context, and work values) note: how to do this is
explained in the O*NET instructions)
2) POST: How do the jobs you searched on O*NET relate to your personal school/work
goals? To your strengths? How would your late-effects influence your ability to do these
jobs?
3) Refer participants to the O*NET instruction guide (and video)
4) Ask participants to revisit O*NET and to search for work opportunities based on
strengths
5) Encourage participants to complete and upload a new O*NET interest profiler
(MYNEXTMOVE) if they have made any changes
6) POST: What are some differences between the jobs recommended on your interests and
strengths and the challenges you face? What are some jobs that meet your strengths or
needs for your late-effects?
Day 3: Connecting Interests, Strengths, Late-Effects, and School and Work Choices

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1) POST: How has your exploration of strengths, the impact of late-effects, and possible job
opportunities over the last few weeks changed your perspective on choosing school and
work options? On your 3-6 month goal?
2) POST: The next 2 days will be an opportunity for each of us to help others problem solve
if they are having difficulty making a decision about school or work goals or if they need
to brainstorm some strategies to meet their goals (Invite participants to post, encourage
participants to respond with strategies for at least 2 others)
Day 4: Action Planning/Thursday CHAT
2) POST: How did you do on your action plan from last week? (Co-leader posts his/her
action plan); POST: Does anyone want help to brainstorm and problem solve through
some strategies if you were not able to meet your goal? (If brainstorming occurs, ask for
meet/modify the goal).
3) POST your new action plan for the week, make it related to a school or work goal (Coleader will post an example and will monitor posts throughout the day to help modify any
goals if needed)
4) POST: Next week we will be discussing the school and work environment
Day 5: n/a
Discussion Question: How have this weeks activities changed the way you plan to reach your
long-term school and work goals?
Week 4: Adapting the School and Work Environment
Education Files:
1) Environmental Press: You and Your Environment
2) Laws and How They Apply to You
Videos:
1) School Role Play (OT students)
2) Work Role Play (OT students)
3) Environmental press has impacted school/work (lay leaders)
Day 1: Exploring the Environment
1) Refer participants to Environmental press video (lay leaders) and Environmental
Press: You and Your Environment file
2) Discussion brainstorm: POST: What does environment mean to you? Describe your
favorite environment/place, the types of activities that you do there, how you feel
mentally/physically when you are there, how you can make it better. If you can, upload
an image for us to see. (Co-leader can post an example)

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3) POST: Do you think you can bring features from your favorite environment into the
school or work place?
Day 2: Task Analysis of School Environment
1) Refer participants to School Role Play video (OT students)
2) Discussion POST: Although not everyone is in school right now or is interested in going
to school, we all find ourselves in a situation of learning from time to time. How could
you change the environment in the video to support the physical, mental, and social
strengths and challenges of the student that you see? How would you do this for yourself
in different learning situations?
Day 3: Task Analysis of Work Environment
1) Refer participants to Work Role Play video (OT students)
2) Discussion POST: Todays exercise is similar to yesterdays but with a focus on work.
Again, some of you may not be working at the moment but will be in the future. How
could you change the environment in the video to support the physical, mental, and social
strengths and challenges of the employee that you see? How would you change your own
work environment? If not working, how would you bring your strengths to adapt a work
environment?
3) Ask participants to post or message feedback on task analysis process. Did co-leaders
incorporate it in comments to participants?
goals if needed)
4) POST: Next week we will develop resources to help us find the information that we need
and to partner with your health provider
Day 5: ADA at Work and School/Disclosure
1) Refer participants to Laws and How They Apply to You worksheet
2) POST: What accommodations can help you succeed at school/work? Do you feel
comfortable asking for accommodations in the school or workplace? How have you
advocated for yourself in the past? How can the ADA protect your rights and
opportunities?

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Continue to discuss any concerns participants may have about disclosing a health condition and
brainstorm/problem solve strategies for at least one participant.
Discussion Question: What questions might you prepare for your next work interview, college
visit, or meeting with a boss or academic advisor, or teacher?
Week 5: Developing a resource list and partnering with health providers
Within the information included in week 5, stress why its important to develop a resource list
and a good partnership with health care providers to manage the late-effects and maintain lifelong health issues that could occur
Education Files:
1) Developing a resource list and partnering with health providers
Videos:
1) Preparing for a clinic visit/communicating with health provider (OT students)
Day 1: Searching for reliable web resources and generating a resource guide
1) POST: The goal for the next 2 days is to develop a resource guide as a group that you can
refer to when you need information about health, professional or social organizations,
advocacy, or school/work. What are some community or online resources that you
currently use and that you would like to share with the group? Describe the resources that
you use and post links to sites. Ask about resources they have found helpful and why.
Make sure it is a variety of resourcesnot all websites. How did they find these
resources?
2) Refer participants to Developing a resource list and partnering with health providers
file if they want a better understanding of credible online health resources
3) POST: We will be putting together a reference list for the group to access based on the
links that you post. The resource list can be based on any topic that you find helpful, like
a blog, support group, scholarship opportunity, and so on.
Day 2: Searching for reliable web resources and generating a resource guide
*Continuation of Day 1
Day 3: Health partnerships; generated a tool for clinic visits
1) POST: In the next 2 days, we will brainstorm some ways we can be active partners in our
own health. How do you prepare for any medical appointment? Do you just show up? Do
you leave with more questions? Do we remember to ask the questions we have? How
best to utilize the time? Can they offer any examples of how their health provider helped
develop a health strategy to reduce the impact of a late effect in the workplace?
2) Refer participants to video for preparing for a clinic visit (OT students)
3) Discuss need for and create a tool we can use with doctors or other health professionals
4) POST: What are your health responsibilities before, during, and after a clinic visit? OR
What are your health responsibilities as a childhood cancer survivor to manage life-long
health?
5) After brainstorm, POST any other responsibilities that may have been missed.

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6) POST: Lets create a form that you could use for yourself at a clinic visit based on the
responsibilities that you all brainstormed. What are the most important things for you all
to include?
goals if needed)
4) POST: Next week we will summarize and bring everything back to self-management
Day 5: n/a
Participants will provide feedback on the resource guide and clinic form development process.
Discussion Question: What are the benefits to coming prepared to a doctors appointment?
Week 6: Summary and revisiting long-term goals
Day 1: Strengths and challenges
1) POST: Over the past few weeks, you have identified the impact of your late-effects on
school and work. What are some strategies that you feel confident you will use in the
future?
Day 2: Revisiting school and work goals
1) POST: Have school or work goals changed for anyone over the course of the program?
How do you plan to implement these goals? (Encourage participants to review and edit
their work inventory and re-upload)
Day 3: Keeping the momentum going
1) POST: How can we sustain this approach to lifes challenges? What are some strategies
learned to apply to the next hurdle life throws us? How can we work with others
(accountability partner, health care team, education team, HR department at work) to
keep moving forward?
Day 4: Final Action Planning/Thursday CHAT

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3) POST: This week, develop a long-term goal that you hope to accomplish within the next
3-6 months. We will brainstorm with you if you need help.
4) Encourage participants to help at least one person develop a long-term goal if needed or
to provide support.
5) Thank participants for their commitment to the course; remind them of post-tests to
evaluate the program
Day 5: n/a
Final weekly discussion question: What are your overall perceptions of the program? What was
the value of participating in this group exercise?
General Guidelines for Weekly Group Live Chats: Tuesdays
1) Check progress on Action Plans
2) Weekly discussion amongst participants
3) Ask for a topic to discuss and share
4) Look for wall themes
5) Share strategies and challenges
6) Write action plans
Weekly Chat Questions
Week 1
Getting to know group members. Writing the first of six action plans
Week 2
Today we have posted some strategies that you use to manage late-effects at work and at school
and have helped each other to come up with new strategies. What are some additional strategies
that we can use to help us meet our long-term school/work goals?
Week 3
How have this weeks activities changed the way you plan to reach your long-term school and
work goals?
Week 4
What questions might you prepare for your next work interview, college visit, or meeting with a
boss, co-worker, academic advisor, or teacher?
Week 5
What are the benefits to coming prepared to a doctors appointment?
Week 6
How to sustain the momentum?
What are your overall perceptions of the program? What was the value of participating in this
group experience?
APPENDIX J

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Weekly General Facebook Chat Outlines
Week 1 (February 3)
1) Co-Leaders: Introduce ourselves as the leaders
2) Lay Leader: Have members introduce themselves and maybe something fun that
happened this past weekend
3) Student Leader: Introduce what the group is about, including the flow of the 6 weeks,
daily posts, and weekly live chats
4) Lay Leader: Ice breaker in order to get to know the group members - Ask each group
member to post a question for everybody to answer, making sure it does not divulge any
Protected Health Information (PHI). (i.e., What is your funniest moment in the past
month? What is the coolest place you have ever been to or want to go to? What is your
favorite ice cream? Etc.)
5) Student Leader: Close out the session by encouraging participants to read over the
"Introduction to Late-Effects and Self-Management" file and the "What is SelfManagement Visual" files. Ask for any clarifying questions about the next six weeks.
Give them a heads-up about the Action Plan chat on Thursday. Make sure everybody
understands the purpose of the group.
Week 2 (February 10)
1) Co-Leaders: Welcome participants into the group and just quickly ask how everybody's
week went before we dive into business
2) Student Leader: "Last week, we discussed our 3-6 month school and goal, your late
effects, the impact late effects have on school and work, and how self-management skills
can reduce the impact of late effects. What daily challenges are you encountering?" Point
out similarities among participants.
3) Lay Leader: Ask the following questions giving appropriate time for the participants to
answer in between each question: "How are you trying to manage these challenges now?"
"Do you use your strengths to help you?" "What else do you need help figuring out that
the group can help you with?"
4) Student Leader: Progress on Action Plans. "How are your strengths or late effects
impacting this week's goal?" Have participants brainstorm with each other how to
overcome challenges. Emphasize the importance of creating Action Plans since it is the
engine that runs the program. Ask for any clarification regarding Action Plans. Remind
them about the Action Plan chat on Thursday.
5) Lay Leader: Thank participants for joining, see you next week, don't forget to check
wall posts daily, etc.
1) Co-Leaders: Welcome participants into the group and just quickly ask how everybody's
week went before we dive into business
2) Student Leader: "Last week, we discussed strategies for overcoming inactivity and
began problem solving different strategies for managing late effects at school or work.
Remember that the purpose of this group is to help each other out in coming up with
different strategies to overcome or manage late effects in order to increase school and

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work participation. What is one school or work activity that you currently struggle to do
or do not do at all because of late effects, and what are strategies that you have tried?"
3) Lay Leader: Have participants suggest 1-2 different strategies per participant. As a
survivor, give your own input as well. Probing question in case participants get stuck:
"How can you incorporate your strengths to help you with self-management?"
4) Student Leader: Progress on Action Plans. "How are your strengths or late effects
impacting this week's goal?" Ask what is hindering participation in daily posts, whether it
is the time that they are posted, etc.
wall posts daily, remind them of Action Plan chat on Thursday, etc.
1) Co-Leaders: Welcome participants into the group and ask how everybody's week went.
2) Student Leader: "Last week, we connected self-management skills to school/work
participation. How has your exploration of your strengths, the impact of late effects, and
possible job opportunities over the last few weeks changed the way you plan to reach
your long-term school and work goals?"
3) Lay Leader: Have participants suggest 1-2 different strategies per participant to help
them achieve their long-term school and work goals.
4) Student Leader: Progress on Action Plans. Ask what is hindering participation in daily
posts, whether it is the time that they are posted, etc. Have participants fill out weekly
feedback form to email back.
Week 5 (March 3)
1) Co-Leaders: Welcome participants into the group and ask how everybody's week went.
2) Student Leader: "Last week, we discussed ways you can adapt your school and/or work
environments. How can you change your school and/or work environments to better
support your physical, mental, and social strengths? For instance, for me, I tend to get
anxious when I'm sitting in the middle of a crowded auditorium, so I try and sit
somewhere in the back or at the end of the row so that I don't feel so closed off. I also get
thirsty a lot in class, so I bring a water bottle along with me to stay hydrated. How about
you?"
3) Lay Leader: "We ended the week talking about asking for accommodations to help you
succeed at school and/or work. Have you advocated for yourself in the past? (Lay Leader,
insert an example if you have done so.) What questions might you prepare for your next
work interview, college visit, or meeting with a boss, academic advisor, or teacher?
4) Student Leader: Progress on Action Plans.
Week 6 (March 10)

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1) Lay Leader and Facilitator: Welcome participants into the group and ask how
everybody's week went.
2) Facilitator: "Last week, we discussed developing a resource list for when you need
information about health, professional or social organizations, advocacy, or school/work.
What resources do you use now that you want to share with the group? What other
resources do you want that we can all help you brainstorm with?"
3) Lay Leader: "We ended the week talking about how you prepare for medical visits. (Lay
Leaders, hare an example of how you prepare for medical visits.) What do you all do to
prepare? What are the benefits to coming prepared to a doctor's appointment?"
4) Facilitator: Progress on Action Plans. (Though, I don't think we had any this week...
emphasize its importance again maybe?)
Final Chat (March 17)
1) Lay Leader and Student Leader: Welcome participants into the last chat and ask how
everybody's week went.
2) Student Leader: "This is our last Facebook chat! I appreciate y'all joining the group. We
just have a few questions to wrap up this past six weeks. What are your overall
perceptions of this program?"
3) Lay Leader: "What was the value of participating in this group experience?"
4) Student Leader: Any general feedback about the program - pros, cons, things to
improve, etc.
5) Lay Leader and Student Leader: Thank you for participating in this program! Remind
participants about the post-group questions?
APPENDIX K
Weekly Feedback Form
Weekly process evaluation of group session rating:
Session # ________
1 -----------------2---------------------3-----------------4---------------5
Strongly
Somewhat
Strongly
Disagree
Agree
1. The course leaders are effective in leading group discussion ___
2. The course leaders are sensitive to my specific needs ___
3. I am learning from the survivors in the group ___
4. I value the problem solving we do together ___
5. I like being held accountable for my weekly goals ___

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6. The topics discussed are meaningful to me ___
7. The homework helps me with the topics discussed in group. ___
8. The weekly check-in at the beginning of each group session is useful ___
9. Time for personal action planning at the end of the sessions is useful ___
10. Overall, I am satisfied with todays group session ___
APPENDIX L
Final Program Evaluation Form
Final program outcome evaluation: immediately after the 6 week course is completed
Directions: Please answer the following questions. You may skip any question that you
do not want to answer. Place the number that best represents your confidence in doing each of
the following activities
Not at all
Totally
confident 1------2------3------4------5------6------7------8------9------10 confident
Using the scale 1-10, how confident are you that you:
___ can manage your own health every day.
___ can identify when one of your late effects is impacting your performance
___ can manage your late effects every day
___ can meet the self-management goals you set for yourself
___ can utilize strategies to successfully manage your late effects
___ can set goals in life
___ know what you have to do to reach your goals
___ can develop a long-term (6 month) self-management plan
___have someone to hold you accountable to your self-management plan
___ know how to modify daily activities to meet your needs
___ have strategies for managing your diet and healthy eating

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___ have strategies for managing your fitness routine
___ know how to use rest breaks and conserve your energy throughout the day
___ know how to use stress-management techniques throughout the day
___ know how to balance work or school with fun/leisure activities
___ know how to feel comfortable with your physical appearance
___ know who to see for medical care if you have a health issue
___ know where to find information about cancer
___ feel comfortable talking about cancer
___ have support systems to help you manage your late effects
___ know how to use the internet and community resources to find health information
___ know how to advocate for yourself to get assistance or services needed to adapt the work or
school setting so you can be successful
___ can manage the impact of your late effects on your ability to work or go to school
___ know what you need to do to make changes in your ability to work or go to school
___ know how to adjust the demands of work or school to meet your needs
___ have confidence in your work ability since completing the self-management program
___have confidence in your school ability since completing the self-management program
___ have confidence to manage your late effects since completing the self- management program
APPENDIX M
Six-Month Program Evaluation Form
6-Month Program Evaluation
Directions: For each statement below, please give the number that most describes your response
to the statements using this scale
1------------------------2------------------------3---------------------4--------------------5

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Disagree a lot
Disagree a little
Not sure
Agree a little
Agree a lot
_____1. The course leaders were effective in leading group discussion

_____2. The course leaders were sensitive to my specific needs
_____3. The topics discussed were meaningful to me
_____4. I can see how all of the 6 sessions related to each other
_____5. The homework helped me with the topics discussed in group.
_____6. The weekly check-in at the beginning of each group session was useful for me.
_____7. The time for personal action planning at the end of the sessions was useful for me
_____8. I like being held accountable for my weekly goal.
_____9. I was an active participant in the on-line discussions.
_____10. I was an avid follower of all the on-line discussions, but did not participate as much as
others.
_____11. This course prompted me to try new strategies.
_____12. This course prompted me to think differently about how I approach situations, taking
my late effects into consideration.
_____13. Overall, I was satisfied with the program
14. What would need to change to raise your score in the previous question #13?
_____________________________________________________________________
______________________________________________________________________
______________________________________________________________________
_____15. I made progress on my work or education goal I wrote at the beginning of the course.
16. Please tell us how the course benefitted you?
______________________________________________________________________
______________________________________________________________________
17. Would you recommend this course to other cancer survivors? ___ YES ___NO

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18. What did you like least about the course?
______________________________________________________________________
______________________________________________________________________
19. What did you like most about the course?
______________________________________________________________________
______________________________________________________________________
20. Any ideas or comments that you have about the course that we should take into consideration
for the next time we offer the web course?
______________________________________________________________________
Thank you for completing this Evaluation. We value all your input on this program.
APPENDIX N
Weekly Chat Themes from Cohort 1
Leader
General questions related to weekly topic
Program feedback
Action plans and its elements
Strategies/examples
Positive reinforcement
Clarification
Specific question targeted to one participant
Framing the topic
Directives for next week or for wall postings
Survivor
Strategies/suggestions
Feedback to leaders
Posing their problems/questions

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Sharing personal stories
Answering questions
Positive reinforcement
Clarifications
Barriers encountered
Peer-to-peer conversations
APPENDIX O
Weekly Chat Themes for Cohort 2
Week 1: Instructional
Week 2: Process of the program
Week 3: Impact upon work and school performance
Week 4: Self-management strategies
Week 5: Advocacy
Week 6: Relationship with healthcare providers
Final Chat: Program feedback and evaluation

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