An eHealth Psychosocial Intervention for Caregivers of Children With Cancer
Phase: NA
Conditions: Pediatric Cancer
Sponsor: Nemours Children's Clinic

 
 
Title:  
 
Pilot Testing eSCCIP: An eHealth Intervention for Parents 
of Children with Cancer  
IRB Number:  
  
  
1121411 
 
  
  
 
Sponsor:   
  
  
  
 
National Cancer Institute  
Original Protocol Date:  
  
 
August 29th, 2017  
Revision Date:  
  
  
 
12/23/2021  (Version 18) 
Study Principal Investigator:    
 
 
Kimberly Canter, Ph.D.  
Nemours Center for Healthcare Delivery Science  
Nemours/A. I. duPont Hospital for Children  
1600 Rockland Road  
Wilmington, DE 19803  
(302) 651-4501  
Kimberly.canter@nemours.org  
Study Team:   
  
  
 
 
Anne Kazak, Ph.D.  
Nemours Center for Healthcare Delivery Science  
Aimee Hildenbrand, Ph.D.  
Nemours Center for Healthcare Delivery Science  
Karen Wohlheiter, Ph.D. 
Nemours Center for Healthcare Delivery Science 
Gaby Vega, M.S.  
Nemours Center for Healthcare Delivery Science  
Alejandra Perez Ramirez, B.A  
Nemours Center for Healthcare Delivery Science 
Courtney Thomas, M.S. 
Nemours Center for Healthcare Delivery Science 
Angel Munoz Osorio, B.S 
Nemours Center for Healthcare Delivery Science  

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Amanda Lewis 
Nemours Center for Healthcare Delivery Science 
Kamyar Arasteh, Ph.D. 
Nemours Center for Healthcare Delivery Science 
Jeffrey Myers  
Nemours Biomedical Research 
Contents 
Abstract ..................................................................................................................................... 3 
1. Background ............................................................................................................................. 4 
1.1 Introduction and Significance ..................................................................................... 4 
1.2 Compliance statement ............................................................................................... 5 
2. Objective and Specific Aims .................................................................................................... 6 
3. Research Design and Methods ............................................................................................... 7 
3.1 Intervention Overview ................................................................................................ 7 
3.2 Participant Identification and Recruitment .................................................................. 8 
                       3.2.1 Sample ............................................................................................. 8 
                       3.2.2 Recruitment.................................................................................... 10 
                       3.2.3 Participant Incentives ..................................................................... 12 
4. Intervention Delivery and Data Collection .......................................................................... 13 
4.1 Measures ................................................................................................................. 13 
4.2 Data Management .................................................................................................. 14 
5. Data Analysis ...................................................................................................................... 15 
6. Human Subjects Protection ................................................................................................ 17 
            6.1 Risk Assessment ..................................................................................................... 17 
6.2 Potential Benefit ...................................................................................................... 18 
6.3 Safety Monitoring Plan ............................................................................................. 18 
6.4 Confidentiality .......................................................................................................... 19 
7. Facilities and Location of Study .......................................................................................... 20 
8. Publication and Presentation Policy .................................................................................... 20 
References ............................................................................................................................. 21 
Appendix ................................................................................................................................ 23 
A. eSCCIP-SP Objectives and Aims .................................................................... 24 
B. Development of eSCCIP-SP ........................................................................... 25 
C. Aim 1 Recruitment Email ..................................................................................... 
D. Aim 2 Recruitment Letter ................................................................................ 28 
E. Flyer ................................................................................................................ 29 

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F. eSCCIP-SP Recruitment Email (Spanish and English version) ....................... 30 
G. Gift Card Letter ............................................................................................... 32 
H. Aim 1 Focus Group Scripts  ............................................................................ 33 
I. 
Script for Caregiver Interviews ........................................................................ 40 
J. Telehealth Script (Module 1) ........................................................................... 47 
K. Telehealth Script (Module 2) ........................................................................... 49 
L. Telehealth Script (Module 3) ........................................................................... 51 
M. Fidelity Checklist ............................................................................................. 53 
N. Interpreter Evaluation Form ............................................................................. 55 
O. Demographic Form  ........................................................................................ 56 
 
Abstract 
  
The psychosocial needs of children with cancer and their families are well-documented, 
as is the importance of providing interventions to support families throughout the cancer 
trajectory. The Surviving Cancer Competently Intervention Program (SCCIP and 
SCCIP-ND) is an in-person intervention for caregivers of children with cancer that uses 
principles from cognitive behavioral and family therapy to decrease anxiety and 
symptoms of posttraumatic stress and improve family functioning. Several studies have 
been published supporting SCCIP and SCCIP-ND as efficacious interventions. 
However, despite this evidence base, in-person interventions in pediatric psychosocial 
oncology have faced a number of challenges related to the numerous demands on 
patient and caregivers’ time, difficulty of scheduling multiple treatment sessions, and 
high levels of stress in the context of cancer treatment. Interventions for non-English 
speakers are also limited.  
 
In an effort to address many of these challenges, an eHealth adaption of SCCIP, called 
eSCCIP, has been developed. eSCCIP uses an innovative hybrid design (self-guided 
internet modules with brief telehealth follow-up) to deliver evidence-based skills and 
support to caregivers of children with cancer in an accessible and engaging format. The 
eSCCIP development process involved close collaboration with experts in internet 
intervention design and feedback from key stakeholders at all stages. The purpose of 
the proposed project is to: 1) Establish feasibility of eSCCIP through pilot testing with 
caregivers of children with cancer, 2) Establish preliminary efficacy of eSCCIP through 
pilot testing with caregivers of children with cancer. Preliminary efficacy will be shown 
by reductions in symptoms of acute distress, posttraumatic stress, and state anxiety, as 
well as improvements in family functioning, and 3) develop a Spanish language version 
of eSCCIP (eSCCIP-SP).  
 
Emphasis will be placed on effect sizes and direction of mean differences from baseline 
to post-intervention The next step in this line of research will be a larger grant to 
conduct a multisite randomized controlled trial of eSCCIP in English and Spanish.   
  
  
 
 
 
 

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1. Background  
  
Survival rates for children with cancer have increased dramatically over the past 30 
years due to medical advances (Ward et al., 2014). However, a cancer diagnosis and 
resultant treatment remains a stressful and often traumatic event for a family (Price et 
al., 2015). The psychosocial needs and risks of children with cancer and their families 
have been well documented in the literature (Kazak & Noll, 2015). The need for 
systematic interventions is also highlighted in the recently published psychosocial 
standards of care for children with cancer and their families (Weiner et al., 2015; Steele 
et al., 2015). Despite this, evidence suggests that the delivery of psychosocial care to 
children with cancer and their families is highly variable across treatment centers 
(Selove et al., 2012). Additionally, challenges exist regarding delivery of in-person 
interventions following a new diagnosis of pediatric cancer, including difficulties with 
retention and recruitment in research studies (Lutz Stehl et al., 2009). eHealth 
interventions, which use technology to enhance the delivery of psychosocial or medical 
care (Cushing & Steele, 2010; Palermo, 2008), present a unique opportunity to deliver 
an easily accessible intervention to families following a new diagnosis of pediatric 
cancer.  
  
1.1 Introduction and Significance  
  
The Surviving Cancer Competently Intervention Program (SCCIP) is a 
NREPP/RTIP listed intervention (R01CA63930) developed by Dr. Kazak that 
combines cognitive behavioral therapy and family therapy for families of children 
with cancer, with the broad goals of decreasing posttraumatic stress symptoms 
and increasing family functioning.  The original SCCIP was a multifamily group 
intervention with adolescent survivors of cancer and their families. Pilot results 
found reductions in symptoms of PTSS and anxiety for adolescent cancer 
survivors and their parents (Kazak et al., 1999). Results from a larger RCT of 
150 families suggest that the intervention was successful for decreasing 
symptoms of physiological arousal in survivors and intrusive thoughts for 
fathers, although families with higher levels of PTSS and distress were more 
likely to drop out before completing the intervention (Kazak et al., 2004). The 
second version of SCCIP (i.e., SCCIP-ND) was designed for use with individual 
families and geared towards caregivers of children newly diagnosed with 
cancer. SCCIP-ND is comprised of three intervention sessions for caregivers 
focused on identifying beliefs about cancer and its treatment, changing beliefs to 
enhance family functioning, and planning for the future (Kazak et al., 2005).  The 
intervention also utilizes a unique multifamily video discussion group (MFVDG) 
that is incorporated into each session to help stimulate discussion. Through the 
MFVDG, SCCIPND participants meet and establish a connection to other 
caregivers who have similar experiences. The MFVDG was a highly innovative 
component of SCCIP-ND at the time of intervention development, utilizing a 
newer technology to introduce a standardized but personal family-systems 
component into the intervention.  Evidence suggests that families found 
participation in SCCIP-ND to be acceptable and feasible right after diagnosis, 
although a larger RCT had numerous challenges, including difficulty of retaining 
families for a multi-session in-person intervention (Kazak et al., 2005; Lutz Stehl 
et al., 2009). Clinically, SCCIP-ND has been adapted for use with a range of 

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groups within the pediatric cancer community, including families of children with 
terminal diagnoses and families of children in remission, and is often referred to 
now as SCCIP.   
  
Results from a mixed-methods study suggest that parents are amenable to the 
delivery of SCCIP-ND via technology, including interactive websites (Hocking et 
al., 2014). Broadly speaking, eHealth interventions use technology to enhance 
delivery of psychosocial or medical care, and may replace or supplement in-
person intervention (Cushing & Steele, 2010; Palermo, 2008).  Although the use 
of eHealth technology is growing and has great potential in terms of improving 
patient care and outcomes, it remains an understudied area in pediatric 
psychology (Palermo, 2008) and eHealth interventions are not widely available 
in pediatric cancer. Data indicates that 83.8% of households in the United States 
have access to a computer and 74.4% have internet access (File & Camille, 
2014), indicating that web-based interventions have great promise in terms of 
supporting families who face barriers in terms of receiving face-to-face 
intervention services.   
  
To this end, Dr. Canter has developed an eHealth adaptation of SCCIP-ND, 
called eSCCIP. This work was supported by an internal mentored research 
grant (Mentor: Anne Kazak, Ph.D., ABPP) from Nemours Biomedical Research 
titled “Implementation of Psychosocial Interventions in Pediatric Cancer: An 
eHealth Adaptation of the Surviving Cancer Competently Intervention Program 
(SCCIP).” The transformation of SCCIP into eSCCIP and eSCCIP-SP (a 
Spanish language version) represents a novel adaption of an efficacious 
intervention to better serve a high-need population both in English and Spanish 
populations. In addition to hypothesized benefits related to accessibility and 
ease of use for individual participants, an online delivery mechanism is highly 
amenable to broad dissemination and increased reach. The development of 
eSCCIP and eSCCIP-SP is grounded in principles of participatory research and 
patient-centered care, with stakeholder (parents, psychosocial experts, 
physicians) involvement in all phases of project development and deployment. 
This represents an additional layer of innovation, as participatory research is an 
increasingly important factor in social and behavioral research that has not yet 
been fully integrated into the field of pediatric psychology.  
 
1.2 Compliance statement  
  
This study will be conducted in full accordance with all applicable Nemours 
Research Policies and Procedures and all applicable Federal and State laws 
and regulations. Any and all instances of noncompliance will be documented 
and reported to the Nemours IRB.  
  
This study will be conducted in accordance with this protocol. Reporting of 
unanticipated events or problems involving risks to subjects or others will occur 
in accordance with Nemours IRB Policies and Procedures and all Federal 
requirements. Collection, storage, recording, and reporting of data will be 
secure, accurate and will ensure the privacy of research participants during and 
after the study.  

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2. Objective and Specific Aims  
  
eSCCIP, an innovative eHealth intervention based on an efficacious intervention for 
caregivers of children with cancer (SCCIP-ND) has been developed as an accessible 
tool to provide critical psychosocial care to caregivers of children with cancer. eSCCIP 
is comprised of four online modules. Each module is comprised of a unique mix of 
original video content and interactive activities, and is complemented by a brief 
telehealth follow-up with an interventionist. After a rigorous development process, 
eSCCIP is ready to be pilot tested. This study will accomplish the following specific 
aims:  
 
Specific Aim 1: Identify strategies for increasing participant engagement and retention by 
conducting focus groups or interviews with a diverse sample of parents of children with cancer 
(POCC) prior to pilot testing. 
 
 
Hypothesis 1: Partnering with parents before initiating pilot testing will lead to the 
identification of strategies that can be implemented for successfully recruiting, 
engaging, and retaining participants. 
 
Specific Aim 2: Demonstrate the feasibility of eSCCIP through testing with a diverse 
sample of POCC. 
  
Hypothesis 2: 80% of POCC who participate in a pilot test of eSCCIP will 
endorse the intervention as acceptable, accessible, and feasible at post-
intervention, comparable to acceptability data from SCCIP-ND. 
 
Hypothesis 3: ≥ 45% of eligible parents approached for participation will 
enroll in and complete a pilot test of eSCCIP, exceeding in-person 
participation rates for SCCIP and SCCIP-ND due to reduced participant 
burden. 
 
Specific Aim 3: Evaluate preliminary effectiveness of eSCCIP through pilot testing with 
POCC. 
 
Hypothesis 4: 80% of caregivers who participate in a pilot test of eSCCIP 
will report a reduction in symptoms of acute distress, posttraumatic 
stress, and anxiety from baseline to post-intervention. 
  
Hypothesis 5: 80% of caregivers who participate in a pilot test of eSCCIP 
will report an improvement in family functioning from baseline to post-
intervention.  
 
Specific Aim 4: Develop a Spanish version of eSCCIP (eSCCIP-SP). Refer to Appendix for 
more details. 
 
 
 
4.1: Determine the acceptability of the adaptation for key stakeholders. 
  
This study fills a void in the psychosocial care of children with cancer and their families 

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by designing an adaptable and accessible eHealth intervention to support families 
through the cancer trajectory. The use of technology is novel and involving families in 
project development (i.e., prototype testing) and pilot testing is highly consistent with the 
Nemours True North mission. In addition to making psychosocial care accessible to a 
broader group of families, online intervention tools may be a cost effective approach to 
providing this care. This study will be an important first step in providing a critical service 
to families of children with cancer who only speak Spanish. 
 
 
 
4.2 Evaluate effectiveness of the adaptation process  
 
Spanish language interpreters at Nemours/AIDHC will be asked to complete an online 
evaluation form in order for the study team to collect qualitative feedback about the 
effectiveness of the adaptation process for eSCCIP-SP. The feedback will help provide 
useful information for future adaptation studies.  
 
 
3. Research Design and Methods  
  
3.1 Intervention Overview  
 
eSCCIP is comprised of four online modules, with specific goals detailed below 
in Table 1. Each module is comprised of a unique mix of original video content 
and interactive activities, and is complemented by a brief telehealth follow-up 
with an interventionist. All video content was developed by Dr. Canter as part of 
her initial eSCCIP development grant.   
  
Video content falls into two distinct categories: the Multifamily Video Discussion 
Group (MFVDG), which serves as a proxy of participants’ interaction with other 
parents, and skillbuilding videos, where foundational intervention skills are 
introduced. The MFVDG is comprised of 17 parents (split into two smaller 
groups) who discuss their experiences with cancer. The MFVDG and is 
designed to capture themes common among caregivers of children with cancer 
(e.g., anger, guilt, emotional exhaustion), examples of coping (e.g. putting things 
in perspective, connecting with others, using humor as appropriate), and impact 
on the family over time (e.g., siblings, grandparents, thinking about the future). 
The five skill-building videos feature interviews with parents and providers, as 
well as graphics which illustrate foundational intervention skills (e.g., “footsteps 
to reframing”).   
  
Interactive activities provide opportunities for caregivers to practice the skills 
they have learned. All interactive activities are securely captured on the back 
end so that the interventionist can view all data that is entered by participants 
(e.g., text entered for free response questions, sequence of selections for drag 
and drop activities) and integrate participant responses into telehealth follow-up 
sessions. These telehealth follow-ups are the only component of the intervention 
that will need to be scheduled with an interventionist, lending a high degree of 
adaptability and flexibility to the overall program. The telehealth follow-up 
sessions will follow a flexible manualized format to ensure standardization 
across interventionists and appropriate follow-up about key intervention 
principles.  

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Table 1: Detailed Intervention Content  
Module 0: Introduction to eSCCIP  
The overarching purpose of Module 0 is to orient the family to the eSCCIP website and telehealth 
platform. The family will practice logging into the site and will review overall intervention goals. The 
family will be provided with a map of the intervention and will “meet” the families from the MFVDG. 
The family will also provide information about themselves to the interventionist through interactive 
activities.   
  
Module 1: Identifying beliefs about cancer, its treatment, and the impact on the family  
The overarching purpose of Module 1 is identify and discuss adversities and beliefs about cancer 
(e.g., cancer is an automatic death sentence, my family will never recover from this experience), as 
well as its impact on the family. The core skill introduced in Module 1 is the Adversity-Behavior-
Consequence (A-B-C) Model. In addition to cognitive behavioral skills, the module also uses family 
systems theory to maintain an interpersonal focus and normalize the family’s experiences.    
  
Module 2: Changing beliefs to enhance family functioning  
The overarching purpose of Module 2 is to recognize and modify distressing beliefs which may lead 
to unwanted consequences.  The core skill introduced in Module 2 is the Footsteps to Reframing.  A 
particular focus is placed in beliefs and consequences that significantly impact family functioning and 
interpersonal relationships. The module uses principles from cognitive behavioral therapy to identify 
and modify beliefs and also uses family systems theory to maintain an interpersonal focus and 
prioritize concerns that impact family functioning.   
  
Module 3: Creating a family survival roadmap  
The overarching purpose of Module 3is identifying and discussing beliefs about the future of the 
family, with a focus on growth. The module builds on previously introduced cognitive-behavioral skills 
(e.g., identifying beliefs about the present and future) and also uses family systems theory to 
maintain an interpersonal focus and help the family imagine a life after cancer treatment ends.    
  
Telehealth Follow-Up Sessions  
After each module is complete, participants will meet with their interventionist to review skills and 
discuss applications to their own lives. The telehealth follow-up will also facilitate engagement and 
joining with the family.    
For the development of eSCCIP-SP, all current material on eSCCIP will be 
translated. Expert consultation and feedback from a panel of Spanish-speaking 
stakeholders will guide the development as eSCCIP-SP. 
 
3.2 Participant Identification and Recruitment  
  
3.2.1 Sample  
 
Specific Aim 1 Sample: 10-20 caregivers of patients who are being treated for 
cancer in the Nemours Center for Cancer and Blood Disorders (NCCBD) at 
Nemours/A.I. duPont Hospital for Children will be recruited to participate in a focus 
group or interview targeting engagement and retention strategies. We will use 
purposive sampling to ensure that representation of women and ethnic and racial 
minority participants is proportional to our patient population (20% African-
American, 5% Asian, 6% other; 16% Hispanic/Latino) and will also specifically 
recruit parents of children across age groups (i.e., infant, toddler, school age, 
adolescent) and diverse family structures (e.g., two caregiver households, single 
caregiver households). We will also ensure that parents of children with diverse 

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cancer diagnoses are represented, as well as a range of time since diagnosis. For 
the focus groups, individuals who may have more difficulty accessing an online tool 
due to financial or other barriers will be over-recruited to ensure that their 
perspectives are well-represented.  
 
Specific Aims 2 and 3 Sample: This is a one-site pilot study at the 
Nemours/Alfred I. DuPont Hospital for Children in Wilmington, DE.  A group 
of 23-30 caregivers will be recruited to participate in a pilot test of eSCCIP. 
This number was selected based upon a power analysis which indicates that 
29 caregivers will be required to achieve power of .80 with an assumed .70 
correlation, and 23 caregivers will be required to achieve power of .70 with 
an assumed .70 correlation. This sample is feasible based on the number of 
patients in active treatment currently followed by the Nemours Center for 
Cancer and Blood Disorders (approximately 200). Relationships with clinical 
staff (social workers, oncologists) in the Division of Oncology ensure that an 
adequate and representative group of participants will be easily recruited.   
 
Dr. Canter will ensure that representation of ethnic and racial minority 
families is proportional to our patient population, and will also specifically 
recruit caregivers from major age groups (i.e., baby, toddler, school age, 
adolescent) and diverse family structures (e.g., two caregiver households, 
single caregiver households). Recruitment will be limited to caregivers of 
children who are on active treatment protocols (e.g., in treatment, receiving 
maintenance chemotherapy). Caregivers of children who have died will not 
be eligible for participation. While participation of both caregivers in two 
caregiver families will be encouraged, it is not an inclusion criterion. In order 
to ensure a representative sample, Dr. Canter will obtain a list of all patients 
who meet inclusion criteria in spring 2019. This list will be stratified by race, 
ethnicity, and age to ensure that the above-referenced parameters are met. 
After stratification, a random number generator will be used to randomly 
select participants for the pilot study.   
  
Specific Aim 4: eight - ten Spanish-speaking caregivers of children with cancer will 
be recruited to participate in the MFVDG. Participants will be selected in consultation 
with psychosocial providers at N/AIDHC, and will also be considered members of the 
eSCCIP-SP family council. Purposeful sampling will be used to ensure adequate 
representation of diversity of cancer diagnoses (e.g., leukemia, solid tumors). 
Eligible caregivers will be approached in person or by phone about participation in 
the study by Spanish-speaking study personnel. 
 
Aim 4.1: Think-Aloud Testing 
 
Five Spanish-speaking caregivers of children with cancer will be asked to review 
the first version of eSCCIP-SP through a think-aloud testing session either in 
person or through a Nemours approved video chat platform. Purposeful sampling 
will be used to ensure adequate representation of diversity of cancer diagnoses 
(e.g., leukemia, solid tumors). Eligible caregivers will be approached in person or by 
phone about participation in the study by Spanish-speaking study personnel. 
 

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Think-Aloud testing is a widely used technique for collecting preliminary usability 
and feasibility data for eHealth interventions.  Five Spanish-speaking families will 
be recruited to participate in Think-Aloud testing either in person or a Nemours 
approved through a video chat platform.  In order to quickly identify any 
challenges and adapt the prototype as needed, the first three families who 
participate in Think-Aloud testing will be scheduled appointments to test eSCCIP-
SP. Caregivers can choose whether they would like to review eSCCIP-SP in one 
study session or two shorter study sessions. Any changes that are deemed 
necessary after the review of each module will be made. This will allow for rapid 
responsiveness to participant feedback and quick refinement of the intervention.   
 
After consent to participate is obtained, participants will be given a secure log-in 
and password to access the modules on the eSCCIP-SP website. For caregiver 
convenience, participants will have a choice to complete all Think-Aloud testing 
in-person at Nemours/AI DuPont Hospital for Children or complete testing 
virtually through a video chat platform.  All Think-Aloud sessions will be 
recorded. 
 
  
Aim 4.2: Interpreter Evaluation of the Adaptation Process 
 
The Spanish language interpreters at Nemours/ AIDHC who aided in the 
development of eSCCIP-SP (n=4) will be asked to complete a brief online 
evaluation survey form. They will be asked to review the process of adapting 
eSCCIP into an online program for Spanish-speaking families. Their responses 
will be used to aid future adaptations.  
 
While the study was pending grant review at NCI, a modified pilot was offered to 
families identified by psychosocial staff in the Nemours Center for Cancer and Blood 
Disorders.  These families were not randomly selected, but were contacted by a 
member of the research team after identification by their primary clinical care team.   
  
3.2.2 Recruitment  
  
Specific Aim 1 Recruitment: Identified participants for focus group or interview 
testing will receive a letter or email (Appendix C) with preliminary information about 
eSCCIP and notification that they will be contacted within one week by a member of 
the research team. The Research Coordinator (RC) will then approach the parent 
during an in-person medical appointment or by phone to explain the purpose of the 
focus groups or interviews, discuss informed consent, and, if interested, schedule 
the participant for focus group or interview participation. If unexpected challenges 
arise related to focus group or interview recruitment, we will work with 
multidisciplinary team members in the NCCBD to identify additional eligible 
participants and reach out to explain the purpose of the focus groups. Study staff 
regularly attend Oncology Psychosocial Rounds, where multidisciplinary team 
members discuss patients being treated in the NCCBD, including newly diagnosed 
patients. These meetings are an additional opportunity to address recruitment 
barriers and generate solutions.  
 
Specific Aims 2 and 3 Recruitment:. Identified participants will be mailed a 
letter (Appendix D) and flyer (Appendix E) to introduce the study and 

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eSCCIP. Potential participants will have the opportunity to contact us if they 
are interested in participating, but they will also be notified that we will 
contact them by phone within a week of receiving the letter and flyer. During 
the phone call, the RC will explain the study and go over the informed 
consent form with the participant. All participants will have the opportunity to 
ask questions  during the phone call with the RC.  
 
Potential participants for this study will be caregivers of children with cancer 
and it might be difficult for them to complete consent and baseline measures 
during their child’s treatment appointment. For the participant’s convenience, 
we will have the option of completing consent and baseline measures 
electronically. 
  
There will be a verbal interaction between a research coordinator and all 
participants to review the consent prior to the participant signing e-consent.  
The RC will give the participant the option of signing up for the study right 
after the interaction or they may take some time to think about the study 
before signing up.  If the participant needs more time to decide, they will be 
given a link to review and sign the consent electronically at a time of their 
convenience. This will give participants plenty of time to decide if they want 
to participate in the study.  If the participant is ready to sign consent at the 
time of their appointment, the RC will collect the electronic consent in-person 
using a tablet.  
 
Prior to signing the electronic consent, potential participants will also be 
provided with the phone numbers and email addresses of the RCs just in 
case they would like to speak to a study team member again.  This will give 
the participants the opportunity to ask additional questions after the initial 
interaction with the RC but before signing the consent form. 
 
Electronic Informed consent will be obtained through the REDCap system. 
REDCap supports two secure, web-based applications designed exclusively 
to support data capture for research studies. Mechanisms are in place to 
assure that data is stored securely. REDCap uses an e-consent framework 
to allow consenting research subjects either on site or at home using a 
computer-based consent form rather than traditional paper documentation.  
When the participant electronically signs the consent form, an extra 
certification page is added displays an in-line PDF copy of their responses in 
which they will be asked to confirm that all the information in the document is 
correct.  The RC obtaining consent will sign and date the consent.  Upon the 
completion of the consent form, a static copy of their responses in the form 
of a consent-specific PDF will be stored in the project’s file repository. A 
copy signed by the participant and the RC will be sent to the participant via 
email for their records. 
 
We expect the vast majority of participants will choose the electronic consent 
process, however we will also offer the option of reviewing and signing a 
paper copy of the consent form. The participant and the RC will sign 
electronically using their computer mouse or finger. Participants will receive 

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a copy of their signed informed consent form via email (or hard copy if they 
sign a paper copy). Paper copies will be kept in a locked file cabinet inside 
of the PI’s personal office, which is locked whenever the PI is not present.   
The informed consent process will be documented in the participant’s 
research record 
 
The RC will orient the family to the RedCap data capture system (more 
detail provided in Data Management subsection), the eSCCIP website, and 
the telehealth follow-up platform. After obtaining informed consent, the 
family will create a timeline for intervention completion with the RC. Ideally, 
they will complete one module with telehealth follow-up per week. The RC 
will also inform the family that post-intervention measures will be sent via 
RedCap email following intervention completion, and that they will be 
contacted by the RC when measures are sent.  
 
Specific Aim 4: Eligible caregivers will be sent a recruitment email (Appendix 
F) and then approached in person or by phone about participation in the 
study by study personnel. The RC will explain the study and then work with 
the potential participants to schedule a date for the MFVDG. Informed consent 
will be obtained on the day of the MFVDG. 
 
Aim 4.1: Eligible caregivers will be approached in person or by phone 
about participation in the study by study personnel. The RC will 
explain the study and then work with the potential participants to 
schedule some dates to test the Spanish version of eSCCIP. 
eConsent procedures (as highlighted in section 3.2.2, Specific Aims 2 
and 3) will be used to obtain consent of all participants. The option to 
review and sign a paper consent will also be available. 
 
Aim 4.2: Interpreters will receive an email from the study team with the 
link to the survey. They will be sent weekly email reminders for three 
weeks until they complete the survey. Consent for interpreters will be 
waived in order to keep their identities anonymous (see Waiver of 
Documentation).  
  
3.2.3 Participant Incentives (Appendix G) 
 
Specific Aim 1 Incentives: Each participant will receive a $30 gift card.  
 
Specific Aims 2 and 3 Incentives: All participants in the randomized pilot 
test will be given a $50 debit card after the completion of post-intervention 
measures. Gift cards will be delivered in person or mailed. If mailed, the 
participant will be asked to contact the RC to confirm debit card receipt 
before the debit card is activated. Participants in the modified pilot test 
(while pending grant review) received a $50 debit card. Funding was 
provided through Dr. Anne Kazak’s ACCEL grant mentor funds.  
 

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Specific Aim 4 Incentives: All participants that participate in the MFVDG 
will be given a $100 debit card after the discussion is done. Funding was 
provided by the Center for Pediatric Traumatic Stress (CPTS). 
 
 
 
Aim 4.1: All participants that participate in the Think-Aloud 
testing of the Spanish version of eSCCIP will receive a $75 debit card 
once they complete all the modules. Funding is provided by the Mattie 
Miracle Foundation. 
 
 Aim 4.2: In order to keep participation of the Spanish language interpreters 
completely anonymous, we will not collect any personal information, 
therefore they will not receive payment for their participation.  
  
4. Intervention Delivery and Data Collection  
 
4.1 Measures 
 
For Specific Aim 1, semi-structured guides will be developed for the focus group or 
interview sessions (Appendix H, I) to gather participants’ perspectives about strategies to 
increase engagement and retention. For example, participants will be prompted to discuss 
substantive and logistical barriers to participation, challenges to maintaining interest, and 
communication strategies that could be implemented to sustain engagement. Specific 
questions about engaging participants who are more distressed or endorse symptoms of 
PTSS will be included, as well questions about any exclusion criteria that should be 
implemented based on time since diagnosis. The discussions will be audio taped and 
transcribed.  
 
For Specific Aims 2 and 3. The family will be encouraged to complete baseline 
measures at the time of recruitment, but will be given the option to complete using 
a secure web-link at a later time. Following completion of baseline measures, the 
family will login to the eSCCIP platform and complete Module 0 with subsequent 
telehealth follow-up, per the timeline determined at the time of recruitment. After 
completion of one module, the next module will be released through the online 
delivery platform. New modules will be released one at a time until the family has 
completed the full intervention, at which point post-intervention measures will be 
sent electronically via RedCap. Dr. Lee Ritterband, expert eHealth consultant, will 
provide consultation throughout intervention delivery to share insight regarding 
best practices and help manage any unanticipated difficulties. The second 
interventionist, Dr. Aimee Hildenbrand, is a postdoctoral fellow with experience in 
psychosocial oncology and medical traumatic stress. Dr. Hildenbrand will be 
trained in the delivery of eSCCIP prior to study initiation, and will also be trained in 
the delivery of the in-person SCCIP. Dr. Hildenbrand and any additional 
interventionists who join the study team will receive regular supervision from Dr. 
Canter over the course of the grant. A manual has been developed by Drs. Canter 
and Kazak to ensure that all participants receive standardized follow-up telehealth 
care( Appendix J, K, L).  A fidelity checklist has also been developed by Drs. 
Canter and Kazak to monitor fidelity and intervention adherence for the telehealth 
follow-up sessions (Appendix M).  A subset of telehealth follow-up sessions will be 
audio recorded and transcribed to allow for fidelity checks. The fidelity checks will 

Page 14  
  
only be conducted on newly enrolled participants (not participants already enrolled 
in the pilot study). 
 
Telehealth appointment reminders will be sent by the RC prior to each scheduled 
session.  Appointment reminders will be sent via the participant’s preferred mode of 
communication (phone, email, or text message).  
  
In the modified pilot test, all baseline and post-intervention measures were 
completed using paper forms during previously scheduled outpatient or inpatient 
visits/admissions. All other study procedures will be the same.4.1 Measures  
  
Consistent with Specific Aim 2, data will be collected on acceptability, 
accessibility, and feasibility of the intervention at post-intervention only. 
Caregivers will rate eSCCIP using the eSCCIP Evaluation Questionnaire and the 
and the Internet Intervention Adherence Questionnaire, which have been used in 
previous eSCCIP work and was developed based on similar questionnaires used 
by leaders in the field of eHealth intervention development,.  
 
Consistent with Specific Aim 3, data will be collected on symptoms of posttraumatic 
stress, acute distress, state anxiety, and family functioning at baseline and post-
intervention. The PTSD Checklist for DSM-5 (PCL-5) is a 20-item self-report measure 
that will be used to assess for symptoms of PTSD.  The National Comprehensive 
Cancer Network Distress Thermometer (DT) and Problem List is a single-item indicator 
of psychosocial distress that is widely used in the oncology literature. The SCORE-15 is 
a 15-item self-report measure of family functioning and relationships that is sensitive to 
change over the course of a psychosocial intervention. The Generalized Anxiety 
Disorder 7-Item Scale (GAD-7) is a 7-item self-report measure of symptoms of 
generalized anxiety. The COVID-19 Exposure and Family Impact Survey (CEFIS) is a 
caregiver-report measure of the extent to which family members have been exposed to 
potentially traumatic aspects of the COVID-19 pandemic and the degree to which this 
exposure is perceived as challenging or beneficial. CEFIS has two scales. CEFIS was 
developed in rapid response to the unfolding impact of COVID-19 on families around the 
world. 
 
Demographic information will also be collected at baseline using the Psychosocial 
Assessment Tool (PAT) and a review of the electronic medical record. In addition to 
demographic information, the PAT will be used to assess family areas of risk and 
resiliency in multiple domains. Participants will be encouraged to complete all data using 
RedCap, but paper forms will be available as well.  
  
For Specific Aim 4, a conversation guide will be created to facilitate the Spanish-
language MFVDG.  
 For Aim 4.1, The Think-Aloud process is a data-generating process.  
Participants will be instructed to “Think-Aloud” about their experience using and 
interacting with eSCCIP-SP.  All utterances will be audio-recorded and any 
questions or comments will also be transcribed by study personnel.  These 
narratives will be used to edit and refine the eSCCIP-SP modules iteratively, with 
each set of changes from one module also being incorporated into the other 
modules. Participants will be compensated for their time and efforts. 

Page 15  
  
 For Aim 4.2, Interpreters will be asked to complete a brief online evaluation 
form (Appendix N) on REDCap. The link to the form will be emailed to all 
interpreters. 
 
4.2 Data Management  
  
All data will be collected, managed, and stored using the research-focused 
electronic data capture system REDCap.  REDCap supports two secure, web-
based applications designed exclusively to support data capture for research 
studies. Mechanisms are in place to assure that the de-identified data is stored 
securely. Any data that is collected via paper form will be entered into RedCap 
by study personnel. Any paper surveys will be stored securely and de-identified, 
consistent with study procedures for storing other hard copy data. An “entered 
by” field will be included in RedCap for accurate tracking of data entry.  
  
All data in the modified pilot will be entered into a password protected Excel file, 
accessible only to the PI and Research Coordinator. This data will also be 
entered into REDCap for security and data management purposes.  Paper 
forms will be stored securely, consistent with study procedures for storing hard 
copy source material.   
 
The MFVDG video will be stored on the Nemours secure server, consistent with 
procedures utilized during development of the English-language eSCCIP. 
 
  
5. Data Analysis  
 
Specific Aim 1 Data Analysis: Demographic information (Appendix O) will be 
collected from all participants in the focus groups and interviews. Transcribed focus 
group and interview data will be coded by study team members with guidance from 
Dr. Janet Deatrick, expert qualitative consultant. Directed content analysis will be 
conducted, using a priori codes generated by the study team and additional codes 
identified in ongoing transcript review. After the coding structure becomes 
established, two coders will independently code a subset of the transcripts to 
examine consistency in coding under the supervision of Dr. Deatrick. Discrepancies 
will be resolved by consensus among the investigators. In order to strengthen the 
rigor of the analysis, a primary and secondary coder will be assigned as analysis 
continues with the secondary coder checking the coding of the primary coder as 
well as completing a summary of data on each category within that case (group) 
and across all cases (groups). The case summaries and samples of the coding 
process will be reviewed in regular meetings of the study team. Through this 
process, codes will be transformed into categories, and categories into themes that 
explain strategies for engaging research subjects, minimizing attrition, and keeping 
participants engaged for the duration of the study. 
  
Specific Aims 2 and 3 Data Analysis: Data will be analyzed by Dr. Canter with 
support from the Senior Biostatistician in the Nemours Center for Healthcare 
Delivery Science. Dr. Lee Ritterband, expert eHealth consultant, will provide 
additional consultation regarding the analysis and interpretation of acceptability, 

Page 16  
  
utility, and feasibility data.  A more detailed analytic plan is organized below by 
hypothesis.  
  
Hypothesis 2: The eSCCIP Evaluation Questionnaire and Internet Intervention 
Adherence Questionnaire (IIAQ) will be scored and reliability will be computed using 
Cronbach’s alpha.  Mean scores and distributions will be computed and used to 
determine acceptability, utility, and accessibility of the intervention for caregiver 
participants (e.g., higher mean scores will represent more favorable impressions of 
eSCCIP). The eSCCIP Evaluation Questionnaire consists of 21 questions rated on 
a five-point Likert scale (0 - 4). For the purposes of evaluating Hypothesis 2, 
responses of 3 (“mostly true”) and 4 (“very true”) will be used to indicate 
endorsement of the acceptability and utility of eSCCIP. A total measure score ≥ 63 
(i.e., the value obtained if a participant selected “mostly true” for all items) will 
indicate that a participant found the intervention acceptable and useful. The IIAQ will 
be utilized to assess participant impressions of intervention accessibility. The IIAQ 
consists of 16 questions rated on a fourpoint Likert scale (0 - 3). Responses of 0 
(“not a problem”) and 1 (“a little problem”) will be used to indicate good intervention 
accessibility in our sample. A total measure score ≤ 16 (i.e., the value obtained if a 
participant selected “a little problem” for all items) will indicate that a participant 
found the intervention accessible. The selection of values indicating endorsement of 
eSCCIP was guided by past work involving the evaluation of eHealth interventions 
using similar measures.  
 
Hypothesis 3: Descriptive statistics will also be computed and used to evaluate 
Hypothesis 3 (e.g., proportion of eligible participants enrolled, eSCCIP module 
completion, telehealth attendance, telehealth reschedule data, retention for enrolled 
participants). 
 
Hypotheses 4 and 5: The PCL-5, Distress Thermometer, GAD-7, and SCORE-15 
will be scored and reliability will be computed using Cronbach’s alpha. Descriptive 
statistics, including mean scores and distributions, will be computed for all 
measures and assumptions underlying statistical procedure will be checked. Items 
on the PCL-5 are rated on a 5-point Likert scale (“Not at All” – “Extremely”), with an 
overall cut-off score of 33 suggested for clinical impairment until full psychometric 
data is available for the measure. Based on psychometric evidence from the PCL-5 
for DSM-IV, a change of 5-10 points suggests reliable change and a change of 10-
20 points suggests clinically significant change. The DT is a single-item screener 
ranging from 0 – 10 (“No Distress” – “Extreme Distress”) with several Yes/No items 
describing different areas of difficulty. Items on the SCORE-15 are scored on a 5-
point Likert scale (“Not at All” – “Very Well”).  An overall score is generated, as well 
as three subscales: Strengths and Adaptability, Overwhelmed by Difficulties, and 
Disrupted Communication, with high scores suggesting more impairment.  Items on 
the GAD-7 rated on a 4-point Likert scale (“Not At All” – “Nearly Every Day”) with 
higher scores indicating greater anxiety. Guidelines for interpretation indicate that a 
score of ≥ 10 suggests a possible diagnosis of Generalized Anxiety Disorder. 
CEFIS has two scales. The Exposure scale consists of 25 items that are answered 
as Yes/No with a total score of 0 to 25. The Impact scale consists of 12 items, 10 of 
which use a 4 point scale and 2 with a 10 point scale. The total score can range 
from 12 to 60. Higher scores denote more exposure and more (negative) impact. 

Page 17  
  
 
  
All outcome data will be analyzed using paired sample t-tests. Because this is a pilot 
study, emphasis will be placed on effect sizes and associated confidence intervals 
over statistical significance.  Mean differences and direction of effects will also be 
reviewed. All effect sizes will be computed using Cohen’s d and interpreted using 
accepted guidelines for small, medium, and large effects.  
 
6.  Human Subjects Protection  
  
We will rely on Nemours Office of Human Subjects Protection (OHSP) policies and 
procedures to guide all aspects of our study design and implementation. The 
attached consent documents will be reviewed by the Nemours OHSP Institutional 
Review Board before study initiation.   
  
Study procedures for the development of eSCCIP have been previously approved 
by the Nemours IRB, and similar procedures will be utilized to protect participant 
data. This is a minimal risk study. This is a caregiver-only intervention, and no 
minors will participate directly in the study. Informed consent (electronic or paper 
copy) will be obtained prior to participation, as will an institutional telehealth consent 
form.  Eligible participants will be approached in-person or by telephone by study 
personnel. The website used to access eSCCIP is housed within Nemours 
Biomedical Research and is secure for research.  Participants will be assigned a 
unique log-in and password prior to completion to ensure that no identifiable 
information is entered.  The telehealth platform is encrypted and secured, and is 
used across our institution for clinical and research telemedicine delivery. A medical 
chart review will also be completed for the children of eligible participants.  
REDCap, described in more detail above, is used across our institution for research. 
All paper study related documentation will be kept in a locked file cabinet inside of 
the PI’s personal office, which is locked whenever the PI is not present.  All data will 
be identified only by Subject ID and the master list linking participants to unique 
Subject IDs will be kept separately from the rest of the study data.  
  
The PI for this grant is a licensed psychologist and is able to triage and address 
clinical concerns that may be identified from the study. An after-hours number will 
be provided for the staff on-call psychologist in the unlikely event that immediate 
psychosocial care is needed outside of normal business hours. Technological 
support will be available during business hours to manage any web concerns. If any 
unanticipated problems related to the research involving risks to subjects or others 
happen during the course of this study (including serious adverse events) these will 
be reported to the sites IRB in accordance with accepted policies.  
  
6.1 Risk Assessment  
  
The research activities for this study present no more than minimal risk to participants. 
Because of the interventionist follow-up after each module, any emotional distress will be 
readily identified and referrals will be provided in the unlikely event that safety concerns 
are apparent. Because Dr. Canter will be conducting the telehealth follow-up, she will not 
be responsible for enrolling or consenting participants for the study. She will also not be 

Page 18  
  
responsible for administering any pre- or post-intervention measures. These steps will 
eliminate the possibility of bias due to a dual role.  
 
In the MFVDG, participants will be asked to discuss their child’s cancer, their reactions 
to the cancer, and their family; this may be potentially upsetting for some people. 
Caregivers have the option to skip any portion of the discussion that they do not wish to 
participate in. Caregivers can also request to be removed from the filmed MFVDG prior 
to final video editing. 
  
6.2 Potential Benefit  
  
This study is an adaptation of an intervention for caregivers of children with 
cancer, and many caregivers find participation in this intervention to be helpful 
and valuable. The knowledge gained from this research may also help us 
provide better care and support to other families in the future.  
  
6.3 Safety Monitoring Plan  
  
As this study poses no more than minimal risks to participants, the Principal 
Investigator will monitor study progress, ensure the accuracy and security of the 
data and ensure subject safety.  
  
With that said, there are six items in the study battery that may be particularly 
salient clinically (Red Flag items) in Aim 2 and 3 of the study. The Red Flags are 
classified as High Risk and Standard Risk (see below; High Risk Red Flag items 
are bolded). High Risk items relate to suicidality and may indicate the need for 
immediate attention and further evaluation. Standard Risk items indicate that the 
participant may be experiencing some distress, but the situation is not 
emergent.  
 
Red Flag Items 
Item 
Measure 
Answer endorsed to 
appear on “red flag” 
report 
Talk about suicide / has 
made a suicidal attempt 
(HIGH RISK item)  
PAT: Does your 
child…  
Sometimes OR Yes  
Talk about suicide / has 
made a suicidal attempt 
(HIGH RISK item)  
PAT: Do any other 
children in your  
home…  
Yes  
Has anyone talked about 
or attempted suicide 
(HIGH RISK item)  
PAT: About the 
adults (caregivers) in 
the child’s home  
Yes  

Page 19  
  
Is anyone really sick or 
have a serious medical 
problem  
PAT: About the adults 
(caregivers) in the 
child’s home  
Yes  
Distress thermometer  
Distress 
thermometer  
9 or 10  
Feeling distant or cut off 
from other people  
PCL-C  
Extremely  
  
In order to identify endorsed Red Flag items, the RC will review the Red Flag 
items in person (for modified pilot) or in REDCap after the completion of data 
collection and while the participant is present. If a participant completes the 
study battery remotely or without the RC present, a system-generated 
automated email will be sent to the RC if a Red Flag item is endorsed.   
  
If any Red Flag items are endorsed or if a participant appears to be in acute 
distress, the RC will ask the participant to confirm his/her answers and ask for 
additional information to determine whether there is an imminent risk for harm to 
the participant or a member of his/her family. If a participant completes the 
questionnaires remotely, the RC will assess this information via telephone 
immediately upon noting the endorsement.   
  
If the participant reports that the Red Flag item is a past concern and/or is 
actively being resolved (e.g., through work with a member of the clinical care 
team), the RC will report the Red Flag endorsement to the PI.  The PI, who is a 
licensed clinical psychologist, will determine whether any action needs to be 
taken beyond documenting the endorsement. If needed, the PI will follow-up 
about these items during the next scheduled telehealth session with the 
participant.   
 
If the participant reports that the Red Flag item is a current concern and/or is not 
being adequately resolved, the RC will remain with the participant (if in person) 
and immediately contact the PI. The PI or RC will notify a member of the clinical 
care team (LCSW or embedded psychologist) and explain the situation in 
person, by email, or by telephone. Plan of action will be determined by the 
clinical care team in coordination with the PI, dependent upon participant needs 
and level of concern. Endorsement will be documented, and a follow-up email 
will be sent to the clinical care team that summarizes the determined plan of 
action. If needed, the PI will follow-up about these items during the next 
scheduled telehealth session with the participant.  
 
6.4 Confidentiality  
  
All data and records generated during the conduct of this study will be kept 
confidential in accordance with Nemours policies. Data and associated records 
will be used for the sole purpose of the conduct of this study.   
  
Additional steps to ensure the privacy and confidentiality of participants will 
also be taken. Unique code numbers will be assigned to each participant and 
will be used to organize the data files. A file matching the code numbers to 

Page 20  
  
specific participants will be kept in a password-protected computer file that will 
only be accessible to Dr. Canter and the Research Coordinator. All identifiable 
information (e.g., consent forms) will be stored in a locked file cabinet in a 
locked office. Whenever possible, documents containing identifiable 
information (e.g., letters explaining the study prior to recruitment) will not be 
kept electronically or in printed form. Confidentiality will be discussed with all 
participants at the time of consent.  
Spanish language interpreters who complete the online evaluation form will not 
be required to provide any personal information.  
  
7. Facilities and Location of Study  
  
This is an eHealth intervention study, meaning that participants can complete all 
phases of the intervention at a location of their choosing. Consent for the study will 
be obtained during a previously scheduled medical visit or online via REDCap. No 
in-person study visits will be scheduled.   
 
The filming of the MFVDG will take place in a room at the Ronald McDonald House in 
Wilmington, DE. 
 
The Think Aloud testing of eSCCIP-SP will take place either at Nemours/AI DuPont 
Hospital for Children or remotely if the participant chooses to participate through a video 
chat platform. If the participant would like to participate in-person, the Research 
Coordinator will work to find a room to privately conduct the Think Aloud testing. 
  
8. Publication and Presentation Policy  
  
The results of this study may be presented at professional meetings or published in 
a professional journal. Any personal identifying information will not be included in 
these presentations or publications.    
  
The video clips from the MFVDG and skill-building videos will be used during trainings for 
future interventionists (such as psychologists or social workers) who are learning how to 
deliver this intervention to other families of children with cancer.  These video clips may 
also be included in professional presentations about this intervention (e.g., professional 
conference presentations), and will also be viewed by caregivers who complete the 
eHealth intervention (eSCCIP) and the in-person intervention (SCCIP).  They will not be 
used for advertising or marketing purposes. The use of the video clips for the purposes 
described about are covered by the study informed consent and the Authorization to 
Release Patient Photo/Video/Audio or other Protected Health Information (PHI) for 
Publication, and will also be reviewed in person with participants.   
     
 
 

Page 21  
  
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for pediatric health promoting and maintaining behaviors. Journal of Pediatric 
Psychology, 35(9), 937-949.   
3. File, T., & Camille, R. (2014). Computer and internet use in the United States: 2013.  
American Community Survey Reports. Washington, D.C.: U.S. Census Bureau.  
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http://www.census.gov/content/dam/Census/library/publications/2014/acs/acs-28.pdf   
4. Hocking, M.C., Kazak, A.E., Schneider, S., Barkman, D., Barakat, L.P., & Deatrick, 
J.A. (2014). Parent perspectives on family-based psychosocial interventions in 
pediatric cancer: A mixed-methods approach. Supportive Care in Cancer, 22, 1287-
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5. Kazak, A.E., Simms, S., Barakat, L.B., Hobbie, W., Foley, B., Golomb, V., & Best, M. 
(1999). Surviving cancer competently intervention program (SCCIP): A cognitive 
behavioral and family therapy intervention for adolescent survivors of childhood 
cancer and their families. Family Process, 38(2), 176-191.   
6. Kazak, A.E., Alderfer, M.A., Streisand, R., Simms, S., Rourke, M.T., Barakat, L.P., … 
Cnaan, A. (2004). Treatment of posttraumatic stress symptoms in adolescent 
survivors of childhood cancer and their families: A randomized clinical trial. Journal of 
Family Psychology, 18 (3), 493 – 504.   
7. Kazak, A.E., Simms, S., Alderfer, M.A., Rourke, M.T., Crump, T., McClure, K., Jones, 
P., ... Reilly, A. (2005). Feasibility and preliminary outcomes from a pilot study of a 
brief psychological intervention for families of children newly diagnosed with cancer. 
Journal of Pediatric Psychology, 30(8), 644-655.   
8. Kazak, A. & Noll, R. (2015). The integration of psychology in pediatric oncology 
research and practice: Collaboration to improve care and outcomes. American 
Psychologist, 70(2), 146 – 158.   
9. Lutz Stehl, M., Kazak, A.E., Alderfer, M.A., Rodriguez, A., Hwang, W.T., Pai, A.L.H., 
…Reilly, A. (2009). Conducting a randomized clinical trial of a psychological 
intervention for parents/caregivers of children with cancer shortly after diagnosis. 
Journal of Pediatric Psychology, 34(8), 803-816.  
10. Noll, RB, Sahler, OJ. Problem-solving skills training: Implementation and 
dissemination of an evidence-based intervention. Workshop presented at: 41st 
Annual Association of Pediatric Oncology Social Workers Conference; April, 2017; 
Chicago, IL.  
11. Palermo, T.M. (2008). Editorial: Section on innovations in technology in 
measurement, assessment, and intervention. Journal of Pediatric Psychology, 33(1), 
35-38.   
12. Ritterband, L.M., Borowitz, S.M., Cox, D.J., Kovatchev, B., Walker, L.S., Lucas, V., & 
Sutphen, J. (2005).  Using the Internet to provide information prescriptions. 
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13. Ritterband, L. M., Ardalan, K., Thorndike, F. P., Magee, J. C., Saylor, D. K., Cox, D. 
J., … Borowitz, S. M. (2008). Real World Use of an Internet Intervention for Pediatric 
Encopresis. Journal of Medical Internet Research,10(2), e16.  
14. Ritterband, L.M., Thorndike, F.P., Lord, H., Borowitz, S., Walker, L.S., Ingersoll, K.S., 
Sutphen, J., & Cox, D.J. (2013). An RCT of an internet intervention for pediatric 
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15. Steele, A.C., Mullins, L.L., Mullins, A.J., Muriel, A.C. (2015). Psychosocial 
interventions and therapeutic support as a standard of care in pediatric oncology. 
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16. Thorndike, F.P., Saylor, S.K., Bailey, E.T., Gonder-Frederick, L.A., Morin, C.M., & 
Ritterband, L.M. (2008). Development and perceived utility and impact of an internet 
intervention for insomnia. E-Journal of Applied Psychology, 4(2), 32 – 42.   
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Page 23  
  
Appendix  
 
A. 
eSCCIP-SP Objectives and Aims 
B. 
Development of eSCCIP-SP 
C. 
Aim 1 Recruitment Email 
D. 
Aim 2 Recruitment Letter 
E. 
Aim 2 Flyer 
F. 
eSCCIP-SP Recruitment Email (Spanish and English version) 
G. 
Gift Card Letter 
H. 
Aim 1 Focus Group Scripts  
I. 
Script for Caregiver Interviews 
J. 
Telehealth Script (Module 1) 
K. 
Telehealth Script (Module 2) 
L. 
Telehealth Script (Module 3) 
M. 
Fidelity Checklist 
N. 
Interpreter Evaluation Form 
O. 
Demographic Form  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Page 24  
  
 
Appendix A: eSCCIP-SP Objectives and Aims 
 
Objective and Specific Aims  
  
The Surviving Cancer Competently Intervention Program (SCCIP; R01CA63930) is an 
in-person psychosocial intervention for families of children with cancer with a strong 
evidence base. SCCIP uses principles from cognitive behavioral and family therapy to 
decrease posttraumatic stress symptoms and improve family functioning. The original 
SCCIP was a day-long workshop for adolescent cancer survivors and their parents and 
siblings (Kazak et al., 1999; Kazak et al., 2004). SCCIP has since been developed into 
an online intervention program. eSCCIP, an innovative eHealth intervention based on an 
efficacious intervention for caregivers of children with cancer (SCCIP-ND) has been 
developed as an accessible tool to provide critical psychosocial care to caregivers of 
children with cancer. eSCCIP is comprised of four online modules. Each module is 
comprised of a unique mix of original video content and interactive activities, and is 
complemented by a brief telehealth follow-up with an interventionist. The aim of this 
study is to develop a Spanish version of the eSCCIP (eSCCIP-SP) and determine the 
acceptability of the adaptation for key stakeholders. 
 
This study will create a new resource for Spanish-speaking families. It will provide these 
families with psychosocial care that will help support them through the cancer trajectory. 
The use of technology is novel and involving families in project development (i.e., 
prototype testing) is highly consistent with the Nemours True North mission. In addition 
to making psychosocial care accessible   to a broader group of families, online 
intervention tools may be a cost effective approach to providing this care. This study will 
be an important first step in providing a critical service to Spanish- speaking families of 
children with cancer. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Page 25  
  
Appendix B: Development of eSCCIP-SP 
 
This study includes the development (i.e., eSCCIP-SP) of an efficacious intervention for 
Spanish-speaking families to decrease psychological distress and risk for PTSD for 
children with cancer and their families. eSCCIP-SP will follow the same structure as 
eSCCIP: three technology-assisted follow-up sessions with a trained interventionist after 
the completion of each online module. Results from this study will be used to develop 
and conduct a larger scale trial of eSCCIP-SP, with the long-term goals of making 
eSCCIP-SP widely available to caregivers of children with cancer.  
 
1.1. 
Development of Online Interactive Tools 
 
Articulate Storyline 2 software will be used to develop the initial prototype of eSCCIP-SP. 
This involves a number of steps: 1) develop online interactive tools based upon 
cognitive-behavioral principles (e.g., identifying beliefs that may cause distress) 2) 
develop video content (e.g., writing scripts and recording videos to explain key 
therapeutic principles) 3) integrate video and interactive content, ensuring that content is 
presented in a visually appealing and logical manner, and ensuring seamless integration 
with our online delivery platform. Dr. Canter will work closely with Center for Pediatric 
Traumatic Stress staff who have extensive experience using Articulate Storyline 2 to 
build and deliver eLearning programs (e.g., courses on trauma-informed care for nurses). 
Expert consultation will also be provided at this phase from Dr. Lee Ritterband, who is a 
leading expert in eHealth within the field of health psychology. Dr. Ritterband is currently 
a PI or Co-I on seven federally funded eHealth studies, and has also pioneered several 
innovative and widely cited theories for developing and utilizing eHealth interventions. 
 
1.2. 
Specific eSCCIP-SP Module Content 
 
eSCCIP has three sessions, and components of each will initially be reconfigured into an 
Spanish language, interactive, user- friendly online module with different components , 
including videos and interactive worksheets. More specifically, each module will include 
interactive "clickable" web- based content, such as brief slideshows and activities, which 
will be accessible anywhere that participants have access to an internet-equipped 
computer. Each module will also include brief “teaching” videos (< 5 minutes in duration; 
see appendix for an example script), where Dr. Canter or Dr. Kazak will provide an 
overview of a key skill to supplement the interactive content. The content of these videos 
will be based on evidence-based content from the in-person SCCIP intervention and 
grounded in core cognitive-behavioral and family-systems theory. These videos, as well 
as the multifamily video discussion group, will be viewable at any time, as long as there 
is access to an internet-equipped computer.  Participants will be able to complete the 
module in one sitting or may complete components at different times. All content will also 
remain available to be viewed repeatedly by the participant. The only component of the 
intervention that will need to be scheduled with an interventionist is the brief telehealth 
follow-up that will serve to review intervention content and answer any questions. By 
providing a range of options for completion of the session material, eSCCIP-SP will be 
highly adaptable and flexible, which is critical for this population. Per recommendations 
by experts in the field (Wu et al., 2014), the development of our Spanish language 
version of eSCCIP will be an iterative process, and we will build our site module by 
module in an effort to quickly identify and correct any unanticipated challenges. This 

Page 26  
  
process corresponds directly to several steps in Ritterband and colleagues’ (2003) nine-
step model for developing interventions, including operationalizing an efficacious 
intervention by identifying critical ingredients (step 3), transforming treatment 
components into engaging internet content (step 5), and building the intervention (step 
8). An outline of eSCCIP, with proposed components to be translated into eSCCIP-SP, is 
provided in the sections that follow modules outlined in Section 3.1. 
 
1.3. 
Development of Multifamily Video Discussion Group (MFVDG) Content 
 
A key component of eSCCIP is the use of multiple family video discussion groups 
(MFVG), which have been previously filmed and serve as a proxy of participants’ 
interaction with other parents. The videos are designed to capture themes common 
among caregivers of children with cancer (e.g., anger, guilt, emotional exhaustion), 
examples of coping (e.g. putting things in perspective, connecting with others, using 
humor as appropriate), and impact on the family over time (e.g., siblings, grandparents, 
thinking about the future). They are also meant to stimulate further thought and 
conversation about the caregivers own experiences with cancer. The video family 
discussion groups are well-received by caregivers (Kazak et al., 2005). However, the 
current videos used in eSCCIP are only available in English. In order to ensure that the 
videos remain relevant and are reflective of our diverse patient population, the 
development of eSCCIP-SP will include recording new video family discussion groups to 
use in the intervention. We will work with oncology leadership to identify a diverse group 
of participants (in terms of child’s cancer diagnosis, treatment phase, age, race, ethnicity, 
socioeconomic status, and family structure) and approach families about participation in 
this endeavor. A group of five families would be ideal for this group. Interested caregivers 
will be consented in accordance with IRB policies prior to being filmed and will be 
compensated for their time. These caregivers will be a part of the “eSCCIP-SP family 
council”. In addition to participating in the filming of the videos, the eSCCIP-SP family 
council may also review edited videos and other materials in order to provide feedback 
on this critical component of project development. 
 
By agreeing to participate in the MFVDG component of the study, participants in the 
multifamily video discussion group are agreeing to the release/broadcast of identifiable 
information about themselves and their child.  The uses of these videos are explicitly 
detailed in the consent form, and will be reviewed with the participants prior to the 
initiation of any filming.  Any participants who are not comfortable being filmed in this 
capacity will be able to opt out prior to the beginning of filming. Additionally, participants 
will be able to opt out at any point during the day of filming by telling a member of the 
study team that they no longer wish to participate.  Participants will also be able to opt 
out of the video group during the video editing process, up until the videos have been 
finalized.  Any participant who withdraws in this manner will be edited out of all of the 
final videos by our videography team.   
 
1.4. 
Development of Skill-Building Videos 
 
All of the eSCCIP-SP modules will include “teaching” videos, which will feature Dr. Kazak 
and/or Dr. Canter providing an overview of a key therapeutic skill to be used by 
participants. Interviews with other study personnel and clips from the MFVDG may also 

Page 27  
  
be integrated into these skill-building videos.  Scripts for these videos will be written by 
Drs. Kazak and Canter, and will be recorded by Dan Huber (Video Action Productions). 
 
1.5 Think Aloud Testing of eSCCIP-SP 
 
Five Spanish-speaking caregivers of children with cancer will be asked to review the first 
version of eSCCIP-SP through a think-aloud testing session. Purposeful sampling will be used 
to ensure adequate representation of diversity of cancer diagnoses (e.g., leukemia, solid 
tumors). Eligible caregivers will be approached in person or by phone about participation in the 
study by Spanish-speaking study personnel. 
 
Think-Aloud testing is a widely used technique for collecting preliminary usability and 
feasibility data for eHealth interventions.  Five Spanish-speaking families will be recruited to 
participate in Think-Aloud testing. In order to quickly identify any challenges and adapt the 
prototype as needed, the first three families who participate in Think-Aloud testing will be 
scheduled appointments to test eSCCIP-SP. Caregivers can choose whether they would like 
to review eSCCIP-SP in one study session or two shorter study sessions. Any changes that 
are deemed necessary after the review of each module will be made. This will allow for rapid 
responsiveness to participant feedback and quick refinement of the intervention.   
 
After consent to participate is obtained, participants will be given a secure log-in and 
password to access the modules on the eSCCIP-SP website. For caregiver convenience, 
participants can choose to either participate in-person at Nemours/AI Dupont Hospital for 
Children or remotely through a Nemours approved video chat platform. All Think-Aloud 
sessions will be recorded. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Page 28  
  
 
 
 
Appendix C: Recruitment Email for Focus Group 
 
Dear _________________________, 
 
We know that having a child with cancer is hard. Many families feel upset and benefit 
from receiving support for their child and family. Our research group has developed an 
online intervention for parents and caregivers of children with cancer. It’s called 
eSCCIP, or Electronic Surviving Cancer Competently Intervention Program. eSCCIP 
offers support to caregivers as you navigate this hard time. It is based off a current in-
person intervention that aims to help families cope with pediatric cancer.  
 
Your cancer care team has identified you as someone who might be interested in 
participating in helping us further develop eSCCIP. We would like to get your feedback 
regarding your thoughts on the eSCCIP website as well as any potential challenges 
caregivers might face when completing an online intervention. 
 
We will be holding a focus group with other caregivers of children with cancer to gather 
feedback. The one-time session will be approximately two hours and will be led by 
Kimberly Canter, Ph.D., who is the principal investigator for this study. We will provide 
dinner and childcare, and you will be compensated for your participation. We will 
follow-up by phone or in-person to discuss this project and your potential involvement 
in more detail within the next two weeks. This decision is entirely yours, and your 
response will not affect your child’s care in any way.  
 
If you would like to opt out, have any questions, or would like more information about 
our project, please contact one of the study coordinators, Alejandra Perez Ramirez at 
alejandra.perezramirez@nemours.org or (302) 298-7571 or Gaby Vega at 
gabriela,vega@nemours.org;  (302) 298-7937. 
 
We hope to speak with you soon. 
 
 
 
Sincerely,  
 
 
 
 
 
 
 
 
 

Page 29  
  
 
Appendix D: Aim 2 Recruitment Letter 
 
Dear 
We know that having a child with cancer is hard. Many families feel upset and can 
benefit from additional support for their child and family. Our research group here at 
Nemours has developed a new online program for parents and caregivers of children 
with cancer, called eSCCIP (The Electronically Surviving Cancer Competently 
Intervention Program). Our team worked very hard to create eSCCIP in order to 
provide families with extra support during this difficult time. 
**Please take a moment to review the flyer included in this envelope to learn more 
about eSCCIP and how it can help you and your family. ** 
We are currently looking for parents and caregivers to participate in a research study 
testing eSCCIP. If you agree to participate, we will send you a set of online surveys to 
complete prior to starting the program. We will then send you a unique username and 
password to log on to the eSCCIP website. You can complete eSCCIP entirely online. 
It can be done anywhere and completely at your convenience (on your phone, tablet, 
or computer). Once you complete eSCCIP, you will be asked to complete another set 
of online surveys. You will be paid $50 for your participation. 
If you want to learn more or are interested in trying eSCCIP, please contact Alejandra 
Perez Ramirez (study coordinator) by phone at 302-409-0593, or by email at 
Alejandra.PerezRamirez@nemours.org. If you do not want to be contacted regarding 
this research opportunity, please let us know by phone or email. If we do not hear 
from you, we will contact you by phone in about 1 week. We hope you are willing to 
take part in this important work. 
Sincerely, 
Kimberly Canter, Ph.D. 
Psychologist, Center for Healthcare Delivery Science 
Anne Kazak, Ph.D., ABPP 
Co-Director, Center for Healthcare Delivery Science 

 
Page 30 
 
APPENDIX E: FLYER 
 
 

Page 31  
  
APPENDIX F: Spanish Recruitment Email 
 
Estimado/a [Nombre del participante]:  
 
Nosotros estamos conscientes de que tener un hijo/a con cáncer es difícil. Muchas 
familias se sienten tristes, pero se pueden beneficiar cuando reciben ayuda y apoyo 
para su hijo/a y familia. Nuestro equipo de investigadores ha creado un programa de 
intervención disponible en línea para padres o quienes están al cuidado de niños con 
cáncer. Se llama eSCCIP, por sus siglas en inglés, o el Programa Electrónico de 
Intervención para Superar el Cáncer Competentemente. eSCCIP le ofrece ayuda y 
apoyo para que usted y su familia puedan manejar sus sentimientos de mejor manera 
durante este tiempo difícil. Por el momento, la intervención solo está disponible en el 
idioma inglés, pero nos gustaría traducir y adaptar el programa para familias cuya 
lengua principal es el español.  
 
Usted ha sido nominado por su equipo médico del hospital como alguien que estaría 
interesado en participar en este estudio. El primer paso de este proyecto será grabar 
un video de una conversación con varios padres de niños con cáncer. En esta 
conversación, hablaremos sobre temas relacionados de sus experiencias con su hijo 
con cáncer. La conversación se llevará de 3-5 horas en un día.    
 
El cuidado de niños estará disponible y le proveeremos la comida. Al terminar la 
conversación, también recibirá una tarjeta de débito de $100. En las próximas dos 
semanas, le estaremos contactando por teléfono o en su próxima cita en el hospital. 
Le hablaremos en más detalles sobre el proyecto y como se puede involucrar en 
nuestro proyecto.  
 
Si le gustaría participar o si tiene más preguntas sobre el estudio, por favor 
contáctense con Alejandra Perez Ramirez al 302-298-7571 o 
Alejandra.perezramirez@nemours.org o Gaby Vega al 302-298-7937 o 
Gabriela.vega@nemours.org. 
 
¡Esperamos hablar con usted pronto! 
 
Gracias,  
 
 
 
 
 
 
 
 
 

Page 32  
  
APPENDIX F: Spanish Recruitment Email (translated in English) 
 
Dear _________________________, 
 
We know that having a child with cancer is hard. Many families feel upset and benefit 
from receiving support for their child and family. Our research group has developed an 
online intervention for parents and caregivers of children with cancer. It’s called 
eSCCIP in English, or Electronic Surviving Cancer Competently Intervention Program. 
eSCCIP offers support to caregivers as you navigate this hard time. It is based off a 
current in-person intervention that aims to help families cope with pediatric cancer. 
eSCCIP is currently only available in English, but we would like to adapt and translate 
it for Spanish-speaking families. 
 
Your cancer care team has identified you as someone who might be interested in 
participating in this study. The first step of adapting eSCCIP in Spanish is recording a 
multi-family video discussion with various caregivers who have children with cancer. 
During this discussion, we will talk about your experience with your child with cancer. It 
will last approximately 3 to 5 hours in one day. 
 
We will provide dinner and childcare, and you will be compensated for your 
participation. You will receive a $100 gift card at the end of the discussion. We will 
follow-up by phone or in-person to discuss this project and your potential involvement 
in more detail within the next two weeks. We will talk to you about the project in more 
detail and how you can get involved. 
 
If you would like to participate or have any questions about our project, please contact 
one of the study coordinators, Alejandra Perez Ramirez at 
alejandra.perezramirez@nemours.org or (302) 298-7571 or Gaby Vega at 
gabriela.vega@nemours.org or (302) 298-7937. 
 
We hope to speak with you soon! 
 
 
 
Sincerely,  
 
 
 
 
 
 
 
 
 

Page 33  
  
Appendix G: Gift Card  Letter 
 
  
[INSERT DATE]  
  
  
  
Dear [INSERT PARTICIPANT NAME],  
  
  
Thank you for participating in the study, “Pilot Testing eSCCIP: An eHealth 
Intervention for Parents of Children with Cancer.” This letter includes your gift card 
compensation for study participation. This gift card will be loaded with $50 on it once it 
has been activated.   
  
Your gift card is NOT ACTIVATED/LOADED with MONEY.   
  
To activate your gift card:  
  
• 
Please contact Gaby Vega at gabriela.vega@nemours.org or (302-298-7937).  
 
OR 
 
• 
Please contact Alejandra Perez Ramirez at 
alejandra.perezramirez@nemours.org or (302- 298-7571). 
  
You will be asked to provide the following information:  
  
• 
Your Full Name  
• 
The gift card number o Shown on the front of the card as “THANKS XXX”  
 
Participating child’s date of birth  
  
If you choose email, you will receive an email reply when the card is activated.  
  
  
Thank you,  
  
Kimberly Canter, PhD  
Study Principal Investigator  
  
Gabriela Vega, M.S 
Study Coordinator  
 
Alejandra Perez Ramirez, B.A. 
Study Coordinator 
    
 

Page 34  
  
Appendix H: Script for Caregiver Focus Group 
Script for Caregiver Focus Group 
Materials:  
eSCCIP modules on big screen, printed screenshots of modules, vidyo prepped 
on laptop and tablets, sample recruitment materials for feedback (flyers) 
Equipment:   Digital audio recorder  
Time: 
Approximately 90 minutes 
 
Reminders of Key Principles for Facilitating Focus Groups 
• 
Remember to treat this as a conversation – be aware of power differentials.  
• 
Let the participants lead and provide information that they feel is important. As the 
interviewer, your job is to probe issues to obtain greater depth and facilitate a discussion 
between and among participants as this has the potential to bring out unique 
perspectives and fresh ideas. 
• 
Things to avoid: 
o Leading questions 
o Individuals dominating the group 
o Moving too quickly from one topic to the next 
o Interrupting the interviewee (in most cases, see below) 
o Confirmations such as “yes” or “right” (Try, “uh huh”; “ah” or “I see”) 
• 
Things to do: 
o Join with the participants before the group and at the beginning of the group. 
o Be comfortable with silence! Participants may be processing 
o Use probes: Who, what (e.g. what do you do?), where, when, how (e.g. how do 
you feel?), why [limit use – implies that a correct answer exists], describe, tell me 
about, what was happening at the time 
o Ask for more information when something is confusing or seems contradictory 
o Reflect back what you hear 
o Actively invite input from others if individuals begin to dominate  
o As you formulate perspectives on what you are being told, express that and ask if 
you have it right – be open to being corrected (“I think I am hearing you say … Is 
that right?) 
o Provide closure at the end of the group; e.g. do a “round robin.” 
• 
Rephrase questions using participants words 

Page 35  
  
• 
It’s ok to interrupt a participant who goes on a tangent. Just be sure to do it tactfully – 
e.g. “switching gears”, visual cue 
Welcome and Introduction 
Thank you for taking the time for this focus group. Before we begin, I want to review what we 
will talk about today. As we go along, feel free to stop me if you have any questions. 
 
Key Points: 
• 
Providing psychosocial care to help patients and families is an important part of treatment  
• 
We have developed eSCCIP, which is our online program for caregivers of children with 
cancer. Up to two caregivers from the same family can participate, and caregivers do not 
have to be parents. Some of you have already participated in eSCCIP, and some of you 
have not.  
• 
eSCCIP is adapted from an in-person program.  We are hoping that the online version will 
allow us to help even more families.  
• 
We want to focus tonight on understanding how we can make eSCCIP as interesting, 
important, and engaging to parents as we can. We want to make sure that we are doing 
everything that we can to keep people interested and engaged in eSCCIP after they agree 
to participate, and to develop recruitment procedures that make it easy for parents to start 
eSCCIP and complete all the sessions. 
• 
Your feedback is very important to us and will help us make improvements to the program 
before testing it with a larger group of families.  Your participation today will help us provide 
better services to families who have a child with cancer. 
• 
All information will be confidential. The tapes are confidential and will not be shared with 
people outside of our research team.  They will be stored on password protected computers. 
Our conversation tonight won’t be linked in any way to identifying information about you or 
your child. 
• 
Do you have any questions? 
• 
Do you agree to participate? (Consent procedures as determined with IRB review will be 
followed).  
 
Introductions: 

Page 36  
  
To get started, let’s briefly learn a little bit about each other. We’re going to keep everyone to a 
maximum of 90 seconds! Please share your name, child with cancer’s name, child’s diagnosis, 
and your opinion about the pros and cons of participating in online programs. 
About eSCCIP: 
We’d like to provide a brief overview of eSCCIP. The purpose of eSCCIP is to provide parents 
and caregivers with additional tools to help cope with the challenges associated with cancer 
diagnosis and treatment. By doing so, we hope to help improve overall family functioning, and 
decrease things like anxiety, distress, and posttraumatic stress. eSCCIP has four separate 
self-directed parts, which we call modules. The first is an introduction to the program. Then, 
there are three core sessions with content, which are followed by a telehealth, or video, follow-
up with a therapist. We have some screenshots of eSCCIP, and we will return to these later.  
About Recruiting Caregivers into the Study: 
Research Coordinator to talk briefly about current recruitment procedures. 
• 
What is eSCCIP? 
o If you were approached about eSCCIP, what type of information you would 
like to have before deciding whether or not to participate in the program? 
o What type of information would you like to have before deciding whether or 
not to participate in a study evaluating the program?  
o How should this information be provided to parents and families? 
o What questions or concerns might you have about participating in eSCCIP? 
o What about a study evaluating the program? 
o Please share any thoughts about what we can do to alleviate any concerns 
about participation.  
• 
When to approach parents?  
o We are interested in learning about the best time and place to approach 
caregivers about participating in eSCCIP. Please discuss your thoughts about 

Page 37  
  
this. For example, should we reach out during hospitalizations or outpatient 
appointments?  
o Who is the best person to initially introduce eSCCIP to caregivers of children 
with cancer? What is the best way for this person to contact caregivers about 
the program? 
▪ 
Prompt for more detailed information – print media, email, video 
overview 
 
o We are interested to hear your thoughts about the timing of eSCCIP. For 
example, are there times during treatment when this program would be 
particularly helpful or, on the contrary, times when it would not be helpful?  
o Related to this question – when would it be most helpful to first learn about 
eSCCIP?  
• 
Who should be approached? 
o We are interested in supporting all parents and families of children with cancer, 
and we want to make sure that we provide support to individuals who need it the 
most. Many times, individuals who are most “at risk” – for example, people who 
report very high levels of distress -  are less likely to participate in programs 
focused on social or emotional health. Should we concentrate on individuals who 
may be most at risk?  How can we engage these caregivers? 
o Are there any individuals who should not be approached about participating in 
eSCCIP?  
o Please share your thoughts about multiple caregivers from the same family 
participating in eSCCIP. What advantages do you see about including multiple 
caregivers? How about any disadvantages? 
o What thoughts do you have about how to best engage multiple caregivers from 
the same family to participate in eSCCIP? 
• 
What are barriers to participation?  

Page 38  
  
o What are logistical barriers to participating in a program like eSCCIP? How 
about a study evaluating eSCCIP?  We want to make sure that things like 
reliable access to the internet or busy schedules do not prevent people from 
participating in eSCCIP. Please discuss any barriers that might prevent 
someone from joining our study.  
o What are emotional or social barriers to participation?  Please share any 
feedback about the potential impact of this sort of barrier.  
o What about barriers that might come up over the course of participating in 
eSCCIP? How about over the course of participating in a study evaluating 
eSCCIP? Participation takes about one month from start to finish.   
• 
What would facilitate participation? 
o [For each barrier identified above] What supports could we provide to help 
eliminate any barriers that might emerge? 
o What supports could we provide to help any unexpected barriers that might 
come up after caregivers agree to participate? 
About onboarding and scheduling: 
Research coordinator to talk briefly about current onboarding/ set-up procedures. 
• 
What ideas do you have about teaching caregivers how to use the different components 
of eSCCIP? How should this be done?  
o Probes: in person, by phone, by video, over email? 
• 
How could we help caregivers understand the different parts of eSCCIP? For example, 
what would help you remember your log-in and how to get to the website? 
• 
What kind of reminders and help with scheduling would be beneficial for you?  
• 
What would you like to have access to between eSCCIP sessions – for example, would 
features like being able to bookmark pages or see your text responses be helpful to 
you?  

Page 39  
  
About keeping participants interested : 
Research coordinator to talk briefly about current procedures (text reminders, emails) 
• 
What would be helpful for keeping caregivers interested and engaged throughout the 
whole program? 
o Please discuss any supports that our research team can provide during the 
program. For example, what can we do to make it easier for participants to 
complete the online modules and telehealth follow-up? 
• 
What are some ideas that you have for customizing the program to meet individual 
needs? 
o Please discuss your thoughts about the degree of flexibility that we should offer 
caregivers who are participating in eSCCIP. For example, should telehealth 
sessions be optional? Should we offer in-person follow-up? 
o In families with two interested caregivers, how should eSCCIP be tailored to 
meet the needs of both caregivers? How about the completion of the website and 
telehealth follow-up?  
• 
What about follow-up? 
o How can we ensure that we are identifying high levels of distress during the 
program and providing appropriate follow-up supports and resources? 
o What kind of follow-up, if any, would be useful after completing eSCCIP? 
▪ 
If appropriate, prompt for more specific information about type of follow-
up (e.g., telehealth check-ins, formal outpatient therapy), utility of 
community referrals, ongoing access to eSCCIP website. 
 
About Website: 
• 
We are interested in learning more about how your family uses technology. Do you 
have access to a tablet/computer/smartphone at home, work or someplace else that 
is convenient?  Please tell us about the devices that you use on a regular basis. 

Page 40  
  
o Prompt: Do these devices have internet access? 
 
• 
What type of device and where would be most convenient for completing eSCCIP? 
o Prompt about devices that are already accessible, and also ask about 
technology that the family may not have (such as a tablet). 
 
• 
Where would you use this device to complete eSCCIP? 
 
• 
 (Pull up features of eSCCIP using screenshots and power point display)  
o What features would you expect when you use the website? 
▪ 
For example, are there certain functions that we could develop that 
would make the user experience better for participants? It might be 
helpful to think about other websites that you frequently use, and what 
you like about those websites.  
• 
Before we wrap up our focus group, please provide us with any other feedback about 
eSCCIP that you feel would be important or helpful for us to know.  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Page 41  
  
Appendix I: Script for Caregiver Interviews 
Script for Caregiver Interviews 
Materials:  
eSCCIP modules on big screen, printed screenshots of modules, vidyo prepped 
on laptop and tablets, sample recruitment materials for feedback (flyers) 
Equipment:   Digital audio recorder  
Time: 
Approximately 90 minutes 
 
Reminders of Key Principles for Conducting Qualitative Interviews 
• 
Remember to treat this as a conversation – be aware of power differentials.  
• 
Let the participant lead and provide information that they feel is important. As the 
interviewer, your job is to probe issues to obtain greater depth and facilitate a discussion 
between and among participants as this has the potential to bring out unique 
perspectives and fresh ideas. 
• 
Things to avoid: 
o Leading questions 
o Individuals dominating the group 
o Moving too quickly from one topic to the next 
o Interrupting the interviewee (in most cases, see below) 
o Confirmations such as “yes” or “right” (Try, “uh huh”; “ah” or “I see”) 
• 
Things to do: 
o Join with the participant before the group and at the beginning of the group. 
o Be comfortable with silence! Participant may be processing 
o Use probes: Who, what (e.g. what do you do?), where, when, how (e.g. how do 
you feel?), why [limit use – implies that a correct answer exists], describe, tell me 
about, what was happening at the time 
o Ask for more information when something is confusing or seems contradictory 
o Reflect back what you hear 
o As you formulate perspectives on what you are being told, express that and ask if 
you have it right – be open to being corrected (“I think I am hearing you say … Is 
that right?) 
• 
Rephrase questions using participants words 
• 
It’s ok to interrupt a participant who goes on a tangent. Just be sure to do it tactfully – 
e.g. “switching gears”, visual cue 

Page 42  
  
Welcome and Introduction 
Thank you for taking the time for this interview. Before we begin, I want to review what we will 
talk about today. As we go along, feel free to stop me if you have any questions. 
 
Key Points: 
• 
Providing psychosocial care to help patients and families is an important part of treatment  
• 
We have developed eSCCIP, which is our online program for caregivers of children with 
cancer. Up to two caregivers from the same family can participate, and caregivers do not 
have to be parents. Some of you have already participated in eSCCIP, and some of you 
have not.  
• 
eSCCIP is adapted from an in-person program.  We are hoping that the online version will 
allow us to help even more families.  
• 
We want to focus tonight on understanding how we can make eSCCIP as interesting, 
important, and engaging to parents as we can. We want to make sure that we are doing 
everything that we can to keep people interested and engaged in eSCCIP after they agree 
to participate, and to develop recruitment procedures that make it easy for parents to start 
eSCCIP and complete all the sessions. 
• 
Your feedback is very important to us and will help us make improvements to the program 
before testing it with a larger group of families.  Your participation today will help us provide 
better services to families who have a child with cancer. 
• 
All information will be confidential. The tapes are confidential and will not be shared with 
people outside of our research team.  They will be stored on password protected computers. 
Our conversation tonight won’t be linked in any way to identifying information about you or 
your child. 
• 
Do you have any questions? 
• 
Do you agree to participate? (Consent procedures as determined with IRB review will be 
followed).  
 
Introductions: 
To get started, let’s briefly learn a little bit about each other. Please share your name, child 
with cancer’s name, child’s diagnosis, and your opinion about the pros and cons of 
participating in online programs. 
About eSCCIP: 

Page 43  
  
We’d like to provide a brief overview of eSCCIP. The purpose of eSCCIP is to provide parents 
and caregivers with additional tools to help cope with the challenges associated with cancer 
diagnosis and treatment. By doing so, we hope to help improve overall family functioning, and 
decrease things like anxiety, distress, and posttraumatic stress. eSCCIP has four separate 
self-directed parts, which we call modules. The first is an introduction to the program. Then, 
there are three core sessions with content, which are followed by a telehealth, or video, follow-
up with a therapist. We have some screenshots of eSCCIP, and we will return to these later.  
About Recruiting Caregivers into the Study: 
Research Coordinator to talk briefly about current recruitment procedures. 
• 
What is eSCCIP? 
o If you were approached about eSCCIP, what type of information you would 
like to have before deciding whether or not to participate in the program? 
o What type of information would you like to have before deciding whether or 
not to participate in a study evaluating the program?  
o How should this information be provided to parents and families? 
o What questions or concerns might you have about participating in eSCCIP? 
o What about a study evaluating the program? 
o Please share any thoughts about what we can do to alleviate any concerns 
about participation.  
• 
When to approach parents?  
o We are interested in learning about the best time and place to approach 
caregivers about participating in eSCCIP. Please discuss your thoughts about 
this. For example, should we reach out during hospitalizations or outpatient 
appointments?  
o Who is the best person to initially introduce eSCCIP to caregivers of children 
with cancer? What is the best way for this person to contact caregivers about 
the program? 

Page 44  
  
▪ 
Prompt for more detailed information – print media, email, video 
overview 
 
o We are interested to hear your thoughts about the timing of eSCCIP. For 
example, are there times during treatment when this program would be 
particularly helpful or, on the contrary, times when it would not be helpful?  
o Related to this question – when would it be most helpful to first learn about 
eSCCIP?  
• 
Who should be approached? 
o We are interested in supporting all parents and families of children with cancer, 
and we want to make sure that we provide support to individuals who need it the 
most. Many times, individuals who are most “at risk” – for example, people who 
report very high levels of distress -  are less likely to participate in programs 
focused on social or emotional health. Should we concentrate on individuals who 
may be most at risk?  How can we engage these caregivers? 
o Are there any individuals who should not be approached about participating in 
eSCCIP?  
o Please share your thoughts about multiple caregivers from the same family 
participating in eSCCIP. What advantages do you see about including multiple 
caregivers? How about any disadvantages? 
o What thoughts do you have about how to best engage multiple caregivers from 
the same family to participate in eSCCIP? 
• 
What are barriers to participation?  
o What are logistical barriers to participating in a program like eSCCIP? How 
about a study evaluating eSCCIP?  We want to make sure that things like 
reliable access to the internet or busy schedules do not prevent people from 
participating in eSCCIP. Please discuss any barriers that might prevent 
someone from joining our study.  

Page 45  
  
o What are emotional or social barriers to participation?  Please share any 
feedback about the potential impact of this sort of barrier.  
o What about barriers that might come up over the course of participating in 
eSCCIP? How about over the course of participating in a study evaluating 
eSCCIP? Participation takes about one month from start to finish.   
• 
What would facilitate participation? 
o [For each barrier identified above] What supports could we provide to help 
eliminate any barriers that might emerge? 
o What supports could we provide to help any unexpected barriers that might 
come up after caregivers agree to participate? 
About onboarding and scheduling: 
Research coordinator to talk briefly about current onboarding/ set-up procedures. 
• 
What ideas do you have about teaching caregivers how to use the different components 
of eSCCIP? How should this be done?  
o Probes: in person, by phone, by video, over email? 
• 
How could we help caregivers understand the different parts of eSCCIP? For example, 
what would help you remember your log-in and how to get to the website? 
• 
What kind of reminders and help with scheduling would be beneficial for you?  
• 
What would you like to have access to between eSCCIP sessions – for example, would 
features like being able to bookmark pages or see your text responses be helpful to 
you?  
About keeping participants interested : 
Research coordinator to talk briefly about current procedures (text reminders, emails) 
• 
What would be helpful for keeping caregivers interested and engaged throughout the 
whole program? 

Page 46  
  
o Please discuss any supports that our research team can provide during the 
program. For example, what can we do to make it easier for participants to 
complete the online modules and telehealth follow-up? 
• 
What are some ideas that you have for customizing the program to meet individual 
needs? 
o Please discuss your thoughts about the degree of flexibility that we should offer 
caregivers who are participating in eSCCIP. For example, should telehealth 
sessions be optional? Should we offer in-person follow-up? 
o In families with two interested caregivers, how should eSCCIP be tailored to 
meet the needs of both caregivers? How about the completion of the website and 
telehealth follow-up?  
• 
What about follow-up? 
o How can we ensure that we are identifying high levels of distress during the 
program and providing appropriate follow-up supports and resources? 
o What kind of follow-up, if any, would be useful after completing eSCCIP? 
▪ 
If appropriate, prompt for more specific information about type of follow-
up (e.g., telehealth check-ins, formal outpatient therapy), utility of 
community referrals, ongoing access to eSCCIP website. 
 
About Website: 
• 
We are interested in learning more about how your family uses technology. Do you 
have access to a tablet/computer/smartphone at home, work or someplace else that 
is convenient?  Please tell us about the devices that you use on a regular basis. 
o Prompt: Do these devices have internet access? 
 
• 
What type of device and where would be most convenient for completing eSCCIP? 
o Prompt about devices that are already accessible, and also ask about 
technology that the family may not have (such as a tablet). 
 

Page 47  
  
• 
Where would you use this device to complete eSCCIP? 
 
• 
 (Pull up features of eSCCIP using screenshots and power point display)  
o What features would you expect when you use the website? 
▪ 
For example, are there certain functions that we could develop that 
would make the user experience better for participants? It might be 
helpful to think about other websites that you frequently use, and what 
you like about those websites.  
• 
Before we wrap up, please provide us with any other feedback about eSCCIP that 
you feel would be important or helpful for us to know.  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Appendix J: Telehealth Script (Module 1)  
 
Module 1 Telehealth Review 
Identifying Beliefs about Cancer: 
Using The ABC Model to Understand the Relationship Between Adversities, Beliefs and 
Consequences 
 
Learning Goals of Module 1:  
Identify beliefs about cancer, its treatment, and the impact on the family. 
 
1. Identify beliefs about illness and treatment. 
2. Examine how beliefs influence emotions, behaviors, and relationships. 
3. Recognize how each family members beliefs influence the whole family. 
4. See that beliefs are normal and feel less isolated and alone. 
 
1. Begin each session checking-in with the family 
 
2. Review of Module 1 Content 
Ok. I wanted to begin by talking about your reactions to Module 1 and the content. 
  
[Briefly Review Videos] First, let’s talk about the videos of the family discussion group. Did 
you connect with anything that was said or did anything jump out? 
 
[Review the ABC Model] Let’s talk about the tool that you were introduced to and that’s the 
ABC model. So you learned about how beliefs [The “B”] about an adversity [The “A”] has 
consequences [The “C”] in terms of how we feel, act, and relate to others.  So you can think 
of: 
 
A/Adversity = Things that are tough, sad or scary 
B/Beliefs = Thoughts or feelings related to the Adversity 
C/Consequences = Outcomes, or the way things turn out due to the impact of our feelings and 
actions on others. 
 
*It’s important to note that: 
Beliefs are not good or bad and it’s individual. Each family members has their own thoughts 
and beliefs about a challenge or adversity. 
 
Free Response Exercise Review - The ABC Model:  Your Experience  
Let’s talk about your own responses you shared in the free response segment of Module 1 
[Interventionist has reviewed the free responses prior to the telehealth session. It is 
important that interventionists are incorporating the family’s own work that they have 
done into each telehealth follow-up.] 
• 
Review responses that inquire if there are other examples that might be helpful to 
discuss  
Are there questions you have about the ABC tool? 
• 
Prompt for what other family members might be thinking 

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• 
Prompt for outcomes/consequences for other caregivers 
 
3. Summary 
Do you see the value of just being aware of this process? It’s really a new way of coping with 
emotional and social challenges. This tool helps us to be aware of how a particular belief 
about a challenge: 
• 
Makes me feel 
• 
What I do when I feel that way 
• 
And, the impact that might have on my relationships with other family members, medical 
team. My child, etc. 
 
4. Wrap-Up and Set-Up for Module 2 
With the next module you will get a better understanding of The “B”, beliefs about adversities 
and how our next tool called The Footsteps Strategy can help you to reframe beliefs in a way 
that enhances family functioning and better coping. 
 
 
Module 1 Free Response Exercise: The ABC Model- Your experience 
 
Adversity: Use the box to type in your own adversity. 
Belief: Use the box to enter a belief for each caregiver related to the adversity you entered in 
the previous box. 
Consequence: Use the box to enter a consequence of the adversity and belief you entered 
earlier. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Appendix K: Telehealth Script (Module 2)  
 
Module 2 Telehealth Review 
Footsteps to Reframing 
Changing Beliefs: The Footsteps Strategy 
 
Learning Goals of Module 2 –  
Identify beliefs about cancer, its treatment, and the impact on the family 
 
1. See that having distressing beliefs at the diagnosis and treatment of your child’s cancer 
is understandable and normal. 
2. Recognize the link between distressing beliefs and consequences. 
3. Watch families in the videos use The Footsteps Strategy to reframe their beliefs to 
enhance family functioning. 
4. Practice using The Footsteps Strategy to reframe a distressing belief of your own. 
 
 
1. Begin each session checking-in with the family 
 
2. Any Module 1/ABC follow-up? 
 
3. Review of Module 2 Content 
Ok. I wanted to begin by talking about your reactions to Module 2 and the content.  
 [Review The Footsteps Strategy] Let’s talk about the tool that you were introduced to: The 
Footsteps Model or Strategy. It seems simple but it does take some effort. It is a different 
way of looking at adversity. It’s a process of changing your beliefs or, reframing. And, as the 
module stressed, it is not that your beliefs are good or bad, it’s just that there are times 
when a different belief or perspective is more helpful. We really do all get stuck in our beliefs 
at times and this is a tool that helps us get “unstuck.” 
 
So let’s review the 4 specific footsteps 
 
Let go of uncontrollable: Recognize what is beyond your control. In the video, one of the 
mothers was talking about how she is “a controlling mom” and how she had to let go of that. 
Another parent in the clip talked about coming to terms with “the fact that I can’t fix this.”  
 
Controllable: Focus on things you can control like asking for help. In the video one of the 
parents was talking about the family looking at treatment days as “being in the cancer world” 
and, focusing on routine and living their lives as normally and “care free” as possible when 
they were not in the “cancer world 
 
Acknowledge and apply your strengths and your family’s strengths: What strengths have 
helped you in the past? In the video, one of the dads was talking about how sense of humor 
has always helped them to cope with challenges.  
Using positives to your advantage: Looking at adversity through a different lens. For 
example, in the video, a father was talking about watching his daughter take her pills with an 

Page 51  
  
attitude of, “let’s just get through this and move on … we will be one step closer to being 
cancer-free.” He said, “a light bulb went off and I decided we needed to be more positive, like 
her.” 
 
Free Response Exercise Review – Applying the 4 Footsteps:  Your Experience  
Now, let’s talk about your own responses you shared in the free response segment of Module 
2 [Interventionist has reviewed the free responses prior to the telehealth session. It is 
important that the interventionists are incorporating the family’s own work that they 
have done into each telehealth follow-up.] 
• 
Review responses than inquire if there are other examples that might be helpful to 
discuss. 
Finally, can we think about one of the adversities we talked about last time and apply the 
footsteps? 
 
4. Summary 
So by applying The Footsteps Strategy to upsetting and difficult situations it helps us to 
reframe or look at the adversity in a different way that can have more positive 
consequences for you, your child, and family.  
 
5. Wrap-Up and Set-Up for Module 3:The Family Survival Roadmap 
 Any questions about the two tools: the ABC Tool and The Footsteps Strategy? 
The last module you will be introduced to a tool we call The Family Survival Roadmap. 
This helps you to navigate the cancer experience by reflecting on where you have been, 
where you are now and where you might be in the future. It is a tool that can help to put 
cancer in its place. 
 
 
Module 2 Free Response Exercise 
 
1. Accept the uncontrollable: Spend a few moments thinking about an uncontrollable 
aspect of your experience. 
2. Focus on the controllable: Think about controllable aspects of your experience. 
3. Acknowledge strengths: Think about some of the strengths that you have an 
individual and as a family. 
4. Use the positive: Reflect and think about how the previous footsteps can help you 
see the challenge in a new and different light. 
 
 
 
 
 
 
 
 
 
 

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Appendix L: Telehealth Script (Module 3) 
 
Module 3 Telehealth Review 
The Family Survival Road Map 
Helps caregivers to share beliefs about the family’s future and continued growth 
Learning Goals of Module 3:  
Imagining the future can help to put cancer in its place. 
 
1. Consider the role that cancer will have on your family in the future. 
2. Understand the role of present beliefs on your beliefs about the future. 
3. Recognize the potential benefits of using The Footsteps Strategy to reframe thoughts 
and beliefs as you think about the future. 
4. Imagine a future where cancer may be less prominent. 
 
1. Begin each session checking-in with the family 
 
2. Any additional thoughts about the ABC Model or Footsteps to Reframing 
 
3. Review of Module 3 Content 
Ok. I wanted to begin by talking about your reactions to Module 3 and the content.  
[Briefly Review Videos] First, let’s talk about the videos of the family discussion group. Did 
you connect with anything that was said or did anything jump out? 
 
Metaphors: This segment also talked about using metaphors to help explain your experience 
to others. Metaphors like: 
 Cancer - the unwelcome visitor 
 
 
 Roller Coaster 
 Tornado 
Did any of these resonate with you? Do you have others you and your family use? 
 
[Family Survival Roadmap] Let’s talk about the tool that you were introduced to – The 
Family Survival Roadmap. What did you think about the map?  
 
Free Response Exercise Review - – The Family Survival Roadmap:   Your Experience  
Let’s talk about your own responses you shared in the free response segment of Module 3 
[Interventionist has reviewed the free responses prior to the telehealth session. It is 
important that interventionists are incorporating the family’s own work that they have 
done into each telehealth follow-up.] 
• 
Review responses and keep focused on the interpersonal : 
 
Where were you? 
 Tell me about why you picked ____________________________________. 
Where were others then? 
 Tell me about where you think others were then and why do you think they were there. 
Where are you now? 
Tell me about why you picked ____________________________________. 

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Where are others now? 
 Tell me about where you think others are now and why you think they are there. 
 What is it like to be at different places? 
 What do you need to come closer together? 
 What role is cancer playing in your life right now? 
Where are you going? 
Thinking about the future – let’s imagine a day in the future when cancer isn’t 
center stage. An example from the video was when one of the dads talked 
about still worrying about relapse but less focused on it. 
 Tell me about why you picked ____________________________________. 
Where are others going? 
 Tell me about where you think others are going and why you think they may be going there? 
 
 What looks different, how has it changed you as a family? 
 Thinking about the footsteps – what you’ve let go of, what you can control, 
new  
        strengths you have … anything positive you can see as a  result of this future? 
 Moving forward – are there things that you have learned, thought about, or 
practiced that will be helpful to you and your family moving forward? Things 
you will discuss with other family members? 
 
4. Summary 
Do you see the value of using this tool? As the module suggests, just as you have a treatment 
roadmap, The Family Survival Roadmap helps you to navigate the cancer experience.  
 
5. Wrap-Up and Logistics 
 Do you need any additional support or follow-up? 
 You can expect to receive post-intervention measures through REDCap. 
 A $50 gift card will be mailed to you after the measures have been completed 
Thank you! 
 
 
Module 3 Free Response Exercise: The Family Survival Roadmap – Your Experience 
 
Where were you? 
 Tell me about why you picked ____________________________________. 
Where were others then? 
 Tell me about where you think others were then and why do you think they were there. 
Where are you now? 
Tell me about why you picked ____________________________________. 
Where are others now? 
 Tell me about where you think others are now and why you think they are there. 
Where are you going? 
 Tell me about why you picked ____________________________________. 
Where are others going? 
 Tell me about where you think others are going and why you think they may be going there? 
 

Page 54  
  
Appendix M: Telehealth Fidelity Checklist 
 
eSCCIP Module 1 Fidelity Checklist 
General Skills 
Exceeds 
Expectations 
Meeting 
Expectations 
Below 
Expectations 
1. Actively listens while participant is talking 
  
  
  
2. Communicates in a respectful, positive, non-
judgmental manner 
  
  
  
3. Appropriately reinforces ideas and opinions 
  
  
  
4. Adheres to telehealth session time limit 
  
  
  
Module 1 Content 
Present 
Absent 
1. Reviews video of family discussion 
  
  
2. Elicits reactions to family video 
  
  
3. Review ABC model 
  
  
4. Reviews A component 
  
  
5. Reviews B component 
  
  
6. Reviews C component 
  
  
7. Discusses beliefs as neither good nor bad 
  
  
8. Reviews own family example for ABC model 
  
  
9. Elicits questions about ABC model 
  
  
10. Summarizes impact of beliefs about a 
challenge 
  
  
11. Introduce Module 2 
  
  
12. Discusses how beliefs impact other family 
members 
  
  
 
eSCCIP Module 2 Fidelity Checklist 
General Skills 
Exceeds 
Expectations 
Meeting 
Expectations 
Below 
Expectations 
1. Actively listens while participant is talking 
  
  
  
2. Communicates in a respectful, positive, non-
judgmental manner 
  
  
  
3. Appropriately reinforces ideas and opinions 
  
  
  
4. Adheres to telehealth session time limit 
  
  
  
Module 1 Content 
Present 
Absent 
1. Introduces The Footsteps Strategy 
  
  
2. Reviews 1st footstep (uncontrollable) 
  
  
3. Reviews 2nd footstep (controllable) 
  
  
4. Reviews 3rd footstep (strengths) 
  
  
5. Reviews 4th footstep (using positives) 
  
  
6. Apply 1st footstep to own experience 
  
  
7. Apply 2nd footstep to own experience 
  
  

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8. Apply 3rd footstep to own experience 
  
  
9. Apply 4th footstep to own experience 
  
  
10. Summarizes The Footsteps Strategy 
  
  
11. Introduce Module 3 
  
  
12. Elicit questions about ABC Tool/Footsteps 
Strategy 
  
  
 
eSCCIP Module 3 Fidelity Checklist 
General Skills 
Exceeds 
Expectations 
Meeting 
Expectations 
Below 
Expectations 
1. Actively listens while participant is talking 
  
  
  
2. Communicates in a respectful, positive, non-
judgmental manner 
  
  
  
3. Appropriately reinforces ideas and opinions 
  
  
  
4. Adheres to telehealth session time limit 
  
  
  
Module 1 Content 
Present 
Absent 
1. Reviews video of family discussion 
  
  
2. Elicits reactions to family video 
  
  
3. Review metaphors in video  
  
  
4. Elicits reactions to metaphors 
  
  
5. Introduce Family Survival Roadmap 
  
  
6. Apply Family Survival Roadmap to own 
experience 
  
  
7. Emphasizes relationships on Roadmap 
  
  
8. Summarizes Family Survival Roadmap 
  
  
9. Assesses need for additional support 
  
  
10. Remind to complete post-intervention 
measures 
  
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Appendix N: Interpreter Questionnaire  
 
Please tell us about your experience working on the eSCCIP translation project. In answering 
these questions, please think about the time you spent with the research team working on 
translating and adapting eSCCIP (our online program for caregivers of children with cancer) 
into the Spanish eSCCIP version (eSCCIP-SP).   
 
1. Please describe your overall experience translating and adapting content from 
eSCCIP into eSCCIP-SP for Spanish-speaking families.   
 
2. Please describe any concerns that you have about the adaptation or 
interpretation process. Is there anything you would change about the process? 
 
3. Please describe your overall thoughts about eSCCIP-SP.  Is there anything you 
would remove or add to eSCCIP-SP? 
 
4. Please share your thoughts about delivering eSCCIP-SP to Spanish-speaking 
families. 
 
5. Please share your thoughts about working with the research team. 
 
6. Please share any general thoughts about support services and resources 
available to Spanish-speaking parents at Nemours.  
 
7. On a scale of 1 to 5, please rate your overall experience working on the eSCCIP 
translation project. 
1 
 
2 
 
3 
 
4 
 
5 
Very Poor        Poor           Neutral                  Good                   Very Good 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Appendix O: Caregiver Demographic Form 
 
eSCCIP Demographic Form 
Your Gender (✓ one):    ☐ Male 
☐ Female 
☐ Other 
Your Age Rage (✓ one) 
 
☐ 20-29 
☐ 30-39 
☐ 40-49 
☐ 50-59 
☐60-69 
☐70+ 
Race (✓ all that apply) 
☐ White 
☐ Black or African American 
☐ Asian  
 
☐ American Indian or Native Alaskan 
☐ Native Hawaiian or Other Pacific Islander 
☐ Other ____________________________  
 
Ethnicity (✓ one)   ☐ Hispanic or Latino 
☐ Non-Hispanic or Latino 
Marital Status 
☐ Single 
☐ Married/Partnered ☐ Divorced  ☐ Widowed ☐ Other ___________ 
Education (✓ one) 
☐ Started school but didn’t finish 
 
☐ Finished High school/got GED 
☐ Started college or trade school 
 
☐ Finished college or trade school 
☐ Started master’s or doctoral program 
☐ Finished master’s or doctoral program 
Annual Household Income (✓ one) 
☐ Less than 24,599 
☐ 25,000 to 49,999 
☐ 50,000 to 74,999 
☐ 75,000 to 99,999  ☐ 100,000 to 124,999  
☐ 125,000 to 149,000  
 
☐ 150,000 or more 
Child’s Diagnosis: ___________________________       Diagnosis Date: __________________ 
Age_____ 
 ☐ Male 
☐ Female 
☐ Other 
 
Do you have other children?  ☐ Yes ☐ No 
Age_____ 
 ☐ Male 
☐ Female 
☐ Other 
Age_____ 
 ☐ Male 
☐ Female 
☐ Other 
Age_____ 
 ☐ Male 
☐ Female 
☐ Other