eSCCIP: A Psychosocial eHealth Intervention for Parents of Children with Cancer

Abstract

Objective.

eHealth interventions may facilitate the dissemination of evidence-based psychosocial interventions to families of children with chronic illnesses, including cancer. This article describes a four-phase, mixed-methods, user-centered approach to the design and evaluation of a novel psychosocial intervention for parents of children with cancer (Electronic Surviving Cancer Competently Intervention Program [eSCCIP]), adapted from an in-person intervention (Surviving Cancer Competently Intervention Program).

Methods.

Development of eSCCIP involved a multidisciplinary design team of content and eHealth experts. Iterative Think Aloud testing and beta testing with parents of children with cancer was also completed.

Results.

An intensive, user-centered development and evaluation process was utilized to develop an eHealth intervention for parents of children with cancer. Initial testers rated eSCCIP favorably on questionnaires evaluating user experience and perceptions, and provided positive feedback and suggestions for additional improvement through qualitative interviews.

Conclusions.

Initial results suggest that eSCCIP may be an acceptable, feasible, and usable intervention for parents of children with cancer. eSCCIP is now ready for a larger pilot evaluation of usability, feasibility, and impact on target outcomes, including the reduction of anxiety and PTSS and improvements in family functioning.

Psychosocial support for parents of children with cancer is essential. While many parents and families are resilient following a cancer diagnosis, research has consistently identified a subgroup of parents who are at risk for poor psychosocial outcomes and negative psychological sequalae (Kazak et al., 2015; Muscara et al., 2018) including symptoms of posttraumatic stress, anxiety, depression, and decreased family functioning (Kearney, Salley, & Muriel, 2015; Madan-Swain & Hinds, 2015; Pai et al., 2007). The importance of supporting the entire family system is underscored by the Standards for Psychosocial Care for Children with Cancer and their Families (Wiener, Kazak, Noll, Patenaude, & Kupst, 2015). This set of fifteen standards includes a standard of care focused specifically on support for parents of children with cancer, developed following a rigorous systematic review of the literature (Kearney et al., 2015). Moreover, decades of research highlight the interconnectedness of family members and thus the impact of parent functioning on the entire family unit after a child’s cancer diagnosis (Van Schoors et al., 2017).

Despite the clear need for evidence-based psychosocial support for parents, many challenges exist in delivering in-person interventions in this population. The time following a child’s cancer diagnosis is very stressful and treatment often becomes all-encompassing, which can lead to recruitment and scheduling difficulties for parent-focused psychosocial intervention trials (Lutz Stehl et al., 2009). To this end, eHealth interventions, which use technology to enhance or replace more traditional in-person models of psychosocial or medical care (Cushing & Steele, 2010; Palermo, 2008), present a unique opportunity to deliver or improve psychosocial interventions for parents of children with cancer. eHealth interventions can range from using telehealth to deliver an in-person intervention to relying on a fully automated program, and often involve some combination of self-directed content and therapist/coach support (Doss, Feinberg, Rothman, Roddy, & Comer, 2017). Recent work by Doss and colleagues (2017) highlights the many potential benefits of integrating technology into couples and family therapy interventions, including overcoming logistical barriers to in-person participation and involving multiple family members whose schedules might not otherwise align for in-person participation.

In order to provide critical psychosocial support to parents of children with cancer in a readily accessible and flexible format, our research team developed an eHealth intervention based on the Surviving Cancer Competently Intervention Program (SCCIP; Kazak et al., 1999) and the Surviving Cancer Competently Intervention Program – Newly Diagnosed (SCCIP-ND; Kazak et al., 2005). The SCCIP intervention model integrates cognitive-behavioral and family systems interventions to decrease negative psychosocial sequela such as posttraumatic stress and improve family functioning. A novel component of SCCIP-ND is the Multiple Video Family Discussion Group (MVFDG), which consists of edited video clips of a structured discussion between families of children with cancer that are integrated into the intervention. Like many other family-centered interventions in pediatric psychology, randomized controlled trials of SCCIP and SCCIP-ND had low recruitment rates and struggled with intervention retention, despite high satisfaction among intervention completers (Kazak et al., 2004; Lutz Stehl et al., 2009) and continued use of the approach by approximately 150 clinicians.

The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) was developed in part to address barriers to in-person interventions in this population. The decision to create eSCCIP was further bolstered by research indicating that parents of children with cancer are amenable to the delivery of psychosocial interventions via technology, including interactive websites (Hocking et al., 2014). It is further justified given widespread internet accessibility, with recent estimates suggesting that nine out of ten adults in the United States use the internet (Pew Research Center, 2018). eSCCIP is intentionally designed to be utilized anywhere that internet access or mobile data is available, which is essential for this population who spend many long days at the hospital (e.g., for outpatient infusions and scans, for planned or unexpected admissions) and are often also juggling other responsibilities such as work and childcare.

eSCCIP is a hybrid eHealth intervention or “guided behavioral intervention technology” (Doss et al., 2017), meaning that it utilizes a combination of self-directed intervention content and personalized support from a therapist via brief telehealth sessions. Its development was grounded in principles of eHealth intervention design (Marsac et al., 2015; Ritterband et al., 2009), considering the complex interactions between user and website characteristics and the ways that these characteristics impact the user experience, lead to behavior change, and ultimately contribute to symptom improvement. We utilized a multimodal, user-centered development and evaluation process which combined qualitative and quantitative evaluation (Stoop & Berg, 2003; Regina Boland et al., 2014). eSCCIP contains four self-directed sessions, called modules, including an introductory module. The telehealth component in eSCCIP was included due to the important emphasis in family therapy on connection and relationships, as well as concern about delivering highly emotional content without any “live” support. Detailed information about each content-containing module and the three telehealth sessions that follow each module is available in Supplemental Table 1. Figures 1–3 are visual examples of module content. This manuscript describes the development and user-centered initial evaluation of eSCCIP. In addition, initial quantitative and qualitative data on eSCCIP acceptability, usability, and feasibility are presented.

Figure 1.

Screenshot of eSCCIP Landing Page for New Module

Figure 3.

Screenshot of eSCCIP Examples Page

Methods

The development of eSCCIP was a four-phase participatory process that involved close collaboration with a group of parent stakeholders, as well as review by professionals familiar with general psychosocial intervention research and the SCCIP model. The four phases were: (1) creating the multifamily video discussion group (MFVDG) and other video content, (2) developing the initial prototype, (3) Think Aloud testing, and (4) beta testing. All study procedures were approved by our hospital’s institutional review board prior to study initiation. The intervention development process occurred iteratively between August 2016 – March 2018.

Phase 1. Creating the MFVDG and Other Video Material

Unique eSCCIP video content was created over seven months, consisting of a new MFVDG and related didactic skills videos that introduced core intervention components (e.g., relationship between adversities, beliefs, and consequences; thought reframing). The principal investigator (PI; KC) worked with psychosocial staff and physicians in the Nemours Center for Cancer and Blood Disorders (NCCBD) to identify a diverse group of caregivers who would potentially be interested in participating in the MFVDG. The three-hour professionally filmed session was facilitated by AK and KC and then edited into clips to integrate into the online eSCCIP modules. The filming of additional video content, consisting of interviews with staff and parent caregivers and “B-roll” background/filler footage, occurred on separate dates. This additional content was used to develop the five didactic videos integrated into eSCCIP to explain core cognitive-behavioral skills and other intervention components.

Phase 2. Developing the Initial Prototype and Testable eSCCIP

eSCCIP instructional development followed an established process used in the development of other internet interventions (Hilgart, Ritterband, Thorndike, & Kinzie, 2012; Ritterband et al., 2009) and was guided by a strong family systems and cognitive-behavioral theoretical orientation. The family systems cognitive-behavioral orientation informs much of the skills component of the intervention (e.g., focus on thought reframing in Module 2). The family focus in eSCCIP encourages participants to consider how the cancer experience and intervention tools impact the entire family system and encourages inclusion of multiple family members when possible.

The process of content development was informed by a comprehensive set of theory-driven instructional strategies recommended for health education (Kinzie, Cohn, Julian, & Knaus, 2002) as well as extensive clinical and research experience with parents of children with cancer. Content development began with the creation of a series of rough prototypes by the PI that were tested with stakeholders and refined over a 12-month period. The content team (KC, AK, MH) used the eSCCIP prototypes and the in-person SCCIP-ND manual to identify and confirm objectives for each eSCCIP module. Best-practice educational experiences, such as the opportunity for practice with specific feedback, modelling with real-life examples, and self-assessment of skills, were included in each module. The resultant high-fidelity version of eSCCIP was further refined over a six-month period, and occurred at the same time as Phase 3 (Think Aloud Testing). This allowed the content team to iteratively integrate “real time” feedback and data from Think Aloud participants into the intervention as it was being developed. For example, an issue identified by a participant would be adjusted before the next Think Aloud session, so that the next participant would see a slightly different version of the intervention that incorporated the previous user’s feedback. Ongoing informal (e.g., during research team meetings) and formal (e.g., structured interviews) review with professionals was also ongoing with feedback incorporated throughout this six-month development period.

Phase 3. Think Aloud Testing

Think Aloud testing is an established tool in usability research (Nielson, 2012), supported by a robust evidence-base and used across disciplines to obtain in-vivo feedback from key stakeholders and end-users about a new measure or approach. Participants in Think Aloud testing are encouraged to say everything that they are thinking or doing as they navigate independently through a task, such as reviewing a website, in order to provide insight about their thought processes and decisions (Knafl et al., 2007).

Participants in Think Aloud testing for eSCCIP tested the four self-guided modules over two in-person sessions and also completed two brief surveys about usability and acceptability after the final session. Testing sessions were intentionally flexible and conducted by the PI and/or RC at various locations throughout Nemours], including a private room in the medical imaging suite, a conference room in the PI’s research center, and the inpatient family resource center. One session with an expert interventionist was conducted at her place of employment. All sessions were conducted on a Mac laptop using the Safari browser, audio recorded, and transcribed for review by the study team. Each participant received a unique log-in. We modified a cognitive interview analysis protocol described by Knafl and colleagues (2007) to summarize participant feedback and make decisions during weekly content team calls about what to change from each module based on participants’ understanding and interpretation of eSCCIP’s design and content. Think Aloud testing was iterative, with “real time” changes and adaptations made between participants in response to previous user feedback. Testing was concluded when saturation of responses was achieved (i.e., no novel suggestions for improvement were being identified by participants).

Phase 4. Beta Test of the full eSCCIP Intervention

A beta test of the complete version of eSCCIP, including telehealth follow-up, was conducted over a four-month period, providing a preliminary evaluation of eSCCIP in the “real world” and identifying any barriers to intervention adherence. The version of eSCCIP used in the beta test incorporated all changes that were made during Phase 3. Potential participants were identified in collaboration with clinical staff in the NCCBD and approached by a member of the study team during a medical appointment. If interested in participating, participants were oriented to all components of eSCCIP (i.e., self-directed modules, telehealth platform) and worked with the research coordinator (RC) to develop a tentative schedule for intervention completion, including the four eSCCIP modules and the initial telehealth visit. Participants in the beta test completed the four self-directed modules independently and scheduled three follow-up telehealth visits with the study interventionist (KC). Participants completed eSCCIP (modules and telehealth sessions) on a range of personal devices (including laptops and mobile phones) in a number of different locations, including at work, at home, and in the hospital between appointments. Telehealth sessions were intentionally flexible and ranged from approximately 15 – 40 minutes, depending on participant needs. After completing the intervention, an in-person follow-up visit was scheduled with the RC. During this visit, a semi-structured interview was conducted about intervention feasibility, usability, and acceptability. The participants also completed two brief surveys during this visit.

Measures

Demographic data.

Background information was extracted from the electronic medical record, including demographic information about the parent participant and child with cancer.

eSCCIP Evaluation Survey.

This self-report questionnaire was developed by the study team with guidance from an expert in eHealth (LR), based on published tools used for eHealth interventions (Ritterband et al., 2008; Thorndike et al., 2008; Ritterband et al., 2013). There were 17 items administered during Think Aloud testing and 21 items administered during beta testing, with four questions added about the telehealth sessions. All questions were designed to evaluate acceptability and feasibility, and items were rated on a five-point Likert scale ranging from 0 (not at all true) to 4 (very much true). Item #8 is reverse scored. Responses were examined at the item level and a median item score was calculated. Scores of 3 (mostly true) and 4 (very true) were used as benchmarks for acceptability and feasibility. Five free response items were also included. The survey was completed at the final study visit (final Think Aloud session for Phase 3, after semi-structured interview for Phase 4).

Internet Intervention Adherence Questionnaire (IIAQ).

The IIAQ was modified from a validated tool (Ritterband et al., 2005; Ritterband et al., 2008). It is a usability survey consisting of 16 questions about computer and site functionality, rated on a three-point Likert scale ranging from 0 (not a problem) – 2 (a major problem). Items were examined at the item level, and a median item score was calculated, with scores of 0 (not a problem) and 1 (a little problem) used as usability benchmarks. The survey was completed at the final study visit (final Think Aloud session for Phase 3, after semi-structured interview for Phase 4).

Website Usage Data.

The website captured detailed user interactions, such as each time a button was clicked, and all data were hosted in the Nemours Enterprise secure data cluster. Data were routinely checked and backed up to ensure that interactions were being captured appropriately. In addition to capturing responses provided by participants (i.e., free-text responses to questions and interactions with activities), objective usage data was also stored and evaluated, including time spent in each module and time spent on specific activities (e.g., videos). These data were used to provide additional data about usability.

Results

Participants

Phase 1. MFVDG.

Seventeen parents from ten families participated in the MFVDG (41% male, 29% non-Caucasian). Five parents from the MFVDG also participated in “B roll” filming with their children.

Phase 2.

ideos developed based on the Phase 1 recorded content were integrated into the prototype and final product. There were no new participants in this phase.

Phase 3. Think Aloud Testing.

Five parents/caregivers from four families unfamiliar with the project were recruited from October 2017 - December 2017 from the NCCBD. All five completed Think Aloud testing (40% male, 80% non-Caucasian). Two expert interventionists (both female and Caucasian) also provided feedback on the intervention at this phase.

Phase 4. Beta Testing.

Four parents from three families participated in beta testing (25% male, 25% non-Caucasian) between November 2017 – February 2018. Ten parents were approached for participation, with three declining due to scheduling conflicts. Three additional participants consented but withdrew prior to completing any of the core content. All participants were recruited by the RC from the NCCBD. Demographics for participants in Think Aloud and beta testing and their children are reported in Table 1.

Table 1.

Participant Demographics

		Parents/Caregivers (n = 9)			Child with Cancer (n=7)
Age in years		N	%		N	%
		−	−	1– 4	2	28.6
		−	−	5 – 9	2	28.6
		−	−	10 −14	3	42.8
Age range		23 – 83*			2 – 14
Gender
	Male	3	33.3		3	42.9
	Female	6	66.7		4	57.1
Race
Caucasian			44.5			57.1
African-American			33.1			28.6
Indian			11.1			14.3
Other			11.1			14.3
Ethnicity
Hispanic or Latino			11.1			14.3
Non-Hispanic or Latino			88.9			85.7
Marital status
Married+			77.8			−
Partnered/Cohabitating			22.2			−
Cancer diagnosis
Leukemia (ALL)			−			85.7
Solid tumors			−			14.3

Note.

^*this age range includes a grandparent. Parent age range = 23–50.

⁺We intentionally recruited one married couple to complete the beta test. They chose to complete the modules and telehealth sessions separately.

Usability and Feasibility Data (Phases 3 and 4)

Participants found eSCCIP to be usable, feasible, and acceptable in Phase 3. See Figures 4 and 5 for item-level acceptability and feasibility data. “Mostly true” or “very true” was endorsed by all participants for 14 out of 17 questions in the Think Aloud test and 18 out of 21 questions in the beta test on the eSCCIP Evaluation Survey. “Not a problem” or “A little problem” was endorsed by all participants for 15 out of 16 questions in the Think Aloud phase and 16 out of 16 questions in the beta test on the IIAQ. Missing data on the IIAQ in Think Aloud testing correspond to items that did not apply (e.g., questions about internet connection because website was loaded for them on a computer at the hospital).

Figure 4.

eSCCIP Evaluation Questionnaire (n = 9)

Figure 5.

Internet Intervention Adherence Questionnaire (n = 9)

Website usage data was calculated for the four participants who completed the beta test. Average time spent on the modules was 08:39 (minutes: seconds) for the Introductory Module, 39:02 for Module 1, 34:46 for Module 2, and 33:37 for Module 3.¹ Viewing time for each video was equal to or longer than the video duration, suggesting that all participants watched MFVDG clips and the skills videos in Modules 2 and 3 in their entirety, which was confirmed during telehealth follow-up sessions. One participant exited two of the three skills videos in Module 1 before they were finished. Average duration of time spent on each interactive activity ranged from 41 to 81 seconds. Participants also engaged with fictional vignettes featuring families using the core skill at the end of each module, with each participant viewing at least two examples (out of five) in each module.

Three participants completed all three telehealth sessions. One participant did not complete the final telehealth session and rescheduled several earlier sessions. This participant did complete the post-intervention interview and reviewed the telehealth sessions favorably on surveys and during the interview.

Qualitative Data

Qualitative data was collected during Think Aloud testing (n = 5) and after beta testing (n = 4). Participant comments during Think Aloud and beta testing were categorized into two broad themes after full transcript review by the PI in consultation with an expert in qualitative analysis (JD). Each theme included several categories (see Table 2).

Table 2.

Example Quotes to Illustrate Themes

Parents’ understanding and interpretation of the website
Intervention enabled the recognition of family system impacts	“I thought it was very helpful to give us a common language to help sort of reflect together and to discuss things together – like it made me feel more connected to [my husband] emotionally and about this process, in a way, about this process because we are better…not that we haven’t talked about it and haven’t felt connected before about it, but we were able to, kind of, reflect together in a way because we had this common language that was given to us to talk about it.” (Caucasian mother, Think Aloud)
Intervention allowed for connection with other families	“…if it is just one spouse, like if it’s the wife doing it, getting to see some fathers talk [in the MFVDG] and vice versa. So the fathers getting to see the mothers talk can help them understand what their spouse is going though; if they’re not able to talk about it to each other.” (Caucasian father, Beta Test)
Design and use of the website
Reflections on the design and personal preferences	“Okay. One of these graphics probably should have somebody looking like one of our kids [without hair]…yeah. Some people are really sensitive to that.” (Caucasian father, Think Aloud)
Issues of practicality/usability	“…so I like that check mark. So true. That’s very good. So that’s nice. Now, I know that I didn’t skip. Otherwise I wouldn’t know…” (Southeast Asian mother, Think Aloud)
General Satisfaction with the intervention	“I’m so thankful that you guys came across me because, like I said, beginning I felt like I ain’t have nobody and I didn’t have this option. So in order to do it, I mean, since I got the chance to do it, I’m so thankful and I love it and always tell people about it. It was very, very helpful to me.” (African American mother, Beta Test)
Feedback regarding telehealth	“I liked that part but I didn’t like that you had to go into the email to get it, to get the link and then…maybe if it can ring from the app.” (African American mother, Beta Test) “it was weird to do heavy content through a screen.” (Caucasian mother, Beta Test)

Understanding and interpretation of the website.

Parents generally commented that the content of the intervention was understandable and digestible. They connected with the participants in the MFVDG and found it helpful to hear other parents express similar sentiments, even if the content was emotional to watch at times. Two participants in the beta test who were married to each other said that they preferred to complete the intervention individually but valued discussing each module after they had both completed it. They also shared that the MFVDG could be particularly valuable for parents completing the intervention independently because it might give some perspective about how other caregivers in their own family are feeling and processing their experience (e.g., a spouse who is disinterested in participating). One participant did not find the fictional vignettes at the end of each module to be helpful for her, but expressed that it might be helpful for other parents.

Design and use of eSCCIP.

Participant suggestions for improvement focused on intervention usability and practicality, as well as design and personal preferences (e.g., introduce “pause and return” feature so that participants are not required to restart module if unable to complete in one sitting; allow participants to print components of the website for reference). Comments about site functionality, such as design improvements to facilitate a smoother and more intuitive user experience, declined over the course of Think Aloud testing and were minimal during beta testing, possibly because improvements based on prior feedback were made iteratively between participant sessions. For example, an animated hand that showed participants where to click on certain pages was added in response to early confusion about which site components were interactive decreased confusion for future participants.

Free response answers from the eSCCIP Evaluation Survey were consistent with verbal comments made by participants during the Think Aloud and beta testing. For example, participants wrote that they valued hearing the experiences of other parents, the “skills” videos, and the skills introduced in the different modules. Several parents commented that they would not change anything about the program, while others helped identify design improvements (e.g., utilize “checkmark” more consistently to remind participants that they have already completed something; reduce number of words on certain pages).

Beta test participants were also asked specifically about the telehealth follow-up sessions. Participants found the telehealth follow-up sessions useful overall, and considered them to be a valuable component of the intervention. Feedback was mixed about the timing and delivery of telehealth sessions, with some participants endorsing major difficulties in terms of finding time to schedule the sessions and other participants expressing that the telehealth sessions should occur immediately after module completion in order to better process reactions to the content.

Discussion

This paper illustrates the development and evaluation of an eHealth adaptation of an in-person intervention for parents/caregivers of children with cancer. This formative work involved close partnership with a multidisciplinary team, including pediatric psychologists, instructional designers, web developers, user experience/eHealth experts, professional videographers, healthcare professionals, and parents. The results indicate that eSCCIP is an acceptable, usable, and feasible intervention for parents of children with cancer. Parents expressed an understanding of the cognitive-behavioral skills introduced and endorsed a strong connection to the families in the MFVDG. Their ability to recognize the family systems implications of cancer in their own family unit was apparent in the qualitative interviews after the beta test. Participants rated the intervention highly on the eSCCIP Evaluation Survey and IIAQ and provided important feedback about functionality and content. Think Aloud testing yielded several rounds of concrete changes that enhanced the utility and usability of eSCCIP. Participants in beta testing identified few challenges with site navigation or function, suggesting that the time intensive Think Aloud process was valuable in identifying and remedying potential pitfalls.

Most participants engaged fully with eSCCIP, as evidenced by site usability statistics. Participants generally played all videos in their entirety and remained on the interactive pages long enough to suggest full engagement with these activities. The majority of participants also engaged with all optional components of the modules, including interacting with multiple fictional families despite instructions that only one vignette was “required.” Although a priori hypotheses about engagement with various activities were not developed given the nature of the study, this level of engagement met or exceeded our initial expectations about engagement with various components of the self-guided content. This user data, in addition to participant feedback from post-intervention surveys and interviews, suggests that eHealth interventions are feasible vehicles for providing parents with critical psychosocial support consistent with the Standards for Psychosocial Care for Children with Cancer and their Families (Kearney et al., 2015; Wiener et al., 2015). Interventions such as eSCCIP and other online psychosocial interventions may be viable ways to provide support that can be difficult to deliver in person (Lutz Stehl et al., 2009).

Qualitative feedback from participants was consistent with the website usage data, suggesting that participants appreciated all the components of the intervention and found the balance of activities appropriate. Participants were easily able to apply the intervention skills to their daily lives in both written examples and during telehealth follow-up sessions. Parents reported discussing eSCCIP with their partners and benefiting from a “shared language” to discuss the dyadic impact of cancer on their lives. Participants commented on the family-centered benefits of the intervention in the Think Aloud phase as well. The fifth participant in Think Aloud testing was recruited after an original participant requested that her father-in-law (a secondary caregiver) be approached because she found the content so helpful for their family. This suggests that the family systems components of eSCCIP are well-received through a primarily self-guided online format, consistent with the literature on family applications of eHealth interventions (Doss et al., 2017).

While parents in our beta test rated the telehealth component favorably, some of the challenges that eHealth may overcome (e.g., scheduling), remain concerns when utilizing telehealth. The inclusion of the telehealth component of eSCCIP is consistent with most previously published family-focused eHealth interventions, which often include some combination of self-guided and therapist-delivered content (Canter, Christofferson, Scialla, & Kazak, 2018). However, future work should investigate whether a “live interventionist” is needed in eSCCIP and other eHealth interventions.

Six participants declined to participate in the beta test and/or consented but did not access the eSCCIP website. Strategies to improve recruitment and retention were not incorporated into this study given the focus on developing eSCCIP. It will be important to consider recruitment and engagement strategies in future research. The three parents who declined to participate in the beta test were all fathers, illustrating a well-recognized difficulty with recruiting fathers in pediatric psychology (Phares, Lopez, Fields, Kamboukos, & Duhig, 2005). Although we were successful in our efforts to represent fathers in the intervention (e.g., in MFVDG), which was noted as a strength by eSCCIP completers, this does not address concerns about recruiting fathers to participate. Teasing apart the active ingredients that make eHealth interventions effective, including at the recruitment stage, will be an important research priority that will help inform best practices for future research and clinical care (Canter et al., 2018). The next step in evaluating eSCCIP is a trial to collect pilot outcome data related to the original SCCIP target outcomes, including traumatic stress responses and family functioning. As a component of this work, we will conduct focus groups specifically focused on retention and engagement strategies for underrepresented groups.

A limitation of the study was that the sample was small and may not be broadly generalizable. We worked closely with clinical staff to identify a diverse group of participants across age, gender, sexual orientation, race, ethnicity, and socioeconomic status; however, several groups, including patients with a wide range of diagnoses, and fathers, were underrepresented. We opted to conduct this study using Think Aloud methodology and a small “real world” beta test because a combination of these two approaches allowed us to gain lab-based data about the user experience (e.g., observe navigation errors) as well as “real world” user data that closely mirrored the way that the intervention will actually be used. However, alternate data-centered approaches for usability testing do exist (e.g., calculating time spent navigating through different tasks) and may have also been appropriate for this study. Parent participants also received fairly intensive support from the study team (e.g., frequent reminders about telehealth sessions), which may not be a sustainable model for a larger trial and for eventual clinical dissemination. Future research should work to further streamline intervention procedures, including potential automation of tasks such as log-in reminders.

In conclusion, eSCCIP has the potential to be a feasible and acceptable intervention for parents of children with cancer. eHealth interventions represent an exciting opportunity to more easily and widely disseminate evidence-based care in pediatric psychology. Partnering with design and development experts, as well as parents and content experts, was a successful approach that fosters a successful launch of eSCCIP. Immediate next steps for eSCCIP include an evaluation of intervention effectiveness to establish an evidence-base. If effective in terms of improving psychosocial outcomes for parents, many of the elements in eSCCIP can likely be adapted for other chronic illness groups, further expanding its reach and utility.

Figure 2.

Screenshot of eSCCIP Interactive Activity

Implications for Impact Statement:

eHealth interventions have great promise in delivering needed psychosocial support to parents and caregivers of children with cancer. This manuscript describes the development of eSCCIP, an eHeath adaptation of an in-person intervention. Think Aloud methods and beta testing of eSCCIP indicate that this eHealth intervention may be an acceptable option for delivery of psychosocial care to parents of children with cancer.