Strategies for Successful Recruitment and Retention of Parents in Pediatric Psychosocial eHealth Interventions: A Qualitative Study in Pediatric Oncology

Abstract

Objective

Psychosocial intervention studies with parents often have difficulty with regard to participant recruitment, retention, and engagement. Prior to conducting a pilot test of the Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents of children with cancer, a qualitative study was designed to preemptively generate strategies to address potential difficulties in these domains.

Methods

Two focus groups and three semi-structured interviews were conducted with parents of children with cancer. Qualitative data were analyzed using the principles of thematic and content analysis. Themes were generated to describe results and inform the development of concrete recruitment, retention, and engagement strategies to be utilized in future intervention trials.

Results

Five themes emerged specific to recruitment, and three themes emerged related to retention and engagement. Parents highlighted a number of important potential recruitment, retention, and engagement strategies, including the importance of flexibility, ease of access and use, intervention timing, and pathways to follow-up care. Themes were linked to actionable recruitment, retention, and engagement strategies which can be utilized in future studies.

Conclusion

Results from the current study will be utilized when designing future eSCCIP intervention trials and will also be of use to the broader field of psychosocial eHealth intervention research in pediatric psychology. This study also underscores the importance of working with parent stakeholders at all phases of study design and implementation.

Introduction

The impact of pediatric cancer on parents and caregivers is well-documented (Kearney, Salley, & Muriel, 2015; Madan-Swain & Hinds, 2015; Pai et al., 2007). While many children and families are resilient following a pediatric cancer diagnosis, the period after diagnosis is marked by increased distress for many families (Pai et al., 2007). Moreover, it can be difficult for parents and caregivers of children with cancer (henceforth referred to as “parents”) to prioritize their own mental health and social-emotional needs given the demands on their time and families following a cancer diagnosis (Hocking et al., 2014). Prioritizing these needs is important, as evidence suggests that parenting behaviors and mental health improve for parents of children with cancer after receiving psychological treatment (Law, Fisher, Eccleston, & Palermo, 2019). To this end, eHealth interventions have emerged as a possible path toward delivering evidence-based, flexible psychosocial interventions that meet the important needs of parents as detailed in the Standards for Psychosocial Care for Children with Cancer and Their Families (Kearney et al., 2015; Wiener, Kazak, Noll, Patenaude, & Kupst, 2015). There are several existent eHealth and mHealth interventions for children and adolescents with cancer (e.g., Fortier, Chung, Martinez, Gago-Masague, & Sender, 2016; Jibb et al., 2017) and their parents (e.g., Sahler et al., 2005), although the field remains limited with regard to evidence-based interventions for parents.

The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is a brief three-session eHealth intervention for parents of children with cancer (Canter et al., 2019). eSCCIP is informed by family systems and cognitive behavioral theory and consists of three online self-directed “core” content modules with brief telehealth follow-up sessions, designed to be delivered over the course of 1 month at any point during “active” treatment (including maintenance therapy) or shortly after treatment completion. Each module features a mix of video and interactive content (e.g., in Module 2, parents learn a thought reframing tool, watch videos of other parents that illustrate the use of the tool and have an opportunity to provide their own examples) and takes approximately 25 min to complete. In order to participate, parents need access to a basic internet or data connection on any electronic device (e.g., smartphone, tablet, computer). Participation by multiple adults in the family unit is encouraged but not required. Initial results from Think Aloud testing and a small “beta test” of eSCCIP suggest that the intervention is a feasible and acceptable tool for parents (Canter et al., 2019). Pilot testing is currently underway with a primary aim of evaluating intervention feasibility and acceptability and a secondary focus on psychosocial outcomes of interest (acute distress, state anxiety, family functioning, and posttraumatic stress). As a component of the aforementioned pilot study, a qualitative phase was designed to understand motivators and barriers to recruitment, retention, and engagement in eSCCIP. In addition to developing a better understanding of motivators and barriers, qualitative data will be used to generate strategies to increase intervention recruitment, engagement, and retention in future studies.

With regard to recruitment, engagement, and retention, numerous challenges exist for intervention programs within pediatric oncology and, more generally, within pediatric psychology. While some research suggests that overall participation in psychosocial, behavioral, and quality-of-life research may be higher than expected (Herbert, Gillespie, Monaghan, Holmes, & Streisand, 2016; Wakefield et al., 2017), this is not supported by all of the literature. Parents identify a tension between focusing on their child and addressing their own needs throughout cancer treatment, reporting that it is often unfeasible to focus on anything beyond their child’s immediate treatment-related needs (Hocking et al., 2014). On the other hand, parents also express a clear desire to receive parent-focused support after diagnosis and through the treatment trajectory (Hocking et al., 2014). A recent review of participation rates in psychosocial and quality-of-life oncology interventions found that in-person, face-to-face recruitment was predictive of higher rates of participation in pediatric studies. This same review also found that pediatric study participation was higher when parents were approached during treatment or at the time of diagnosis as opposed to after treatment (Wakefield et al., 2017). This suggests that there are modifiable factors that may be within the researcher’s control that could yield better participation rates in psychosocial studies.

Challenges related to recruiting parents and families for pediatric intervention studies are not limited to psychosocial oncology. Particular challenges have been noted with regard to recruitment in particular demographic groups, including rural communities and first-generation immigrant communities (Lim, Follansbee-Junger, Crawford, & Janicke, 2011; Rodríguez, Rodríguez, & Davis, 2006). Researchers have described a number of factors that may contribute to these difficulties, including mistrust of researchers, negative perceptions of researchers, and lack of access to essential resources and technology (Lim et al., 2011). Partnering with the community or medical team, developing tailored and specific recruitment materials and strategies, offering maximum flexibility (e.g., minimizing travel requirements, offering study visits at convenient times for the participant), and leveraging community networks (e.g., relying on “word of mouth” referrals and endorsements) are examples of beneficial recruitment and retention strategies utilized in previous research (Herbert et al., 2016; Lim et al., 2011; Rodríguez et al., 2006). Research also suggests that a combination of “active” strategies, such as contacting participants directly by phone, and “passive” strategies, such as making contact with trusted referral sources (e.g., teachers), may be important for obtaining adequate samples for family-focused studies (Bergmann et al., 2017). It is likely that interventions aiming to recruit multiple members of a family unit, such as eSCCIP, will share some of these common challenges related to recruitment, engagement, and retention, while also experiencing unique challenges.

A deeper and more nuanced understanding of factors related to recruitment, retention, and engagement is necessary in order to help increase access to necessary psychosocial interventions for parents of children with cancer and other chronic medical conditions. This manuscript describes a “preemptive strike”—by anticipating challenges with recruitment and retention that are documented in other eHealth studies, we sought to be proactive in terms of addressing potential challenges and building solutions into our recruitment and retention plan for future research studies. This was an exploratory study with no a priori hypotheses; however, we expected to identify strategies that could readily be implemented to improve recruitment, retention, and engagement in eHealth studies. We expected that parents would describe barriers to participation in psychosocial intervention studies across various domains (e.g., emotional, logistical), as well as offer suggestions to make intervention participation easier and/or more appealing.

Methods

All study procedures were approved by the Nemours Children’s Health System Institutional Review Board. Data collection occurred in spring and early summer of 2019.

Participants

Participants were mothers and fathers of children with cancer who were treated at the Nemours/Alfred I. duPont Hospital for Children. Participants were identified in consultation with members of the multidisciplinary care team in the Nemours Center for Cancer and Blood Disorders (NCCBD). In order to capture a range of perspectives, a mix of parents who had not been previously exposed to eSCCIP and parents who had previously participated in an eSCCIP study (e.g., Think Aloud Testing; Canter et al., 2019) were purposively recruited. Efforts were made to recruit an ethnically and racially diverse sample, reflective of our patient population. Inclusion criteria were intentionally broad, and potential participants were eligible for inclusion if they were the primary caregiver of a child between the ages of 0–17 being treated (or up to 1-year off-treatment) for cancer in the NCCBD. Participants needed to be conversationally fluent in English to participate in the focus groups and interviews. Parents of children not expected to live for at least 6 months were not eligible to participate, as eSCCIP is not offered to families receiving end-of-life care. Potential participants were approached by phone or during in-person medical appointments for their child.

Data Collection

Two focus groups with parents of children with cancer were scheduled in the spring of 2019. In order to adequately capture the perspectives of fathers, who were underrepresented despite targeted recruitment in the first focus group, the second focus group was explicitly focused on recruiting fathers. Both focus groups were facilitated by the principal investigator (K. S. Canter). A second member of the research team was present to take notes, make observations, and help facilitate the discussion. Each focus group had six participants (two participants who had been previously exposed to eSCCIP and four who had not) and was facilitated in English. In order to ensure that parents naïve to eSCCIP had adequate information about the intervention, each focus group and interview began with an overview of eSCCIP, including a demonstration on a projector screen of the website. Parents were also given handouts featuring screenshots of the various components of the intervention (including the telehealth interface) and sample recruitment materials. Additional information was integrated into the focus groups and interviews as appropriate (e.g., in response to a question or comment).

While data saturation was achieved after the completion of the second focus group (e.g., no new themes were apparent), three interviews were also conducted by the principal investigator or a trained member of the research team after the focus groups were completed to ensure that the perspectives of underrepresented racial and ethnic groups were appropriately represented. All interviews were conducted in English and identical procedures to the focus groups were followed with regard to providing education about eSCCIP. Focus groups and interviews were audio recorded and professionally transcribed prior to data analysis. On average, focus groups lasted 90 min and interviews lasted 60 min. Parents were compensated for their time with a $30 store gift card.

The focus group and interview guides included questions across a range of domains, including questions about recruiting parents for eHealth intervention studies (e.g., “If you were approached about eSCCIP, what type of information would you like to have before deciding whether or not to participate in the program?”), recruiting multiple members of a family unit (e.g., “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?”), potential barriers to and facilitators of participation (e.g., “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.”), maintaining interest throughout participation (e.g., “What would be helpful for keeping caregivers interested and engaged throughout the whole program?”), and logistical considerations (e.g., “what type of device would be most convenient for completing eSCCIP?”).

Data Analysis

Thematic analysis was used to analyze the qualitative data, using an inductive approach (Braun & Clarke, 2006) that was also informed by Hsieh and Shannon (2005) approach to content analysis. Although there was a primary aim guiding the qualitative component of the study (i.e., focus groups were intended to generate strategies to optimize recruitment, retention, and engagement through the study), no predetermined question or specific theoretical lens was used to create a priori codes or guide the data coding process. The six steps for thematic analysis detailed by Braun and Clarke (2006) were used to guide the analysis from initial coding through synthesis of themes. The first focus group transcript was read in its entirety by three independent members of the study team (K. S. Canter, G. Vega, and A. Perez Ramirez) who met regularly to develop and review a coding dictionary. After the coding dictionary was established, two coders and the PI independently coded the first 10 pages of each transcript as a practice exercise and met to review codes, resolve discrepancies, and establish coding rigor. Once confidence in terms of consistency of code application was established, a primary (A. Perez Ramirez) and secondary (G. Vega) coder independently coded the remainder of the first focus group transcript. Dedoose Version 8.2.14 (2019) was used to organize data and apply codes. The PI reviewed the coding of the primary and secondary coder and identified any discrepancies. The study team then met again to resolve these discrepancies and come to consensus about appropriate application of codes.

The primary and secondary coder also independently coded the entire second focus group transcript. Discrepancies identified during this process were resolved through consensus discussion with both coders and the PI. Any additional codes that emerged during the coding process for the second focus group were discussed collaboratively and retroactively applied to the first transcript as appropriate. The three interviews were coded and reviewed using the same procedure. At the conclusion of coding, all transcripts had been reviewed and discussed to consensus by the three members of the coding team.

After coding was completed, codes were reviewed by the coding team to condense into subthemes and themes which informed a coherent narrative to interpret the data. An expert qualitative consultant (J. E. Deatrick) supervised this process. In addition to describing the data by themes, specific strategies to enhance recruitment, retention, and engagement efforts were extracted from initial coding of the focus group transcripts.

Results

Participant demographic information is presented below, followed by a description of themes that emerged from the focus groups and interviews. Refer to Tables II and III for illustrative quotes and associated recruitment, retention, and engagement strategies derived from the qualitative data.

Participants

Participant demographics are presented in Table I. Twenty-eight potential participants were identified for participation in interviews or focus groups, and 18 were successfully contacted and agreed to participate (64%). Of the 18 who agreed to participate, 2 (11%) did not arrive for their scheduled focus group. Participants were primarily female (63%), and half of the sample (50%) was white. A range of educational levels, household income levels, and child cancer diagnoses were represented.

Theme 1: Recruitment

Theme 1a: An Individually Tailored and Multidisciplinary Recruitment Approach is Most Likely to be Successful

Many participants spoke about the individual and distinct needs of each parent and family experiencing childhood cancer. Parents cautioned against developing a general recruitment approach that would be implemented consistently with each potential participant. They highlighted the importance of considering each parent’s unique experience and needs when determining when and how to approach about participation in eSCCIP. Parents stressed the importance of having buy-in from the child’s multidisciplinary medical team, discussing in particular the strong relationships that are often established with nurses and social workers. Parents expressed that each parent likely has a close relationship with at least one member of the child’s care team, and suggested that this provider could be helpful in terms of introducing eSCCIP. They advised against using a “blanket” rule (e.g., social workers will always introduce the intervention before meeting with a research coordinator) and recommended that the research team keep in close contact with the clinical team to determine who should first introduce eSCCIP.

Theme 1b: Presentation of eSCCIP to Parents is of Paramount Importance in Terms of Potential Participation

Participants spoke about the importance of introducing and explaining the intervention, noting that word choice and phrasing used by study team members during recruitment could be the difference between participating and declining. Participants who had completed eSCCIP expressed feeling that they received valuable psychosocial support and suggested highlighting the potential benefits for the parent as opposed to using language focused only on participating in a research trial. Participants suggested focusing on the actual time commitment (e.g., 30 min to 1 hr a week for 1 month), describing how a vaguer term (e.g., participation is expected to last one month) could be off-putting. Participants also spoke about the importance of stressing intervention flexibility when discussing eSCCIP, explaining that they would be more likely to participate in the intervention if they understood that they could complete modules and telehealth follow-ups during times that were most convenient for them. Parents also suggested developing recruitment materials in different formats that could be shared in various ways with potential participants. For example, they suggested having paper handouts to include in initial diagnosis educational materials, as well as developing informational/recruitment videos that could be connected to in-room television portals.

Theme 1c: Timing of Recruitment is Important

Participants spoke about the importance of paying attention to the timeline and treatment trajectory when determining the best time to approach potential participants, describing the initial period after diagnosis as a whirlwind. They also described the ongoing stressors associated with parenting a child with cancer, including fear of relapse and unpredictable acute medical events. In this way, their recommendations about timing of recruitment extended beyond the calendar to include a consideration of periods of heightened distress or concern that might not be tied to a “typical” treatment trajectory. Recruitment was not recommended during these times, although parents did acknowledge that the intervention would likely be helpful during times of increased distress.

Theme 1d: Introduce Intervention Early and Revisit Recruitment Often

Participants also suggested repeated mention of the intervention at various points during the treatment trajectory. Some participants suggested introducing the intervention during the initial treatment planning meeting with the family, perhaps through a “soft” introduction like a handout or brief overview. They suggested that multidisciplinary team members could revisit the intervention over the course of treatment, reminding parents that participation was an option throughout the course of treatment. Participants also noted that they are often overloaded with information and resources, especially early on in treatment, and might require multiple reminders that the intervention exists. They expressed that repeated mention of the intervention would keep eSCCIP on parents’ radars while allowing them to participate at a time that felt right for them.

Theme 1e: Offer Intervention to Each Caregiver

Participants spoke about different needs within and outside of the family unit—for example, several parents described how strategies that would be appealing to them might not be appealing to their spouse or co-parent. In addition to working with the medical team to determine the best way to approach parents about participation, parents also highlighted the importance of reaching out individually to all caregivers within a family. They specified that this could include non-parent caregivers, such as involved grandparents or adult siblings. One married dyad who completed eSCCIP discussed how beneficial it was for both of them to go through the intervention, which they felt provided a “shared language” to discuss their experience. Another parent who completed eSCCIP expressed how she would have liked for her husband to also complete the intervention; however, she noted that he was offered the opportunity to participate on several occasions and did not follow-up with the research team. This tension between respecting the autonomy of individual parents while also strongly encouraging participation by all primary caregivers was discussed by multiple parents.

Theme 2: Retention and Engagement

Theme 2a: Offer Flexibility With Scheduling and Format Whenever Possible

Parents repeatedly expressed that the flexibility of eSCCIP would directly impact their willingness to participate and remain in the intervention. They suggested flexibility with timing, but also with regard to other potentially modifiable factors. For example, parents suggested offering different formats for the post-module follow-up sessions (e.g., online or in-person), and noted that some parents might prefer that the follow-up sessions be optional altogether. They suggested keeping in close contact with parents and offering to provide reminders about intervention completion via multiple modalities (e.g., text, emails, phone calls).

Theme 2b: Reduce or Eliminate Common Technological Barriers

While parents expressed concern about timing and scheduling, which are not eHealth-specific barriers, they also expressed a number of concerns specific to the internet and technology. For example, parents described issues with reliability and speed of the hospital public WiFi network, which could impact eSCCIP completion during inpatient or outpatient appointments. This was described as likely to have an impact on participation, as inpatient and lengthy outpatient appointments were described as ideal times to complete eSCCIP modules. Parents indicated that working in advance to anticipate these barriers is important, and also provided concrete suggestions such as identifying private spaces in the hospital to complete the intervention. They expressed that a clear plan should be established to troubleshoot common technological problems, such as forgetting passwords. Parents also suggested “creative” approaches to increase access to the intervention, such as syncing eSCCIP with the in-room television portal (GetWellNetwork©).

Theme 2c: Providing Psychosocial Resources Beyond Intervention Completion is Crucial

Many parents reported that psychosocial and other supports are extremely common around diagnosis but fade as treatment progresses. This was described as a particular concern because, while fears and concerns might change over the course of treatment, parents noted that their needs do not typically decrease. Parents expressed that eSCCIP provides a unique opportunity to fill this gap. They suggested providing access to the intervention even after completion, and also suggested providing resources to providers in the community or “crisis management” supports. Parents expressed that eSCCIP might be enough psychosocial support for some participants, but expressed concern that other parents who are experiencing elevated levels of distress might require additional and perhaps more intensive support after completing the intervention. They stressed the importance of making sure that adequate resources could be identified for these parents.

Discussion

Parents of children with chronic diseases have valuable insight regarding strategies to increase recruitment, retention, and engagement in psychosocial research studies. In the current study, parents provided concrete suggestions regarding the timing and format of recruitment, presentation of study procedures, and strategies to make study participation more appealing to parents. They spoke of unique challenges when recruiting multiple members of a family, and discussed the need to provide psychosocial support extending beyond study participation. Parents also highlighted the importance of considering potential technological and logistical barriers that might appear to be inconveniences but could actually impact study engagement and retention. Themes generated from the qualitative data generated a number of tangible strategies that can be implemented in future research studies in an effort to improve recruitment, retention, and engagement and decrease barriers to intervention participation (Tables II and III). Results from this qualitative study and the related implementation strategies represent a step toward ensuring equitable intervention access to groups often under-represented in psychosocial intervention research.

Suggestions offered by parents were, at times, contradictory. Parents acknowledged the importance of accessing a psychosocial intervention during times of increased distress but also advised against recruiting parents during acute events (e.g., intensive care unit admission). Feedback was mixed with regard to timing in relation to diagnosis—parents suggested first introducing the intervention early in treatment, but also acknowledged that many parents would likely decline to participate in the days and possibly weeks immediately after diagnosis. Parents who had previously seen or completed eSCCIP expressed how useful the intervention would have been during periods when they might have been least likely to participate (e.g., shortly after diagnosis), describing this as a difficult problem to solve. They shared that having parent testimonials or ambassadors might be one possible solution to this dilemma, and also expressed that repeated mention of eSCCIP at various points throughout treatment might also help address this issue. These are helpful suggestions that encourage research teams to consider strategies such as partnering with past participants who can champion the intervention, identifying nursing and physician champions, and developing recruitment materials that can be “rolled out” at different points in the treatment trajectory.

Interestingly and somewhat inconsistently with some previous literature (e.g., Hocking et al., 2014), parents did not express many concerns related to prioritizing mental health needs or interventions for themselves. While parents did comment on scheduling and other logistical difficulties, an inherent understanding seemed to exist about the clear impact of pediatric cancer on parents and the importance of seeking help when needed. Parents who had completed eSCCIP expressed feeling comforted and less alone after watching videos of other families in the intervention, who represented a range of different pediatric diagnoses and experiences, which is in contrast to some prior literature suggesting that parents were less interested in psychosocial interventions that “combined” cancer diagnoses (Hocking et al., 2014). Parents who had not previously completed the intervention described a clear impact of their child’s cancer on their own mental health and indicated that they would have liked to know that eSCCIP existed and was available as a resource. Parents acknowledged the difficulty of prioritizing their own needs, particularly right after diagnosis or while their child was not doing well, but felt that the flexibility of eSCCIP was an asset (e.g., intervention could be accessed when they felt ready for it). The clear focus on parent mental health needs also highlights the importance of developing resources and post-intervention follow-up protocols to ensure that critical needs are not missed after intervention completion.

Some of the challenges and strategies identified by participants echoed the prior literature related to recruitment, retention, and engagement in pediatric psychology (e.g., Lim et al., 2011). For example, parents discussed the importance of partnering with the multidisciplinary medical team to help identify parents who might benefit from a particular intervention, employing parent “ambassadors”, and becoming “insiders” as opposed to functioning as a separate entity from the clinical team. Many strategies identified by parents in the current study will likely be useful for other groups of researchers designing and testing clinical interventions for parents within pediatric psychology. A next step for this line of research is to involve parents at different phases of future studies, including the design and initiation of recruitment, to ensure that their perspectives and valuable insights are integrated into study protocols. With the increased focus in recent years on the impact of cancer on the entire family (e.g., Psychosocial Standards for the Care of Children with Cancer and Their Families; Wiener et al., 2015), it is possible that parents and parent advocacy groups will continue to become increasingly interested in these types of partnerships. Many strategies and suggestions offered by parents likely cut across disease groups; it will be important for future researchers in other populations to consider how to incorporate unique parent perspectives without “reinventing the wheel” with regard to previous, likely relevant work.

Although not the primary focus of the current study, parents offered additional suggestions aimed at improving eSCCIP in advance of a larger-scale study and eventual clinical dissemination. Parents provided recommendations related to increasing access to the intervention, including prioritizing a Spanish-language adaptation of eSCCIP and making accommodations for individuals with reading or hearing impairments (e.g., offer closed-captioning for all videos). They communicated a sense of obligation to other families, noting that helpful intervention programs should be offered to as many parents as possible. The absence of these adaptations and accommodations is a current weakness of eSCCIP that limits intervention inclusion, but the important suggestions offered will be incorporated into the immediate next steps of the eSCCIP research program. For example, iterative improvements are being made to add closed-captioning functionality to all videos, and a Spanish-language development project is underway.

Parents also described the importance of offering psychosocial interventions to all caregivers in a family system while also expressing how challenging this can be at times. They described an overwhelming desire to connect with their partners during the stressful trajectory of cancer treatment, expressing that interventions like SCCIP can provide the language and tools to make this a reality. However, sometimes in the very same breath, they acknowledged the importance of allowing each parent the autonomy and respect to make their own decision about seeking psychosocial support. The eventual conclusion seemed to be that interventions like eSCCIP should be offered to all members of the family, with a clear effort to highlight the benefits to each individual. However, parents stopped short of recommending that participation by multiple family members should be “required”.

There are several limitations that should be considered when evaluating the current study. While intended to generate recruitment, retention, and engagement strategies that are broadly applicable within pediatric psychology and eHealth, focus groups and interviews dealt specifically with eSCCIP. It is possible that strategies will not generalize to other interventions or pediatric populations. Although efforts were made to intentionally recruit a “mixed” group of naïve and “previously exposed” eSCCIP participants, separating groups or analyzing responses by participant type may have led to additional insights or future research directions that were not generated using the selected approach. Single/unpartnered parents and non-parent caregivers were also underrepresented in the focus groups and interviews. Many strategies suggested by parents with regard to recruitment, retention, and engagement (e.g., engaging “parent champions” in the recruitment process) may be inappropriate to implement until the efficacy of eSCCIP has been established, perhaps limiting the immediate utility of some study findings. This issue also raises important ethical questions about conducting psychosocial intervention trials and balancing parent preferences and clinical needs against rigorous scientific methods.

The current study is an important component of a program of research focused on developing, testing, and disseminating innovative psychosocial interventions for parents in pediatric oncology. Partnering with parents to develop and refine eSCCIP (Canter et al., 2019) led to the development of a stronger intervention informed by stakeholder feedback, and parents also offered valuable insights in the current study with regard to strategies to increase the appeal and impact of psychosocial intervention programs. They provided recommendations about concrete recruitment strategies, as well as harder to define concepts like the ideal language to describe potential benefits of intervention participation to parents during high-stress times. These strategies will be integrated into a recruitment, retention, and engagement plan for the next phase of eSCCIP research, which is a large-scale clinical trial to establish an evidence base for the intervention prior to clinical dissemination.

Acknowledgments

The authors wish to acknowledge the parents who gave generously of their time to participate in this study.

Funding

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under Award Number R03CA235002. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Additional technological support for eSCCIP provided by an Institutional Development Award (IDeA) from the National Institute of General Medical Sciences of the National Institutes of Health under grant number U54-GM104941 (PI: Binder-Macleod).

Conflicts of interest: None declared.

References