Pediatric Psychosocial Standards of Care in action: Research that bridges the gap from need to implementation

Abstract

Objective:

To describe innovative models of psychosocial care delivery that align with published Standards of Psychosocial Care of Children with Cancer and their Families, in efforts to bridge the divide between research and practice.

Methods:

The Mattie Miracle Cancer Foundation, in partnership with the American Psychosocial Oncology Society reviewed 22 letters of intent and 13 full grants and awarded small grants to researchers with high quality projects that aimed to implement any of the published 15 Standards of Care. For three of the highest rated funded research projects, we describe the Standard implemented, the novel research design and implementation strategies, and how the research findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps.

Results:

The first study presented is an innovative eHealth intervention for parents of children with cancer designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults with leukemia, and the third creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers.

Conclusions:

Several themes emerged from the studies presented, including (1) attention to barriers to previous attempts at implementation; (2) technology’s role in delivering care; (3) the need for stakeholder involvement; and (4) consideration for multi-pronged solutions that address heterogeneity in care settings. Next steps for integrating the Standards of Psychosocial Care into clinical practice are discussed.

1 |. BACKGROUND

Comprehensive pediatric cancer care necessitates psychosocial support and services for children and families from the time of cancer diagnosis throughout treatment and into survivorship or end of life and bereavement.¹ To address critical gaps in psychosocial care at institutions and care centers around the country, the Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC) was formed in 2012 with leaders in the field of pediatric psycho-oncology and a large interdisciplinary group of expert stakeholders. In December of 2015, the PSCPCC, supported by the Mattie Miracle Cancer Foundation (MMCF), published 15 evidence-based Standards for Psychosocial Care for Children with Cancer and their Families.² Since that time, these Standards have been endorsed by 17 cancer organizations and provided a blueprint for services considered essential for all children with cancer and their families.

While creation of this set of Standards was the first step toward state-of-the art pediatric psycho-oncology services, the implementation of robust evidence-based assessment and treatment into routine clinical practice has been slow to follow.³ Implementation science has long recognized that dissemination of innovation is a complex phenomenon. Implementation of practice standards requires attention to the day-to-day responsibilities of psychosocial providers, the constraints they face, and the practice of psychosocial care in medical settings. For change of practice to occur, new practice must demonstrate an advantage over the current one and be feasible for the psychosocial provider to implement and incorporate into existing practice.⁴ Exemplar practice models, however, have been limited or unavailable for the Standards of Psychosocial Care, which has likely contributed to the slow and inconsistent implementation across treatment settings. Almost immediately after the Standards were published, the PSCPCC began receiving requests from individual providers and treating centers for care delivery models and concrete tools to help implement the Standards. The PSCPCC recognized that next steps were needed. To that end, this paper describes an initiative to improve implementation of the Standards through a targeted grant mechanism and highlights three funded projects that employ novel strategies for bridging Standard-to-practice gaps.

2 |. METHODS

In response to the need for improved implementation of the Standards, MMCF, in partnership with the American Psychosocial Oncology Society (APOS), tapped the expertise of psychosocial providers and competitively funded researchers with high quality research that aimed to evaluate implementation of any of the published 15 Standards of Psychosocial Care. Early career investigators, who would not yet be likely to receive larger government or organizational grants were eligible to respond to the letters of intent (LOIs). Information about this funding opportunity was distributed through the listservs of several organizations including the APOS, Association of Pediatric Oncology Social workers (APOSW), Association of Pediatric Hematology/Oncology Nurses (APHON), the International Psycho-Oncology Society (IPOS), the International Society of Paediatric Oncology (SIOP), and the American Psychological Association’s Society of Pediatric Psychology (Division 54). The APOS Pediatric Special Interest Group created a scientific advisory committee comprised of senior pediatric psycho-oncology researchers to review the LOIs and applications submitted in response to this call (Table 1).

TABLE 1.

Letter of Intent (LOI) for pediatric psychosocial standards of care investigator award requirements

• Overview of the project proposed that addresses one or more of the Pediatric Standards of Care for children with cancer and their families.

• How the Standard you chose will be implemented into practice

• Purpose, aims, methods, and outcome measures

• A one-year timeline of tasks and objectives to be completed

• Impact Statement: How this project will impact pediatric psychosocial Standards of care and Mattie Miracle’s mission to ensure optimal psychosocial care for children with cancer and their families throughout the cancer trajectory.

• Innovation Statement: How this project is a novel approach to childhood cancer research.

• Mentorship Team/Plan (Identify mentor[s] and describe general plan for mentorship).

Twenty-two fully completed LOIs were submitted. After review, 13 LOIs were invited for a full grant submission. Grant award recipients were selected through a review process using the following criteria: (1) significance to psychosocial oncology and the chosen Standard of Psychosocial Care; (2) scientific merit; (3) innovation; (4) appropriateness of methodology given the research question; (5) adequacy of human subjects; (6) appropriate environment, budget, and time frame. The grant proposal with the highest score received the APOS MMCF Pediatric Psychosocial Grant award. The MMCF was so impressed by the caliber of proposals that they selected five additional grants (ie, those that would provide deliverable outcomes for several of the Standards that are important to the mission of their foundation) to fund at a lower level.

To highlight innovative models of psychosocial care delivery that align with published and endorsed Standards of Psychosocial Care, this paper describes three of the highest rated funded research projects, representing three of the Standards. All projects were reviewed and approved by the local institutional review board (Nemours Office of Human Subjects Protection, Reference #: 1329939; Boston University Institutional Review Board, Reference #: 1519E; Children’s Hospital of Philadelphia Institutional Review Board, Reference #: 18–015806) and written informed consent was obtained from all participants. For each project, we describe the Standard implemented, the research design and novel implementation strategies employed, and how their findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps. The first study is an eHealth intervention for parents of children with cancer (POCC) designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults (AYA) with leukemia. The third study creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers. Table 2 provides a summary description of each Standard, the research gaps/challenges, and study methods. The translation of pediatric psychosocial oncology research into clinical practice and future directions for translating the Standards into clinical practice will be discussed.

TABLE 2.

Description of each standard, research gl caaps/challenges, and study methods

Standard	Research gaps/challenges	Study objective(s)	Subjects/stakeholders	Methods
Psychosocial care for parents: “Parents and caregivers of children with cancer should have early and ongoing assessment of their mental health needs. Access to appropriate interventions for parents and caregivers should be facilitated to optimize parent, child, and family well-being.”	• Evidence-based psychosocial interventions for parents of children with cancer are limited • In-person psychosocial interventions are difficult to deliver due to logistical and other barriers	• Establish “real world” acceptability and feasibility data for eSCCIP • Collect preliminary data regarding hypothesized psychosocial benefits of eSCCIP	• Parents/primary caregivers of children with cancer (n = 30) • Intervention delivered by trained pediatric oncology social workers	• Trained pediatric oncology social workers deliver intervention • Acceptability, feasibility, and efficacy data collected via online surveys (REDCap)
Assessing medication adherence: “Adherence should be assessed routinely and monitored throughout treatment.”	• Adherence is infrequently assessed • Many logistical barriers (eg, lack of time during clinic) • Difficult to select an appropriate adherence measure that is valid and has clinical utility	• Pilot daily text message surveys of oral chemotherapy adherence and other proximal contextual factors that may impact adherence (eg, mood, location)	• Adolescents/young adults with acute lymphoblastic leukemia prescribed 6-mercaptopurine (n = 18) • Matched oncology providers who were provided with daily adherence data	• Low-cost text messaging service (Twilio) to deliver adherence surveys across 28 days; Data stored in REDCap • Electronic pill bottle to examine concordance with text surveys
Supporting siblings: “Parents and professionals be advised about ways to anticipate and meet siblings’ needs, especially when siblings are unable to visit the hospital regularly.”	• Despite well-documented psychosocial risk and unmet needs in siblings, the sibling Standard is among those least likely to be implemented • Barriers to supporting siblings are poorly understood	• Delineate the specific barriers to providing sibling psychosocial services • Identify ways to overcome barriers • Apply findings to the creation of a blueprint for best practices in sibling services	• Participants: national sample of psychosocial providers with experience in childhood cancer • Stakeholders: siblings and parents informed research design and objectives	• In-depth qualitative interviews with providers to characterize barriers and inform the development of a new blueprint for sibling psychosocial assessment, support, and intervention

3 |. RESULTS

3.1 |. Standard: Standards for Psychosocial Care for POCC

POCC are at high-risk for a range of adverse outcomes following their child’s cancer diagnosis. While many families are resilient and return to pre-diagnosis levels of functioning after a period of initial distress, a subset of parents will continue to experience negative psychosocial sequelae after diagnosis and may even experience worsening symptoms over time.^5,6 In order to address the important needs of parents at diagnosis and across the cancer trajectory, the sixth Standard of Psychosocial Care states that “Parents and caregivers of children with cancer should have early and ongoing assessment of their mental health needs. Access to appropriate interventions for parents and caregivers should be facilitated to optimize parent, child, and family well-being.”⁷

It is well-documented in the literature that, while parents often recognize the need for mental health support and intervention during their child’s cancer treatment, a number of barriers exist that make the provision of this care challenging.^8,9 The evidence base is encouraging with regard to the efficacy of brief psychosocial interventions for POCC, but limited treatment options exist in clinical care settings.^10,11 eHealth interventions, which are delivered virtually and offer increased flexibility and convenience for POCC, represent a promising avenue for delivering evidence-based psychosocial care to a broader audience. An added benefit of eHealth interventions is the potential to decrease health disparities that may contribute to differential access to high-quality treatment based on factors such as transportation.

The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) was developed to meet the needs of POCC by offering a brief, evidence-informed, eHealth psychosocial intervention specific to pediatric cancer.¹² Initial results suggest that the intervention is highly feasible and acceptable to POCC, and POCC have provided valuable feedback at various stages of intervention development to improve content, functionality, and recruitment/retention procedures.^12,13 In order to quickly establish an evidence base for the treatment and in an effort to shorten the timeline from intervention development to dissemination, the study team has prioritized novel study designs which allow for simultaneous collection of efficacy (eg, feasibility/acceptability) and preliminary implementation data.

This MMCF-funded study was designed to pilot test eSCCIP in a “real world” clinical setting. Leveraging an existent partnership with Inova Life with Cancer, the psychosocial treatment arm of the Inova Schar Cancer Institute, the study focuses on training the pediatric treatment team of Licensed Clinical Social Workers (LCSWs) to deliver eSCCIP. All members of the pediatric treatment team at Life with Cancer were previously trained in an in-person version of the Surviving Cancer Competently Intervention Program. eSCCIP training materials were developed, including a detailed intervention and study manual, example videos for telehealth sessions, and fidelity checklists. A day long in-person training was conducted, with several additional in-person study visits by the PI. Monthly phone meetings with the study team were also conducted to monitor intervention progress, completion milestones, and address any additional study needs or concerns. The primary study outcomes are intervention acceptability and feasibility; psychosocial outcome data (ie, symptoms of posttraumatic stress, anxiety, acute distress, and family functioning) are also collected. By training LCSWs to deliver eSCCIP at an offsite location, the study team is able to collect valuable data about the process of “rolling out” the intervention beyond a more controlled hospital environment. In addition to traditional metrics of feasibility, such as recruitment and retention numbers, we are also able to identify and problem-solve issues related to functionality (eg, issues with Internet connectivity in different settings).

Participant enrollment is nearly complete per the original target in the grant. At the conclusion of the study, we will have valuable outcome data and data to inform the clinical utility and feasibility of eSCCIP. This is an essential piece in the larger dissemination plan for the intervention.

3.2 |. Standard: Assessing medication adherence as a standard of care in pediatric oncology¹⁴

Per the adherence Standard, “adherence should be assessed routinely and monitored throughout treatment” (pg. S818). Childhood cancer treatment protocols require patients and families to self-manage complex treatments from home, including administering various medications with diverse dosing schedules. Despite the critical importance of adherence for optimizing cancer outcomes, nonadherence is prevalent, particularly among AYA. To expedite the detection of adherence problems and deliver interventions before these problems worsen and adversely impact health, this Standard calls for frequent and standardized assessments of medication adherence throughout childhood cancer treatment.

There are many implementation challenges related to assessing medication adherence in clinical practice. Prior work has shown that pediatric cancer providers inconsistently assess cancer-related adherence in AYA due to several logistical barriers (eg, limited knowledge/training, lack of time, competing priorities during clinical encounters).¹⁵ When adherence is assessed, the primary method is asking the patient directly, rather than utilizing standardized self-reported or objective measures that are less prone to bias.³ Standardized measures are often too difficult to implement in fast-paced oncology settings; traditional self-reported measures are typically lengthy, nonspecific to childhood cancer, and reliant on accurate retrospective reporting; and objective measures (eg, electronic monitors) are costly and difficult to interpret.^16–18 Further, once nonadherence has been detected, there is limited empirical guidance about how to identify adherence barriers and intervene.^19,20

AYA with acute lymphoblastic leukemia (ALL) are an ideal population to test novel adherence assessment methods, such as mobile-based assessments. AYA with ALL must take a daily oral chemotherapy called 6-mercaptopurine (6MP) during the 2 years of maintenance therapy, which is vital for durable remission and survival. Nearly 50% of patients demonstrate 6MP adherence below the critical level for relapse prevention (95%), conferring a 2.5 greater risk of relapse.^21,22 Within the first month of maintenance, 6MP adherence may decrease as rapidly as 6% per day.²³ The maintenance period is also a time when direct support from the oncology team decreases with longer intervals between clinic visits, placing greater responsibility on patients and their caregivers to self-manage treatment demands from home. ²⁴

Mobile technology is constantly consumed by AYA²⁵ and offers a scalable solution for addressing this Standard-to-practice gap. Mobile devices facilitate the delivery of ecological momentary assessments (EMAs), or recurring surveys of real-time behaviors (eg, medication adherence) and other contextual factors relevant to adherence (eg, mood).²⁶ While never previously piloted in AYA with cancer, EMA has shown high feasibility across studies of AYA with chronic health conditions²⁷ and utility in measuring the temporal determinants of AYA health behaviors including nonadherence to other disease regimens.^28,29

Thus, this MMCF-funded study piloted EMA of 6MP adherence and proximal contextual factors that may influence daily adherence (eg, physical and emotional symptoms, location during the dose). Application of EMA to AYA cancer treatment adherence is novel because it has never been done and provides several methodological advantages: EMA (1) reduces recall bias, (2) increases real-world generalizability, and (3) provides multi-level temporal data about how events, behaviors, and experiences play out over time, place, and context. Eighteen AYA with ALL taking 6MP were recruited and received EMA surveys via text messages, once per day, for 28 days (ie, the time between monthly maintenance visits). Our approach leveraged a low-cost text messaging platform (Twilio), which integrates with REDCap to store data in a health insurance portability and accountability act -compliant database. To evaluate initial validity of EMA, we also examined the concordance between EMA and electronically-monitored 6MP adherence. We provided a summary of each participant’s adherence data to oncology providers. Primarily, we hypothesized that EMA would be feasible, acceptable, and converge with data from the electronic pill bottle. A secondary aim was to examine the temporal associations between contextual factors and 6MP non-adherence. We hypothesized that greater physical symptoms and negative mood, worse motivation, experiencing a family stressor, being outside of the home without parents, and a weekend dose would be associated with a missed 6MP dose that day.

Recruitment is closed and results and data analyses are underway. Findings will yield critical information about the utility of EMA for increasing implementation of the adherence Standard across pediatric oncology settings, as well as facilitating the identification of real-time adherence barriers in order to expedite the delivery of targeted interventions.

3.3 |. Standard: Supporting siblings as a standard of care in pediatric oncology

Childhood cancer affects not only the patient but also family members, including siblings.³⁰ In recognition of the family effects of childhood cancer, Standard 10 states that siblings are a psychosocially at-risk group and should be provided with appropriate supportive services.³¹ This Standard calls for the routine assessment and psychosocial support for siblings and recommends that “parents and professionals be advised about ways to anticipate and meet siblings’ needs, especially when siblings are unable to visit the hospital regularly”.

This Standard emerged from systematic reviews of a substantive research base documenting changes in siblings’ emotional and physical health across the trajectory of cancer care and into adulthood.^31–33 Although some siblings report positive adaptation to childhood cancer (eg, family closeness, hopefulness, and maturity), many report strong negative emotions such as anger, worry, fear, sadness, and guilt.³² Approximately one-quarter of siblings meet criteria for cancer-related posttraumatic stress disorder,³⁴ and siblings have increased risk for school absenteeism, poor health behaviors, and poorer health outcomes that extends into adulthood.³³ Siblings report high levels of unmet needs for social support and indicate needing help coping with cancer-related stressors.³⁵

Despite decades of research that outlines siblings’ psychosocial risk, the sibling Standard is poorly implemented. After the release of the Standards of Psychosocial Care, a follow-up survey of psychosocial care providers across 144 pediatric oncology programs in the United States revealed that the sibling Standard was among those least likely to be implemented.³ Similarly, a survey of social workers from 81 institutions revealed that only one-third of centers consistently offer psychosocial care to siblings.³⁶ The nature of the available services, the number of siblings who engage with psychosocial programs, and barriers to providing services remain poorly understood. Thus, the existing research literature lacks specificity regarding how to improve implementation of the sibling Standard.

This MMCF-funded study directly addresses these gaps in our knowledge of sibling services. The qualitative project was designed by an interdisciplinary research team that includes sibling and parent stakeholders and aims to better characterize existing sibling services, delineate barriers to providing sibling services, and identify ways of overcoming implementation barriers. The project will culminate in a preliminary blueprint for sibling services. To meet these research goals, we are recruiting a purposive sample of psychosocial providers from cancer centers across the United States. The sample includes psychologists, social workers, and psychiatrists representing centers that range in size, location (eg, urban vs rural), academic affiliation, and nature and extent of current sibling offerings. This breadth will improve the extent to which findings are relevant to a broad range of treatment centers.

In-depth interviews included the following sections: (a) background information about the participant and center characteristics (eg, provider discipline, size and scope of center and oncology service, patient demographics), (b) description of current sibling services (assessment, support/intervention, and education/consultation) and utilization thereof, (c) perceptions of barriers and factors that facilitate systematic provision of sibling services, (d) ideas for both a state-of-the-art sibling program and lower-cost, easier-to-implement sibling initiatives, and (e) reactions to the content, format, and usability of an evolving blueprint of siblings services, which may include recommendations regarding the timing and nature of sibling services, ideas to overcome common barriers, and case examples. Preliminary data analysis is ongoing throughout data collection so that the blueprint can be created and continuously updated based on each participant’s feedback. In this way, each participant is responding to the most up-to-date version of the blueprint. Enrollment will continue until participants agree that the blueprint is sufficiently feasible and clear to be introduced into clinical settings for further evaluation.

To date, our findings suggest the poor state of sibling services at most institutions and characterize the systematic barriers to implementing sibling services. Drawing on the current literature and providers’ qualitative data about best practices and barriers to sibling services, we created a comprehensive blueprint that systematizes sibling-focused psychosocial assessment and support. The blueprint was created with close attention to addressing the barriers to providing sibling assessment or support and includes options for programs with higher and lower levels of resources for sibling services. The blueprint is currently being evaluated by psychosocial providers for content, usability, and feasibility.

This project is novel due to its pragmatic, solution-oriented approach which involves enrolling a national sample of psychosocial providers to identify and disseminate feasible implementation strategies that will be relevant across a range of care centers. The project is intended to provide centers with concrete ideas about how to better integrate siblings into models of psychosocial care. This systematic approach to addressing barriers to care that can be flexibly implemented across institutions will ensure wider availability of much-needed services and better integration of the sibling Standard. The ultimate goal of this program of research is to foster positive adaptation for all family members affected by childhood cancer, which is consistent with the MMCF’s mission to increase awareness and high-quality mental healthcare for children with cancer and their families.

4 |. DISCUSSION

The field of pediatric oncology has been strengthened by the publication of the first set of evidence-based Standards of Psychosocial Care. The question remains, however: how do these evidence-based Standards get implemented into real world clinical settings? This paper provides three examples of research using novel implementation strategies to bridge the divide between research and practice and bring interventions to those most in need. Several themes emerged from the studies presented. These include identifying barriers to previous attempts at implementation; the role of technology in delivering care; the need for stakeholder involvement; and consideration for multi-pronged solutions.

4.1.1. |. Identifying barriers

Identifying barriers to previous attempts at implementation or reasons underlying failed or slow implementation is a core component of implementation science, as barriers can both contribute to the evidence-practice gap and be determinants of change.³⁷ By purposefully designing interventions and strategies to address previous barriers, then, our researchers are aiming to improve care (ie, quality and availability) for parents, adolescents, and siblings, and reduce the practice gaps. POCC, for example, have limited time to participate in supportive interventions. Treatment is often provided far from the child’s home. Even if treatment is offered close to home, parents are generally reluctant to leave their sick child to tend to their own mental health or receive support for themselves. In response, eSCCIP, an eHealth intervention, provides a brief evidence-based psychosocial intervention in a virtual format, allowing for maximum flexibility and convenience. Similarly, to address barriers associated with assessing adherence (i.e., lack of provider training, time, reliance on unstandardized self-report), mobile technology was not only used for assessment of medication adherence, but also to assess mood and other contextual factors in real time. Finally, Long and colleagues have engaged in a systematic qualitative approach to identify and address barriers to sibling care in order to produce a blueprint of strategies that can be flexibly implemented across institutions. This universal attention to barriers is critical in moving the Standards toward more consistent uptake in oncology practice settings across the country.

4.1.2. |. Role of technology in delivering care

As noted in the development of eSCCIP and mobile technology to measure other patient reported outcomes in real time, technology has the potential to promote culture change while also addressing disparities (eg, supporting family members that may not always be available for interventions at the hospital) and increasing the accessibility of psychosocial care for patients and family members. Harnessing technology to provide support and intervention may be particularly critical for family members who are unable to visit the hospital regularly, as is often the case with siblings during periods of heightened concern for infection (eg, flu season, COVID-19). Technology, however, also comes with new challenges (eg, how to feed information from devices back to oncology providers/electronic health record in real-time; sustaining patient/family engagement). Future research will be critical to identify ways to most effectively and acceptably leverage technology to improve patient and family outcomes.³⁸

4.1.3. |. Stakeholder involvement

Stakeholder involvement is a necessary and critical component of implementation science, impacting overall acceptability and uptake. From the beginning, PSCPCC understood this notion and included stakeholders (eg, parents of children with/survivors of childhood cancer) in every working group involved in the development of each of the Standards of Psychosocial Care. This focus on stakeholder involvement continued within the current implementation projects. For example, Canter and colleagues solicited feedback from POCC throughout the development of eSCCIP to improve content, functionality, and recruitment/retention procedures,^12,13 and Long and her team included the perspectives of siblings, parents, and providers from the earliest stage of project development as part of a larger initiative of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC; https://sparcccpartnership.wixsite.com/sparccc) to improve the quality of sibling-focused research and supportive care. Psihogios and colleagues focused on AYA adherence and sharing data with their oncology providers, however, future directions will include caregivers who are also intricately involved in managing cancer-related medications (even among AYA).¹⁵ These efforts and additional community participatory research methods are valuable in intervention design and implementation, especially as we strive to reach underserved communities. These efforts should explicitly consider cultural and linguistic diversity and include the voices of sociodemographically-diverse families to better account for differences in psychosocial support preferences and acceptability to ensure that implementation of the Standards is responsive to all families’ needs.³⁹

4.1.4. |. Consideration for multi-pronged solutions

Multi-pronged solutions are needed for developing and testing implementation strategies that promote the highest level of psychosocial care. These solutions move away from a one-size-fits-all approach and thoughtfully consider family preferences pertaining to the content and focus of support services, the location and mode of intervention, and address heterogeneity in staffing, available resources, and patient/family demographics. Such solutions are needed at the local level (eg, individual hospitals or community centers with eSCCIP, the development and delivery of EMA, and sibling support strategies), but also at the national level, which may involve policy creation and/or change. Multi-pronged solutions also benefit from multi-site collaborations, as seen by enrolling a national sample of psychosocial providers to identify and disseminate feasible implementation strategies for sibling care that will be successful across both higher- and lower-resourced settings.

5 |. CONCLUSION AND FUTURE DIRECTIONS

The studies presented in this paper illustrate novel ways to implement specific pediatric Standards of Psychosocial Care into existing practice. While these innovations hold the promise of improving the psychosocial wellbeing of children with cancer and their family members, their impact depends on adoption and implementation by the various stakeholders,⁴⁰ starting with patients and families. Second, successful implementation strategies require attention to the challenge of enlisting frontline practitioners to make changes to their typical clinical practice. Third, it requires an honest assessment of the quality of care currently provided at the institution level, or more specifically, how well the 15 Standards are actually being implemented within each setting.

To address the second and third challenge, the PSCPCC is in the process of developing new implementation tools: a Matrix and Guidelines. The Matrix consists of a scoring system of 1 to 5, with a 1 reflecting lack of implementation of the Standard and 5 reflecting gold standard, comprehensive care and complete implementation at a given institution. The Guidelines will accompany the Matrix and provide specific guidance to frontline practitioners on “how to” improve implementation of each Standard, and hence, improve the institution’s score. Once available, these next generation tools will greatly enhance our ability to integrate the Standards of Psychosocial Care into clinical practice. Moreover, as we face increasingly dynamic and resource-constrained conditions, unique study designs and innovative implementation strategies like those presented here will play a critical role in delivering evidence-based psychosocial care across pediatric cancer settings, to ultimately improve the lives of children with cancer and their families.

DATA AVAILABILITY STATEMENT

n/a Once these studies are completed, they will be published independently and data availability statements will be included