Education Initiative for Essential Conversations with Parents—Serious Illness Guide for Pediatrics (SICG-Peds©-Peds)

Abstract

Objectives

To explore whether training on the SICG-Peds© (Serious Illness Guide for Pediatrics) impacts a pediatric clinician's confidence and knowledge in participating and initiating/leading difficult conversations with families of children living with a serious illness.

Methods

Over 2 years, clinicians from BC and Ontario who care for children with serious illnesses attended training workshops on the SICG-Peds©. These workshops were evaluated using pre- and post-workshop questionnaires. Participants reported confidence scores on a scale of 1 to 10.

Results

In total, 134 and 140 clinicians attended the workshops in BC and Ontario, respectively. The majority of clinicians who completed the immediate post-workshop survey (N = 223, 94.5%), responded that the content enhanced their knowledge about pediatric serious illness conversations (SIC). Confidence scores in initiating/leading a SIC significantly increased from median 5 (interquartile range [IQR] 3-7) pre-workshop to 7 (IQR 7-9) immediately post-workshop (P < .0001). Confidence scores in participating as a non-leader in a SIC also significantly increased from median 7 (IQR 6-9) pre-workshop to median 8 (IQR 7-9) immediately post-workshop (P < .0001).

Conclusions

Overall, these workshops significantly improved participants’ confidence. Effectiveness and knowledge enhancement were other areas where the majority of participants reported positive improvements. Areas for continued support were identified as more mentoring, and training for supporting the guide's use in a clinical setting.

Introduction

Pediatric palliative care involvement may contribute to outcomes for children with serious illnesses, including reduced emergency department visits and painful intensive admissions. ¹ However, the availability of pediatric palliative care consults is not equal across all programs. Delivery of health care that aligns with what matters most to patients, requires clinicians to be trained and skilled in both theory and process, in meaningful communication practices and advance care planning (ACP). Clinicians directly caring for seriously ill children and their parents require education and support that includes a process of identifying who needs these conversations and considerations specific to pediatrics. Parents of seriously ill children report that opportunities to engage with ACP conversations with clinicians are sparse, often missed, or too late.^2–6 In addition, for children living with severe disability, aspects related to quality of life are overlooked in discussions. ⁷

Pediatric Palliative Care associations and task forces recommend Pediatric ACP as paramount to providing quality pediatric care.^8,9 ACP is a lifelong process of reflection and communication to identify values, wishes, and beliefs in relation to the kind of health and/or personal care a child, or parent may want for their child, to guide future healthcare decisions at times of great uncertainty.^10,11 In pediatrics, this also includes considering the child's ability to understand, participate, and make specific decisions in regard to their care.^10–12 A child/family have the ability to plan anticipated healthcare decisions when ACP/goals of care (GOC) conversations happen early, regularly, and routinely across a child's illness trajectory, which can often facilitate adaptation to illness realities and improve communication between child/family and healthcare team, as well as impact satisfaction of care and overall quality of life of the child.^2,3,5,6,12 Pediatric advance care planning (pACP) is recognized in the literature to increase children's (when applicable) and parents’ capacity to anticipate decisions, support family coping, provide peace of mind, increase sense of control, and reduce suffering.^2,3,6,12

There is a reported lack of ACP communication training among pediatric clinicians and subsequently, confidence in that skill.^2,6,12 Pediatric clinicians face additional barriers to those who work in adult palliative care, including caring for children too young to express their wishes, collaborating with parents as surrogate decision-makers, treating rare diseases for which prognostication is particularly difficult, and interacting with multiple healthcare providers and teams with differing communication competencies.^2,6,12 Clinicians may lack necessary skills, training, and confidence; worry that raising serious illness and end-of-life issues will be detrimental to patients; have time constraints, be uncertain about who is the appropriate person to initiate the conversations; and have no systematic process for initiating conversations and ensuring quality control.^2,6,12 DeCourcey et al recognize that having a specific framework, alongside training among a multidisciplinary team for initiating difficult conversations about ACP in children, could serve to enhance clinicians’ confidence, maintain a consistent message from clinician to clinician, and ensure potential concerns of the family are addressed. ³ Moreover, a specific framework can serve as foundational to education and training surrounding serious illness, communication practices, and application to adult learning principles.

The serious illness conversation guide (SICG) program developed by Ariadne, a Joint Center for Health Systems Innovation, has found that frequent, earlier, and structured serious illness conversations reduce anxiety and depression for patients, improve the patient and clinician experience, and decrease health care expenses.^13,14 SICG is unique in that it is designed to promote conversations that focus on what is most important to patients living with serious illness and to explore factors that are key to maximizing quality of life. In British Columbia (BC), Canada, the BC Centre for Palliative Care and BC Health Authorities have utilized the adult-oriented SICG for some time.

Canuck Place Children's Hospice (CPCH), in Vancouver, BC, is a charitable organization providing pediatric palliative care services throughout BC and Yukon through its 2 hospices, an in-hospital consultation team that is highly integrated into the tertiary care centers and an in-home community team. This group recognized that a guide such as the SICG is consistent with the goal of improving communication with parents of children with serious illnesses. In July 2017, CPCH began the process outlined by Ariadne Labs to adapt the SICG for the unique issues of the pediatric population.^2,3,6,12 By including relevant clinicians, families who had or have a seriously ill child, and groups with a professional interest in palliative care in the adaptation process, a range of perspectives was captured. The adapted guide, along with the adapted “Train the Trainer” model, has been incorporated into practice at CPCH since 2018. ¹⁵ Adapting the guide recognizes family-centered language, parents/guardians as the primary decision-makers, flexibility for a child's developmental stage and consideration surrounding the difficulty of prognostication in children with rare diseases. CPCH is using the guide with parents of seriously ill children in a variety of settings with a wide range of medical conditions. Feedback from them, as well as clinician colleagues involved in those conversations, has generated positive outcomes related to sensitivity, a helpful format to convey difficult information (eg, prognosis), a deeper understanding of parental worries, hopes, and strengths, and a platform to plan follow-up care. As a result, we sought to further evaluate the Serious Illness Guide for Pediatrics (SICG-Peds©), its utility in providing better pACP, and improving front-line clinicians’ confidence in pACP and serious-illness conversations.

Pediatric Palliative Care clinicians from CPCH combined efforts with colleagues in Children's Hospital of Eastern Ontario (CHEO) palliative care program in Ontario to study the impact of SICG-Peds© training for clinicians who may or may not have had formalized or practiced training in conducting these conversations. The CHEO program serves children in the Eastern and Northern Ontario, Western Quebec, and Nunavut regions and incorporates many CHEO services and community partners, including Roger Neilson House, the pediatric hospice, located on the grounds of CHEO. CPCH, with support from CHEO pediatric palliative care clinicians, has been offering SICG-Peds© training workshops for pediatric healthcare providers for over 5 years, utilizing the necessary adapted guide serious illness in children including considerations for the neonatal intensive care setting, complex care, oncology, and other pediatric specialties.

The overall aim of this project was to explore healthcare provider's experience using the SICG-Peds© in practice, better understand the experience of leading difficult conversations for families and children diagnosed with rare, life-limiting illnesses, and delineate the impact on clinician confidence and practice of using the guide. This started with training the trainers through the Ariadne process and then delivering this education to clinicians in BC and Ontario through in-person or virtual, adult-oriented education.

While this paper specifically explores the quantitative design arm of the study seeking to explore perceived utility of the guide in practice and perceived impact to clinician confidence and knowledge in leading serious illness conversations, the qualitative arm of the study can be found in the paper by Doherty M et al (2022), which sought to explore experiences of pediatric clinicians participating in a serious illness communication program and examine how the communication program supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice. ¹⁶ A full description of the education workshop can also be found in the qualitative research paper by Doherty, M et al (2022). ¹⁶ The quantitative findings were published separately, following publication of the qualitative findings due to constraints and resources at each site related to the COVID-19 pandemic and staffing shortages.

Methods

The reporting of this study confirms the Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0) statement (Supplement 1). ¹⁷

Population and setting

For this study, we included interdisciplinary clinicians from 3 sites in BC and Ontario (BC Children's and Women's Hospitals; CPCH; and CHEO) who care for children with serious illnesses and who attended a 2.5-h training workshop. We excluded clinicians who did not practice at our 3 study sites, did not care for children with serious illnesses, and did not attend a workshop. The workshop provided participants with a template for discussions with parents and family members of their critically ill pediatric patients.

Design

Eight workshops were held in BC and 24 in Ontario in 2017 and 2018. Participants completed surveys before the workshop, after the workshop, and then again at 6 months. Participants reported pre- and post-workshop confidence scores on a scale of 1 to 10, ranging from 1 defined as “not confident at all” to 10 defined as “very confident.” Due to confidentiality, the responses were anonymous and not linked across time points. The surveys were developed by content experts and were based on the Ariadne Labs evaluation form. ¹⁴ See Supplements 2 and 3 for our pre- and post-surveys. The surveys were provided in paper or emailed to participants via REDCap™, a secure web application for building and managing online surveys and databases. The estimated time to complete each survey was 5-15 min. Any completed paper surveys were entered into REDCap™.

Statistical analysis

Descriptive statistics for survey results were compiled by merging the data sets from both study sites. Data were analyzed to assess changes on the confidence scores in initiating/leading a serious illness conversation and in participating as a non-leader in a serious illness conversation after the workshop. Differences between confidence scores in the pre- and immediate post-workshop questionnaires were tested using Wilcoxon rank sum tests. The statistical significance level was set at P < .05. Data analyses were conducted using SAS Statistical Software v9.4™, SAS Institute.

Results

In BC, 134 clinicians answered the pre-workshop survey, 118 answered the post-workshop survey and 15 answered the 6-month post-workshop survey. The respondents from CHEO were 132, 119, and 30, respectively. Among participants completing the surveys, nurses were the largest clinical group (Table 1).

Table 1.

Clinicians by professional role.

PROFESSIONAL ROLE	N (%)
Nurse	86 (32)
Pediatric subspecialist	66 (25)
General pediatrician	55 (21)
Resident/fellow/postgraduate trainee	19 (7)
Allied health	16 (6)
Nurse practitioner/clinical nurse specialist	10 (4)
Social work/counselor	10 (4)
Other physician specialty	3 (1)
Recreation therapist	1 (0)
Total	266 (100)

Participants who did not answer a question were excluded from the data analysis of that question.

Enhanced knowledge

Prior to the workshop taking place, 76.3% (N = 203) of the respondents reported feeling that “Leading a SIC” was the skill they could most improve upon.

The immediate post-workshop survey showed that the training enhanced participants’ knowledge about pediatric SICs in 94.5% of the cases (Figure 1).

Figure 1.

SICG-Peds© workshop enhanced knowledge about pediatric serious illness conversations.

Positive impact on patient care

Most participants gave positive responses in the immediate post-workshop survey when asked to rate, on individual Likert items with a 5-option response format, and their agreement about the impacts of the SICG-Peds© Guide (Figure 2).

Figure 2.

Post-workshop survey on impacts of SICG-Peds© guide.

More than half of respondents (55.9%, 52.8%, and 51.3%, respectively) strongly agreed that the workshop helped them understand patient's values and goals of care, build trusting relationships with patients, and enhance clinical care for patients. While disagreement rates for statements in this question were very low (less than 2% in all cases), it is noteworthy that 9.4% of respondents were neutral and 1.7% disagreed or strongly disagreed that the SICG-Peds© “can be done in a reasonable amount of time.”

Skill/knowledge improvement

The majority of participants completing the immediate post-workshop survey gave positive ratings, on individual 4-point Likert items, about the effectiveness of the workshop in improving several aspects of their skill/knowledge (Figure 3).

Figure 3.

Post-workshop survey on effectiveness of workshop in improving skill/knowledge.

The 3 skills most participants felt the workshop had been very effective in improving were “exploring parent's fears and worries about the serious illness” (60.1%), “assessing parents understanding of the illness” (55.1%), and “assessing parents readiness for information sharing” (54.5%). Conversely, “obtaining advanced directives and scope of treatment orders” and “setting up a time and space for a SIC” were the areas receiving the least positive response with a small number (4.8% and 3.0% of participants, respectively) stating the workshop had not been effective in improving these skills/knowledge.

Increased confidence

Prior to conducting a statistical test, confidence scores were analyzed visually (see Figures 4 and 5). In these figures, we observed a shift to the right in the immediate post-workshop confidence scores, when compared to the pre-workshop confidence scores, suggesting an improvement after the training.

Figure 4.

Pre- and immediate post-workshop confidence scores in initiating/leading a SIC.

Figure 5.

Pre- and immediate post-workshop confidence scores in participating as a non-leader in a SIC.

Participants showed an increase in their perceived confidence in initiating/leading a SIC after the training. Prior to the workshop, the median confidence score in initiating/leading a SIC was 5 (interquartile range [IQR] 3-7), increasing to 7 (IQR 5-8) in the immediate post-workshop survey. The confidence score was significantly higher (P < .0001) in the immediate post-workshop surveys than in the pre-workshop survey.

The median confidence score in participating as a non-leader in a SIC went from 7 (IQR 6-9) in the pre-workshop questionnaire to 8 (IQR 7-9) immediately following the workshop. Participants’ confidence score in participating as a non-leader in a SIC significantly increased (P < .0001) in the immediate post-workshop survey compared to the pre-workshop survey.

Places for improvement

There were a small number of places for improvement across each time point:

Prior to attending the workshop, more training (65.0%), a framework with supporting material (62.4%), and mentorship (62.0%) were the most requested additional supports for assistance with SICG conversations.

Immediately after attending the workshop, most participants expressed wanting further training specifically in making recommendations related to serious illness (60.8%), obtaining advanced directives and scope of treatment orders (59.9%), and sharing prognosis information (55.7%).

At the 6-months post timepoint, only 35.7% of respondents felt prepared to use the guide in practice.

In the immediate post-workshop survey, 154 respondents identified barriers to using the guide in practice. The most commonly identified barrier (N = 58, 37.7%) was a lack of time available in the clinical work setting. Participants acknowledged that the required time and space to hold these conversations were perceived as barriers, while others referred to knowing the actual timing of having these conversations as a barrier. Many also acknowledged the guide will likely save them on time, but initially, time would serve as a barrier as they got used to the guide.

Observations

With each session, the trainers found that they learned from their learners and from the other faculty, which carried forward to the next training and further understanding of the guide and its utility in actual practice.

Discussion

This workshop was developed to improve clinicians’ understanding of the SICG-Peds© and to support them in incorporating this tool into their practice. Our findings show that this training significantly increases clinicians’ confidence in both initiating/leading and participating as a non-leader in serious illness conversations with patients’ families. Clinicians attending the workshop reported that the content enhanced their knowledge and skills with the expectation of improved patient care. It is seen, however, that improved confidence did not necessarily result in clinicians utilizing the guide regularly or consistently in future practice. There are some plausible reasons for this lack of ongoing use. First, exploring family's values, hopes, and worries through a conversation guided by seeking parents’ permission and understanding, is a culture shift in how healthcare settings are structured. Furthermore, clinicians require ongoing mentoring on how to conduct difficult conversations and how to do that focused on listening to patients/families’ values, rather than didactically sharing information. Additionally, a recent scoping review on pediatric ACP identified strategies to support implementation of the practice as requiring more than the presence of an pACP interventional tool, but also ongoing training, mentorship, and defined organizational structures for clinicians to support successful implementation. ¹⁸ Standardized and accessible documentation is also seen as supportive to pACP implementation within an organization, also support by quality improvement. ¹⁸ This is evident in the adult serious illness literature, showing potential impact to culture change when the guide is integrated with process for system change. ¹⁹ Specific supports identified in the qualitative arm of this study, further elaborated in the qualitative paper, also identified access to a digital version of the SICG-Peds©, and conducting training together as a team may further support clinicians to engage in pACP practices. ¹⁶

There is also a growing understanding that the teaching of this conversational guide must include interprofessional clinicians (occupational/physiotherapists, RN, specialty, and general pediatricians) and clinicians with varied experience and expertise (new respiratory therapist and 30-year practicing neonatologist). Therefore, the trainers and master trainers must adapt to the needs of their learners and create a safe learning environment where role-play practice can be utilized with optimal engagement to achieve the goal of eliciting parents/child values (not necessarily coming to a decision). ¹³

Areas of improvement and continued support were more mentoring and training for supporting the guide's use in a clinical setting, which is consistent with what is identified in the literature as supportive. ¹⁸ Furthermore, improvement in early integration for physician training would also be an important aspect to consider because only 7% of identified participants in the workshops described above were trainees. Early integration into training is highlighted in the literature as an opportunity. ²⁰ Since data collection of this study, CPCH has integrated early training into physician residency programs at the university level and fellowship programs at the tertiary level pediatric hospital site, which still requires ongoing evaluation to determine impact to practice. There is also consideration to expand ongoing training to include other modalities, such as simulation training, or multimodalities to capture further learning in communication competencies as outlined in literature. ²¹

Front-line care providers continue to consult the CPCH and CHEO palliative care teams to hold these conversations and are interested in learning to use the SICG-Peds© themselves, demonstrated by ongoing successful enrollment in the SICG-Peds© education training program. As a leader in the field, CPCH and CHEO partners continue to provide workshops to interdisciplinary clinicians using both in-person and virtual education platforms. The organizations offer 8-10 sessions per year with 2 “Train the Trainer” sessions each year, while CPCH is creating a database for learners, trainers, and parent partners. Ongoing evaluation of these workshops continues to be positive, particularly since the addition of family partner facilitators to the faculty to support integration of family lived experience. Expansion into an e-learning module and collaborative simulation trainings with the tertiary pediatric center is underway to support integration.

There are several limitations to this work. The participants included in this study were a convenience sample and thus may not be a representative sample of clinicians. The surveys were each collected in an anonymous fashion, so they were not linked over time between the pre-, post-, and 6-month timepoints; therefore, pre-post analysis for paired data cannot be performed, although the respondents were from the same groups. Additionally, we collected a limited number of long-term surveys: 21% of the immediate post-workshop respondents, so it is difficult to accurately determine the durability of the intervention. Lastly, we did not re-test attendees’ skills at 6 months, which would have served as a better marker of skill retention.

Reflection and documentation of the SICG-Peds© conversation have yielded positive results in terms of evidence of relational care and family-informed recommendation for pACP. ²² Clinicians have commented that it is not more time-consuming than their prior communication practices and it allows for a sensitive and thorough conversation even when fatigued. ¹⁵

Overall the SICG-Peds© is a useful tool to engage with families and support clinicians in providing more sensitive, clearer communication, which in turn enhances pACP. Emerging data suggest that integrating pediatric palliative care early in a child's illness leads to more effective communication, shorter hospitalizations, fewer emergency department visits, and less intensive treatment at the end of life.^1,23 Particularly conversations surrounding ACP for children with medical complexity require a family-centered approach and exploration of clinician and family-identified topics, including values and beliefs, through consistent language and practice. ²⁴ A tool for guiding ACP with pediatric patients, in particular palliative care conversations, has the potential to enhance clinician confidence with initiating these difficult conversations and incorporating important aspects of ACP identified by both clinician and family. It is recommended communication tools are accompanied by ongoing training/education opportunities, mentorship, organizational structures, standardized documentation, and quality improvement for integration of pACP practices. ¹⁸

Conclusion

The workshop and guidelines that comprise the SICG-Peds© toolkit show promise for advancing pACP by improving communication skills between clinicians and patients/families. Early integration of pediatric palliative care leads to benefits for the children accessing these services, via improved communication, less hospitalizations, and more comfort-focused care at the end of life. A family-centered approach through consistent practice and language benefits these children, particularly those with medical complexity. By providing a structured framework for these conversations, and workshops for learning these skills, tools like the SICG-Peds© can directly benefit clinicians as well.