Clinicians' Perspectives on the Functions of Communication in Pediatric Oncology

Abstract

Background: Parents previously identified eight core functions of communication with clinicians in pediatric oncology.

Objective: To determine clinicians' views on communication functions in pediatric oncology.

Design: In 10 focus groups with 59 clinicians at two academic centers, we asked open-ended questions about communication goals and purposes. Then we presented definitions of eight communication functions previously described by parents and explored clinicians' perspectives.

Setting/Subjects: We performed separate focus groups for nurses, nurse practitioners, physicians, and psychosocial professionals.

Measurements: Thematic analysis of focus group transcripts.

Results: Clinicians identified six functions in response to open-ended questions. After reviewing the eight functions described by parents, all clinicians agreed with the framework: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, supporting hope, and providing validation.

Conclusions: Pediatric oncology clinicians corroborated this functional communication framework. Clinicians and researchers can utilize this framework to guide care and research in the future.

Introduction

After a child is diagnosed with cancer, high-quality communication from the medical team is necessary to help parents support their child's care needs. Effective communication can support parental trust,^1,2 self-management,³ and decision making.⁴ Communication and care have also been shown to be interrelated. High-quality communication between families and clinical teams has been linked to improved physical and psychosocial health by minimizing pain and suffering, improving functional ability, increasing emotional well-being, and improving patient satisfaction, motivation, trust, and self-efficacy.^5–9 Effective communication can also support informed decision making and appropriate involvement of the patient in care.^10–12 Communication can also strengthen therapeutic alliances between patients, families, and health care teams.⁵ Furthermore, high-quality communication is considered a standard of psychosocial palliative care for children with cancer and their families.¹³

Previously, we developed a framework comprising eight core functions of communication in pediatric oncology: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, providing validation, and supporting hope.¹⁴ We developed this model through analysis of 80 interviews with parents of children with cancer. This model adapted and expanded the National Cancer Institute's Framework for Patient-Centered Communication in Cancer Care to focus on communication in pediatric oncology.¹⁵

Communication in pediatric oncology is a multidirectional process that can be interpreted differently by each participant. As such, parents and clinicians might identify different communication functions from their experiences. Discordant perspectives between parents and clinicians about the functions of communication could lead to misunderstandings, frustrations, and poorly informed decisions. As such, it is imperative to ensure that parents and clinicians understand each other's values and goals related to communication, similar to other areas of palliative care.^16,17 To enhance our understanding of the applicability of this communication framework in pediatric oncology, we must also discern the perspectives of health care professionals who provide direct care to children with cancer and their families. Herein, we describe clinicians' perspectives on the functions of communication in pediatric oncology.

Materials and Methods

As previously described,¹⁸ we conducted 10 focus groups with 59 participants across two academic centers (Washington University in St. Louis and St. Jude Children's Research Hospital) between December 2019 and February 2020 exploring clinicians' views of communication functions in pediatric oncology. We performed separate focus groups for nurses, nurse practitioners, physicians, and psychosocial professionals (psychologists, social workers, chaplains, child life specialists, and art therapists.) We conducted two or three focus groups per profession to approach thematic saturation.¹⁹ We included four to seven participants in each focus group to promote rich discussion while ensuring speaking opportunities for each participant.¹⁹ We purposively sampled for age, level of experience, and expertise within subfields of oncology. Focus groups occurred in person, were audio-recorded, and were professionally transcribed. Neither the moderators nor note-takers had relationships with participants. Participants completed a demographic survey and received $75 gift certificates. Institutional review boards at each site approved this study.

In focus groups, we first asked clinicians open-ended questions about what they aimed to achieve when communicating with parents. We then shared a handout with the eight communication functions and definitions derived from parent interviews, asking for clinicians' thoughts about the functions. We employed content analysis^20,21 using the eight previously published functions and definitions¹⁴ as an a priori coding framework. We remained open to novel functions not previously identified in parent interviews. Two authors (B.A.S. and G.L.S.) performed iterative consensus coding using Dedoose software. In iterative cycles, B.A.S. and G.L.S. independently coded two to three focus group transcripts, reviewed the other's application of codes, marked disagreements, then resolved all disagreements through discussion. This process was repeated for all transcripts.

Results

Characteristics of participants are listed in Table 1. When asked open-ended questions about their goals while communicating with parents in pediatric oncology, clinicians described six communication functions from our a priori framework: building relationships, enabling family self-management, exchanging information, making decisions, providing validation, and responding to emotions (Table 2). Although five of the functions were identified by all professions, only physicians initially identified “making decisions.” Clinicians did not initially identify two functions that had been identified by parents: managing uncertainty and supporting hope (Table 3). After reviewing the definitions of the eight functions, however, participants of all focus groups voiced agreement with the listed functions. A nurse, for example, commented: “I feel like I can see a parent in every one of these functions.” A nurse practitioner commented: “I think these are all very true. They seem like very point-on about what I've seen in my practice and how parents want to be spoken to and what they're looking for.” Several participants expressed that none of the functions were surprising. “Not surprised by these.” [Physician] “The very first thing I noticed is a lot of these things we said.” [Nurse Practitioner] “Nothing surprises me. I love that we hit a lot of them.” [Psychosocial professional]

Table 1.

Characteristics of Participants

Participant characteristics (N = 59)	n (%)
Gender	50 Female (85%) 9 Male (15%)
Age (mean, SD)a	M = 40.1 years, SD = 10.2
Location	20 (34%)
WUSTL
St. Jude	39 (66%)
Professional role
Nurse	10 (17%)
Nurse practitioner	18 (30%)
Physician	17 (29%)
Psychologist	3 (5%)
Social worker	4 (7%)
Child life specialist	3 (5%)
Chaplain	3 (5%)
Art therapist	1 (2%)
Years in practice (mean, SD)a	M = 7.9 years, SD = 5.8
Race
White	51 (86%)
Black/African American	4 (7%)
Asian	4 (7%)
Ethnicity
Hispanic	2 (3%)
Non-Hispanic	57 (97%)

SD, standard deviation.

Table 2.

Communication Functions Initially Identified by Clinicians in Focus Groups

Communication function	Definition	Excerpt
Building relationships	Healing relationships provide emotional support, guidance, and understanding. Such relationships are built in trust, rapport, and mutual understanding of each other's roles and responsibilities. Clinicians can facilitate a healing relationship by engaging in partnership building, eliciting goals and values of the patient and family, and displaying warmth and empathy in communication.	“I think all that builds trust, so the more we communicate with them, the more they trust us and what we're doing and why we're doing it.” [Nurse Practitioner]
		“I think another part of good communication is on a personal level of being able to establish comfort with the family or the patient.” [Physician]
Enabling family self-management	Parents must manage complex medical, logistic, and emotional challenges within their families. Communication that enables parents to address these ongoing challenges can support family self-management.	“I think in oncology I feel like we're unique in that our parents are faced with these horrific diagnoses, but we also teach them and ask them to be a nurse basically. Their learning curve is straight up in the air, and they've just been told their child has cancer. A week later they're learning how to flush a central line.” [Nurse]
		“I think it also helps them to plan. For some people it's planning for my day. Is this a day that I can maybe leave and take a nap and get a shower or do something with my other child or my spouse? Is this a time where I need to stay here and prepare for something, an outcome that may not be the greatest? Is it time to celebrate? It gives them time to plan.” [Nurse Practitioner]
Exchanging information	Parents seek information about the cause, diagnosis, treatment, prognosis, and lasting effects of cancer and its treatment. Fulfilling information needs not only helps families to gain important knowledge about a child's illness but also aids the development of a strong clinician–family relationship and supports decision making, among other outcomes. Patients and families also have information that they want to share with the clinicians, so exchanging information seeks a bidirectional understanding between clinicians and families.	“I think good communication entails understanding and comprehension of what is actually happening in front of them, making sure that they're absorbing it and maybe not understanding all the basic science that goes into it, but the level of clinical severity that they're dealing with is a big part for me.” [Physician]
		“I think that really helps, especially when you are communicating information that may be more complex, to take the time as a team to try to coordinate so that you all are on the same page and are providing a message that's very clear and consistent to families. I think that helps.” [Psychosocial Professional]
Providing validation	Many parents doubt their quality as a parent or feel a sense of guilt or shame when their child has cancer. Effective communication can validate current experiences and concerns of the parent while also reaffirming their role in the treatment of their child.	“Helping them advocate for their child. Just knowing that they can ask the questions. They're not inconveniencing anyone.” [Nurse Practitioner]
		“My goal in communication is to help a parent feel like they're being a good advocate for their child and a good partner in their child's care.” [Physician]
Responding to emotions	Parents can experience a range of emotions, including fear, sadness, anger, anxiety, and depression. Effective communication can respond to emotions that are apparent or anticipate emotional responses likely to develop.	“Maybe supporting them emotionally by how you respond and how you answer their questions.” [Nurse Practitioner]
		“If they're just flat and they just don't really wanna hear it, then okay, then they're not ready for this conversation. You just have to come back.” [Nurse]
Making decisions	Effective decision making requires effective communication. Such communication can support decision making in a number of ways: raising the clinician's awareness of the family's needs, values, and fears; clarifying clinical reasoning and treatment options; and alerting the clinician to the family's preferred role in decision making. At other times, decisions might be presented by the clinician as strong recommendations.	“I think a big aspect is empowering the parents knowing that they've got to say, actually, they're the decision makers and my job isn't to paternalistically pick the trial for them, but my job is to arm them with information enough that they can pick what they think is best for their child.” [Physician]
		“Give them information that I hope helps keep away decisional regret at any point during the course of their care and so when we talk about having alternatives, the point of talking about alternatives to any given care or any given choice that we make is to explain the rationale for what we're choosing, or offering and advocating as the first choice.” [Physician]

Table 3.

Initial Identification of Communication Function by Discipline

Discipline	Communication function
	Building relationships	Exchanging information	Providing validation	Enabling family self-management	Responding to emotions	Making decisions	Managing uncertainty	Supporting hope
Physician	X	X	X	X	X	X
Nurse practitioner	X	X	X	X	X
Nurse	X	X	X	X	X
Psychosocial professional	X	X	X	X	X

Bold X indicates that this clinician group identified this communication function in response to open-ended questions about communication.

Clinicians described how several functions were central to their professional roles: “My initial reaction is this is most of what we do every single day from the time we get here till the time we go home. Often after we're even at home, we're still navigating some of this. This is what we hear from families on a daily basis.” [Psychosocial professional] Another psychosocial professional commented: “I feel like as a social worker, responding to emotions, providing validation, we're doing that on a daily basis with the work that we do with families.” A physician felt similarly about exchanging information: “I think the informational exchange is probably the easiest because it is, at the base, what we do.”

Several clinicians described an interrelationship between communication functions. A physician noted: “Most of these things are really interconnected.” Another physician expanded on this idea: “You can't [enable family self-management] without this decision making, managing uncertainty, responding to emotions, providing validation, and building relationships.” No clinicians identified core functions outside of the a priori framework.

Discussion

Clinicians from multiple professions agreed with the framework of eight communication functions that we previously developed from interviews with parents. No clinicians expressed disagreement with any listed functions, nor did they identify novel functions. Furthermore, several clinicians described how certain functions were central to their professional role and identity, and they reinforced our prior finding that these functions are interconnected and interdependent.¹⁴ This concordance between parents in our prior study¹⁴ and clinicians in this study lends further validity to this communication framework. Furthermore, this concordance demonstrates that clinicians and parents are striving for similar goals in communication. Although we know communication can break down, these shared underlying interests and goals create a foundation from which to improve communication experiences for families. Future studies should also assess the perspectives of pediatric and adolescent patients themselves.

Clinicians did not initially identify two communication functions: managing uncertainty and supporting hope. These two functions are inextricably linked, because hope is related to an unknown future. This finding could suggest that clinicians do not fully appreciate the role of hope and uncertainty for parents, or that clinicians do not feel comfortable fulfilling these functions. Hope and uncertainty are two functions that clinicians seem to have the least control over. Clinicians might not be able to easily “fix” problems related to hope and uncertainty, because they cannot predict the future. Thus, clinicians might have difficulty with knowing how to address uncertainty and hope in ways that are honest, nuanced, and supportive.

This framework could serve as a tool to support clinicians in their communication practices. Knowledge of these functions could help clinicians to be more intentional in planning communication strategies. Before entering conversations, especially difficult conversations, clinicians might devise strategies and language to fulfill these communication goals. Structured approaches to communication, such as the SPIKES protocol, could support this planning.²² Knowledge of these functions might also raise the clinician's sensitivity to the importance of responding to emotions. The NURSE mnemonic could guide these responses to emotions: Name, Understand, Respect, Support, and Explore .^23–26 By understanding the importance of managing uncertainty, clinicians might help the family develop more explicit plans that account for multiple contingencies. Awareness of the importance of providing validation might encourage clinicians to explore and affirm the parents' “good parenting” beliefs.^27–31 Finally, this framework could support team-based communication by allowing clinicians to reflect on their areas of strength and weakness in communication and their professional scope.

This framework could also support communication researchers as they develop research agendas in the future. Some of these communication functions lack validated measures to assess their fulfillment. For example, no validated measure currently exists for “providing validation.” By developing and administering measures of these different functions, researchers could identify areas of greatest deficiency in communication. Such a needs assessment could inform the development and targeting of future communication interventions.

This study should be interpreted in light of limitations. Participants were predominantly white women, and we did not include trainees or palliative care professionals. Also, social desirability and hierarchy could prevent some individuals in focus groups from sharing personal thoughts. As such, some participants might have felt pressured to agree with the functions indicated by parents. Furthermore, we did not ask clinicians if they practiced clinical palliative care or if they had prior communication training. Finally, this study was performed at two large academic medical centers, it is possible that clinicians at smaller or nonacademic centers might identify other functions.

Conclusion

Clinicians from multiple disciplines within pediatric oncology corroborated this framework of eight communication functions. Several clinicians indicated that fulfilling certain functions was central to their professional role and identity. This framework of communication functions could inform future communication training and the development of communication tools and interventions in pediatric oncology.

Authors' Contributions

All authors have contributed significantly to this article, and all authors have reviewed and agree with the final submission.

Funding Information

This study was supported by the American Society of Clinical Oncology—Conquer Cancer Foundation [Young Investigator Award], and by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number [UL1 TR002345].

Author Disclosure Statement

No competing financial interests exist. The authors have no financial relationships relevant to this article to disclose.