Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer

https://doi.org/10.1016/j.pec.2016.03.028Get rights and content

Highlights

  • AYA patients and family members expressed many emotional cues/concerns.

  • Cues/concerns were responded to with focus on the content and not the emotion.

  • Questions seem to be a way for patients to express cues/concerns.

  • When physicians ask questions the cue/concern is more explicit.

Abstract

Objective

This study aimed to examine how emotional cues/concerns are expressed and responded to in medical consultations with adolescent and young adults (AYA), an understudied patient group, at the time of cancer diagnosis.

Methods

Nine consultations in which AYA patients aged 12–25 years were informed about their cancer diagnosis and treatment plans were audio recorded. Expressions of emotional cues/concerns and physicians’ responses were identified and coded using The Verona Coding Definitions of Emotional Sequences (VR-CoDES).

Results

A total of 135 emotional cues/concerns (range: 2–26, median: 13) were identified. Cues or concerns that were expressed by patients and relatives following questions from physicians were more often explicit than patient-initiated cues/concerns. Questions about medical and practical issues could often be understood as ways of expressing emotional cues. When patients or relatives expressed less explicit verbal cues about underlying concerns, physicians often responded by presenting medical information without commenting on the emotional aspect indicated by the cue.

Conclusion

The communication was dominated by information-giving, but the questions from patients and relatives and their responses to the information often had emotional connotations.

Practice implications

Patients’ requests for information may include an emotional aspect. These preliminary findings should be tested in a larger sample.

Introduction

Being given a cancer diagnosis in a medical consultation will likely evoke negative emotions in any patient [1], particularly in adolescent and young adult (AYA) patients and their affected families. These patients suffer from a potentially fatal disease at a vulnerable developmental stage of life that is not normally associated with severe illness [2]. The delivery of a cancer diagnosis to AYA patients may also evoke emotions in physicians and nurses given the patient’s young age. The age-dependent communication difficulties that are frequently observed in adolescence and young adulthood represent an additional challenge [3].

From research with adult cancer patients and patients with other illnesses, we know that patients often express their emotions indirectly, in terms of hints and cues [4], [5], [6]. Patients’ emotional talk in medical consultations is therefore often referred to as cues and concerns. There are large variations in how providers respond to these cues and concerns, ranging from little or no acknowledgement of emotions to explicit and empathic responses [7], [8]. Zebrack et al. [9] found that AYA cancer patients reported dissatisfaction with care related to communication and information issues and to a perceived lack of health care provider empathy. In a recent study of follow-up consultations after treatment completion, adolescents expressed emotional concerns in 50% of the consultations, and a subgroup expressed many emotional concerns (more than 7) [10].

More knowledge about how AYA patients, family members and health care providers communicate about emotional concerns in consultations at the time of cancer diagnosis could be important for a number of reasons. First, we know that AYA patients often display stronger negative emotions than children or older patients [11], [12]. Further, AYA cancer patients have reported that receiving the cancer diagnosis was particularly emotional [9], [13]. Therefore, physicians and nurses may have to deal with outspoken emotional reactions from patients to the news about the cancer diagnosis and its consequences (Fig. 1).

Second, AYA patients are in a phase of life when they are about to establish independence from their parents [14]. When illness occurs, the AYA patients suddenly become more dependent [12]. For AYA patients to be diagnosed with cancer may put severe strains on close interpersonal relationships [15], and this strain may affect communication about emotional concerns in consultations with AYA patients, their family members and health care personnel.

Third, evidence indicates that the strength and nature of the psychological responses of patients receiving a diagnosis of cancer is associated with the communication strategies of the provider, including responses to patients’ expression of emotional concerns [1]. We know that the way in which providers handle patients’ emotional cues and concerns may affect patients’ wellbeing, for instance by reducing anxiety and promoting positive emotions in times of distress [16], and indirectly affect health outcomes [17], [18]. However, communication about AYA cancer patients’ emotional concerns at the time of cancer diagnosis is rarely studied.

Our research question was therefore: How are the emotional cues and concerns of AYA patients and their family members expressed and responded to in consultations with physicians and nurses at the time of cancer diagnosis?

Section snippets

Design

We report data from an explorative study of audio recorded consultations in which patients were informed about their cancer diagnosis and proposed treatment plan.

Sample and setting

Patients of both sexes were eligible if they were between 12 and 25 years of age at the time of inclusion and were about to be informed about a cancer diagnosis and a subsequent treatment proposal that included chemotherapy. There is no agreed upon age range for AYAs in Norway. The age range was chosen because it coincides with the

Cues and concerns (frequency, types, initiation)

A total of 135 cues/concerns were identified across all nine consultations. The number of cues/concerns in the consultations ranged from 2 to 26 (median: 13) and was not associated with the duration of the consultations (median: 38 min, range: 10–67 min) (p < 0.05, χ2 = 56, DF = 56) (see Table 2).

The distribution of cues/concerns and the subcategories of cues/concerns (i.e., descriptive expressions of emotions (DE) and verbal and nonverbal hints about hidden emotions (VH and NH)) are presented in Table

Nature, frequencies and initiation of cues and concerns

Patients and family members in the current clinical setting (AYA oncology) expressed emotional concerns and frequently expressed less explicit cues to such concerns, with a median of 13 cues or concerns per consultation. This frequency is high compared to other studies of clinical communication in cancer care using VR-CoDES. Heyn et al. studied communication with adult cancer patients within the first year after diagnosis, and reported a mean number of cues/concerns of 3.0 [21]. Vatne et al.

Conflict of interest

There are no conflicts of interest.

Role of funding

The funding sources had no involvement in study design; in the collection, analysis and interpretation of data; in the writing of the report; or in the decision to submit the paper for publication.

I confirm all patient/personal identifiers have been removed or disguised so the patients/persons described are not identifiable and cannot be identified through details of the story.

Acknowledgements

The authors would like to thank the participating patients, parents, oncologists and nurses for giving us the opportunity to study real-time communication in a sensitive clinical situation. Further, we are grateful for the coding of the material that was performed by Knut Ørnes, KØ. Finally, we are also grateful to have had the opportunity to collect our data at Oslo University Hospital.

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