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
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.
References (39)
- et al.
Psychological responses of patients receiving a diagnosis of cancer
Ann. Oncol.
(2003) - et al.
Development of the Verona coding definitions of emotional sequences to code health providers’ responses (VR-coDES-p) to patient cues and concerns
Patient Educ. Couns.
(2011) - et al.
Patterns in clinicians’ responses to patient emotion in cancer care
Patient Educ. Couns.
(2013) - et al.
Psychosocial issues in adolescents with cancer
Cancer Treat. Rev.
(2007) - et al.
How does communication heal? Pathways linking clinician-patient communication to health outcomes
Patient Educ. Couns.
(2009) How clinician-patient communication contributes to health improvement: modeling pathways from talk to outcome
Patient Educ. Couns.
(2013)- et al.
Coding patient emotional cues and concerns in medical consultations: the Verona coding definitions of emotional sequences (VR-coDES)
Patient Educ. Couns.
(2011) Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research
Patient Educ. Couns.
(2011)- et al.
Chronically ill adolescents’experiences of communicating with doctors: a qualitative study
J. Adolesc. Health
(2003) - et al.
Asking questions during breast cancer consultations: does being alone or being accompanied make a difference?
Eur. J. Oncol. Nurs.
(2014)
Variation in question asking during cancer clinical interactions: a potential source of disparities in access to information
Patient Educ. Couns.
The power of clinicians’ affective communication: how reassurance about non-abandonment can reduce patients’ physiological arousal and increase information recall in bad news consultations. An experimental study using analogue patients
Patient Educ. Couns.
The power of affective communication
Patient Educ. Couns.
Sharing vs. caring—the relative impact of sharing decisions versus managing emotions on patient outcomes
Patient Educ. Couns.
From invincibility to normalcy: coping strategies of young adults during the cancer journey
Palliat. Support. Care
Being a messenger of life-threatening conditions: experiences of pediatric oncologists
Pediatr. Blood Cancer
Cues and concerns by patients in medical consultations: a literature review
Psychol. Bull.
Oncologists’ reactions to cancer patients’ verbal cues
Psychooncology
Fears, uncertainties, and hopes: patient-initiated actions and doctors’ responses during oncology interviews
J. Health Commun.
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