A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members.

PURPOSE Little is known about the emotional concerns expressed by adolescent and young adult (AYA) patients in consultations when a diagnosis of cancer is delivered. Here, we investigated the content of such concerns and how health care providers respond to them. METHOD We audio-recorded nine consultations with AYA cancer patients (ages: 12-25 years) at the time of diagnosis. We have previously identified and coded 135 emotional concerns and the responses to these in the nine consultations using the Verona Coding Definitions of Emotional Sequences (VR-CoDES) framework. Here, we used qualitative content analysis to study these emotional concerns and categorize them according to overarching themes. We then quantitatively explored associations between the themes of the concerns and whether the responses to them varied according to their themes. RESULTS We identified four themes for the content of concerns: "Side-effects/late-effects" (39%), "What happens in the near future/practical aspects" (16%), "Fear" (27%) and "Sadness" (17%) (e. g. crying, sighing or other sounds that expressed sadness). Health care providers' responses did not appear to vary according to the different themes of concerns, but typically consisted of providing medical information. CONCLUSION The content analysis revealed that patients and family members expressed a wide range of emotional concerns. Health care providers tended to respond to the content-aspect of the concerns, but did rarely explicitly acknowledge the affective-aspect of the concerns. The effect of responses to patients' emotional concerns in the important first consultations about the cancer diagnosis and planned treatment should be investigated in future studies.

[1]  U. Hallberg,et al.  Being a messenger of life‐threatening conditions: Experiences of pediatric oncologists , 2010, Pediatric blood & cancer.

[2]  Physician-patient interaction and coping with cancer: the doctor as informer or supporter? , 1997, Journal of cancer education : the official journal of the American Association for Cancer Education.

[3]  P. Butow,et al.  Psychological responses of patients receiving a diagnosis of cancer. , 2003, Annals of oncology : official journal of the European Society for Medical Oncology.

[4]  M. Levetown Communicating With Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information , 2008, Pediatrics.

[5]  Andrea Ferrari,et al.  Adolescent and young adult oncology: an emerging field. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[6]  A. Mehnert,et al.  Psychosocial interventions for adolescents and young adult cancer patients: A systematic review and meta-analysis. , 2015, Critical reviews in oncology/hematology.

[7]  A. Bleyer,et al.  Adolescent and Young Adult (AYA) Oncology in the United States: A Specialty in Its Late Adolescence , 2015, Journal of pediatric hematology/oncology.

[8]  K. Enskär,et al.  Experiences of teenagers and young adults treated for cancer in Sweden. , 2015, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[9]  L. V. van Vliet,et al.  Current state of the art and science of patient-clinician communication in progressive disease: patients' need to know and need to feel known. , 2014, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[10]  L. Del Piccolo,et al.  Asking questions during breast cancer consultations: does being alone or being accompanied make a difference? , 2014, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[11]  A. Finset,et al.  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. , 2016, Patient education and counseling.

[12]  J. Drury Adolescent Communication With Adults In Authority , 2003 .

[13]  L. Fallowfield,et al.  Communicating sad, bad, and difficult news in medicine , 2004, The Lancet.

[14]  A. Hamilton,et al.  Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study , 2012, Journal of Cancer Survivorship.

[15]  Steven D. Schmidt,et al.  Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult , 2012, Cancer.

[16]  Hanneke C J M de Haes,et al.  Development of the Verona coding definitions of emotional sequences to code health providers' responses (VR-CoDES-P) to patient cues and concerns. , 2011, Patient education and counseling.

[17]  G. Quinn,et al.  The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer , 2015, Cancer.

[18]  R. Kravitz,et al.  A pathway linking patient participation in cancer consultations to pain control , 2014, Psycho-Oncology.

[19]  Jay N Giedd,et al.  The teen brain: insights from neuroimaging. , 2008, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[20]  B. Zebrack,et al.  Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis , 2014, Psycho-oncology.

[21]  K. Malterud,et al.  Sample Size in Qualitative Interview Studies , 2016, Qualitative health research.

[22]  Richard L Street,et al.  How clinician-patient communication contributes to health improvement: modeling pathways from talk to outcome. , 2013, Patient education and counseling.

[23]  J. Giese-Davis,et al.  The Age Conundrum: A Scoping Review of Younger Age or Adolescent and Young Adult as a Risk Factor for Clinical Distress, Depression, or Anxiety in Cancer. , 2015, Journal of adolescent and young adult oncology.

[24]  Cornelia M Ruland,et al.  Effects of an interactive tailored patient assessment tool on eliciting and responding to cancer patients' cues and concerns in clinical consultations with physicians and nurses. , 2012, Patient education and counseling.

[25]  L. Joubert,et al.  An Exploratory Study of Oncology Specialists' Understanding of the Preferences of Young People Living With Cancer , 2013, Social work in health care.

[26]  B. Young,et al.  Is communication guidance mistaken? Qualitative study of parent–oncologist communication in childhood cancer , 2013, British Journal of Cancer.

[27]  Ashley Wilder Smith,et al.  “Cancer Sucks,” and Other Ponderings by Adolescent and Young Adult Cancer Survivors , 2014, Journal of psychosocial oncology.

[28]  B. Zebrack,et al.  Psychosocial care of adolescent and young adult patients with cancer and survivors. , 2012, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[29]  J. Bensing,et al.  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. , 2014, Patient education and counseling.

[30]  Bradley C. Love,et al.  Exploring Psychosocial Support Online: A Content Analysis of Messages in an Adolescent and Young Adult Cancer Community , 2012, Cyberpsychology Behav. Soc. Netw..

[31]  R. Frankel,et al.  A model of empathic communication in the medical interview. , 1997, JAMA.

[32]  W. Baile,et al.  SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. , 2000, The oncologist.

[33]  Baukje Miedema,et al.  From “invincibility” to “normalcy”: Coping strategies of young adults during the cancer journey , 2007, Palliative and Supportive Care.

[34]  D. Maynard,et al.  Communication in medical care: Interaction between primary care physicians and patients , 2006 .

[35]  R. Epstein,et al.  How does communication heal? Pathways linking clinician–patient communication to health outcomes , 2022 .

[36]  L. von Essen,et al.  Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer , 2006, Pediatric blood & cancer.

[37]  A. Finset,et al.  Emotional concerns in follow‐up consultations between paediatric oncologists and adolescent survivors: a video‐based observational study , 2014, Psycho-oncology.

[38]  Susan M Sawyer,et al.  Adolescents with a chronic condition: challenges living, challenges treating , 2007, The Lancet.

[39]  B. Zebrack,et al.  Health and supportive care needs of young adult cancer patients and survivors , 2007, Journal of cancer survivorship : research and practice.

[40]  Peter Salmon,et al.  Coding patient emotional cues and concerns in medical consultations: the Verona coding definitions of emotional sequences (VR-CoDES). , 2011, Patient education and counseling.

[41]  L. Verneuil,et al.  Breaking Bad News in Oncology: A Metasynthesis. , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[42]  T. Hare,et al.  The Adolescent Brain , 2008, Annals of the New York Academy of Sciences.

[43]  J. Arnett Adolescence and Emerging Adulthood , 2000 .