Supportive Care in Cancer

, Volume 26, Issue 1, pp 91–98 | Cite as

Information service in head and neck cancer care—a qualitative study

  • Violet D’SouzaEmail author
  • Maiziel Serrao
  • Erin Watson
  • Elizabeth Blouin
  • Anthony Zeitouni
  • Paul J. Allison
Original Article



We aimed to understand how information was delivered to head and neck (H&N) cancer patients and describe the perceptions of the H&N patients concerning information delivery.


This qualitative investigation was a part of our larger quantitative study that was conducted with H&N cancer patients at two academic hospitals in Montreal. After obtaining the ethical approval, a purposeful sample of participants was recruited from the main study until the content of the information gathered reached saturation. Data were collected by observing the information delivery and interviewing the study participants and Nurse Pivots. All observations and interviews were audiotaped. Data were transcribed verbatim; transcripts were developed, audited, and subjected to a thematic analysis.


Eleven H&N patients participated in the study. We found that the doctors were the main source of information at both hospitals; one hospital delivered information systematically to every patient using a multimedia-based information disseminating tool while the second hospital delivered information verbally in an ad hoc manner. Those who received information using the multimedia tool understood what was said to them and were better prepared for the next step, while those who received information verbally did not retain much, were confused, and expressed dissatisfaction.


Although the doctors were the main source of information, patients experience difficulties in understanding what was said to them. Comprehensive information together with audiovisuals, when provided to H&N cancer patients based on their needs, seems to improve their understanding of their cancer and prepare them for their treatment.


Cancer information Head and neck cancer patients Patients’ perceptions 



We acknowledge the CIHR Strategic Training Initiative in Health Research Program, Faculty of Dentistry-McGill University, Le Réseau de Recherche en Santé Buccodentaire et Osseuse (RSBO), and Alpha Omega Trust for their generous funding. We acknowledge the head and neck cancer teams at the McGill University Health Center and the Jewish General Hospital and the generous participation of the precious time of the head and neck cancer patients.

Compliance with ethical standards

Competing interests

The authors declare that they have no competing interests.


  1. 1.
    Dobrossy L (2005) Epidemiology of head and neck cancer: magnitude of the problem. Cancer Metastasis Rev 24(1):9–17CrossRefGoogle Scholar
  2. 2.
    Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM (2010) Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer 127(12):2893–2917CrossRefGoogle Scholar
  3. 3.
    Llewellyn CD, McGurk M, Weinman J (2007) The relationship between the Patient Generated Index (PGI) and measures of HR-QoL following diagnosis with head and neck cancer: are illness and treatment perceptions determinants of judgment-based outcomes? Br J Health Psychol 12(Pt 3):421–437CrossRefGoogle Scholar
  4. 4.
    Simpson M, Buckman R, Stewart M, Maguire P, Lipkin M, Novack D et al (1991) Doctor-patient communication: the Toronto consensus statement. BMJ 303(6814):1385–1387CrossRefGoogle Scholar
  5. 5.
    van Dulmen S (2011) The value of tailored communication for person-centred outcomes. J Eval Clin Pract 17(2):381–383CrossRefGoogle Scholar
  6. 6.
    Arora NK (2003) Interacting with cancer patients: the significance of physicians’ communication behavior. Soc Sci Med 57(5):791–806CrossRefGoogle Scholar
  7. 7.
    Tattersall MH, Butow PN, Clayton JM (2002) Insights from cancer patient communication research. Hematol Oncol Clin North Am 16(3):731–743CrossRefGoogle Scholar
  8. 8.
    Vardy J, Tannock IF (2004) Quality of cancer care. Ann Oncol 15(7):1001–1006CrossRefGoogle Scholar
  9. 9.
    Mesters I, van den Borne B, De Boer M, Pruyn J (2001) Measuring information needs among cancer patients. Patient Educ Couns 43(3):253–262CrossRefGoogle Scholar
  10. 10.
    Yap TL, Davis LS (2008) Physical activity: the science of health promotion through tailored messages. Rehabil Nurs 33(2):55–62CrossRefGoogle Scholar
  11. 11.
    Ragaccio A, Lombardo A, Garrone P (2007) The quality of preoperative information to head and neck cancer patients: a qualitative study. Assist Inferm Ric 26(4):200–209PubMedGoogle Scholar
  12. 12.
    Evrard AS, Guertin L, Remacle M, Jamart J, Leveque M (2009) Internet information on head and neck oncology in French. Ann Otolaryngol Chir Cervicofac 126(3):99–111CrossRefGoogle Scholar
  13. 13.
    Andreassen S, Randers I, Naslund E, Stockeld D, Mattiasson AC (2005) Family members’ experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer. Eur J Cancer Care (Engl) 14(5):426–434CrossRefGoogle Scholar
  14. 14.
    Basch EM, Thaler HT, Shi W, Yakren S, Schrag D (2004) Use of information resources by patients with cancer and their companions. Cancer 100(11):2476–2483CrossRefGoogle Scholar
  15. 15.
    James N, Daniels H, Rahman R, McConkey C, Derry J, Young A (2007) A study of information seeking by cancer patients and their carers. Clin Oncol (R Coll Radiol) 19(5):356–362CrossRefGoogle Scholar
  16. 16.
    Butow PN, Brown RF, Cogar S, Tattersall MH, Dunn SM (2002) Oncologists’ reactions to cancer patients’ verbal cues. Psychooncology 11(1):47–58CrossRefGoogle Scholar
  17. 17.
    Street RL Jr (1991) Information-giving in medical consultations: the influence of patients’ communicative styles and personal characteristics. Soc Sci Med 32(5):541–548CrossRefGoogle Scholar
  18. 18.
    Rodin G, Mackay JA, Zimmermann C, Mayer C, Howell D, Katz M et al (2009) Clinician-patient communication: a systematic review. Support Care Cancer 17(6):627–644CrossRefGoogle Scholar
  19. 19.
    Wen KY, Gustafson DH (2004) Needs assessment for cancer patients and their families. Health Qual Life Outcomes 2:11CrossRefGoogle Scholar
  20. 20.
    Fujimori M, Uchitomi Y (2009) Preferences of cancer patients regarding communication of bad news: a systematic literature review. Jpn J Clin Oncol 39(4):201–216CrossRefGoogle Scholar
  21. 21.
    Knobf MT (2007) Psychosocial responses in breast cancer survivors. Semin Oncol Nurs 23(1):71–83CrossRefGoogle Scholar
  22. 22.
    Wiljer D, Catton P (2003) Multimedia formats for patient education and health communication: does user preference matter? J Med Internet Res 5(3):e19CrossRefGoogle Scholar
  23. 23.
    Chelf JH, Agre P, Axelrod A, Cheney L, Cole DD, Conrad K et al (2001) Cancer-related patient education: an overview of the last decade of evaluation and research. Oncol Nurs Forum 28(7):1139–1147PubMedGoogle Scholar
  24. 24.
    Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J (2005) Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns 57(3):250–261CrossRefGoogle Scholar
  25. 25.
    D’Souza V, Blouin E, Zeitouni A, Muller K, Allison PJ (2013) An investigation of the effect of tailored information on symptoms of anxiety and depression in head and neck cancer patients. Oral Oncol 49(5):431–437CrossRefGoogle Scholar
  26. 26.
    D’Souza V, Blouin E, Zeitouni A, Muller K, Allison PJ (2013) Do multimedia based information services increase knowledge and satisfaction in head and neck cancer patients? Oral Oncol 49(9):943–949CrossRefGoogle Scholar
  27. 27.
    D’Souza V, Blouin E, Zeitouni A, Muller K, Allison PJ (2016) Multimedia information intervention and its benefits in partners of the head and neck cancer patients. Eur J Cancer Care (Engl)Google Scholar
  28. 28.
    Husserl, E.t.D.C.L.i.N.Y., Humanities PressGoogle Scholar
  29. 29.
    Corbin J, Strauss A (eds) (2008) Basics of Qualitative Research, Techniques and Procedures for Developing Grounded Theory, 3rd edn. Sage Publications, Inc., USAGoogle Scholar
  30. 30.
    Krefting L (1991) Rigor in qualitative research: the assessment of trustworthiness. Am J Occup Ther 45(3):214–222CrossRefGoogle Scholar
  31. 31.
    Burnard P (1991) A method of analysing interview transcripts in qualitative research. Nurse Educ Today 11(6):461–466CrossRefGoogle Scholar
  32. 32.
    Miles MB, Humberman AM (1994) Qualitative data analysis. Sage Publications, Thousand OaksGoogle Scholar
  33. 33.
    Glaser BG (1978) Theoretical sensitivity. Sociology Press, Mill ValleyGoogle Scholar
  34. 34.
    Strauss A, Corbin J (1990) Basics of qualitative research: grounded theory procedures and techniques. Sage Publications, Newbury ParkGoogle Scholar
  35. 35.
    Janiszewska J, Buss T, de Walden-Galuszko K, Majkowicz M, Lichodziejewska-Niemierko M, Modlinska A (2008) The religiousness as a way of coping with anxiety in women with breast cancer at different disease stages. Support Care Cancer 16(12):1361–1366CrossRefGoogle Scholar
  36. 36.
    Newell R, Ziegler L, Stafford N, Lewin RJ (2004) The information needs of head and neck cancer patients prior to surgery. Ann R Coll Surg Engl 86(6):407–410CrossRefGoogle Scholar
  37. 37.
    Krupat E, Fancey M, Cleary PD (2000) Information and its impact on satisfaction among surgical patients. Soc Sci Med 51(12):1817–1825CrossRefGoogle Scholar
  38. 38.
    Fang CY, Longacre ML, Manne SL, Ridge JA, Lango MN, Burtness BA (2012) Informational needs of head and neck cancer patients. Health Technol (Berl) 2(1):57–62CrossRefGoogle Scholar
  39. 39.
    Pollock K, Cox K, Howard P, Wilson E, Moghaddam N (2008) Service user experiences of information delivery after a diagnosis of cancer: a qualitative study. Support Care Cancer 16(8):963–973CrossRefGoogle Scholar
  40. 40.
    Atack L, Luke R, Chien E (2008) Evaluation of patient satisfaction with tailored online patient education information. Comput Inform Nurs 26(5):258–264CrossRefGoogle Scholar
  41. 41.
    Weinman J (1990) Providing written information for patients: psychological considerations. J R Soc Med 83(5):303–305CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany 2017

Authors and Affiliations

  1. 1.Faculty of DentistryMcGill UniversityMontrealCanada
  2. 2.Department of Otolaryngology - Head and Neck SurgeryMcGill University Hospital CenterMontrealCanada

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