Supportive Care in Cancer

, Volume 16, Issue 8, pp 963–973

Service user experiences of information delivery after a diagnosis of cancer: a qualitative study

  • Kristian Pollock
  • Karen Cox
  • Penny Howard
  • Eleanor Wilson
  • Nima Moghaddam
Original Article

Abstract

Goals of work

This paper presents findings from a qualitative study investigating service users’ experiences of a patient information pathway after a diagnosis of cancer.

Materials and methods

Patients (27) and relatives (20) were recruited from two identified Cancer Network sites representing a pathway that had been information mapped (Lung) and one which had not (Head and Neck). Respondents participated in up to three qualitative interviews in the year after diagnosis.

Main results

The need for information in response to serious health problems has become widely accepted. Providing cancer patients and their carers with high-quality information throughout their care pathway is a policy priority. However, the study findings contribute to a growing body of evidence that far from embracing the active role of “expert patient”, many patients continue to prefer verbal to written information, to trust in health professionals as their primary and preferred source of information, and to be quite cautious and selective about what they want to know about their illness.

Conclusions

Good information is regarded as a prerequisite for informed decision making and a primary means of coping with the stress of illness. However, patient attitudes to information are complex and encompass resistance, ambivalence and indifference, active engagement and interest. The study findings reinforce the need for health professionals to develop competence as skilled communicators, and for efficient local systems of information transfer between service agencies and health professionals as prerequisites for delivery of the timely, tailored and personalized information which patients require.

Keywords

UK Patient information Cancer Qualitative research 

References

  1. 1.
    Beaver K, Luker KA, Owens RG, Leinster SJ, Degner LF, Sloan JA (1996) Treatment decision-making in women newly diagnosed with breast cancer. Cancer Nurs 19:8–19PubMedCrossRefGoogle Scholar
  2. 2.
    Bilodeau BA, Degner LF (1996) Information needs, sources of information, and decisional roles in women with breast cancer. Oncol Nurs Forum 23:691–696PubMedGoogle Scholar
  3. 3.
    Bishop FL, Yardley L (2004) Constructing agency in treatment decisions: negotiating responsibility in cancer. Health 8:465–482PubMedCrossRefGoogle Scholar
  4. 4.
    Burkitt Wright E, Holcombe C, Salmon P (2004) Doctors’ communication of trust, care, and respect in breast cancer: qualitative study. BMJ 328:864–868CrossRefGoogle Scholar
  5. 5.
    Cassileth BR, Zupkis RV, Sutton-Smith K, March V (1980) Information and participation preferences among cancer patients. Ann Intern Med 92:832–836PubMedGoogle Scholar
  6. 6.
    Cohen F, Lazarus RS (1979) Coping with stress in illness. In: Stone GC, Cohen F, Adler NE (eds) Health psychology. Josey Bass, San Fancisco, pp 217–224Google Scholar
  7. 7.
    Coulter A (2002) The autonomous patient, ending paternalism in medical care. The Nuffield Trust, LondonGoogle Scholar
  8. 8.
    Coulter A, Entwistle V, Gilbert D (1998) Informing patients, an assessment of the quality of patient information materials. King’s Fund, LondonGoogle Scholar
  9. 9.
    Cox K, Pollock K, Howard P, Wilson E, Moghaddam N (2006) Evaluating the ‘cancer backup network patient information project 2004–2006’: Users’ experiences of patient information delivery across a cancer network. University of Nottingham, NottinghamGoogle Scholar
  10. 10.
    Darrow SL, Speyer J, Marcus AC, Ter Maat J, Krome D (1998) Coping with cancer: The impact of the cancer information service on patients and significant others. Part 6. Health Commun 3:86–96CrossRefGoogle Scholar
  11. 11.
    Davidson BJ, Gleave ME, Goldenberg SL, Degner LF, Hoffart D, Berkowitz J (2002) Assessing information and decision preferences of men with prostate cancer and their partners. Cancer Nurs 25:42–49CrossRefGoogle Scholar
  12. 12.
    De Haes H (2006) Dilemmas in patient centeredness and shared decision making: a case for vulnerability. Patient Educ Couns 62:291–298PubMedCrossRefGoogle Scholar
  13. 13.
    de Haes H, Koedoot N (2003) Patient centered decision making in palliative cancer treatment: a world of paradoxes. Patient Educ Couns 50:43–49PubMedCrossRefGoogle Scholar
  14. 14.
    Degner LF (1992) Patient participation in treatment decision making. AXON:13–14Google Scholar
  15. 15.
    Dixon-Woods M (2001) Writing wrongs? An analysis of published discourses about the use of patient information leaflets. Soc Sci Med 52:1417–1432PubMedCrossRefGoogle Scholar
  16. 16.
    DOH (2000) The cancer information strategy. Department of Health, LondonGoogle Scholar
  17. 17.
    DOH (2001) The expert patient: a new approach to chronic disease management for the 21st Century. Department of Health, LondonGoogle Scholar
  18. 18.
    DOH (2003) Building on the best: end of life care initiative. Department of Health, LondonGoogle Scholar
  19. 19.
    DOH (2004) Better information, better choices, better health, putting information at the centre of health. Department of Health, LondonGoogle Scholar
  20. 20.
    Donaldson L (2003) Expert patients usher in a new era of opportunity for the NHS. BMJ 326:1279–1280PubMedCrossRefGoogle Scholar
  21. 21.
    Fallowfield L, Ford S, Lewis SE (1994) No news is not good news: information preferences of patients with cancer. Lancet 344:1576PubMedCrossRefGoogle Scholar
  22. 22.
    Gattelari M, Butow PN, Tattersall MHN (2001) Sharing decisions in cancer care. Soc Sci Med 52:1865–1878CrossRefGoogle Scholar
  23. 23.
    Gattelari M, Voigt KJ, Butow PN, Tattersall MHN (2002) When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 20:503–515CrossRefGoogle Scholar
  24. 24.
    Giddens A (1991) Modernity and self-identity, self and society in the late modern age. Polity Press, OxfordGoogle Scholar
  25. 25.
    Hardwick C, Lawson N (1995) The information and learning needs of the caregiving family of the adult patient with cancer. Eur J Cancer Care 4:118–121CrossRefGoogle Scholar
  26. 26.
    Harrison-Woermke DE, Graydon JE (1993) Perceived informational needs of individuals with breast cancer receiving radiation therapy after excisional biopsy and axiliary node dissection. Cancer Nurs 16:449–455PubMedCrossRefGoogle Scholar
  27. 27.
    Henwood F, Wyatt S, Hart A, Smith J (2003) ‘Ignorance is bliss sometimes: constraints on the emergence of the ‘informed patient’ in the changing landscapes of health information. Sociol Health Illn 25:589–607PubMedCrossRefGoogle Scholar
  28. 28.
    Hoff L, Tideflet U, Thaning L, Hermeren G (2007) In the shadow of bad news - Views of patients with acute leukemia, myeloma or lung cancer about information, from diagnosis to cure or death. BMC Palliative Care 6:1–25PubMedCrossRefGoogle Scholar
  29. 29.
    Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:48–51PubMedCrossRefGoogle Scholar
  30. 30.
    Katz SJ, Nissan N, Moyer CA (2004) Crossing the digital divide: evaluating online communication between patients and their providers. American Journal of Managed Care 10:593–598PubMedGoogle Scholar
  31. 31.
    Kenny P, Quine S, Shiell A, Cameron S (1999) Participation in treatment decision-making by women with early stage breast cancer. Health Expect 2:159–168PubMedCrossRefGoogle Scholar
  32. 32.
    Kirk P, Kirk I, Kristjanson LJ (2004) What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 328:1343–1347Google Scholar
  33. 33.
    Leydon GM, Boulton M, Moyhihan C, Jones A, Mossman J, Boudioni M, McPherson K (2000) Cancer patients’ information needs and information seeking behaviour: in depth interview study. BMJ 320:909–913PubMedCrossRefGoogle Scholar
  34. 34.
    Lorig K (2000) Patients as partners in managing chronic disease. BMJ 320:526–527PubMedCrossRefGoogle Scholar
  35. 35.
    Lorig K, Holman H, Sobel D, Laurent D, Gonzalez V, Minor M (1994) Living a healthy life with chronic conditions, self-management of heart disease, arthritis, stroke, diabetes, asthma, bronchitis, emphysema and others. Palo AltoGoogle Scholar
  36. 36.
    Luker KA, Beaver K, Leinster SJ, Owens RG, Degner LF, Sloan JA (1995) The information needs of women newly diagnosed with breast cancer. J Adv Nurs 22:134–141PubMedCrossRefGoogle Scholar
  37. 37.
    Lupton D (1997) Consumerism, reflexivity and the medical encounter. Soc Sci Med 45:373–381PubMedCrossRefGoogle Scholar
  38. 38.
    Meredith C, Symonds P, Webster L, Lamong D, Pyper E, Fallowfield L (1996) Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views. Br Med J 313:724–726Google Scholar
  39. 39.
    Michie S, Rosebert C, Heaversedge J (1996) The effects of different kinds of information on women attending an out-patient breast clinic. Pyschology Health and Medicine 1:285–296CrossRefGoogle Scholar
  40. 40.
    NHSCRD (2000) Informing, communicating and sharing decisions with people who have cancer. Eff Health Care 6:1–8Google Scholar
  41. 41.
    Ridgeway V, Matthews A (1982) Psychological preparation for surgery: a comparison of methods. Br J Clin Psychol 2:271–280Google Scholar
  42. 42.
    Salkeld G, Solomon M, Short L, Butow PN (2004) A matter of trust - patient’s views on decision-making in colorectal cancer. Health Expect 7:104–114PubMedCrossRefGoogle Scholar
  43. 43.
    Slevin ML, Nichols SE, Downer SM, Wilson P, Lister TA (1996) Emotional support for cancer patients: what do patients really want? Br J Cancer 74:1275–1279PubMedGoogle Scholar
  44. 44.
    The A-M (2002) Palliative care and communication, experiences in the clinic. Open University Press, BuckinghamGoogle Scholar
  45. 45.
    The A-M, Hak A, Koeter GH, van der Wal G (2001) Collusion in doctor-patient communication about imminent death: an ethnographic study. West J Med 174:247–253PubMedCrossRefGoogle Scholar
  46. 46.
    Weisman AD (1979) Coping with cancer. McGraw Hill, LondonGoogle Scholar
  47. 47.
    Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L (2004) How the internet affects patients’ experience of cancer: a qualitative study. BMJ 328:564–569PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2007

Authors and Affiliations

  • Kristian Pollock
    • 1
  • Karen Cox
    • 1
  • Penny Howard
    • 1
  • Eleanor Wilson
    • 1
  • Nima Moghaddam
    • 1
  1. 1.School of NursingUniversity of Nottingham, Queen’s Medical CentreNottinghamUK

Personalised recommendations