From an illusion of certainty into a reality of uncertainty: A longitudinal qualitative study of how people affected by laryngeal cancer use information over time

European Journal of Oncology Nursing

Volumn 23, Issue , 2016, Pages 15-23

  Taylor, Anne ^a   Wells, M ^a   Hubbard, G ^a   Worth, A ^b  

^a UNIVERSITY OF STIRLING   (United Kingdom)

^b WESTERN GENERAL HOSPITAL   (United Kingdom)

Author keywords

Information; Laryngeal cancer; Patient and carer experience; Qualitative methods; Uncertainty

Indexed keywords

ADULT; AGED; CAREGIVER; FEMALE; HUMAN; ILLUSION; LARYNGEAL NEOPLASMS; LONGITUDINAL STUDY; MALE; MIDDLE AGED; PATIENT EDUCATION; PSYCHOLOGY; QUALITATIVE RESEARCH; TIME FACTOR; TREATMENT OUTCOME; UNCERTAINTY; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; FEMALE; HUMANS; ILLUSIONS; LARYNGEAL NEOPLASMS; LONGITUDINAL STUDIES; MALE; MIDDLE AGED; PATIENT EDUCATION AS TOPIC; QUALITATIVE RESEARCH; TIME FACTORS; TREATMENT OUTCOME; UNCERTAINTY;

EID: 84964853795     PISSN: 14623889     EISSN: 15322122     Source Type: Journal    
DOI: 10.1016/j.ejon.2016.03.006     Document Type: Article

References (60)

1. Adams E., Boulton M., Watson E. The information needs of partners and family members of cancer patients: a systematic literature review. Patient Educ. Couns. 2009, 77(2):179-186.
2. Ankem K. Types of information needs among Cancer patients: a systematic review. LIBRES Libr. Inf. Sci. Res. Electron. J. 2006, 15(2).
3. Atkinson J., Kennedy E., Goldsworthy S., Drummond S. Patients' cancer journeys in Kintyre - a qualitative study of the care, support and information needs of people with cancer and their carers. Eur. J. Oncol. Nurs. 2002, 6(2):85-92.
4. Baghi M., Wagenblast J., Hambek M., Radeloff A., Gstoettner W., Scherzed A., Spaenkuch B., Yuan J., Hornung S., Strebhardt K., Knecht R. Demands on caring for relatives of head and neck Cancer patients. Laryngoscope 2007, 117:712-716.
5. Beaver K., Latif S., Williamson S., Procter D., Sheridan J., Heath J., Susnerwala S., Luker K. An exploratory study of the follow-up care needs of patients treated for colorectal cancer. J. Clin. Nurs. 2010, 19:3291-3300.
6. Birchall M., Richardson A., Lee L. Eliciting views of patients with head and neck cancer and carers on professionally derived standards of care. Br. Med. J. 2002, 324:516-519.
7. Calman K.C. Quality of Life in cancer patients - an hypothesis. J. Med. Ethics 1984, 10:124-127.
8. Carlsson M. Cancer patients seeking information from sources outside the health care system. Support. Care Cancer 2000, 8(6):453-457.
9. Cognetti D.M., Weber R.S., Lai S.Y. Head and neck Cancer: an evolving treatment paradigm. Cancer 2008, 113(7 Suppl. l.):1911-1932.
10. Davies L., Rhodes L.A., Grossman D.C., Rosenberg M.C., Stevens D.P. Decision making in head and neck cancer care. Laryngoscope 2010, 120:2434-2445.
11. Department of Health Better Information, Better Choices, Better Health: Putting Information at the Centre of Health 2004, Department of Health, London.
12. Department of Health Improving Outcomes: a Strategy for Cancer 2011, Department of Health.
13. Department of Health Liberating the NHS: an Information Revolution. A Summary of Consultation Responses UK Government 2011.
14. Edwards D. Head and neck cancer services: views of patients, their families and professionals. Br. J. Oral Maxillofac. Surg. 1998, 36:99-102.
15. Entwistle V.A., France E.F., Wyke S., Jepson R., Hunt K., Ziebland S., et al. How information about other people's personal experiences can help with healthcare decision-making: a qualitative study. Patient Educ. Couns. 2011, 85(3):291-298.
16. Eriksson E. Caring for cancer patients: relatives' assessments of received care. Eur. J. Cancer Care 2001, 10:48-55.
17. Eurostat Your Key to European Statistics 2011, accessed at. http://ec.europa.eu/eurostat/help/new-eurostat-website.
18. Feber T. A Qualitative Data Analysis of the Information Needs of Patients Undergoing Treatment for Head and Neck cancer Using Focus Groups 2003, Master's Dissertation, Leeds University.
19. Feltwell A.K., Rees C.E. The information-seeking behaviours of partners of men with prostate cancer: a qualitative pilot study. Patient Educ. Couns. 2004, 54:179-185.
20. Hankins M.C., Llewellyn C.D. Is the Satisfaction with Cancer Information Profile (SCIP) valid for tailoring information for patients with head and neck cancer?. BMC Cancer 2008, 8.
21. Health and Social Care Information Centre 2012 . http://www.hscic.gov.uk/.
22. Hubbard G., Taylor A., Kearney N. Information for People Affected with cancer in Forth Valley 2005, Cancer Care Research Centre, Stirling.
23. ISD Scotland Cancer Statistics. Head and Neck cancer. Cancer of the Larynx: ICD-10 C32 Incidence and Mortality by Deprivation Category Information and Statistics Division 2010, National Health Service Scotland, accessed 25th October 2014. http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Statistics/Head-and-Neck/#summary.
24. Kazimierick K.A., Skea Z.C., Dixon-Woods M., Entwistle V.A., Feldman-Stewart D., N'Dow J., MacLennan S.J. Provision of cancer information as a "support for navigating the knowledge landscape" findings from a critical interpretive literature synthesis. Eur. J. Oncol. Nurs. 2013, 17:360-369.
25. Lang H., France E., Williams B., Humphris G., Wells M. The psychological experience of living with head and neck cancer: a systematic review and meta-synthesis. Psycho-Oncology 2013, 22:2648-2663.
26. Larsson M., Hedelin B., Johansson I., Athlin E. A supportive nursing care clinic: conceptions of patients with head and neck cancer. Eur. J. Oncol. Nurs. 2007, 11:49-59.
27. Lawler M., Le Chevalier T., Murphy M.J., et al. A catalyst for change: the European cancer patient's bill of rights. Oncologist 2014, 10.1634/theoncologist.2013-0452.
28. Lee M.T., Gibson S., Hilari K. Gender differences in health-related quality of life following total laryngectomy. Int. J. Lang. Commun. Disord. 2010, 45(3):287-294. 10.3109/13682820902994218.
29. Leydon G.M., Boulton M., Moynihan C., Jones A., Mossman J., Boudioni M., McPherson K. Cancer patients' information needs and information seeking behaviour: in depth interview study. Br. Med. J. 2000, 320(7239):909-913.
30. Lippmann A. Embodied knowledge and making sense of prenatal diagnosis. J. Genet. Couns. 1999, 8(5):255-274.
31. Llewellyn C.D., McGurk M., Weinman J. Striking the right balance: a qualitative pilot study examining the role of information on the development of expectations in patients treated for head and neck cancer. Psychol. Health Med. 2005, 10(2):180-193.
32. Machtay M., Moughan J., Trotti A., Garden A.S., Weber R.S., Cooper J.S., Forastiere A. Factors associated with severe late toxicity after concurrent chemoradiation for locally advanced head and neck cancer: an RTOG analysis. J. Clin. Oncol. 2008, 26(21). http://jco.ascopubs.org/content/26/21/3582.long.
33. Morris S.M., Thomas C. The need to know: informal carers and information. Eur. J. Cancer Care 2002, 11:183-187.
34. Moore R.J., Chamberlain R.M., Khuri F.R. A qualitative study of head and neck cancer. Support. Care Cancer 2004, 12:338-346.
35. Murray A.M., Sheikh A. Serial interviews for patients with progressive diseases. Lancet 2006, 368:901-902.
36. Newell R., Zeigler L., Stafford N., Lewin R. The information needs of head and neck cancer patients prior to surgery. Ann. R. Coll. Surg. Engl. 2004, 86:407-410.
37. NHS Scotland Cancer in Scotland (April 2014) Information Services Division 2014, NHS National Services Scotland, accessed October 25th 2014. https://isdscotland.scot.nhs.uk/Health-Topics/Cancer/Publications/2014-04-29/Cancer_in_Scotland_summary_m.pdf.
38. Office for National Statistics 2008, accessed at . https://www.ons.gov.uk/.
39. Penner J.L. Psychological care of patients with head and neck cancer. Seminars Oncol. Nurs. 2009, 25(3):231-241.
40. Pollock K., Cox K., Howard P., Wilson E., Moghaddam N. Service user experience of information delivery after a diagnosis of cancer: a qualitative study. Support. Care Cancer 2008, 16:963-973.
41. Quality Health National Cancer Patient Experience Survey 2014 National Report 2014.
42. Rapidis A.D., Scully C. Recent advances in oral oncology. Eur. Oncol. 2009, 5(1):25-28.
43. Richardson A., Addington-Hall J., Amir Z., Foster C., Strak D., Armes J., Brearley S.G., Hodges l., Hook J., Jarret N., Stamataki Z., Scott I., Walker J., Ziegler L., Sharpe M. Knowledge, ignorance and priorities for research in key areas of cancer survivorship: findings from a scoping review. Br. J. Cancer 2011, 105:582-594.
44. Ritchie J., Lewis J. Qualitative Research Practice: a Guide for Social Science Students and Researchers 2006, SAGE Publications, London.
45. Ritchie J., Lewis J. Qualitative data analysis for applied policy research. Analyzing Qualitative Data 1994, Routledge, London. A. Bryman, R.G. Burgess (Eds.).
46. Rogers L.Q., Courneya K.S., Robbins T., Malone J., Seiz A., Koch L., Rao K., Nagarkar M. Physical activity and quality of life in head and neck cancer survivors. Support. Care Cancer 2006, 14:1012-1019.
47. Rogers S.N., El-Sheikha J., Lowe D. The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic. Oral Oncol. 2009, 45(7):555-561.
48. Rutten L.J.F., Arora N.K., Bakos A.D., Aziz N., Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ. Couns. 2005, 57(3):250-261.
49. Scottish Government Better Cancer Care 2008, Scottish Government, Edinburgh.
50. Semple C. The role of the CNS in head and neck oncology. Nurs. Stand. 2001, 15:39-42.
51. Semple C.J., Dunwoody L., Kernohan W.G., McCaughan E., Sullivan K. Changes and challenges to patients' lifestyle patterns following treatment for head and neck cancer. J. Adv. Nurs. 2008, 63(1):85-93.
52. Shea-Budgell M.A., Kostaras X., Myhill K.P., Hgen N.A. Information needs and sources of information for patients during follow-up. Curr. Oncol. 2014, 21(4):165-173.
53. Spencer L., Ritchie J., O'Connor W. Analysis: practices, principles and processes. Qualitative Research Practice: a Guide for Social Science Students and Researchers 2006, 199-218. SAGE Publications, London. J. Ritchie, J. Lewis (Eds.).
54. Taylor L., Tooman T., Wells M. How patients' feedback was used to redesign a head and neck service. Cancer Nurs. Pract. 2014, 13(6):20-26.
55. Timmins F. Exploring the concept of information need. Int. J. Nurs. Stud. 2006, 12:375-381.
56. Verdonck-de Leeuw I.M., Eerenstein S.E., Van der Linden M.H., Kuik D.J., de Bree R., Leemans C.R. Distress in spouses and patients after treatment for head and neck cancer. Laryngoscope 2007, 117:238-241.
57. Wells M. The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment. J. Adv. Nurs. 1998, 28(4):840-848.
58. Wells M., Donnan T.P., Sharp L., Ackland C., Fletcher J., Dewar A.J. A study to evaluate nurse-led on-treatment review for patients undergoing radiotherapy. J. Clin. Nurs. 2007, 17:1428-1439.
59. World Health Organisation: European Health Report 2012: Charting the way to well-being. Available at: . http://www.euro.who.int/en/publications/abstracts/european-health-report-2012-charting-the-way-to-well-being-the.-executive-summary.
60. Ziegler L., Newell R., Stafford N., Lewin R. A literature review of head and neck cancer patients' information needs, experiences and views regarding decision-making. Eur. J. Cancer Care 2004, 13:119-126.