Provision of cancer information as a "support for navigating the knowledge landscape": Findings from a critical interpretive literature synthesis

European Journal of Oncology Nursing

Volumn 17, Issue 3, 2013, Pages 360-369

  Kazimierczak, Karolina A ^a   Skea, Zoë C ^a,b   Dixon Woods, Mary ^c   Entwistle, Vikki A ^d   Feldman Stewart, Deb ^e   N'Dow, James M O ^a   MacLennan, Sara J ^a  

^a UNIVERSITY OF ABERDEEN   (United Kingdom)

^b UNIVERSITY OF ABERDEEN   (United Kingdom)

^c UNIVERSITY OF LEICESTER   (United Kingdom)

^d UNIVERSITY OF DUNDEE   (United Kingdom)

^e QUEEN S UNIVERSITY   (Canada)

Author keywords

Critical interpretive synthesis; Healthcare professional patient relationship; Patient engagement; Patient information

Indexed keywords

CANADA; FEMALE; HUMAN; INFORMATION DISSEMINATION; KNOWLEDGE MANAGEMENT; MALE; MEDICAL INFORMATICS; METHODOLOGY; NEOPLASM; PATIENT EDUCATION; QUALITATIVE RESEARCH; REVIEW; STANDARD;

CANADA; FEMALE; HUMANS; INFORMATION DISSEMINATION; KNOWLEDGE MANAGEMENT; MALE; MEDICAL INFORMATICS; NEOPLASMS; PATIENT EDUCATION AS TOPIC; QUALITATIVE RESEARCH;

EID: 84876324246     PISSN: 14623889     EISSN: 15322122     Source Type: Journal    
DOI: 10.1016/j.ejon.2012.10.002     Document Type: Review

References (62)

1. Adams M. Information and education across the phases of cancer care. Seminars in Oncology Nursing 1991, 7(2):105-111.
2. Åsbring P., Närvänen L. Patient power and control: a study of women with uncertain illness trajectories. Qualitative Health Research 2004, 14(2):226-240.
3. Beckjord E.B., Arora N.K., McLaughlin W., Oakley-Girvan I., Hamilton A.S., Hesse B.W. Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. Journal of Cancer Survivorship 2008, 2(3):179-189.
4. Booth K., Beaver K., Kitchener H., O'Neill J., Farrell C. Women's experiences of information, psychological distress and worry after treatment for gynaecological cancer. Patient Education and Counseling 2005, 56(2):225-232.
5. Browall M., Carlsson M., Horvath G.G. Information needs of women with recently diagnosed ovarian cancer: a longitudinal study. European Journal of Oncology Nursing 2004, 8(3):200-207.
6. Burt J., Caelli K., Moore K., Anderson M. Radical prostatectomy: men's experiences and postoperative needs. Journal of Clinical Nursing 2005, 14(7):883-890.
7. Butow P.N., Maclean M., Dunn S.M., Tattersall M.H.N., Boyer M.J. The dynamics of change: cancer patients' preferences for information, involvement and support. Annals of Oncology 1997, 8(9):857-863.
8. Coulter A. The Autonomous Patient: Ending Paternalism in Medical Care 2002, Nuffield Trust, London.
9. Craig R.T. Communication theory as a field. Communication Theory 1999, 9(2):119-161.
10. Daniels H., James N., Rahman R., Young A., Derry J., McConkey C. Learning about cancer. Mind, Culture, and Activity 2007, 14(1, 2):128-141.
11. Department of Health The NHS Cancer Plan: A Plan for Investment, A Plan for Reform 2000, The Stationary Office, London.
12. Department of Health Better Information, Better Choices, Better Health: Putting Information at The Centre of Health 2004, The Stationary Office, London.
13. Department of Health Manual for Cancer Services 2004, The Stationary Office, London.
14. Department of Health The NHS Cancer Plan and the New NHS: Providing A Patient-centred Service 2004, The Stationary Office, London.
15. Dixon A., Dickson N., Coulthard J., Mitra G., Michie S., Coulter A., et al. Engaging Patients in Their Health: How the NHS Needs to Change 2008, The King's Fund, London.
16. Dixon-Woods M. Writing wrongs? An analysis of published discourses about the use of patient information leaflets. Social Science and Medicine 2001, 52(9):1417-1432.
17. Dixon-Woods M., Cavers D., Agarwal S., Annandale E., Arthur A., Harvey J., et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology 2006, 6(1):35.
18. Donaldson L. Expert patients usher in a new era of opportunity for the NHS. British Medical Journal 2003, 326(7402):1279-1280.
19. European Commission Together for Health: A Strategic Approach for The EU 2008-2013 2007, European Commission, Brussells.
20. Fallowfield L. Offering choice of surgical treatment to women with breast cancer. Patient Education and Counseling 1997, 30(3):209-214.
21. Fawzy F.I., Fawzy N.W. A structured psychoeducational intervention for cancer patients. General Hospital Psychiatry 1994, 16(3):149-192.
22. Feldman-Stewart D., Brundage M.D., Nickel J.C., Mackillop W.J. The information required by patients with early-stage prostate cancer in choosing their treatment. BJU International 2001, 87(3):218-223.
23. Feldman-Stewart D., Brennenstuhl S., Brundage M.D. The information needed by Canadian early-stage prostate cancer patients for decision-making: stable over a decade. Patient Education and Counseling 2008, 73(3):437-442.
24. Feldman-Stewart D., Brundage M.D., Hayter C., Groome P., Curtis Nickel J., Downes H., et al. What questions do patients with curable prostate cancer want answered?. Medical Decision Making 2000, 20(1):7-19.
25. Forrest G., Plumb C., Ziebland S., Stein A. Breast cancer in the family: children's perceptions of their mother's cancer and its initial treatment: qualitative study. British Medical Journal 2006, 332(7548):998-1003.
26. Fredette S.L. A model for improving cancer patient education. Cancer Nursing 1990, 13(4):207-215.
27. Green M.C. Narratives and cancer communication. Journal of Communication 2006, 56(Suppl. 1):S163-S183.
28. Greener I. Expert patients and human agency: long-term conditions and Giddens' structuration theory. Social Theory and Health 2008, 6(4):273-290.
29. Hardwick C., Lawson N. The information and learning needs of the caregiving family of the adult patient with cancer. European Journal of Cancer Care 1995, 4(3):118-121.
30. Harris K.A. The informational needs of patients with cancer and their families. Cancer Practice 1998, 6(1):39-46.
31. Heldal F., Tjora A. Making sense of patient expertise. Social Theory and Health 2009, 7(1):1-19.
32. Holman H., Lorig K. Patients as partners in managing chronic disease. British Medical Journal 2000, 320(7234):526-527.
33. Holmström I., Röing M. The relation between patient-centeredness and patient empowerment: a discussion on concepts. Patient Education and Counseling 2010, 79(2):167-172.
34. Janz N.K., Mujahid M.S., Hawley S.T., Griggs J.J., Hamilton A.S., Katz S.J. Racial/ethnic differences in adequacy of information and support for women with breast cancer. Cancer 2008, 113(5):1058-1067.
35. Katz J.E., Rice R.E., Acord S.K. E-health networks and social transformations: expectations of centralization, experiences of decentralization. The Network Society: A Cross-cultural Perspective 2004, 293-318. Edward Elgar, Cheltencham. M. Castells (Ed.).
36. Kennedy V.L., Lloyd-Williams M. Information and communication when a parent has advanced cancer. Journal of Affective Disorders 2009, 114(1-3):149-155.
37. Lupton D. Consumerism, reflexivity and the medical encounter. Social Science and Medicine 1997, 45(3):373-381.
38. Maliski S.L., Connor S., Fink A., Litwin M.S. Information desired and acquired by men with prostate cancer: data from ethnic focus groups. Health Education and Behavior 2006, 33(3):393-409.
39. McCaughan E., McKenna H. Never-ending making sense: towards a substantive theory of the information-seeking behaviour of newly diagnosed cancer patients. Journal of Clinical Nursing 2007, 16(11):2096-2104.
40. Meissner H.I., Anderson D.M., Odenkirchen J.C. Meeting information needs of significant others: use of the cancer information service. Patient Education and Counseling 1990, 15(2):171-179.
41. Mol A. The Logic of Care: Health and The Problem of Patient Choice 2008, Routledge, London.
42. Nanton V., Docherty A., Meystre C., Dale J. Finding a pathway: information and uncertainty along the prostate cancer patient journey. British Journal of Health Psychology 2009, 14:437-458.
43. Ormandy P. Defining information need in health: assimilating complex theories derived from information science. Health Expectations 2011, 14(1):92-104.
44. Padilla G.V., Bulcavage L.M. Theories used in patient/health education. Seminars in Oncology Nursing 1991, 7(2):87-96.
45. Parsons S., Winterbottom A., Cross P., Redding D. The Quality of Patient Engagement and Involvement in Primary Care 2010, The King's Fund, London.
46. Pollock K., Cox K., Howard P., Wilson E., Moghaddam N. Service user experiences of information delivery after a diagnosis of cancer: a qualitative study. Supportive Care in Cancer 2008, 16(8):963-973.
47. Rutten L.J., 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 Education and Counseling 2005, 57(3):250-261.
48. Sherwin S. A relational approach to autonomy in health care. The Politics of Women's Health: Exploring Agency and Autonomy 1998, 19-47. Temple University Press, Philadephia. S. Sherwin (Ed.).
49. Sinfield P., Baker R., Camosso-Stefinovic J., Colman A.M., Tarrant C., Mellon J.K., et al. Men's and carers' experiences of care for prostate cancer: a narrative literature review. Health Expectations 2009, 12(3):301-312.
50. Squiers L., Finney Rutten L.J., Treiman K., Bright M.A., Hesse B. Cancer patients' information needs across the cancer care continuum: evidence from the cancer information service. Journal of Health Communication 2005, 10(Suppl.):34.
51. Stokken R. The patient educated patient: a health-care asset or problem?. Social Theory and Health 2009, 7(2):81-99.
52. Street R.L.J. Active patients as powerful communicators. The New Handbook of Language and Social Psychology 2001, 541-560. Wiley, Chichester. W.P. Robinson, H. Giles, R.L.J. Street (Eds.).
53. Street R.L.J. Mediated consumer-provider communication in cancer care: the empowering potential of new technologies. Patient Education and Counseling 2003, 50(1):99-104.
54. Tritter J. 'Getting to know myself': changing needs and gaining knowledge among people with cancer. The Sociology of Long-term Conditions and Nursing Practice 2009, 151-168. Palgrave, Basingstoke. E. Denny, S. Earle (Eds.).
55. Vogel B.A., Bengel J., Helmes A.W. Information and decision making: patients' needs and experiences in the course of breast cancer treatment. Patient Education and Counseling 2008, 71(1):79-85.
56. Volk R. Innovative information services and products for cancer patients and families: the experience of the Patient Education Resource Center (PERC) at the University of Michigan Comprehensive Cancer Center. Journal of Hospital Librarianship 2002, 2(2):55-63.
57. Weiss, J.B., Lorenzi, N.M., 2005. Online communication and support for cancer patients: a relationship-centric design framework. AMIA Annual Symposium Proceedings, pp. 799-803.
58. Willems D. Managing one's body using self-management techniques: practicing autonomy. Theoretical Medicine and Bioethics 2000, 21(1):23-38.
59. Wood D., Wood H. Vygotsky, tutoring and learning. Oxford Review of Education 1996, 22(1):5-16.
60. Wyke S., Entwistle V., France E., Hunt K., Jepson R., Thompson A., et al. Information for Choice: What People Need, Prefer and Use 2011, NIHR Service Delivery and Organisation Programme.
61. Ziebland S. The importance of being expert: the quest for cancer information on the Internet. Social Science & Medicine 2004, 59(9):1783-1793.
62. Ziebland S., Chapple A., Dumelow C., Evans J., Prinjha S., Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. British Medical Journal 2004, 328(7439):564.