Supportive Care in Cancer

, Volume 20, Issue 2, pp 287–300

Evaluation of a hospital-based cancer information and support centre

Original Article

Abstract

Background

Although information seeking is encouraged by health care professionals as a positive coping strategy evidence suggests information needs of those affected by cancer are not always fully met. In response to the need for novel models of information provision and educational support for people affected by cancer, a hospital-based cancer information and support centre (CISC) was introduced into a tertiary cancer hospital. Professional support is provided by a cancer support nurse (CSN) with the clinical experience of working with cancer patients, whilst peer support is provided by volunteers.

Materials and methods

A survey was developed to ascertain the perceptions and experiences of consumers (users) of a hospital-based CISC. The aim was to understand what information and support patients and families consider important and helpful in order to develop the service to reflect the needs of its users. During a 12-month period 111 surveys were distributed to users of the centre.

Results

Sixty-nine surveys were returned (62.1%). Nearly all visits were motivated by the need to access (58/84.0%) information, indicating an unmet or changing need. The CSN initiated referrals to support services, both internal and community based, for 21 (53.9%) participants with whom there was contact. Contact with the CISC volunteers also resulted in internal or community-based referrals for 15 (32.6%) of participants. Of note, half of the participants (35/50.7%) reported seeking additional information from the internet as a consequence of having visited the CISC and/or having contact with the CSN or volunteer, in contrast to the six (8.7%) who had reported internet use for information prior to their first visit. Participants indicated a desire for the service to provide additional support to enhance self-care capacity and to do so alongside other people affected by cancer.

Conclusions

Our study results support the capacity of a hospital-based CISC to provide a highly valued service that can broaden information options and meet changing information and support needs of people affected by cancer in an ongoing capacity. An experienced, qualified CSN in this setting is ideally positioned to screen for unmet information and support needs and deliver tailored education to support both inpatient and ambulatory care services. Information prescriptions have the potential to provide a ‘directed information seeking approach’ to those who visit a CISC. Through the use of information technology there is scope to develop information and support that expands beyond pamphlets and booklets.

Keywords

Cancer Information Support Information prescription Service delivery 

References

  1. 1.
    Adams E, Boulton M, Watson E (2009) The information needs of partners and family members of cancer patients: a systematic literature review. Patient Educ Couns 77:179–186PubMedCrossRefGoogle Scholar
  2. 2.
    Aranda S, Schofield P, Weih L, Yates P, Milne D, Faulkner R, Voudouris N (2005) Mapping the quality of life and unmet meeds of urban women with metastatic breast cancer. Eur J Cancer Care Engl 14:211–222PubMedCrossRefGoogle Scholar
  3. 3.
    Balmer C (2005) The information requirements of people with cancer. Where to go after the ‘patient information leaflet’? Cancer Nurs 28:36–44PubMedCrossRefGoogle Scholar
  4. 4.
    Butow P, Brindle E, McConnell D, Boakes R, Tattersall M (1998) Information booklets about cancer: factors influencing satisfaction and utilization. Patient Educ Couns 33:129–141PubMedCrossRefGoogle Scholar
  5. 5.
    Chelf JH, Agre P, Axelrod A, Cheney L, Cole DD, Conrad K, Hooper S, Liu I, Mercurio A, Stepan K, Villejo L, Weaver C (2001) Cancer-related patient education: an overview of the last decade of evaluation and research. Oncol Nurs Forum 28:1139–1147PubMedGoogle Scholar
  6. 6.
    Chelf JH, Deshler AMB, Thiemann KMB, Dose AM, Quella SK, Hillman S (2002) Learning and support preferences of adult patients with cancer at a comprehensive cancer centre. Oncol Nurs Forum 29:862–867CrossRefGoogle Scholar
  7. 7.
    Coleman J, Olsen SJ, Sauter PK, Baker D, Hodgin MB, Stanfield C, Emerling A, Hruban RH, Nolan MT (2005) The effect of a frequently asked questions module on a pancreatic cancer web site patient family chat room. Cancer Nurs 28:460–468PubMedCrossRefGoogle Scholar
  8. 8.
    Corner J (2008) For your information…. Nurs Manage 15:12–13Google Scholar
  9. 9.
    Cornwall A, Moore S, Plant H (2008) Embracing technology: patients', family members and nurse specialists' experience of communicating using email. Eur J Oncol Nurs 12:198–208PubMedCrossRefGoogle Scholar
  10. 10.
    Coulter A (2007) Evidence on effectiveness of strategies to improve patients' experience of cancer. Macmillan Cancer Support Cancer Reform Strategy Patient Experience Working Group, Oxford, Picker Institute EuropeGoogle Scholar
  11. 11.
    Coulter A, Ellins J (2007) Effectiveness of strategies for informing, educating and involving patients. BMJ 335:24–27PubMedCrossRefGoogle Scholar
  12. 12.
    Dodson L, Bisnauth R, James N (2008) Information is power. Nurs Manage 15:14–19Google Scholar
  13. 13.
    Fitch M (2000) Supportive care for cancer patients. Hosp Q Summer 3:39–46Google Scholar
  14. 14.
    Foster C, Scott I, Addington-Hall J (2010) Who visits mobile UK services providing cancer information and support in the community? Eur J Cancer Care Engl 19:221–226. doi:10.1111/j.1365-2354.2008.01007 PubMedCrossRefGoogle Scholar
  15. 15.
    Gustafson DH, Hawkins R, Pingree S, Mc Tavish F, Arora NK, Medenhall J, Cella DF, Serlin RC, Apantaku FM, Stewart J, Salner A (2001) Effect of computer support on younger women with breast cancer. J Gen Intern Med 16:435–445PubMedCrossRefGoogle Scholar
  16. 16.
    Hathaway D (1986) Effect of preoperative instruction on postoperative outcomes: a meta-analysis. Nurs Res 35:269–275PubMedCrossRefGoogle Scholar
  17. 17.
    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 19:356–362. doi:10.1016/j.c;on.2007.02.005 CrossRefGoogle Scholar
  18. 18.
    Jefford M, Tattersall MHN (2002) Informing and involving cancer patients in their own care. Lancet Oncol 3:629–637PubMedCrossRefGoogle Scholar
  19. 19.
    Jones MJ, Nyhof-Young J, Friedman A, Catton P (2001) More than just a pamphlet: development of an innovative computer-based education program for cancer patients. Patient Educ Couns 44:271–278PubMedCrossRefGoogle Scholar
  20. 20.
    Lieberman MA, Golant M, Giese-Davis J, Winzlenberg A, Benjamin H, Humphreys K, Kronenwetter C, Russo S, Spiegel D (2003) Electronic support groups for breast carcinoma. Cancer 97:920–925PubMedCrossRefGoogle Scholar
  21. 21.
    Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K (2000) Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 320:909–913. doi:10.1136/bmj.320.7239.909 PubMedCrossRefGoogle Scholar
  22. 22.
    Lillis S, Gibbons V, Lawrenson R (2010) The experience of final year medical students undertaking a general practice run with a distance education component. Rural Remote Health 10:1268PubMedGoogle Scholar
  23. 23.
    Manning DL, Quigley P (2002) Understanding the needs of people using an information service in Northern Ireland. Eur J Cancer Care Engl 11:139–142PubMedCrossRefGoogle Scholar
  24. 24.
    Manning DL, Dickens C (2006) Health literacy: more choice, but do cancer patients have the skills to decide? Eur J Cancer Care Engl 15:448–452PubMedCrossRefGoogle Scholar
  25. 25.
    Manning DL, Dickens C (2007) Cancer information and support centres: fixing the parts cancer drugs cannot reach. Eur J Cancer Care Engl 16:33–38. doi:10.1111/j.1365-2354.2006.00699 PubMedCrossRefGoogle Scholar
  26. 26.
    McCaughan E, McKenna H (2007) Never-ending making sense: towards a substantive theory of the information-seeking behaviour of newly diagnosed cancer patients. J Clin Nurs 16:2096–2104. doi:10.1111/j.1365-2702.2006.01817.x PubMedCrossRefGoogle Scholar
  27. 27.
    McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2010) Predictors of change in unmet supportive care needs in cancer. Psychooncology 19:508–515. doi:10.1002/pon.1604 PubMedCrossRefGoogle Scholar
  28. 28.
    Mills ME, Sullivan K (1999) The importance of information giving for patients newly diagnosed with cancer: a review of the literature. J Clin Nurs 8:631–642PubMedCrossRefGoogle Scholar
  29. 29.
    Mills ME, Davidson R (2002) Cancer patient's sources of information: use and quality issues. Psychooncology 11:371–378. doi:10.1002/pon.584 PubMedCrossRefGoogle Scholar
  30. 30.
    Moody R (2003) Overcoming barriers to delivering information to cancer patients. Br J Nurs 12:1281–1287PubMedGoogle Scholar
  31. 31.
    Morris SM, Thomas C (2001) The carers place in the cancer situation: where does the carer stand in the medical setting? Eur J Cancer Care Engl 10:87–95PubMedCrossRefGoogle Scholar
  32. 32.
    Morris SM, Thomas C (2002) The need to know: informal carers and information. Eur J Cancer Care Engl 11:183–187PubMedCrossRefGoogle Scholar
  33. 33.
    National Breast Cancer Centre and National Cancer Centre Control Initiative (2003) Clinical practice guidelines for the psycho-social care of adults with cancer. National Health and Medical Research, Camperdown N.S.WGoogle Scholar
  34. 34.
    Roberts S, Black C, Todd K (2002) The living with cancer education programme: II. Evaluation of an Australian education and support programme for cancer patients and their family and friends. Eur J Cancer Care Engl 11:280–289PubMedCrossRefGoogle Scholar
  35. 35.
    Roberts S, Schoefield P, Freeman J, Hill D, Akkerman D, Rodger A (2002) Bridging the information and support gap: evaluation of a hospital-based cancer support nurse service. Patient Educ Couns 47:47–55PubMedCrossRefGoogle Scholar
  36. 36.
    Rutten LJF, 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 57:250–261PubMedCrossRefGoogle Scholar
  37. 37.
    Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Cancer 88:226–237PubMedCrossRefGoogle Scholar
  38. 38.
    Schofield P, Jefford M, Carey M, Thomson K, Evans M, Baravelli C, Aranda S (2008) Preparing patients for threatening medical treatments: effects of a chemotherapy educational DVD on anxiety, unmet needs, and self-efficacy. Support Care Cancer 16:37–45PubMedCrossRefGoogle Scholar
  39. 39.
    Schofield P, Diggens J, Charleson C, Marigliani R, Jefford M (2010) Effectively discussing complementary and alternative medicine in a conventional oncology setting: communication recommendations for clinicians. Patient Educ Couns 79:143–151PubMedCrossRefGoogle Scholar
  40. 40.
    Skalla KA, Bakitas M, Furstenberg CT, Ahles T, Henderson JV (2004) Patients' need for information about cancer therapy. Oncol Nurs Forum 31:313–319PubMedCrossRefGoogle Scholar
  41. 41.
    Smith C, Dickens C, Edwards S (2005) Provision of information for cancer patients: an appraisal and review. Eur J Cancer Care Engl 14:282–288PubMedCrossRefGoogle Scholar
  42. 42.
    Sutherland G, Hoey L, White V, Jefford M, Hegarty S (2008) How does a cancer education program impact on people with cancer and their family and friends? J Cancer Educ 23:126–132PubMedCrossRefGoogle Scholar
  43. 43.
    Todd K, Roberts S, Black C (2002) The living with cancer education programme: I. Development of an Australian education and support programme for cancer patients and their family and friends. Eur J Cancer Care Engl 11:280–289PubMedCrossRefGoogle Scholar
  44. 44.
    Walther JB, Pingree S, Hawkins RP, Buller DB (2005) Attributes of interactive online health information systems. J Med Internet Res 7:e33 (http//www.jmir.org/2005/7/e33/ doi:10.2196/jmir.7.3.e33)

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  1. 1.Peter MacCallum Cancer CentreMelbourneAustralia

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