Skip to main content
Top
Published in: Supportive Care in Cancer 11/2012

Open Access 01-11-2012 | Original Article

On-line information and support for supporters and carers of haematological cancer patients: is access an issue?

Authors: Christine L. Paul, Tara Clinton-McHarg, Marita Lynagh, Robert W. Sanson-Fisher, Flora Tzelepis

Published in: Supportive Care in Cancer | Issue 11/2012

Login to get access

Abstract

Purpose

This study aimed to assess levels of internet access, likelihood of using various sources of information or support, and sociodemographic characteristics related to high internet access among support persons of haematological cancer patients.

Methods

A cross-sectional sample of haematological cancer survivors was recruited via a state cancer registry in Australia. Participating survivors invited their support persons to complete a survey. Of the 268 survivors, 68% had a support person return a survey. Approximately 80% of support persons reported having internet access.

Results

Almost three quarters (74%) reported having ‘high’ access. Support persons reported their likelihood of using internet-based forms of information and support (59% and 26%, respectively) was lower than for other sources, including those delivered face-to-face (80% and 75%) or through print (87% and 70%). Participants who were older or had less education were less likely to report a high level of internet access or likelihood of using web-based sources.

Conclusions

The results demonstrate the need to continue to provide information and support via multiple modes. Support persons who potentially are more vulnerable due to age and lower education are the least likely to use internet-based options. Consequently, these groups may require alternatives, including face-to-face or print-based information and support.
Literature
1.
go back to reference Australian Institute of Health and Welfare (AIHW) & Australasian Association of Cancer Registries (2010) Cancer in Australia: an overview, 2010. AIHW, Canberra Australian Institute of Health and Welfare (AIHW) & Australasian Association of Cancer Registries (2010) Cancer in Australia: an overview, 2010. AIHW, Canberra
2.
go back to reference Office for National Statistics (2011) Cancer: increase in newly diagnosed cases. Office for National Statistics, London Office for National Statistics (2011) Cancer: increase in newly diagnosed cases. Office for National Statistics, London
3.
go back to reference American Cancer Society (2011) Cancer facts and figures 2011. American Cancer Society, Atlanta American Cancer Society (2011) Cancer facts and figures 2011. American Cancer Society, Atlanta
4.
go back to reference Carlson LE, Angen M, Cullum J et al (2004) High levels of untreated distress and fatigue in cancer patients. Brit J Cancer 90:2297–2304PubMed Carlson LE, Angen M, Cullum J et al (2004) High levels of untreated distress and fatigue in cancer patients. Brit J Cancer 90:2297–2304PubMed
5.
go back to reference Leader A, Lishner M, Michaeli J, Revel A (2011) Fertility considerations and preservation in haemato-oncology patients undergoing treatment. Brit J Haematol 153:291–308CrossRef Leader A, Lishner M, Michaeli J, Revel A (2011) Fertility considerations and preservation in haemato-oncology patients undergoing treatment. Brit J Haematol 153:291–308CrossRef
6.
go back to reference Schover LR (2005) Sexuality and fertility after cancer. Hematol 2005:523–527CrossRef Schover LR (2005) Sexuality and fertility after cancer. Hematol 2005:523–527CrossRef
7.
go back to reference Given B, Given CW, Kozachik S, Rawl S (2003) Family caregiving interventions in cancer care. In: Given C, Given GB, Kozachik S, Devoss S (eds) Evidence-based cancer care and prevention: behavioural interventions. Springer, New York Given B, Given CW, Kozachik S, Rawl S (2003) Family caregiving interventions in cancer care. In: Given C, Given GB, Kozachik S, Devoss S (eds) Evidence-based cancer care and prevention: behavioural interventions. Springer, New York
8.
go back to reference Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncol 19:1013–1025 Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncol 19:1013–1025
9.
go back to reference Gaugler JE, Linder J, Given CW, Kataria R, Tucker G, Regine WF (2009) Family cancer caregiving and negative outcomes: the direct and mediational effects of psychosocial resources. J Fam Nurs 15:417–444PubMedCrossRef Gaugler JE, Linder J, Given CW, Kataria R, Tucker G, Regine WF (2009) Family cancer caregiving and negative outcomes: the direct and mediational effects of psychosocial resources. J Fam Nurs 15:417–444PubMedCrossRef
10.
go back to reference Crowe H, Costello AJ (2003) Prostate cancer: perspectives on quality of life and impact of treatment on patients and their partners. Urol Nurs 23:279–285PubMed Crowe H, Costello AJ (2003) Prostate cancer: perspectives on quality of life and impact of treatment on patients and their partners. Urol Nurs 23:279–285PubMed
11.
go back to reference Gaston-Johansson F, Lachica EM, Fall-Dickson JM, Kennedy MJ (2004) Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum 31:1161–1169PubMedCrossRef Gaston-Johansson F, Lachica EM, Fall-Dickson JM, Kennedy MJ (2004) Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum 31:1161–1169PubMedCrossRef
12.
go back to reference Gozum S, Ackay D (2005) Response to the needs of Turkish chemotherapy patients and their families. Cancer Nurs 28:469–475PubMedCrossRef Gozum S, Ackay D (2005) Response to the needs of Turkish chemotherapy patients and their families. Cancer Nurs 28:469–475PubMedCrossRef
13.
go back to reference Senate Community Affairs References Committee Secretariat (2005) The cancer journey: informing choice. Senate Printing Unit, Canberra Senate Community Affairs References Committee Secretariat (2005) The cancer journey: informing choice. Senate Printing Unit, Canberra
14.
go back to reference Tomayo GJ, Broxson A, Munsell M, Cohen MZ (2010) Caring for the caregiver. Oncol Nurs Forum 37:E50–E57CrossRef Tomayo GJ, Broxson A, Munsell M, Cohen MZ (2010) Caring for the caregiver. Oncol Nurs Forum 37:E50–E57CrossRef
15.
go back to reference McGrath P (1998) Relocation for treatment for leukaemia: a description of need. Aust Health Rev 21:143–154PubMedCrossRef McGrath P (1998) Relocation for treatment for leukaemia: a description of need. Aust Health Rev 21:143–154PubMedCrossRef
16.
go back to reference Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psycho-Oncol 20:88–97CrossRef Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psycho-Oncol 20:88–97CrossRef
17.
go back to reference Australian Bureau of Statistics (2009) 8146.0 - Household Use of Information Technology, Australia, 2008-09. ABS, Canberra Australian Bureau of Statistics (2009) 8146.0 - Household Use of Information Technology, Australia, 2008-09. ABS, Canberra
18.
go back to reference United States (US) Census Bureau (2010) Current population survey (appendix A). US Department of Commerce, Washington United States (US) Census Bureau (2010) Current population survey (appendix A). US Department of Commerce, Washington
19.
go back to reference Newnham GM, Burns WI, Snyder RD et al (2006) Information from the internet: attitudes of Australian oncology patients. Internal Med 36:718–723CrossRef Newnham GM, Burns WI, Snyder RD et al (2006) Information from the internet: attitudes of Australian oncology patients. Internal Med 36:718–723CrossRef
20.
go back to reference Australian Bureau of Statistics (2007) 8146.0.55.001—Patterns of internet access in Australia, 2006. ABS, Canberra Australian Bureau of Statistics (2007) 8146.0.55.001—Patterns of internet access in Australia, 2006. ABS, Canberra
21.
go back to reference Cancer Council New South Wales (2011) Cancer Council Hotline Enquiry. Cancer Council NSW, Sydney Cancer Council New South Wales (2011) Cancer Council Hotline Enquiry. Cancer Council NSW, Sydney
22.
go back to reference Curtin J (2001) A digital divide in rural and regional Australia? Information and Research Search Services, Department of the Parliament Library, Canberra. Curtin J (2001) A digital divide in rural and regional Australia? Information and Research Search Services, Department of the Parliament Library, Canberra.
23.
go back to reference Australian Bureau of Statistics (2003) Australian Standard Geographical Classification (ASGC) Remoteness Classification: Purpose and Use. ABS, Canberra Australian Bureau of Statistics (2003) Australian Standard Geographical Classification (ASGC) Remoteness Classification: Purpose and Use. ABS, Canberra
24.
go back to reference Vinson T (1999) Unequal in life: the distribution of social disadvantage in Victoria and New South Wales. Jesuit Social Services, Richmond Vinson T (1999) Unequal in life: the distribution of social disadvantage in Victoria and New South Wales. Jesuit Social Services, Richmond
25.
go back to reference Australian Bureau of Statistics (2003) General social survey: summary results. Australian Bureau of Statistics, Canberra Australian Bureau of Statistics (2003) General social survey: summary results. Australian Bureau of Statistics, Canberra
26.
go back to reference World Health Organisation (1998) Social determinants of health: the solid facts. Centre for Urban Health, Copenhagen World Health Organisation (1998) Social determinants of health: the solid facts. Centre for Urban Health, Copenhagen
27.
go back to reference Perocchia RS, Rapkin B, Hodorowski JK, Davis NL, Mcfarlane AR, Carpenter R (2005) Raising awareness of on-line cancer information: helping providers empower patients. J Health Commun 10:157–172PubMedCrossRef Perocchia RS, Rapkin B, Hodorowski JK, Davis NL, Mcfarlane AR, Carpenter R (2005) Raising awareness of on-line cancer information: helping providers empower patients. J Health Commun 10:157–172PubMedCrossRef
Metadata
Title
On-line information and support for supporters and carers of haematological cancer patients: is access an issue?
Authors
Christine L. Paul
Tara Clinton-McHarg
Marita Lynagh
Robert W. Sanson-Fisher
Flora Tzelepis
Publication date
01-11-2012
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 11/2012
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-012-1388-9

Other articles of this Issue 11/2012

Supportive Care in Cancer 11/2012 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine