Demographic characteristics, call details and psychosocial support needs of the family/friends of someone diagnosed with cancer who access Australian Cancer Council telephone information and support services

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Highlights

  • Audit of the Australian Cancer Council 13 11 20 information and support service: calls from family and friends.

  • The helpline service was less used by men and callers from lower SES backgrounds.

  • Information needs were higher than psychological needs.

  • Few callers found out about the helpline through health care professionals.

  • More education and information about the service to the medical community is needed.

Abstract

Purpose

Community-based cancer organizations provide telephone-based information and support services to assist people diagnosed with cancer and their family/friends. We investigated the demographic characteristics and psychosocial support needs of family/friends who contacted Australian Cancer Council 13 11 20 information and support helplines.

Methods

Data collected on 42,892 family/friends who contacted a 13 11 20 service across Australia from January 2010 to December 2012 were analyzed. Chi-square analysis was used to examine associations between caller groups and reasons for calling, logistic regression to examine age and gender interaction effects.

Results

The majority of calls received were from women (81%) of middle- (40%) and high-socio-economic backgrounds (41%), aged 40–59 years (46%); 52% phoned for information on cancer diagnosis (including early detection, risk factors), 22% on treatment/disease management, and 26% phoned seeking psychological/emotional support. Information on a diagnosis was significantly more often the reason older males called, compared to female callers of any age. Overall, 32% found out about the service through Cancer Council resources or events, 20% from the media, 18% from the internet; 11% from health professionals.

Conclusions

Family/friends of persons diagnosed with cancer have specific information and support needs. This study identifies groups of family/friends to whom the promotion of this service could be targeted. Within Australia and internationally, clinicians and oncology nurses as well as allied health professionals can provide an important role in increasing access to cancer telephone support services to ensure the needs of the family and friends of people affected by cancer are being met.

Section snippets

Background

In 2012, worldwide there were 32.6 million people living with cancer, 14.1 million new cancer cases, and approximately 8.2 million people died from the disease (IARC, 2017). In Australia, almost 385,000 people were living with cancer by the end of 2010 (Cancer Australia, 2017), approximately 130,466 new cancer cases were diagnosed in 2016 (excluding basal and squamous cell carcinomas of the skin), and approximately 46,880 Australians were expected to die from the disease in 2016 (AIHW, 2016).

Data acquisition

Data from Cancer Councils’ National Minimum Dataset (NMD) is collected by six 13 11 20 services across Australia. This process is coordinated by the National 13 11 20 Managers Group. This group comprises state based managers or a designated equivalent from each state, who oversee the collection of the NMD at each service.

Data collection and preparation

We analyzed data collected from calls made by family/friends to the Australian Cancer Council information and support service. In the NMD dataset each call is recorded as an

Contacts to the Cancer Council 13 11 20 service

A total of 202,697 calls were received during the period of January 2010 to December 2012, of which 42,892 (21%) were from family/friends. The number of calls from family/friends received by the 13 11 20 service for the years under investigation are presented in Fig. 1. Further analysis showed that services received approximately fifty-seven calls per day from family/friends during the period of this audit.

Access

The majority of calls (84%) were first contacts, while 16% reported that they had called

Discussion

Cancer Councils are the largest providers of telephone-based cancer information and support in Australia with the 13 11 20 service available across all Australian states and territories. This is the first analysis examining calls made to this service by family/friends of persons with cancer on a national scale in Australia, expanding the international literature on cancer telephone support service utilization by this particular caller group. Over the three years we examined, the cancer

Limitations

We were unable to conduct analysis on cancer stage (e.g. early/localized disease, terminal stage, remission) and cancer type (e.g. breast, prostate, lung, etc.) as these data were not routinely or uniformly collected. Therefore, no associations could be examined between the information and support needs of family/friends who contacted the service and the associated patient's cancer diagnosis. Further, some contacts to the telephone service may have represented more than one call from the same

Conclusion

Australian Cancer Council 13 11 20 information and support services can be easily accessed by the family/friends of people affected by cancer in all areas, even in geographically isolated regions where support services are limited (NRHA, 2012). The caller profile of family/friends who contacted the service were similar to that described internationally, with male callers and those from lower socio-economic backgrounds making less use of the service. Further research is needed to identify

Conflict of interest statement

We wish to confirm that there are no known conflicts of interest associated with this publication. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Acknowledgements

We acknowledge the Cancer Council Supportive Care Committee, Mrs Jo White and Mr Nathan Erickson who kindly provided the data for this analysis from the National Minimal Dataset. We further like to acknowledge A/Prof John Reynolds (Monash University) for his statistical advice and Cancer Council nurses and 13 11 20 managers for collecting the data.

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