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A telephone outcall program to support caregivers of people diagnosed with cancer: utility, changes in levels of distress, and unmet needs

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Abstract

Purpose

To evaluate the utility of a telephone outcall program for cancer caregivers and to examine longitudinal changes in their distress levels and supportive care needs.

Methods

As part of the PROTECT trial, caregivers assigned to the intervention arm (N = 108) received three telephone outcalls from a Cancer Council 13 11 20 nurse at three time points (7–10 days post-randomization, 1 and 4 months later). During each call, caregivers were screened for distress using the Distress Thermometer (range: 0–10) then six supportive care issues were raised for discussion. Participants completed a utility survey 1 month post-intervention.

Results

The outcall program was highly acceptable and perceived as beneficial by caregivers. Overall, 95% reported it was worth their time to take part in the outcall program and 82% stated that the program was very relevant to them. Level of distress and impact of distress decreased over time (p = 0.0031, p < 0.0001, respectively). Average call duration decreased over time (p < 0.0001) and was longer for female than male caregivers (p = 0.0009). The frequency of caregivers discussing issues related to psychological distress (p = 0.0003), health literacy (p < 0.0001), financial (p = 0.0014), and practical concerns (p = 0.0121) decreased over time. Psychological distress was more often discussed by female than male caregivers (p = 0.0153), and family issues more often by younger (< 55 years) than older caregivers (p = 0.0071).

Conclusions

Utility of this outcall program was high. Caregivers’ level of distress and unmet needs decreased over time. Gender and age differences emerged, which warrants the need for tailored support. Further research is necessary to identify the best method of improving access to 13 11 20 services for caregivers.

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Acknowledgements

We would like to acknowledge the effort of 13 11 20 nurses at Cancer Council South Australia and Cancer Council Victoria who delivered the outcall program to our study participants and of personnel involved in the recruitment of eligible dyads (Pam Adelson, Kath Colvin, and Stephanie Cowdery).

Funding

This study has been funded by the National Health and Medical Research Council (ID: GNT1044400 RM24525).

Author information

Authors and Affiliations

  1. Faculty of Health, School of Nursing and Midwifery, Deakin University, Geelong, VIC, 3220, Australia

    Leila Heckel

  2. Cancer Council SA, 202 Greenhill Road, Eastwood, South Australia, 5063, Australia

    Kate M. Fennell & Monica Byrnes

  3. Flinders Centre for Innovation in Cancer, School of Medicine, Flinders University, Sturt Road, Bedford Park, South Australia, 5042, Australia

    Kate M. Fennell

  4. Sansom Institute for Health Research, University of South Australia, City East Campus, North Terrace, Adelaide, South Australia, 5000, Australia

    Kate M. Fennell

  5. Faculty of Health, Biostatistics Unit, Deakin University, Geelong, VIC, 3220, Australia

    Liliana Orellana

  6. Cancer Council Victoria, 615 St Kilda Road, Melbourne, VIC, 3004, Australia

    Anna Boltong

  7. Melbourne School of Health Sciences, The University of Melbourne, Grattan Street, Parkville, VIC, 3010, Australia

    Anna Boltong

  8. Faculty of Health, Deakin University, Geelong, VIC, 3220, Australia

    Patricia M. Livingston

Authors
  1. Leila Heckel
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  2. Kate M. Fennell
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Corresponding author

Correspondence to Leila Heckel.

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Conflict of interest

The authors declare that they have no competing interests.

Ethical approval and informed consent

The study was in accordance with the Declaration of Helsinki. Ethics approval was obtained from the Deakin University Human Research Ethics Committee (2012–083), the participating health services, and Cancer Councils. Informed consent was obtained from all individual participants included in the study.

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Heckel, L., Fennell, K.M., Orellana, L. et al. A telephone outcall program to support caregivers of people diagnosed with cancer: utility, changes in levels of distress, and unmet needs. Support Care Cancer 26, 3789–3799 (2018). https://doi.org/10.1007/s00520-018-4246-6

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  • DOI: https://doi.org/10.1007/s00520-018-4246-6

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