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“You need something like this to give you guidelines on what to do”: patients' and partners' use and perceptions of a self-directed coping skills training resource

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Abstract

Purpose

This study aims to report on the acceptability of a self-directed coping skills intervention, called Coping-Together, for patients affected by cancer and their partners, including the strengths and limitations of the intervention design.

Methods

This initial version of Coping-Together included a series of four booklets, which aimed to provide practical coping strategies for the day-to-day management of common physical and psychosocial challenges. Thirty semi-structured interviews were conducted with 27 patients and/or 14 partners. Interviews were audiorecorded, transcribed verbatim, and analyzed for content.

Results

Participants endorsed the self-directed format, and the focus of Coping-Together on practical information was a feature that set it apart from other resources. The majority of participants interviewed felt that the proposed coping strategies were “doable”; however, only half of the participants reported learning new coping skills after reading the booklets. Additional benefits of reading the booklets were increasing awareness of challenges to prepare for, giving hope that something can help you “pull through”, providing a sense of normality, connecting patients and partners to people and services, and complementing support received from health professionals. Despite the general acceptability of the intervention, some aspects of its design were criticized, including the workbook-like exercises, expectations about using the resource together, level of guidance provided, and amount of information included. In general, most participants felt that too much negative information was included, whereas more experiential information was desired.

Conclusions

Preliminary evaluation of Coping-Together supported its practical approach and highlighted improvements to enhance its contribution to patient and partner coping.

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Acknowledgments

The development and evaluation of Coping-Together was supported by the Clinical Oncological Society of Australia/Sanofi-Aventis, the National Health and Medical Research Council (NHMRC), Centre for Health Research and Psycho-oncology, Priority Research Centre in Health Behaviour, and The University of Newcastle. Dr Lambert was supported by an NHMRC Research Fellowship (APP1012869) and Prof Girgis is supported by a Cancer Institute New South Wales grant. We are also grateful to all clinicians who helped us recruit participants for this study—Drs Peter Chong, Jon Gani, Brian Draganic, and Charles Douglas. Thank you to the reviewers who have contributed their expertise and time to the development of the Coping-Together booklets, including Dr Jemma Gilchrist, Ms Alyssa White, and Cancer Nurses (cancer care coordinators, breast care nurses, clinical nurse consultants) from the Cancer Care Coordination network, Hunter New England Local Health District.

Conflict of interest statement

None of the authors have a financial relationship with the organization that sponsored the research. The authors have full control of all primary data and agree to allow the journal to review the data if requested.

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Authors and Affiliations

  1. Ingram School of Nursing, Faculty of Medicine, McGill University, Wilson Hall, 3506 University Street, Montreal, Quebec, H3A 2A7, Canada

    Sylvie D. Lambert

  2. Translational Cancer Research Unit, Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, UNSW Medicine, The University of New South Wales, Liverpool, New South Wales, Australia

    Afaf Girgis & Hayley Candler

  3. K Floor, Mental Health Centre, The University of Queensland, Herston, Queensland, Australia

    Jane Turner

  4. Centre for Translational Neuroscience and Mental Health (CTNMH), Calvary Mater Newcastle, The University of Newcastle, Waratah, New South Wales, Australia

    Tim Regan

  5. Psycho-Oncology Service, Calvary Mater Newcastle, Waratah, New South Wales, Australia

    Ben Britton

  6. Griffith University, Logan City, Queensland, Australia

    Suzanne Chambers

  7. School of Psychology, The University of Sydney, Sydney, Australia

    Catalina Lawsin

  8. Kent School of Social Work, University of Louisville, Louisville, KY, USA

    Karen Kayser

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  1. Sylvie D. Lambert
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  2. Afaf Girgis
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  6. Ben Britton
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  7. Suzanne Chambers
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  8. Catalina Lawsin
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  9. Karen Kayser
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Corresponding author

Correspondence to Sylvie D. Lambert.

Appendix

Appendix

Table 3 Coping-Together (acceptability version) content
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Table 4 Examples of interview questions
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Lambert, S.D., Girgis, A., Turner, J. et al. “You need something like this to give you guidelines on what to do”: patients' and partners' use and perceptions of a self-directed coping skills training resource. Support Care Cancer 21, 3451–3460 (2013). https://doi.org/10.1007/s00520-013-1914-4

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  • DOI: https://doi.org/10.1007/s00520-013-1914-4

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