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Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma — a Pilot Study

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Abstract

The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

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Acknowledgements

This project was funded by the Cancer Council of WA and the Western Australian Cancer and Palliative Care Network, Department of Health Western Australia. Cancer Australia is funding the randomised controlled trial. A/Prof Georgia Halkett is currently supported by a Cancer Council WA Research Fellowship.” The authors thank the consumers and participants in the study and sites involved in recruitment.

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Authors and Affiliations

  1. Faculty of Health Sciences, School of Nursing, Midwifery and Paramedicine, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia

    Georgia K. B. Halkett & Jenny Clarke

  2. Calvary Health Care Kogarah and Cunningham Centre for Palliative Care, Sydney, New South Wales, Australia

    Elizabeth A. Lobb

  3. School of Medicine, The University of Notre Dame, Sydney, New South Wales, Australia

    Elizabeth A. Lobb

  4. Department of Psychiatry, Sir Charles Gairdner Hospital, Perth, Western Australia, Australia

    Lisa Miller

  5. Department of Health WA, WA Cancer and Palliative Care Network, Perth, Western Australia, Australia

    Lisa Miller & Anne King

  6. Telethon Kids Institute, University of Western Australia, Perth, Western Australia, Australia

    Thérèse Shaw

  7. School of Public Health, Curtin University, Perth, Western Australia, Australia

    Rachael Moorin

  8. School of Population Health, The University of Western Australia, Perth, Western Australia, Australia

    Rachael Moorin

  9. Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia

    Anne Long & Anna K Nowak

  10. Carers WA, Perth, Western Australia, Australia

    Stephanie Fewster

  11. School of Medicine, University of Western Australia, Nedlands, Western Australia, Australia

    Anna K Nowak

Authors
  1. Georgia K. B. Halkett
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  2. Elizabeth A. Lobb
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  3. Lisa Miller
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  4. Thérèse Shaw
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  5. Rachael Moorin
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  6. Anne Long
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  7. Anne King
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  8. Jenny Clarke
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  9. Stephanie Fewster
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  10. Anna K Nowak
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Corresponding author

Correspondence to Georgia K. B. Halkett.

Ethics declarations

Ethics approval was gained from Curtin University and the participating site. Written informed consent was gained from both the patients and the carers.

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Halkett, G.K.B., Lobb, E.A., Miller, L. et al. Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma — a Pilot Study. J Canc Educ 33, 967–975 (2018). https://doi.org/10.1007/s13187-017-1175-x

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  • DOI: https://doi.org/10.1007/s13187-017-1175-x

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