A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress

Georgia K B Halkett; Emma McDougall; Melissa Berg; Jenny Clarke; Haryana M Dhillon; Elizabeth Lobb; Jane L Phillips; Peter Hudson; Mona M Faris; Rachel Campbell; Joanne Shaw; Elisabeth Coyne; Brian Kelly; Tamara Ownsworth; Dianne M Legge; Anna K Nowak

doi:10.1093/nop/npae033

A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress

Neurooncol Pract. 2024 Apr 17;11(5):604-616. doi: 10.1093/nop/npae033. eCollection 2024 Oct.

Authors

Georgia K B Halkett¹, Emma McDougall¹, Melissa Berg¹, Jenny Clarke¹, Haryana M Dhillon², Elizabeth Lobb³, Jane L Phillips^{4

5}, Peter Hudson^{6

7}, Mona M Faris², Rachel Campbell², Joanne Shaw², Elisabeth Coyne⁸, Brian Kelly^{9

10}, Tamara Ownsworth¹¹, Dianne M Legge^{12

1}, Anna K Nowak¹³

Affiliations

¹ Faculty of Health Sciences, Curtin School of Nursing/Curtin Health Innovation Research Institute, Curtin University, Perth, Western Australia, Australia.
² Psycho-Oncology Cooperative Research Group, Faculty of Science, School of Psychology, University of Sydney, Sydney, New South Wales, Australia.
³ ImPACCT, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia.
⁴ University of Technology Sydney, Ultimo, New South Wales, Australia.
⁵ School of Nursing, Queensland University of Technology, Brisbane, Queensland, Australia.
⁶ Centre for Palliative Care St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia.
⁷ Department of Nursing, University of Melbourne, Melbourne, Victoria, Australia.
⁸ School of Nursing and Midwifery, Griffith University, Gold Coast, Queensland, Australia.
⁹ School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.
¹⁰ Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta, Canada.
¹¹ School of Applied Psychology, Griffith University, Brisbane, Queensland, Australia.
¹² Olivia Newton-John Cancer Centre, Austin Health, Melbourne, Victoria, Australia.
¹³ University of Western Australia, Crawley, Western Australia, Australia.

PMID: 39279774
PMCID: PMC11398922 (available on 2025-04-17)
DOI: 10.1093/nop/npae033

Abstract

Background: Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support.

Objectives: To describe unmet needs of highly distressed carers of people with HGG and recommendations and referrals made by a nurse to support them within the Care-IS trial.

Methods: Descriptive case series. Carers of people with HGG in the Care-IS trial reporting severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively.

Results: Four highly distressed carers were identified (N = 98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumor unmet needs were: adjusting to changes in personality, mental and thinking abilities, and accessing government assistance. Nurses provided information about treatment, side effects, and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered.

Conclusions: Highly distressed carers have diverse support needs in many domains, which can change over time. Nurses were critical in identifying carers' needs, providing support, and making referrals. Carers' distress and needs require ongoing screening and management.

Keywords: carers; case series; content analysis; high-grade glioma; nurse intervention.

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