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Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?

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Abstract

Purpose

The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.

Methods

Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients’ chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.

Results

The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (moderate to high) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer’s working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient’s life and understanding the patient’s experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient’s behaviour and adjusting to changes in the patient’s personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.

Conclusion

Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.

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Acknowledgements

This project was funded by the Western Australian Cancer and Palliative Care Network, Department of Health Western Australia and a HOTTAH grant provided by the Clinical Oncology Society of Australia. The authors thank participants in the study, sites involved in recruitment and Celine Fournier and Jenny Clarke for their assistance in the data collection. Georgia Halkett is currently supported by a Cancer Council of WA Research Fellowship.

Author information

Authors and Affiliations

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

    G. K. B. Halkett & M. M. Sinclair

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

    E. A. Lobb

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

    E. A. Lobb

  4. Telethon Kids Institute, University of Western Australia, Crawley, WA, 6009, Australia

    T. Shaw

  5. Department of Psychiatry, Sir Charles Gairdner Hospital, Perth, WA, Australia

    L. Miller

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

    L. Miller

  7. Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW, Australia

    E. Hovey

  8. Department of Medicine, University of New South Wales, Sydney, Australia

    E. Hovey

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

    A. K. Nowak

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

    A. K. Nowak

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  1. G. K. B. Halkett
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  2. E. A. Lobb
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Correspondence to G. K. B. Halkett.

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The authors declare that they no conflicts of interest. We have full control of all primary data and agree to allow the journal to review the data if requested.

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Halkett, G.K.B., Lobb, E.A., Shaw, T. et al. Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?. Support Care Cancer 26, 275–286 (2018). https://doi.org/10.1007/s00520-017-3846-x

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  • DOI: https://doi.org/10.1007/s00520-017-3846-x

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