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Supportive Care in Cancer

, Volume 26, Issue 1, pp 275–286 | Cite as

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?

  • G. K. B. HalkettEmail author
  • E. A. Lobb
  • T. Shaw
  • M. M. Sinclair
  • L. Miller
  • E. Hovey
  • A. K. Nowak
Original Article

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.

Keywords

High-grade glioma Carers Longitudinal study Distress Psychological impact Unmet needs 

Notes

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.

Compliance with ethical standards

Conflict of interest

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.

Supplementary material

520_2017_3846_MOESM1_ESM.docx (18 kb)
ESM 1 (DOCX 17 kb)

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Copyright information

© Springer-Verlag GmbH Germany 2017

Authors and Affiliations

  • G. K. B. Halkett
    • 1
    Email author
  • E. A. Lobb
    • 2
    • 3
  • T. Shaw
    • 4
  • M. M. Sinclair
    • 1
  • L. Miller
    • 5
    • 6
  • E. Hovey
    • 7
    • 8
  • A. K. Nowak
    • 9
    • 10
  1. 1.School of Nursing, Midwifery and Paramedicine, Faculty of Health SciencesCurtin UniversityPerthAustralia
  2. 2.Calvary Health Care Kogarah and Cunningham Centre for Palliative CareSydneyAustralia
  3. 3.School of MedicineThe University of Notre DameSydneyAustralia
  4. 4.Telethon Kids InstituteUniversity of Western AustraliaCrawleyAustralia
  5. 5.Department of PsychiatrySir Charles Gairdner HospitalPerthAustralia
  6. 6.Department of Health WAWA Cancer and Palliative Care NetworkPerthAustralia
  7. 7.Department of Medical OncologyPrince of Wales HospitalRandwickAustralia
  8. 8.Department of MedicineUniversity of New South WalesSydneyAustralia
  9. 9.Department of Medical OncologySir Charles Gairdner HospitalNedlandsAustralia
  10. 10.School of MedicineUniversity of Western AustraliaNedlandsAustralia

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