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?

Halkett, G. K. B.; Lobb, E. A.; Shaw, T.; Sinclair, M. M.; Miller, L.; Hovey, E.; Nowak, A. K.

doi:10.1007/s00520-017-3846-x

Cited by 81Cancer survivorship and careNursing care and researchFamily Support in Illness

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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Halkett, G. K. B., Lobb, E. A., Shaw, T., Sinclair, M. M., Miller, L., Hovey, E., Nowak, A. K.·2018·Supportive Care in Cancer

DOI 10.1007/s00520-017-3846-x

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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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Caregiver needs fall into social, cognitive, and psychological categories.
“These needs fall into social, cognitive, and psychological categories [2].”
From Exploring the Unmet Needs of Cancer Caregivers in India: A Cross-Sectional Survey (2024) · cites this paper as [2]
The Carer needs section describes work and social needs, psychological and emotional needs, and needs related to patients’ cognitive changes. It does not classify caregiver needs into the three categories stated: the supportive-care scale has four domains, and cognitive changes appear as an item in a separate brain-tumor-specific scale. No page number is available in our copy. (LLM, conf=0.85)
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Keir S, Calhoun-Eagan R, Swartz U, Friedman H (2008) Screening for distress in patients with brain cancer Psychooncology 17 (6):621-625
Halkett GK, Lobb EA, Shaw T, Sinclair MM, Miller L, Hovey E, Nowak AK (2016) Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma. Support Care Cancer. doi:10.1007/s00520-016-3478-6 · DOI

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Additional file 1 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
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Additional file 7 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940909
Additional file 8 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940912
Additional file 6 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940903
Additional file 10 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940882
Additional file 9 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940915
Additional file 3 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940894
Additional file 5 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940900
Additional file 4 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940897
Additional file 2 of Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940891
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Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma
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What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require?
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Self-citation

Authors: Halkett, G. K. B., Lobb, E. A., Shaw, T., Sinclair, M. M., Miller, L., Hovey, E., & Nowak, A. K.
Affiliations: Curtin University (AU)
The University of Notre Dame Australia (AU)
The Kids Research Institute Australia (AU)
Government of Western Australia Department of Health (AU)
UNSW Sydney (AU)
The University of Western Australia (AU)
Corresponding author: Halkett, G. K. B.
ORCID: Halkett, G. K. B.
Lobb, E. A.
Shaw, T.
Sinclair, M. M.
Miller, L.
Hovey, E.
Nowak, A. K.
Venue: Supportive Care in Cancer
Publisher: Springer Science and Business Media LLC
Published: 2017-08-14
Volume: 26
Issue: 1
Pages: 275-286
ISSN: 0941-4355 (ISSN-L)
1433-7339
DOI: 10.1007/s00520-017-3846-x
OpenAlex: W2745344069
Cited by: 81
References: 46
Citations by year: 2026: 4 · 2025: 10 · 2024: 10 · 2023: 11 · 2022: 11 · 2021: 10 · 2020: 16 · 2019: 5 · 2018: 4
FWCI: 3.03
Type: journal article
Language: en
Open access: green
admin.research-repository.uwa.edu.au
Licence: other-oa
www.springer.com/tdm (tdm)
Locations: Supportive Care in Cancer (publishedVersion)
PubMed (publishedVersion)
UWA Profiles and Research Repository (UWA) (submittedVersion, other-oa)
eSpace (Curtin University) (submittedVersion)
Topics: Health Sciences › Medicine › Oncology › Cancer survivorship and care
Health Sciences › Health Professions › Pharmacy › Nursing care and research
Social Sciences › Sociology and Political Science › Family Support in Illness
Keywords: family caregivers, high-grade glioma, unmet needs, caregiver distress, chemoradiotherapy, carer support services
MeSH terms: Adult, Aged, Brain Neoplasms, Cross-Sectional Studies, Emotions, Empathy, Female, Glioma, Health Services Needs and Demand, Humans, Longitudinal Studies, Male, Middle Aged, Caregivers

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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

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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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