Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jun 20;10(6):544-554.
doi: 10.1093/nop/npad032. eCollection 2023 Dec.

Exploratory multi-methods evaluation of an online intervention for carers of people with high-grade glioma

Affiliations

Exploratory multi-methods evaluation of an online intervention for carers of people with high-grade glioma

Helen M Haydon et al. Neurooncol Pract. .

Abstract

Background: Inadequate knowledge and skills and a lack of confidence to provide care have been identified as major unmet needs for carers of people with brain cancer. An online intervention was developed to address the unmet needs of carers of people with high-grade glioma.

Methods: Ten carers evaluated the intervention through multiple methods. Acceptability and usability were measured through online data analytics (unique page views, time on page), surveys, and interviews. Questionnaires measured potential impacts on distress (Distress Thermometer), depression, anxiety (Hospital Anxiety and Depression Scale), carer competence (Carer Competence Scale), carer preparedness (Caregiving Preparedness Scale), unmet needs (Supportive Care Needs Scale - Brain Tumor Specific for carers), usability and acceptability (USE).

Results: Results suggested the intervention had high levels of usability (usability scales' means range = 5.1 to 6.7 out of 7) and acceptability (M = 76.3/100). Correlations indicated the potential to impact depression. Qualitative findings highlighted benefits of the intervention as a comprehensive reliable resource that could validate and normalize carer experiences. Interview findings guided further improvements (eg, additional carer videos, content organization).

Conclusions: The study indicated high acceptability and usability of an online intervention for carers of people with high-grade glioma. This exploratory study also provided preliminary indications of a potential to decrease depression. However, a more robust, potentially longitudinal, investigation is needed with a larger and broader sample. Informed by this study, the intervention has been amended and a randomized controlled trial will further evaluate the enhanced intervention.

Keywords: brain cancer; carer needs; digital health; neuro-oncology; online intervention.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Meantime (seconds) on pages (coded by the eleven themes) over the period of the intervention.
Figure 2.
Figure 2.
Number of page views (coded by the eleven themes) over the period of the intervention.

References

    1. Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K.. A study of patients with a primary malignant brain tumour and their carers: Symptoms and access to services. Int J Palliat Nurs. 2010;16(1):24–30. - PubMed
    1. Brown PD, Ballman KV, Rummans TA, et al. . Prospective study of quality of life in adults with newly diagnosed high-grade gliomas. J Neurooncol. 2006;76(3):283–291. - PubMed
    1. Armstrong TS, Cohen MZ, Eriksen LR, Hickey JV.. Symptom clusters in oncology patients and implications for symptom research in people with primary brain tumors. J Nurs Scholarsh. 2004;36(3):197–206. - PubMed
    1. Tucha O, Smely C, Preier M, Lange KW.. Cognitive deficits before treatment among patients with brain tumors. Neurosurg. 2000;47(2):324–334. - PubMed
    1. Klein M, Taphoorn MJB, Heimans JJ, et al. . Neurobehavioral status and health-related quality of life in newly diagnosed high-grade glioma patients. J Clin Oncol. 2001;19(20):4037–4047. - PubMed