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Assessing and addressing unmet needs in people affected by brain tumours

Afseth, Janyne Dawn

Authors

Janyne Dawn Afseth



Abstract

Introduction
Guidelines recommend that brain tumour patients have their unmet needs assessed by a Holistic Needs Assessment (HNA), followed by appropriate support and care to maximise self-management. The aim of this study was to determine the role of HNA amongst brain tumour patients and their families.

Methods
A sequential mixed methods approach with three distinct phases was used. The first phase undertook a systematic review of available tools for HNA in brain tumours to determine if there was a psychometrically valid tool. This was followed by qualitative interviews and focus groups that explored patients’ and carers’ experiences and perceptions of unmet needs as well as strategies and support to assess and address these. The next phase was a realist synthesis of the HNA programmes in brain tumour patients which explored how HNA programmes could work. The thesis was underpinned by realist methods which were used to draw each of the phases of the thesis together.

Results
It was determined that there was no psychometrically valid tool that could be recommended for HNA in this group. Furthermore, there are significant challenges in using a patient completed HNA due to cognitive difficulties. Patients with brain tumours have diverse needs, but also unique compared to most other cancers due to the neurocognitive impairments. These also impact the carers as neurocognitive changes can be distressing but also cause a higher carer burden, therefore carers need specific support in their role. While the HNA as a process is useful in addressing unmet needs and enabling more self-management; the existing programme for HNA in UK is not suitable.

Conclusions
This thesis supported that a modified HNA programme may be beneficial in meeting the needs of brain tumour patients. Due to neuro-cognitive impairments, an assessment of the patient’s ability to self-manage, combined with inclusion and support of carers in HNA programmes for brain tumour patients, is needed to maximise the potential for self-management. The assessment and management of distress as well as increased access to the neuro-oncology team is also recommended. This research has proposed an alternative, novel practice-based model integrating the findings of this research.

Thesis Type Thesis
Deposit Date Nov 3, 2022
Publicly Available Date Nov 3, 2022
DOI https://doi.org/10.17869/ENU.2022.2947897
Public URL http://researchrepository.napier.ac.uk/Output/2947897
Award Date Jul 6, 2022

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