- Title
- COPING: Cognitive Impairment in People with Glioma and their Informal Caregivers
- Creator
- Carlson, Melissa
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2024
- Description
- Research Doctorate - Doctor of Philosophy (PhD)
- Description
- Gliomas are primary malignant cancers and are incurable neurodegenerative conditions with no known lifestyle risk factors, low survival, and high incidence of chronic disability among survivors. Cognitive impairment is frequently present at diagnosis for people with glioma and can impact many facets of life such as personality, personal relationships, leisure, employment, decision making, emotional wellbeing, physical health, quality of life, and survival. Cognitive impairment can be particularly consequential if ongoing or poorly managed. The impacts of cognitive impairment can require support from an informal caregiver, such as a family member, friend, or other significant person. Although many caregivers have reported feeling privileged to support the person with glioma, they also experience higher caring workload, higher caregiver strain, and lower emotional and physical wellbeing. Cognitive changes first need to be identified before effective interventions and supports can be offered. There remain challenges in finding a cognitive assessment tool that is clinically valid for people with glioma and acceptable and feasible for use in busy clinical settings with a burdened patient group. The overall aim of this thesis was to address gaps in the literature about cognitive assessment for people with glioma by exploring the acceptability and feasibility of cognitive assessments used with people with glioma, how cognitive assessment is being undertaken in this patient group, and how cognitive impairment and related burden are experienced and supported from the perspectives of patients and caregivers. Specifically, this study aimed to: a) Identify subjective and objective cognitive assessments for which feasibility and acceptability has with people with brain cancer in order to identify pragmatic tools for potential use in routine cognitive assessment; b) Understand the acceptability and feasibility of in-clinic and remote cognitive assessment using the ARCS in order to provide guidance for future in-person and remote administration of cognitive assessment, including the ARCS; c) Describe the pathways of healthcare system contact for people with glioma and their caregivers to better understand the role of cognitive impairment in patient and caregiver pathways. e) Understand people with glioma and caregivers’ experiences of cognitive decline, assessment, and supportive caregiver needs in order to identify how these perspectives may influence implementation of routine cognitive screening; f) Understanding healthcare professionals experiences of assessing cognition, cognitive assessment needs, and cognition-related supportive care in order to better understand healthcare professional cognitive assessment needs, and g) Discuss key findings of these studies and their implications for policy and practice and future research. A study pilot-testing routine cognitive assessment using a locally developed cognitive assessment tool, the Audio Recorded Cognitive Screen (ARCS) in two Local Health Districts in New South Wales, Australia provided an opportunity to explore these aims. The thesis aims were addressed through: i) a systematic review of the literature (Chapter 2), ii) pilot-testing a cognitive assessment (ARCS) with 26 people with glioma in two LHDs (Chapter 3), iii) a mixed methods acceptability and feasibility study involving people with glioma (n=25) and their caregivers (n=13) (Chapter 4), iv) medical records review and patient and caregiver pathway mapping for people with glioma (n=24) and their caregivers (n=21) (Chapter 4), and v) qualitative interviews with people with glioma (n=5), caregivers (n=13), and healthcare professionals (n=11) (Chapters 5 and 6). The thesis discussion (Chapter 7) discusses the findings of these studies. These main thesis findings are as follows: People with glioma and their caregivers experience incredible burden as a result of cognitive changes, but this burden sits within a set of complex physical and psychosocial needs. Therefore, cognitive changes and their impacts (including wellbeing) must be thoughtfully included in clinical pathways so timely help can be offered as part of holistic brain cancer – defined as cancer care that includes physical and psychosocial wellbeing beyond cancer treatment, recovery, and recurrence. Challenges in identifying and supporting cognitive changes included a lack of acceptable and feasible tools for use with people with glioma, a lack of opportunities for caregivers to communicate their concerns directly with healthcare professionals, the importance of discipline-specific, patient-centred cognitive assessment, and challenges for people with glioma, caregivers, and healthcare professionals navigating and accessing timely and appropriate supports. Recommendations for research include continuing the work of rigorously assessing the clinical validity, acceptability and feasibility of tools that may be used with people with glioma. However, to ensure efficient, patient-centred care, healthcare services, cognitive assessment and referral processes need to incorporate healthcare professionals’ discipline-specific needs as well as patient and caregiver health, safety, relationships, support networks and patient and caregiver treatment goals, and be tailored to the local health service context. Healthcare professionals and healthcare services endeavouring to improve implementation of routine cognitive assessment, rehabilitation, and support may consider service-wide mapping of current assessment and referral needs and processes, as well as available rehabilitative and supportive care services available for their patients and caregivers. This mapping could be followed by collaboratively developing clinical pathways for cognitive assessments and referrals that are tailored to healthcare professionals’ discipline-specific needs, patient and caregiver needs and goals, and available rehabilitative and supportive care resources.
- Subject
- glioma; cancer; supportive care; cognition; caregivers; congitive assessment
- Identifier
- http://hdl.handle.net/1959.13/1519472
- Identifier
- uon:57400
- Rights
- Copyright 2024 Melissa Carlson
- Language
- eng
- Full Text
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| Thumbnail | File | Description | Size | Format | |||
|---|---|---|---|---|---|---|---|
| View Details Download | ATTACHMENT01 | Thesis | 8 MB | Adobe Acrobat PDF | View Details Download | ||
| View Details Download | ATTACHMENT02 | Abstract | 358 KB | Adobe Acrobat PDF | View Details Download |