Understanding the experiences of caregivers for patients with Chronic Traumatic Encephalopathy

The aim of this thesis was to understand the experiences of caregivers for patients with Chronic Traumatic Encephalopathy (CTE) and develop an informative resource to help support these caregivers. Literature on caregiving in other contexts (i.e. neurodegenerative diseases) has consistently shown the prevalence of caregiving burden, and how this causes a range of negative outcomes on a caregiver’s mental, emotional and physical wellbeing. Although the number of CTE diagnoses is increasing, the impact this has on the primary caregiver is still not understood. Through conducting interviews and thematically analysing the experiences of older spousal caregivers and younger caregivers with varying relationships to the care-recipients, I explore what it is like to be a CTE caregiver and what elements make CTE caregiving experiences unique compared to other caregiving contexts. While there are overlaps with caregiving in Dementia, unique challenges in CTE caregiving exist. Older spousal caregivers, for instance, often struggle with a heavy perception of burden even after their caregiving ends, leading to difficulties in returning to a normal routine. Younger caregivers, juggling caregiving with parenting and career responsibilities, face a broader impact of burden throughout their caregiving journeys. However, the misunderstanding and lack of support from others, including healthcare professionals, bore the biggest burden on CTE caregivers. Using this understanding, I developed a supportive intervention, namely a podcast, to disseminate and evaluate with CTE caregivers. Through this, I was able to learn about the effectiveness of the intervention and how the feedback from the caregivers can inform the development of the podcast to ensure it supports them during and after their caregiving journeys. Overall, this work sheds light on the experiences of CTE caregivers and develops an intervention to support them through these experiences.

Grantor dc:publisher

Oxford Brookes University

Author dc:creator

• Young, Georgia

Contributors dc:contributor

• Schloerscheidt, Astrid
• Smith, Matthew

Statement dc:rights

• All rights reserved

Language dc:language

en

DOI dc:identifier

https://doi.org/10.24384/j1ct-xd09

OAI identifier oai:identifier

tle:e9ddcb60-65e0-4aa1-be41-767ac16292da:d6bd9758-527a-46cd-bfe2-c433766e8fca:1