'The burden is very much on yourself': A qualitative study to understand the illness and treatment burden of hearing loss across the life course

Abstract

INTRODUCTION: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment-related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. METHODS: A qualitative design was used with semi-structured interviews (online or in-person) with participants recruited through audiology services and nonclinical services, such as lip-reading classes. Forty-six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. RESULTS: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). CONCLUSIONS: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld-led care, family-centred care and peer support to build support for those with hearing loss. PATIENT OR PUBLIC CONTRIBUTION: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co-authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript.

Publication DOI: https://doi.org/10.1111/hex.14067
Divisions: College of Health & Life Sciences > School of Optometry > Audiology
College of Health & Life Sciences
College of Health & Life Sciences > Aston Institute of Health & Neurodevelopment (AIHN)
Funding Information: This study is supported by a National Institute for Health Research (NIHR) Health Services and Delivery Research programme (Funding stream REF NIHR 131597). The sponsor for this study is the University Hospitals Bristol and Weston NHS Foundation Trust. As
Additional Information: Copyright © 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Uncontrolled Keywords: audiology,hearing aids,hearing loss,illness burden,life course perspective,qualitative,treatment burden,Public Health, Environmental and Occupational Health
Publication ISSN: 1369-7625
Data Access Statement: The data that support the findings of this study are available on request from the corresponding author. The data are not publicly<br/>available due to privacy or ethical restrictions.
Last Modified: 19 Jun 2024 07:22
Date Deposited: 10 May 2024 16:17
Full Text Link:
Related URLs: https://onlinel ... .1111/hex.14067 (Publisher URL)
http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Article
Published Date: 2024-06
Published Online Date: 2024-05-07
Accepted Date: 2024-04-25
Submitted Date: 2024-02
Authors: Smith, Sian K. (ORCID Profile 0000-0002-9541-2221)
Pryce, Helen (ORCID Profile 0000-0001-5183-6236)
O'Connell, Georgina Burns (ORCID Profile 0000-0001-6430-8627)
Hussain, Saira (ORCID Profile 0000-0002-8422-1366)
Shaw, Rachel (ORCID Profile 0000-0002-0438-7666)
Straus, Jean

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