ArticleHealth expectations : an international journal of public participation in health care and health policy2024
'The burden is very much on yourself': A qualitative study to understand the illness and treatment burden of hearing loss across the life course.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed.
- First clinical report of a rare PDZD7 nonsense variant and recurrent mutations in Iranian families with autosomal recessive non-syndromic hearing loss.BMC medical genomics · 2025Article
- Bridging the Accountability Gap Between Aging and Disability Research.The Gerontologist · 2025Article
- Refinement and Validation of a New Patient-Reported Experience Measure for Hearing Loss (My Hearing PREM).Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Development of the First Patient-Reported Experience Measure (PREM) for Hearing Loss in Audiology Care-My Hearing PREM.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- 'The burden is very much on yourself': A qualitative study to understand the illness and treatment burden of hearing loss across the life course.Health expectations : an international journal of public participation in health care and health policy · 2024Article
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Authors and funding
6 authors.
Funding
Abstract
introductionHearing 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.
methodsA 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.
resultsThe 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).
conclusionsThe 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.
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