Department of Audiology, College of Health and Life Sciences, Aston University, Birmingham, UK.
Aston Institute of Health and Neurodevelopment and School of Psychology, College of Health and Life Sciences, Aston University, Birmingham, UK.
Health Expect. 2024 Jun;27(3):e14067. doi: 10.1111/hex.14067.
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.
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.
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).
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.
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.
听力损失是一种随年龄增长而急剧上升的慢性健康状况。人们对健康状况的反应和应对方式受到其进行疾病和治疗相关工作的能力的影响。本研究旨在探讨与听力损失相关的累积负担以及为缓解这些负担而调动的资源。
采用定性设计，通过听力学服务和非临床服务（如唇读课程）招募参与者进行半结构化访谈（线上或线下）。共招募了 46 名年龄在 16 岁至 96 岁之间的听力损失患者参与研究。采用基于 May 等人的治疗负担理论的归纳方法分析数据。
疾病负担使患者不得不努力理解自己的听力损失，应对声音变化、社交互动、身份认同带来的情绪变化，并应对与他人沟通所需的日常挫折。治疗负担的特点是放弃和不确定性；患者需要进行情绪劳动来适应听力技术，并应对听力进展的不确定性。为了减轻负担，参与者利用内部资源（心理、健康素养、认知）和外部资源（社会支持、财务、信息、技术）。
听力损失的工作量似乎主要由患者承担，而且并不总是显而易见的。我们的研究表明，需要通过实施以生活为导向的护理、以家庭为中心的护理和同伴支持，拓宽听力学护理的方法，为听力损失患者提供支持。
我们在与通过阿斯顿大学和志愿者联系招募的有听力损失经历的公众成员以及更有可能受听力损失影响的成年人（包括有学习障碍的成年人、居住在养老院的老年人和来自南亚的人（孟加拉国人、印度人和巴基斯坦人））进行了协商。这些人对研究目的、访谈计划和参与者招募实践发表了意见。我们的合著者之一（有经验的专家）为主题的发展和解释以及最终手稿的准备做出了贡献。
