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

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.

Patient preferences in tinnitus outcomes and treatments: a qualitative study.

In order to identify patient preferences in care for tinnitus an in depth grounded theory study was conducted. This consisted of interviews with 41 patients who had sought help for tinnitus across a range of locations and tinnitus services in England. Preferences for outcomes were for both the removal of the tinnitus and for improved coping and management of the tinnitus. Preferences for treatment were for individualized care, tailored information and for treatment to assist with psychological adjustment and auditory distraction. Adoption of treatments to manage tinnitus were based on a trial and error approach. Patients? preferences for individual treatments varied but were informed by the information they received. Information plays an important role in care for people with tinnitus. Patients hold individual preferences and require engagement in shared decision making.

Losing silence, gaining acceptance: a qualitative exploration of the role of thoughts in adult patients with subjective tinnitus.

OBJECTIVE: Tinnitus is one of the most common somatic symptoms to affect humanity. Prevalence rates in adult populations range from 8.2 to 20.1%. Our aim was to understand the beliefs and interpretations of tinnitus and the experience of living with it. DESIGN: An in depth grounded theory interview study. Grounded theory is an inductive approach to developing theory. SAMPLE: Thirteen contrasting people with tinnitus who had sought help from clinical services in England. RESULTS: We identified that the thinking patterns that people held around their tinnitus impacted how they experienced it. A core category emerged from the data, "sense making". Around "sense making" eight other themes operated. Results are discussed in relation to the literature on tinnitus acceptance and beliefs. CONCLUSIONS: The aim of interventions is to foster understanding and enhance perceptions of control, which may minimise the emotional impact of tinnitus and reduce the perceived severity of consequences.

The role of volunteer support in the community for adults with hearing loss and hearing aids.

OBJECTIVES: To explore interactions between audiology patients and volunteers, to describe encounters and define the role of volunteers. METHODS: Qualitative ethnographic and interview study of volunteer-patient interactions. Ten volunteer participants from two volunteer schemes in South West England were observed and interviewed. Three patient participants were interviewed. RESULTS: Analysis of observational data showed that volunteers provided support relating to local services and hearing aids, but did not engage in discussions about hearing loss. Interviews with volunteers identified gaps in audiology provision, including accessible services and clear information and highlighted a need for more support from audiology services to enable them to fulfil their role. Volunteer interactions with patients mimicked a clinician-patient encounter and volunteers employed strategies and behaviours used by professional audiologists. CONCLUSIONS: Audiology volunteers could provide an accessible bridge between health services and the community but their care is limited to focus on hearing aids. PRACTICE IMPLICATIONS: Volunteers enable patients to use hearing aids appropriately and are a core element of current care arrangements. However, volunteers express a need for adequate support from audiology services. Volunteers have the potential to increase service capacity and to bridge the gaps between community and audiology healthcare services.