The lived experience of hearing loss - an individualised responsibility.

OBJECTIVE: This study aimed to provide a conceptual model to understand what typifies the lived experience of hearing loss. DESIGN: A grounded theory informed study of adults with hearing loss (n = 46) who participated in individual interviews. The data were analysed in line with the constant comparative approach of grounded theory. A substantial patient and public engagement (PPIE) strategy underpinned decisions and processes throughout. STUDY SAMPLE: Adults were recruited from age bands (16-29; 30-49;50-79 and 80 upwards) to provide different lived experience. We recruited individuals from across the UK including urban, sub-urban and rural communities and included a typical constituency of each location including black and minority ethnic participants. Our PPIE groups included adults often marginalised in research including South Asian community groups, adults in residential care and those with additional disabilities. RESULTS: We identified the consistent features of the lived experience with hearing loss, as the individualised responsibility that hearing loss confers. These are an individual auditory lifeworld; social comparison and social support; individual and patient-centred care and individual agency and capability. CONCLUSIONS: This work provides new insights for those practising audiology and highlights the importance of building social support systems through implementation of family and peer support approaches.

Protocol for the development and validation of a patient-reported experience measure (PREM) for people with hearing loss: the PREM-HeLP.

INTRODUCTION: Hearing loss is a common chronic health condition and adversely affects communication and social function resulting in loneliness, social isolation and depression. We know little about the patient experience of living with hearing loss and their views on the quality of the audiology service. In this study, we will develop and validate the first patient-reported experience measure (PREM) to understand patients' experiences of living with hearing loss and their healthcare interactions with audiology services. METHODS AND ANALYSIS: We will develop the PREM in three phases: (1) development of PREM prototype (items/statements) derived from previous qualitative work and narrative review, (2) cognitive interview testing of the PREM prototype using a 'think aloud' technique to examine the acceptability and comprehensibility of the tool and refine accordingly and (3) psychometric testing of the modified PREM with 300 participants to assess the reliability and validity of the tool using Rasch analyses with sequential item reduction. Eligible participants will be young people and adults aged 16 years and over who have hearing loss. Participants will be recruited from three clinical sites located in England (Bath, Bristol) and Scotland (Tayside) and non-clinical settings (eg, lip-reading classes, residential care settings, national charity links, social media). ETHICS AND DISSEMINATION: The study was approved by the West of Scotland Research Ethics Service (approval date: 6 May 2022; ref: 22/WS/0057) and the Health Research Authority and Health and Care Research Wales (HCRW) Approval (approval date: 14 June 2022; IRAS project ID: 308816). Findings will be shared with our patient and public involvement groups, academics, audiology communities and services and local commissioners via publications and presentations. The PREM will be made available to clinicians and researchers without charge.

Tinnitus, Suicide, and Suicidal Ideation: A Scoping Review of Primary Research.

Tinnitus (the perception of sound in the absence of any corresponding external source) is highly prevalent and can be distressing. There are unanswered questions about how tinnitus, suicidal thoughts, and suicidal behaviours co-occur and interact. To establish the extent of scientific literature, this scoping review catalogued primary reports addressing the associations between tinnitus, suicidal ideation, attempted suicide, and death by suicide. We searched OvidSP, Medline, EMBASE, PsycINFO, CINAHL, Google Scholar, EThoS, and ProQuest for all studies and case reports on ideation and/or attempted and/or completed suicide in the context of tinnitus. Twenty-three studies were included, and data were charted according to study type. Several epidemiological and other observational studies gave evidence of risk factors and an association between suicidal ideation, suicidal behaviour, and tinnitus. However, there was no evidence of the direction of causality. Qualitative studies are indicated to explore the patient's experience and understand the dynamics of any interaction between tinnitus and suicidal thoughts and behaviours. A theory-informed model of tinnitus and suicide needs to be developed to inform the development of interventions and how tinnitus patients are supported clinically.

Protocol for a qualitative study exploring the lived experience of hearing loss and patient reported experience in the UK: the HeLP study.

INTRODUCTION: Worldwide, hearing loss is a significant public health issue and one of the most common chronic health conditions experienced by older adults. Hearing loss is associated with communication difficulties, social withdrawal, isolation and lower quality of life. Although hearing aid technology has improved significantly, the workload of managing hearing aids has increased. The aim of this qualitative study is to develop a novel theory of people's lived experience of hearing loss across the lifespan. METHODS: Eligible participants will be young people and adults aged 16 years and above who have a hearing loss and carers/family members of people with a hearing loss. This study will use individual, in-depth face-to-face or online interviews. With participants' permission, interviews will be audio-recorded and transcribed verbatim. A grounded theory approach to concurrent data gathering and analysis will develop grouped codes and categories and link these to provide a novel theory to describe the experience of hearing loss. ETHICS AND DISSEMINATION: The study was approved by the West of Scotland Research Ethics Service (approval date: 6 May 2022 ref: 22/WS/0057) and the Health Research Authority and Health and Care Research Wales Approval (approval date: 14 June 2022; IRAS project ID: 308816). The research will inform the development of a Patient Reported Experience Measure to improve the information and support given to patients. Findings will be disseminated through peer-reviewed articles and at academic conferences, as well as to our patient and public involvement groups, healthcare professionals, audiology services and local commissioners.

What is the burden of tinnitus?

Introduction: Tinnitus is a complex experience that often occurs alongside other health conditions, including hearing loss. In the UK, as in other western countries, patterns of health are changing with a rise in multi-morbidity and complexity of health conditions. As we age, we can expect to live with multiple health conditions. Burden of illness has long been recognised. Less well recognised is the burden that accumulates from the treatment of health conditions. Methods: This qualitative thematic analysis of patient accounts described the cumulative burdens of tinnitus, both the experience of hearing the tinnitus and from the treatments undertaken. Between 2017-8 we conducted interviews with 38 participants who were help-seekers in a range of contrasting UK clinical services (Physician led, Audiology led and Hearing Therapy led). We examined these interview data using reflexive thematic analysis methods to identify and explore the cumulative burdens for those who live with and seek help for their tinnitus. Specifically, we used six phased approach to determine and group themes. Results: The themes provide a coherent description of the nature of the burden that people with tinnitus experience. Discussion: In tinnitus, as with most chronic health conditions, the largest treatment workload is devolved to the patient. Patients are required to implement treatments, learn about tinnitus and find new ways of coping. Yet this work happens invisibly, without recognition from clinicians who measure outcomes but not the efforts made to achieve outcomes. Patient-centred care depends upon the recognition of the cumulative burdens that patients experience.

Surrounded by Sound: The Impact of Tinnitus on Musicians.

AIM: To investigate the impact of tinnitus on professional musicians in the UK. BACKGROUND: Tinnitus is the experience of sound when an external source is absent, primarily associated with the ageing process, hearing loss, and noise exposure. Amongst populations exposed to industrial noise, noise exposure and noise-induced hearing loss (NIHL) have been found to be the factors most associated with tinnitus. The risk of NIHL amongst professional musicians is greater than that amongst the general population, meaning they may be at increased risk of tinnitus. METHODS: Seventy-four professional musicians completed an online survey involving closed and open-ended questions, and completed the Tinnitus fuctional Index (TFI) questionnaire. Descriptive statistics and thematic analysis of open-ended qualitative responses were used to analyse the data. RESULTS: Three themes were generated from the analysis of the responses to the open-ended questions. These themes were: (1) the impact of tinnitus on the lives of professional musicians, (2) professional musician experience of tinnitus services, support, and hearing health and safety, and (3) the support professional musicians want. The mean global TFI score for professional musicians was 39.05, interpreted as tinnitus being a moderate problem. Comparisons with general population data revealed lower TFI scores for the TFI subscales of 'sense of control' and 'intrusiveness' for professional musicians and higher for auditory difficulties associated with tinnitus amongst professional musicians. CONCLUSION: Tinnitus can negatively impact on professional musicians' lives. There is a need for bespoke self-help groups, awareness raising, and education to prevent tinnitus and promote hearing health among musicians.

Soldiering on: a survey on the lived experience of tinnitus in aged military veterans in the UK.

Tinnitus has long been interrogated as a medical conundrum, with little discourse between medicine and other disciplines. It involves the perception of sound in the ears or head without any external sound source, most likely a natural consequence of some form of hearing loss. For many people, tinnitus is bothersome and associated with various problems such as insomnia, difficulty concentrating and impaired listening ability. Nevertheless, with little attention from humanities or the social sciences, our understanding of the wider perspectives and psychosocial context of adults with tinnitus is limited, especially among UK military veterans. The aim of this study was to explore the impact of tinnitus on aged UK veterans, and to consider the support they receive and require to live well with tinnitus. In all, 120 aged UK veterans took part in this study. Data revealed similarities and differences between UK veteran and other study populations. For example, tinnitus symptom severity was higher in aged veterans than a general (younger) research population, particularly so on measures of intrusiveness and the effect of tinnitus on listening ability. Veterans had mixed views on social support. Many did not want to talk about tinnitus with others and/or did not want to burden their family, preferring to deal with their tinnitus 'backstage'. Others appreciated empathy or sympathy; many implied a desire that their family and/or friends could better understand their experience of living with tinnitus and the problems it caused them. These complexities support a need for cross-disciplinary work to understand and respond to tinnitus-related problems in veterans.

Ring and peg electrodes for minimally-Invasive and long-term sub-scalp EEG recordings.

OBJECTIVE: Minimally-invasive approaches are needed for long-term reliable Electroencephalography (EEG) recordings to assist with epilepsy diagnosis, investigation and more naturalistic monitoring. This study compared three methods for long-term implantation of sub-scalp EEG electrodes. METHODS: Three types of electrodes (disk, ring, and peg) were fabricated from biocompatible materials and implanted under the scalp in five ambulatory ewes for 3months. Disk electrodes were inserted into sub-pericranial pockets. Ring electrodes were tunneled under the scalp. Peg electrodes were inserted into the skull, close to the dura. EEG was continuously monitored wirelessly. High resolution CT imaging, histopathology, and impedance measurements were used to assess the status of the electrodes at the end of the study. RESULTS: EEG amplitude was larger in the peg compared with the disk and ring electrodes (p<0.05). Similarly, chewing artifacts were lower in the peg electrodes (p<0.05). Electrode impedance increased after long-term implantation particularly for those within the bone (p<0.01). Micro-CT scans indicated that all electrodes stayed within the sub-scalp layers. All pegs remained within the burr holes as implanted with no evidence of extrusion. Eight of 10 disks partially eroded into the bone by 1.0mm from the surface of the skull. The ring arrays remained within the sub-scalp layers close to implantation site. Histology revealed that the electrodes were encapsulated in a thin fibrous tissue adjacent to the pericranium. Overlying this was a loose connective layer and scalp. Erosion into the bone occurred under the rim of the sub-pericranial disk electrodes. CONCLUSIONS: The results indicate that the peg electrodes provided high quality EEG, mechanical stability, and lower chewing artifact. Whereas, ring electrode arrays tunneled under the scalp enable minimal surgical techniques to be used for implantation and removal.