'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.

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.

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.

Patient perceptions of cognitive screening in adult audiology services: A qualitative exploration.

Introduction: Both hearing loss and dementia are extremely pervasive, especially amongst older adults. As hearing loss and dementia have common symptoms, misdiagnosis can be common, and failure to address hearing loss for people with dementia could accelerate cognitive decline. The timely detection of cognitive impairment is clinically important, however the use of cognitive assessments in adult audiology services is a hotly debated topic. Although the early detection of cognitive impairment may improve patient care and quality of life, patients attending audiology services for hearing assessment might not expect to be asked questions about their cognition. The aim of this study was to qualitatively explore patient and public perspectives and preferences on the use of cognitive screening within adult audiology services. Methods: Quantitative and qualitative data were gathered from an online survey and a workshop. Descriptive statistics were applied to quantitative data and an inductive thematic analysis was performed on free-text responses. Results: In total, 90 respondents completed the online survey. Overall, cognitive screening in audiology was reported to be acceptable to participants (92%). A reflexive thematic analysis of the qualitative data reported four themes: i) knowledge of cognitive impairment and screening, ii) implementation of cognitive screening, iii) impact of screening on patient and iv) contributions to future care and research. A workshop was held with five participants to discuss and reflect on the findings in more detail. Discussion: Participants found cognitive screening to be acceptable within adult audiology services providing audiologists had suitable training, and sufficient explanation and justification were provided. However, implications such as additional time and staff resource and supplementary training for audiologists would be required to address participants concerns.

Evaluating the implementation and impact of a new model of care for integrating children and young people's acute mental healthcare in a paediatric setting: a protocol for a realist, mixed-methods approach.

INTRODUCTION: The mental health of children and young people in the UK has been declining and has continued to worsen throughout the pandemic, leading to an increase in mental health-related emergencies. In response, the Best for You programme was developed as a new service designed to integrate mental healthcare for children and young people between acute hospital and community services. The programme is comprised of four new services: a rapid assessment young people's centre with dual-trained staff, a co-located day service offering family-based care,a digital hub, designed to integrate with the fourth element of the model, namely community support and mental health services. This evaluation protocol aims to assess the development, implementation and outcomes of the Best for You programme and develops a scalable model that could be implemented in other parts of the National Health Service (NHS). METHODS AND ANALYSIS: This mixed-methods realist evaluation aims to delineate the components of the system to assess their interdependent relationships within a wider context. Data collection will include interviews, participant observations, focus groups and the collection of local quantitative healthcare data. The research will be conducted across four phases. Phase 1-captures the development of the underlying programme theory. Phase 2-a process evaluation testing the programme theory. Phase 3- an outcome and economic evaluation. Phase 4-consolidation of learning from phases 1-3 to identify barriers, facilitators and wider contextual factors that have shaped implementation drawing on the Consolidated Framework for Implementation Research. ETHICS AND DISSEMINATION: Ethical approval for the evaluation was received from the NHS local ethics committee. Embedded within the evaluation is a formative review to feedback and share learning with stakeholders to scale-up the programme. Findings from this study will be disseminated in peer-reviewed journals as well as presentations to be useful to service user organisations and networks.

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.

The development of a decision aid for tinnitus.

OBJECTIVE: To develop a decision aid for tinnitus care that would meet international consensus for decision aid quality. DESIGN: A mixed methods design that included qualitative in-depth interviews, literature review, focus groups, user testing and readability checking. STUDY SAMPLE: Patients and clinicians who have clinical experience of tinnitus. RESULTS: A decision aid for tinnitus care was developed. This incorporates key evidence of efficacy for the most frequently used tinnitus care options, together with information derived from patient priorities when deciding which choice to make. CONCLUSION: The decision aid has potential to enable shared decision making between clinicians and patients in audiology. The decision aid meets consensus standards.

Shared decision-making in tinnitus care - An exploration of clinical encounters.

OBJECTIVES: This study examined clinical encounters between clinicians and patients to determine current practice for the diagnosis and treatment of tinnitus. The objective was to develop an understanding of the ideal clinical encounter that would facilitate genuine shared decision-making. DESIGN: Video ethnography was used to examine clinical encounters for the diagnosis and treatment of tinnitus. METHODS: Clinical encounters were video-recorded. Patients were interviewed individually following their clinic appointment. Data were analysed using constant comparison techniques from Grounded Theory. Initial inductive analyses were then considered against theoretical conceptualizations of the clinician-patient relationship and of the clinical encounter. RESULTS: Alignment between clinician and patient was found to be essential to a collaborative consultation and to shared decision-making. Clinician groups demonstrated variation in behaviour in the encounter; some asked closed questions and directed the majority of the consultation; others asked open questions and allowed patients to lead the consultation. CONCLUSIONS: A shift away from aetiology and physiological tests is needed so that tinnitus is managed as a persistent unexplained set of symptoms. This uncertainty is challenging for the medical professionals; lessons could be learned from the use of therapeutic skills. Further research is required to test techniques, such as the use of decision aids, to determine how we might create the ideal clinical encounter. Statement of contribution What is already known on this subject? Tinnitus is a condition in which sound is heard in the absence of an external source. Current approaches to managing tinnitus vary depending on clinical site (Hoare & Hall, ). In most instances, tinnitus does not have a straightforward medical cause. Tinnitus care is challenging to traditional biomedical encounters because the process of diagnosis may not lead to a defined treatment. Clinicians are required to consider not only what the tinnitus sounds like but more importantly, what it means for the affected individual. This requires a careful and skilled approach to eliciting a patient's current behaviour, coping, and preferences for both outcomes and treatment approaches. What does this study add? We provide the first in-depth description of decision-making in clinical services for tinnitus. Findings suggest a shift in focus is required to move away from the current prioritization of the biomedical treatment of tinnitus. There is variation to the extent different clinicians were able to deal with the uncertainty presented by the symptoms of tinnitus.