'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.

An ethnography study exploring factors that influence social isolation in care home residents living with dementia and hearing loss.

BACKGROUND: Hearing loss and dementia are highly prevalent conditions amongst older adults living in residential care. The consequences of living with these conditions may include social withdrawal and reduced communication opportunities. We sought to examine patterns of communication and interaction in residential care and explore resident, staff, and relative perspectives within two care homes located in Birmingham, UK. This enabled an understanding of how communication environments contributed to social isolation. METHODS: This work used ethnography methodology to explore mechanisms that created and maintained social isolation in older adults living with dementia and hearing loss. A planning and engagement phase took place in four care homes. This was followed by an environmental audit, observations, and interviews. Data generated were analysed using Grounded Theory methods. RESULTS: There were 33 participants (16 residents, 11 care staff, and six relatives) who took part in the observations and interviews. Residents experienced social isolation through lack of meaningful conversation with others and being misunderstood. Additionally, observations of residents' interactions informed the overall findings. A Grounded Theory model was employed to explain the core phenomenon of social isolation. The main contributors were internal and external barriers to communication, and reduced opportunities for meaningful conversation. CONCLUSIONS: There is a wide range of social isolation that care home residents experience. This was not always associated with the severity of hearing loss but rather communication ability. Simple interventions such as staff dining with residents and focussing on improving communication could reduce social isolation within residential care settings.

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.

Clinical physiologists' experiences of working with people with nonepileptic attack disorder: A qualitative study.

OBJECTIVES: To explore the perspectives of clinical physiologists on working with patients with nonepileptic attack disorder (NEAD). Nonepileptic attack disorder is a medically unexplained symptom frequently encountered by clinical physiologists in the field of neurophysiology. Studies in healthcare professionals show that they often find patients with medically unexplained symptoms challenging, uncomfortable, and frustrating to interact with. Clinical physiologists spend a substantial amount of time with patients and are key to the assessment of the condition. It is not known how physiologists experience working with patients with NEAD. METHODS: Semi-structured interviews were conducted with clinical physiologists who frequently work with these patients. Interviews were recorded, transcribed, and analyzed according to grounded theory methodology. RESULTS: Twelve participants including current trainees and qualified clinical physiologists working in neurophysiology were interviewed for the study. Participants described the experience of working with people with NEAD as anxiety provoking and unpredictable. The sources of this anxiety were the nature of the psychological aspects of the condition, the need to preserve professional boundaries and a lack of preparedness to manage conversations about distress or the psychological factors impacting the NEAD. CONCLUSIONS: There is a risk that patient care is compromised by the lack of preparation and skills training of physiologists. PRACTICE IMPLICATIONS: Physiologists need further training in counseling skills to increase tolerance to emotionally laden content in patient accounts and knowledge of suitable referral routes.

A multi-site service evaluation of the tinnitus care decision aid.

OBJECTIVE: Shared decision-making is a principle of health care delivery across the world. The first international standard decision aid for tinnitus care was developed in 2018. This decision aid is in use across the UK. It is free to use and access from the British Tinnitus Association website. Our objective was to compare routine care with the care that also included the decision aid as part of care for their patients. DESIGN: A multi-site service evaluation included pre-post comparison of decisional conflict in sequential new patients seeking help with tinnitus. Informal interviews with staff and service managers explored how practical and feasible the decision aid was in routine practice. STUDY SAMPLE: We present data from four contrasting clinical services, including services in England and Wales, acute and community services and those operated by Hearing Therapists and Audiologists. RESULTS: Across these contrasting services, the inclusion of the decision aid was associated with a reduction in decisional conflict in patients. The decision aid was feasible to administer, acceptable to patients and clinicians without creating a burden in appointments. CONCLUSIONS: These evaluations suggest that the decision aid is feasible to administer and reduces patient decisional conflict. It appears to benefit clinical services in practice.

How do patients decide on interventions for single sided deafness? A qualitative investigation of patient views.

BACKGROUND: Single-sided deafness presents communication challenges for adults. There are a range of care options, including CROS hearing aids, available but little is known about patient preferences for these interventions. OBJECTIVE: The objective of this study was to understand the viewpoints of patients making decisions about audiological interventions they use. METHODS: A constructivist worldview using thematic analysis to undertake a constant comparative analysis of 8 semi-structured interviews. SAMPLING: Participants were recruited from Portsmouth Hospitals University NHS Trust audiology service in England. FINDINGS: The results of the study describe ongoing iterative judgements being made by participants, informed by their access to information, effectiveness of audiological interventions, stigma, barriers to accessing care, and constant cost-benefit analyses being made. The key factors involved in decision-making by individuals with Single-sided deafness (SSD) are discussed. CONCLUSIONS: This study represents the first in-depth exploration of the individual's lifeworld related to which factors influence use of different audiological interventions by individuals with SSD. It highlights the complex and ongoing nature of how decisions are made by these individuals and identifies the need for greater information provision by clinicians, such as through use of a decision aid tool.

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.

Exploring how parents of children with unilateral hearing loss make habilitation decisions: a qualitative study.

OBJECTIVE: This study sought to explore the decision making needs of parents managing the hearing and communication needs of children with unilateral hearing loss. DESIGN: An inductive, qualitative method was used. The data were analysed using a constant comparative approach, consistent with Grounded Theory method. STUDY SAMPLE: Twenty one families participated in interviews yielding data on twenty two children. Each of these families had at least one child with unilateral hearing loss. The age range of the children varied from four months to sixteen years old. All parents were English speaking and received care from National Health Service Audiology departments across the United Kingdom. RESULTS: Parents valued professionals' opinions, but information provision was inconsistent. As their children mature, parents increasingly valued their child's input. Parent-child discussions focussed on how different management strategies fit their child's preferences. Parents were proactive in obtaining professional advice, and integrating this with their own iterative assessment of their child's performance. CONCLUSIONS: Decision making is an iterative process. Parents make nuanced decisions which aim to preserve a sense of what is normal for them. Clinicians need to recognise the parental view, including where it may contrast with a medicalised or clinical view.

How can sound generating devices support coping with tinnitus?

OBJECTIVES: To understand how individuals with tinnitus perceive their sound generating devices help them in managing their tinnitus. DESIGN: A qualitative interview based study employing grounded theory methodology to establish a theory as to the mechanisms that sound therapies contribute to coping with tinnitus. Ten National Health Service patient participants (who had been issued with sound generating devices from an Audiology department in England) participated in in depth interviews. RESULTS: This study identified that sound therapies helped create a sense of escapism and control. In addition, the process of obtaining devices created a sense of validation of the patient and their tinnitus. These mechanisms restore the previously disrupted harmony between the self and body. CONCLUSION: Sound generating devices can assist coping through a number of mechanisms. There is no evidence that they ablate or remove perception of tinnitus. This study contributes novel theory based on patient accounts as to the potential benefits of sound generating device use.

What makes someone choose cochlear implantation? An exploration of factors that inform patient decision making.

Objective: Our objective was to understand the factors that determine whether an adult who is eligible for cochlear implantation (CI) choose to take up or not take up the implant.Design: We conducted a qualitative in-depth interview study, informed by grounded theory methods of constant comparison to build a theory to describe why and how people decide to opt for CI or not.Study sample: Our samples were patients from an audiology service in England.Results: Our results describe the key factors in weighing up risks and benefits. These are influenced by living context and support, information and social identity. We identify the key features that impact decision making for adults eligible for cochlear implants. The importance of the patient lifeworld view is discussed.Conclusions: This qualitative study provides the first in depth examination of how and why patients do and do not take up the offer of cochlear implants. It highlights the complex and iterative nature of this decision making and the individualised risks that trade off benefits of implantation.

Tinnitus groups: A model of social support and social connectedness from peer interaction.

Tinnitus is a chronic condition for which there is no medical treatment. Tinnitus groups are a widely available resource for people with tinnitus. OBJECTIVES: Our objectives were to explore the active ingredients of tinnitus support groups in terms of their mechanisms for providing support, the contextual factors that elicit such mechanisms, and the outcomes in terms of coping enhancement. DESIGN: We adopted a pluralist and iterative approach informed by the realist evaluation method. METHODS: We conducted ethnographic data generation at tinnitus support groups involving observations (n = 160), focus groups (n = 130), and individual interviews (n = 20). Inductive analyses were conducted following the constant comparison method of grounded theory. We then interrogated the inductive themes to identify evidence of Contexts, Mechanisms, and Outcomes. We then produced a model which was tested in a survey of tinnitus group members (n = 65) in effect providing large-scale respondent validation of the data-driven model created through our inductive analysis. RESULTS: We identified that tinnitus groups can facilitate social connectedness between group members. This experience appeared to build resilience among those experiencing tinnitus-related distress. Groups also played a role in building a sense of control related to knowledge and information sharing. Additionally, we identified risks associated with not accessing social support in a group environment. CONCLUSIONS: Our findings contribute to the growing understanding of the power of social connectedness as building shared social identity when living with tinnitus. Statement of contribution What is already known on this subject? Tinnitus is a prevalent condition with approximately 10-15% of the population experiencing a spontaneous sound without obvious source. Tinnitus is an invisible health and chronic condition. People with tinnitus experience high levels of distress, anxiety, and depression. Group support is beneficial to people with many health problems. What does this study add? This study describes the mechanisms by which tinnitus support groups can support coping in tinnitus. This is the first study to comprehensively explore the views of those who attend tinnitus groups. The study identifies the key features of support groups that facilitate social connectedness among group members. The most valued features of groups are the knowledge and information provided, the sense of belonging communicated to group members, and the creation and maintenance of a sense of hope towards the tinnitus. This study contributes new insights to both the tinnitus field and adds to the literature on support groups in health.

Lifeworld interpretation of tinnitus.

Lifeworld-led care provides a route through which research and practice can navigate the 'biopsychosocial' allowing us to overcome the shortfalls of the medical model and enabling us to prioritise humanity in the care of people living with tinnitus. In this article, we sought to explore qualitative descriptions of life with tinnitus. We aimed to address the question 'what it is like to live with tinnitus?' In doing so we examined qualitative studies and provide suggestions about key themes that seem consistent. This is a narrative, thematic overview of the way lifeworld has been conceptualised and explored in tinnitus research.

A mixed-methods study of the management of hearing loss associated with otitis media with effusion in children with Down syndrome.

OBJECTIVES: To scope current service provision across England for management of otitis media with effusion and hearing loss in children with Down syndrome; to explore professional decision-making about managing otitis media with effusion and hearing loss; and to explore patient and public views on the direction of future research. DESIGN: Mixed methods including a service evaluation of NHS clinical practice through a structured telephone survey; a qualitative study of professional decision-making with in-depth interviews collected and analysed using grounded theory methods; patient/public involvement consultations. PARTICIPANTS: Twenty-one audiology services in England took part in the evaluation; 10 professionals participated in the qualitative study; 21 family members, 10 adults with Down syndrome and representatives from two charities contributed to the consultations. RESULTS: There was variation across services in the frequency of routine hearing surveillance, approaches to managing conductive hearing loss in infancy and provision of hearing aids and grommets. There was variation in how professionals describe their decision-making, reflecting individual treatment preferences, differing approaches to professional remit and institutional factors. The consultations identified that research should focus on improving practical support for managing the condition and supporting decision-making about interventions. CONCLUSIONS: There is system-level variation in the provision of services and individual-level variation in how professionals make clinical decisions. As a consequence, there is inequity of access to hearing health care for children with Down syndrome. Future research should focus on developing core outcomes for research and care, and on improving decision support for families.

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 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.

A qualitative investigation of decision making during help-seeking for adult hearing loss.

OBJECTIVE: The Any Qualified Provider framework in the National Health Service has changed the way adult audiology services are offered in England. Under the new rules, patients are being offered a choice in geographical location and audiology provider. This study aimed to explore how choices in treatment are presented and to identify what information patients need when they are seeking help with hearing loss. DESIGN: This study adopted qualitative methods of ethnographic observations and focus group interviews to identify information needed prior to, and during, help-seeking. Observational data and focus group data were analysed using the constant comparison method of grounded theory. STUDY SAMPLE: Participants were recruited from a community Health and Social Care Trust in the west of England. This service incorporates both an Audiology and a Hearing Therapy service. Twenty seven participants were involved in focus groups or interviews. RESULTS: Participants receive little information beyond the detail of hearing aids. Participants report little information that was not directly related to uptake of hearing aids. CONCLUSIONS: Participant preferences were not explored and limited information resulted in decisions that were clinician-led. The gaps in information reflect previous data on clinician communication and highlight the need for consistent information on a range of interventions to manage hearing loss.