The quality of care delivered to residents in long-term care in Australia: an indicator-based review of resident records (CareTrack Aged study).

BACKGROUND: This study estimated the prevalence of evidence-based care received by a population-based sample of Australian residents in long-term care (LTC) aged ≥ 65 years in 2021, measured by adherence to clinical practice guideline (CPG) recommendations. METHODS: Sixteen conditions/processes of care amendable to estimating evidence-based care at a population level were identified from prevalence data and CPGs. Candidate recommendations (n = 5609) were extracted from 139 CPGs which were converted to indicators. National experts in each condition rated the indicators via the RAND-UCLA Delphi process. For the 16 conditions, 236 evidence-based care indicators were ratified. A multi-stage sampling of LTC facilities and residents was undertaken. Trained aged-care nurses then undertook manual structured record reviews of care delivered between 1 March and 31 May 2021 (our record review period) to assess adherence with the indicators. RESULTS: Care received by 294 residents with 27,585 care encounters in 25 LTC facilities was evaluated. Residents received care for one to thirteen separate clinical conditions/processes of care (median = 10, mean = 9.7). Adherence to evidence-based care indicators was estimated at 53.2% (95% CI: 48.6, 57.7) ranging from a high of 81.3% (95% CI: 75.6, 86.3) for Bladder and Bowel to a low of 12.2% (95% CI: 1.6, 36.8) for Depression. Six conditions (skin integrity, end-of-life care, infection, sleep, medication, and depression) had less than 50% adherence with indicators. CONCLUSIONS: This is the first study of adherence to evidence-based care for people in LTC using multiple conditions and a standardised method. Vulnerable older people are not receiving evidence-based care for many physical problems, nor care to support their mental health nor for end-of-life care. The six conditions in which adherence with indicators was less than 50% could be the focus of improvement efforts.

The (in)visibility of deafness: Identity, stigma, quality of life and the potential role of totally implantable cochlear implants.

INTRODUCTION: The disclosure of deafness is complex, given the historic and on-going stigma associated with being deaf. The aim of this study was to explore how identity, stigma, and quality of life may be impacted when using cochlear implants (CIs) and totally implantable cochlear implants (TICIs). The physical difference between these two assistive listening devices is significant, given many CI users opt to hide their sound processor behind hair or headwear, in contrast to TICIs (an emerging technology) whereby all components are implanted internally and thus invisible. METHODS: This qualitative study involved semistructured interviews and demographic questionnaires with 12 adult participants with more than 1 year of experience using their CI. Participants were recruited Australia-wide through community organisations that support deaf and hard-of-hearing individuals. Interview transcripts were analysed thematically, with the themes generated through an inductive process, with consensus generated through group working with three members from the research team. RESULTS: Four major themes were identified: (1) CI challenges; (2) The importance of social and support networks; (3) Identity and disclosure and (4) Concerns about TICIs. The underlying finding was centred around the construction of deaf identity. Participant attitudes were generally categorised as 'Loud and proud', with the recognition that displaying the CI was an extension of self, something to be proud of, and a means to normalise deafness; or 'Out of sight and out of mind', which sought to minimise the visibility of deafness. While both identities differed in how deafness is disclosed, they are fundamentally related to the same ideas of self-agency and empowerment. CONCLUSION: TICIs present a novel opportunity-the ability for CI users to control the visibility of their deafness and thus control disclosure. This study explored the impact of stigma and categorised two core identities that CI users construct. Future directions include investigating potential CI candidates, to explore if TICIs may be a facilitator to CI uptake. PATIENT OR PUBLIC CONTRIBUTION: The semistructured interview guide was developed in consultation with adults with CIs. Feedback led to adjustments and improvement to the interview guide. In addition, F. R. has a lived experience with hearing loss, and C. Y. L. is an executive committee member for a nonprofit charity organisation that supports families that are D/deaf and hard-of-hearing.

Determinants of women's agency in accessing and utilising reproductive healthcare services; a systematic review.

Women's agency is vital to access and use reproductive healthcare services, particularly in contexts where patriarchal beliefs and cultural norms limit women's desire to act on their goals or affect their access to essential resources. However, less is known about what resources enable women to exercise agency to access these services. A comprehensive systematic review was conducted to summarise existing evidence on the determinants of women's agency in accessing and using reproductive healthcare services. Various determinants were identified, including individual characteristics; household structure; reproductive health-related determinants; social relations; and economic factors. These determinants of women's agency in accessing reproductive healthcare services were strongly associated with social norms and cultural beliefs. Several gaps in the literature included inconsistent definitions and measurement of women's agency; lack of considering cultural sensitivities and socially acceptable practices in the conceptualisation and measurement of women's agency; a narrow focus on services related predominantly to pregnancy and birth, with other aspects of services including sexual health and safe abortion being largely unreported. The literature focused on developing countries in Africa and Asia, leaving a significant gap in knowledge about women's agency to access services in other geographical areas or among immigrant or refugee populations living in developed countries.

Integrating training in evidence-based medicine and shared decision-making: a qualitative study of junior doctors and consultants.

BACKGROUND: In the past, evidence-based medicine (EBM) and shared decision-making (SDM) have been taught separately in health sciences and medical education. However, recognition is increasing of the importance of EBM training that includes SDM, whereby practitioners incorporate all steps of EBM, including person-centered decision-making using SDM. However, there are few empirical investigations into the benefits of training that integrates EBM and SDM (EBM-SDM) for junior doctors, and their influencing factors. This study aimed to explore how integrated EBM-SDM training can influence junior doctors' attitudes to and practice of EBM and SDM; to identify the barriers and facilitators associated with junior doctors' EBM-SDM learning and practice; and to examine how supervising consultants' attitudes and authority impact on junior doctors' opportunities for EBM-SDM learning and practice. METHODS: We developed and ran a series of EBM-SDM courses for junior doctors within a private healthcare setting with protected time for educational activities. Using an emergent qualitative design, we first conducted pre- and post-course semi-structured interviews with 12 junior doctors and thematically analysed the influence of an EBM-SDM course on their attitudes and practice of both EBM and SDM, and the barriers and facilitators to the integrated learning and practice of EBM and SDM. Based on the responses of junior doctors, we then conducted interviews with ten of their supervising consultants and used a second thematic analysis to understand the influence of consultants on junior doctors' EBM-SDM learning and practice. RESULTS: Junior doctors appreciated EBM-SDM training that involved patient participation. After the training course, they intended to improve their skills in person-centered decision-making including SDM. However, junior doctors identified medical hierarchy, time factors, and lack of prior training as barriers to the learning and practice of EBM-SDM, whilst the private healthcare setting with protected learning time and supportive consultants were considered facilitators. Consultants had mixed attitudes towards EBM and SDM and varied perceptions of the role of junior doctors in either practice, both of which influenced the practice of junior doctors. CONCLUSIONS: These findings suggested that future medical education and research should include training that integrates EBM and SDM that acknowledges the complex environment in which this training must be put into practice, and considers strategies to overcome barriers to the implementation of EBM-SDM learning in practice.

Measuring the quality of skin cancer management in primary care: A scoping review.

Skin cancer is a growing global problem and a significant health and economic burden. Despite the practical necessity for skin cancer to be managed in primary care settings, little is known about how quality of care is or should be measured in this setting. This scoping review aimed to capture the breadth and range of contemporary evidence related to the measurement of quality in skin cancer management in primary care settings. Six databases were searched for relevant texts reporting on quality measurement in primary care skin cancer management. Data from 46 texts published since 2011 were extracted, and quality measures were catalogued according to the three domains of the Donabedian model of healthcare quality (structure, process and outcome). Quality measures within each domain were inductively analysed into 13 key emergent groups. These represented what were deemed to be the most relevant components of skin cancer management as related to structure, process or outcomes measurement. Four groups related to the structural elements of care provision (e.g. diagnostic tools and equipment), five related to the process of care delivery (e.g. diagnostic processes) and four related to the outcomes of care (e.g. poor treatment outcomes). A broad range of quality measures have been documented, based predominantly on articles using retrospective cohort designs; systematic reviews and randomised controlled trials were limited.

Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy.

AIMS AND OBJECTIVES: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community-based epilepsy nurse's role and responsibilities. BACKGROUND: Internationally, epilepsy nurse specialists play a key role in providing person-centred care and management of epilepsy but there is a gap in understanding of their role in the community. DESIGN: A national three-stage, mixed-method study was conducted. METHODS: One-on-one, in-depth semi-structured qualitative interviews were conducted online with 12 community-based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse-led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. RESULTS: Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID-19 pandemic experiences, role boundaries, funding, and resource availability. CONCLUSION: Community epilepsy nurses play a pivotal role in providing holistic, person-centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. RELEVANCE TO CLINICAL PRACTICE: Epilepsy nurses' person-centred approach to epilepsy management is influenced by the limited investment in epilepsy-specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. NO PATIENT OR PUBLIC CONTRIBUTION: Only epilepsy nurses' perspectives were sought.

Designing clinical indicators for common residential aged care conditions and processes of care: the CareTrack Aged development and validation study.

BACKGROUND: People who live in aged care homes have high rates of illness and frailty. Providing evidence-based care to this population is vital to ensure the highest possible quality of life. OBJECTIVE: In this study (CareTrack Aged, CT Aged), we aimed to develop a comprehensive set of clinical indicators for guideline-adherent, appropriate care of commonly managed conditions and processes in aged care. METHODS: Indicators were formulated from recommendations found through systematic searches of Australian and international clinical practice guidelines (CPGs). Experts reviewed the indicators using a multiround modified Delphi process to develop a consensus on what constitutes appropriate care. RESULTS: From 139 CPGs, 5609 recommendations were used to draft 630 indicators. Clinical experts (n = 41) reviewed the indicators over two rounds. A final set of 236 indicators resulted, mapped to 16 conditions and processes of care. The conditions and processes were admission assessment; bladder and bowel problems; cognitive impairment; depression; dysphagia and aspiration; end of life/palliative care; hearing and vision; infection; medication; mobility and falls; nutrition and hydration; oral and dental care; pain; restraint use; skin integrity and sleep. CONCLUSIONS: The suite of CT Aged clinical indicators can be used for research and assessment of the quality of care in individual facilities and across organizations to guide improvement and to supplement regulation or accreditation of the aged care sector. They are a step forward for Australian and international aged care sectors, helping to improve transparency so that the level of care delivered to aged care consumers can be rigorously monitored and continuously improved.

The Voices of Stakeholders Involved in Precision Medicine: The Co-Design and Evaluation of Qualitative Indicators of Intervention Acceptability, Fidelity and Context in PRecISion Medicine for Children With Cancer in Australia.

We report a novel approach of amalgamating implementation outcomes of acceptability and fidelity alongside context as a new way of qualitatively evaluating implementation outcomes and context of a precision medicine intervention. A rapid qualitative online proforma was co-designed with stakeholders and sent to a purposive sample of healthcare professionals involved in an early-phase clinical trial intervention. Data were analysed using Framework Analysis. A total of 24 out of 68 proformas were returned. Although some participants raised concerns about drug medication access issues, the main intervention was well accepted and understood across professional groups. Comprehension was enhanced through exposure to specialist multidisciplinary meeting arrangements. In conclusion, a rapid data collection tool and framework are now available to assess readily measurable, qualitative indicators of acceptability, fidelity of receipt and contextual fit within the dynamic precision medicine context.

Peer support and social network groups among people living with epilepsy: A scoping review.

BACKGROUND: Peer support is a unique connection formed between people who share similar experiences of illness. It is distinct from, but complementary to other forms of support or care provided by family and friends, healthcare professionals, and other service providers. The role of peer support in contributing to the wellbeing and care of people living with epilepsy (PLWE) is increasingly recognized, including via online networks and group therapy. However, little overall synthesis is available to map and conceptualize the different ways peer support contributes to the wellbeing or care of PLWE, or how it occurs via formally and informally organized social network settings. METHODS: A scoping review of peer-reviewed literature published between 1998 and 2021 was conducted using Medline, Psychinfo, Embase, Scopus, and CINAHL databases. Included studies comprised empirical research that involved people with epilepsy as the primary participants; included 'peer social support' in the study question or study setting, and included outcome measures related to peer social support or peer-related groupings. RESULTS: A total of 17 articles were included in the review. The functions of peer support for PLWE can be described as either emotional or instrumental. Emotional peer support includes a sense of empathy and encouragement gained from another person with a shared experience of illness, which can help to improve confidence for those challenged by isolation and stigma. Instrumental peer support refers to the more practical and tangible support provided by peers about treatment and support services, which can improve self-management and clarify misinformation. The mechanisms by which peer support and peer social networks materialize includes face-to-face meetings, online group gatherings, and telephone calls. As well as through organized channels, peer support can be fostered incidentally through, for example, research participation, or in clinical settings. Barriers to PLWE receiving opportunities for peer support include the perceived stigma of living with epilepsy, the high cost of transportation, or poor access to the internet to reach and meet others; enablers include the anonymity afforded by online forums and perceived trust in one's peers or forum organizers. CONCLUSIONS: This nuanced conceptualization of the different types of peer support and peer support networks, as well as the variety of barriers and enablers of peer support for PLWE, will serve to inform more effectively designed clinical care practices and service delivery tailored to the needs of PLWE. This review will inform future research in peer support as an important and emerging area of investigation.

Rasch Analysis of the Listening Effort Questionnaire-Cochlear Implant.

OBJECTIVES: Listening effort may be defined as the attentional and cognitive resources needed to understand an auditory message, modulated by motivation. Despite the use of hearing devices such as hearing aids or cochlear implants (CIs), the requirement for high listening effort remains a challenge for individuals with hearing loss. The Listening Effort Questionnaire-Cochlear Implant (LEQ-CI) is a hearing-specific patient-reported outcome measure (PROM), which has been designed for use in the CI candidacy and rehabilitation process to assess perceived listening effort in everyday life in adults with severe-profound hearing loss. The LEQ-CI has been developed in line with international consensus-based standards for best practice in PROM construction. The aim of this study was to improve the measurement precision of the LEQ-CI and to assess its psychometric measurement properties. DESIGN: A field test was undertaken with 330 CI patients from five National Health Service auditory implant centers in the United Kingdom. Participants were adults (≥18 years of age), had a severe-profound hearing loss, and met the UK candidacy criteria for cochlear implantation specified by the National Institute for Health and Care Excellence (NICE). Participants completed and returned an anonymized 29-item (each with a 5- or 7-point response option), draft version of the LEQ-CI (LEQ-CI29) and a demographic questionnaire. Rasch analysis was undertaken using Winsteps software and the partial credit model to assess rating scale function and item fit. Results informed refinements to produce a 21-item version (LEQ-CI21), which underwent a further Rasch analysis. RESULTS: The sample was predominantly female: 60.3% (n = 191). Median age of participants was 66 (range 21 to 89) years, with 7.3% (n = 24) of respondents being CI candidates and 92.7% (n = 306) being CI recipients. Mean duration of implantation was 3.8 (SD = 4.8) years. Initial Rasch analysis of the LEQ-CI29 revealed poor rating scale functioning. Collapsing the 5- and 7-point rating scales to 3- and 4-point scales and removing eight items produced a 21-item PROM (LEQ-CI21). Rasch analysis of the LEQ-CI21 showed good fit to the Rasch measurement model. No items showed misfit and dimensionality analysis supported the existence of a single Rasch dimension, defined as perceived listening effort in daily life. Person reliability was 0.91 and the person separation index was 3.28, establishing four levels of person ability. The item separation index was 9.69, confirming the item hierarchy. No items showed differential item functioning for gender or age. The item difficulty range was -0.81 to 1.05, the person ability range for nonextreme persons was -3.54 to 2.49, and the mean person ability was -0.31. CONCLUSIONS: Overall, the LEQ-CI21 was found to meet the Rasch model criteria for interval-level measurement. The LEQ-CI21 is the first PROM to be developed specifically for the measurement of perceived listening effort and one of the first patient-reported outcome measures for use with CI patients to be developed using Rasch analysis. The LEQ-CI21 has the potential to be used as a research tool and in clinical practice to evaluate perceived listening effort in daily life. Further psychometric evaluation of the LEQ-CI21 is planned.

How Patient Work Changes Over Time for People With Multimorbid Type 2 Diabetes: Qualitative Study.

BACKGROUND: The experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. OBJECTIVE: This study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. METHODS: In total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. RESULTS: Four unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible; dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence; responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity; and coming back from crisis focused on patients coping with a loss of normalcy. CONCLUSIONS: Patient work changes over time based on the experiences of the individual, and its timing and trajectory need to be considered when designing digital support interventions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2018-022163.

Knowledge and attitudes of Australian dermatologists towards sentinel lymph node biopsy for melanoma: a mixed methods study.

BACKGROUND/OBJECTIVES: In melanoma management, sentinel lymph node biopsy (SLNB) is used to stage patients and to indicate prognosis. More recently, it has been used to select patients for adjuvant therapy. This study aimed to report knowledge of and attitudes towards SLNB for patients with melanoma among Australian dermatologists. METHODS: Mixed methods study using cross-sectional questionnaires (n = 88) and semi-structured interviews (n = 13), May-September 2019. RESULTS: Of the dermatologists surveyed, 56% thought SLNB had an important role in melanoma management, 26% were unsure and 18% thought SLNB unimportant. Of the 92% who would discuss SLNB with their patients, the main stated value of SLNB was for assessing eligibility for adjuvant therapies (79%); only 60% indicated SLNB was of value for providing prognostic information, and just over half (53%) thought it could improve staging. Interview data indicated that attitudes towards SLNB are shifting among dermatologists, driven by data from landmark clinical trials and the influence of professional networks. Accordingly, interviewees adopted one of three positions in relation to SLNB: (a) believed in utility of SLNB and adhered to the guidelines; (b) were unconvinced about utility of SLNB but adhered to the guidelines; and (c) were unconvinced about utility of SLNB and did not adhere to the guidelines. CONCLUSION: Although most of the dermatologists surveyed were familiar with and follow the SLNB recommendations, some disagreement with and distrust of the recommendations was evident. Greater acceptance of the SLNB recommendations appeared to be driven by the improved outcomes demonstrated in stage III patients receiving adjuvant systemic therapy.

Hospital service utilization trajectories of individuals living with epilepsy in New South Wales, Australia, 2012-2016: A population-based study.

OBJECTIVES: This study aimed to examine five-year trajectories of hospital service utilization among individuals living with epilepsy in New South Wales (NSW), Australia, and to identify factors predictive of trajectory group membership. METHODS: This study used group-based trajectory modeling of hospital admissions over a five-year period for individuals living with epilepsy who had an epilepsy-related hospitalization during 1 January 2012 and 31 December 2012 in NSW, Australia (n = 5762). RESULTS: The analysis revealed the following five distinct hospital service utilization trajectory groups: "one-off users" (Group 1; 22.9%), "low-chronic users" (Group 2; 47.1%), "moderate-declining users" (Group 3; 10.3%), "moderate-chronic users" (Group 4; 18.3%), and "high-chronic users" (Group 5; 1.5%). There were key features that defined trajectory group membership, in particular the relative proportions of group members with chronic health conditions, other comorbid conditions, refractory epilepsy, and status epilepticus. For instance, "high-chronic users" (Group 5) had higher proportions of individuals with chronic health conditions (34.8%) and refractory epilepsy (19.1%); "moderate-declining users" (Group 3) had higher proportions of individuals with chronic health conditions (35.1%) and status epilepticus (9.8%); and "low-chronic users" (Group 2) had the lowest proportion of individuals with chronic health conditions. CONCLUSION: It is important to gain a better understanding of hospital service utilization among individuals living with epilepsy. This research has identified trajectory groups of hospital service utilization profiles of individuals living with epilepsy. Identification of predictors of trajectory group membership allows targeting of strategies to reduce hospital admissions, inform healthcare service delivery, and improve the health and wellbeing of individuals living with epilepsy.

Enhancing quality of life among epilepsy surgery patients: Interlinking multiple social and relational determinants.

BACKGROUND: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. METHOD: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. RESULTS: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual 'spin-off' effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. CONCLUSION: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.

Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia.

OBJECTIVES: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. METHODS: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. FINDINGS: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. CONCLUSION: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.

Frameworks for Change in Hearing Research: Valuing Qualitative Methods in the Real World.

In this article, we examine ecological validity in hearing science from a qualitative methodological perspective. We present an overview of qualitative methods, presenting their key characteristics and contrasting these techniques with quantitative approaches to enquiry. We argue that ecological validity sits at the heart of the qualitative paradigm and seek to clearly emphasize the methodological gap that could be effectively filled by qualitative or mixed methods. In doing so, we discuss qualitative methods that may work particularly well in enhancing ecological validity in hearing science and explore their range of applications in this field. These approaches can be applied to a wide range of hearing health research questions to present a unique understanding of people's experiences of disease and disability, indicating gradations of personal health and illness in nuanced ways. We acknowledge and commend the current expansion of qualitative methods within hearing science and present recommendations for increasing ecological validity, both in the design of future studies and in the context of the wider research cycle. We call on qualitative researchers to strive for transparency, rigor, and trustworthiness and highlight challenges to be overcome if qualitative methods are to contribute to effective, efficient research strategies. To facilitate the transference of high-quality research findings into practice, we stress the need for joined-up working to create a research culture that promotes coproduction of ecologically valid research designs, involving not only hearing researchers but also implementation scientists, hearing healthcare professionals and, most importantly, people with hearing loss for whom these efforts could make a difference.

Barriers and Facilitators to Cochlear Implant Uptake in Australia and the United Kingdom.

OBJECTIVES: Hearing loss (HL) affects a significant proportion of adults aged >50 years by impairing communication and social connectedness and, due to its high prevalence, is a growing global concern. Cochlear implants (CIs) are effective devices for many people with severe or greater sensorineural HL who experience limited benefits from hearing aids. Despite this, uptake rates globally are low among adults. This multimethod, multicountry qualitative study aimed to investigate the barriers and facilitators to CI uptake among adults aged ≥50 years. DESIGN: Adult CI and hearing aid users with postlingual severe or greater sensorineural HL, general practitioners, and audiologists were recruited in Australia using purposive sampling, and a comparative sample of audiologists was recruited in England and Wales in the United Kingdom. Participants were interviewed individually, or in a focus group, completed a demographic questionnaire and a qualitative survey. Data were analyzed using thematic analysis. RESULTS: A total of 143 data capture events were collected from 55 participants. The main barriers to CI uptake related to patients' concerns about surgery and loss of residual hearing. Limited knowledge of CIs, eligibility criteria, and referral processes acted as barriers to CIs assessment referrals by healthcare professionals. Facilitators for CI uptake included patients' desire for improved communication and social engagement, and increased healthcare professional knowledge and awareness of CIs. CONCLUSIONS: There are numerous complex barriers and facilitators to CI uptake. Knowledge of these can inform the development of targeted strategies to increase CI referral and surgery for potential beneficiaries.

The Quest for Ecological Validity in Hearing Science: What It Is, Why It Matters, and How to Advance It.

Ecological validity is a relatively new concept in hearing science. It has been cited as relevant with increasing frequency in publications over the past 20 years, but without any formal conceptual basis or clear motive. The sixth Eriksholm Workshop was convened to develop a deeper understanding of the concept for the purpose of applying it in hearing research in a consistent and productive manner. Inspired by relevant debate within the field of psychology, and taking into account the World Health Organization's International Classification of Functioning, Disability, and Health framework, the attendees at the workshop reached a consensus on the following definition: "In hearing science, ecological validity refers to the degree to which research findings reflect real-life hearing-related function, activity, or participation." Four broad purposes for striving for greater ecological validity in hearing research were determined: A (Understanding) better understanding the role of hearing in everyday life; B (Development) supporting the development of improved procedures and interventions; C (Assessment) facilitating improved methods for assessing and predicting ability to accomplish real-world tasks; and D (Integration and Individualization) enabling more integrated and individualized care. Discussions considered the effects of variables and phenomena commonly present in hearing-related research on the level of ecological validity of outcomes, supported by examples from a few selected outcome domains and for different types of studies. Illustrated with examples, potential strategies were offered for promoting a high level of ecological validity in a study and for how to evaluate the level of ecological validity of a study. Areas in particular that could benefit from more research to advance ecological validity in hearing science include: (1) understanding the processes of hearing and communication in everyday listening situations, and specifically the factors that make listening difficult in everyday situations; (2) developing new test paradigms that include more than one person (e.g., to encompass the interactive nature of everyday communication) and that are integrative of other factors that interact with hearing in real-life function; (3) integrating new and emerging technologies (e.g., virtual reality) with established test methods; and (4) identifying the key variables and phenomena affecting the level of ecological validity to develop verifiable ways to increase ecological validity and derive a set of benchmarks to strive for.

Parent recommendations to support physical activity for families with young children: Results of interviews in deprived and affluent communities in South Wales (United Kingdom).

BACKGROUND: Physical inactivity is the fourth leading cause of mortality worldwide. Early childhood is a critical period when healthy behaviours can be instilled for a future active lifestyle. We explored community, societal and environmental factors affecting child and family physical activity and sought parent recommendations to support physical activity in families with young children. METHODS: We interviewed 61 parents expecting a child or with a baby ≤12 months (35 mother and father paired interviews and 26 interviews with mothers only). We purposively sampled families for neighbourhood deprivation status (Townsend Index; 26 affluent; 35 deprived). We conducted thematic analysis of interview transcripts using Bronfenbrenner's socio-ecological framework to guide interpretation. RESULTS: We identified four themes: work family-life balance; spaces for activity; beliefs and attitudes; and physical activity facilitators. We found that parents from deprived neighbourhoods were more likely to be underactive because of a complex web of community, social and personal factors which reduced motivation and hindered opportunity for physical activity. To increase knowledge and opportunity, respondents suggested 'help not tell' messages covering 'why', 'how' and 'where' information about physical activity, and using physical activity to support community engagement and social interaction. CONCLUSIONS: Recommendations from parents highlight effective communication about the importance of early child and family physical activity and improved community access to safe facilities and opportunities. Both parents need to be engaged in designing interventions to support greater physical activity and healthy behaviours which are relevant and achievable in individuals' lives.

Adults' cochlear implant journeys through care: a qualitative study.

BACKGROUND: Cochlear implants (CIs) can provide a sound sensation for those with severe sensorineural hearing loss (SNHL), benefitting speech understanding and quality of life. Nevertheless, rates of implantation remain low, and limited research investigates journeys from traditional hearing aids to implantable devices. METHOD: Fifty-five adults (≥ 50 years), hearing aid users and/or CI users, General Practitioners, and Australian and United Kingdom audiologists took part in a multi-methods study. Focus groups, interviews, and surveys were thematically analysed. RESULTS: One hundred forty-three data-capture events disclosed 2 themes: 1) "The burden of hearing loss and the impact of Cochlear Implants", and 2) "Professional Support and Practice, and HCPs Roles and Responsibilities". CONCLUSIONS: Care experience can include convoluted, complex journeys towards cochlear implantation. The significant impact of this, as hearing loss progresses, motivates people to consider implants, but they and healthcare professionals need clear supported with defined referral pathways, and less system complexity.