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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Introduction. Gender affirming hormone therapy (GAHT) is an important aspect of health care for many transgender and non-binary (TNB) people, but little is known about the long-term outcomes for TNB people in Aotearoa New Zealand (NZ). Pathways to access GAHT are shifting from secondary care towards primary care, so this is an opportune time to commence local research on long-term health and wellbeing outcomes for people initiating GAHT. Aim. This paper aims to report on the key findings from four meetings held to inform the design of a prospective cohort study to follow the journey of people initiating GAHT in primary and secondary care settings in NZ. Methods. We worked with a community advisory group of six TNB young people and sought input from 14 health care providers involved in the care of TNB people initiating GAHT (GPs, secondary care doctors, and mental health providers). Semi-structured interview schedules were used to guide discussions. Template analysis was used to initially code data based on themes identified from the interview schedule and new themes from discussions were added. Results. Participants shared ideas about recruitment and data collection priorities for baseline and follow-up surveys. These included understanding the journey to starting hormone therapy (information-seeking, decision-making), access to services for GAHT initiation, appropriateness of information provision, receipt of the first prescription, goals for and experience of GAHT, and the unique needs of non-binary people. Discussion. Input from a TNB advisory group and health care professionals has informed the development of a survey that will be used to understand the experience of, and outcomes for, people starting GAHT in NZ. Findings from this planned prospective cohort study have the potential to improve access to GAHT for TNB people who wish to pursue this option. [ABSTRACT FROM AUTHOR]

Introduction. Pacific peoples experience inequity in accessing hearing health care and are disproportionately exposed to the underlying determinants impacting ear and hearing health in Aotearoa New Zealand. Understanding community members’ worldviews, including perspectives, beliefs and values, is essential in developing appropriate and responsive hearing healthcare services to meet the needs of Pacific peoples. Aim. The purpose of this paper is to understand the worldviews, knowledge and beliefs held by Pacific peoples regarding hearing health in Aotearoa New Zealand. Methods. A mixed-methods approach was used. Twelve semistructured face-to-face interviews were conducted with Pacific community members. Twentyfive participants completed an online questionnaire. A simultaneous, integrated mixed-methods approach was used to analyse the qualitative and quantitative data. Results. Five main themes were established, which were: The Meaning of Hearing; Causes of hearing loss; Consequences of hearing loss and Disability; and Improving health care for ear disease and hearing loss. Discussion. Pacific peoples value hearing health to communicate and connect with their families and communities. Participants highlighted the importance of hearing health across the life course. Although the study findings revealed there is potentially less stigma and shame around hearing loss in New Zealand, denial and fatalistic attitudes towards hearing loss may delay some people from seeking healthcare services. Participants expressed key ways in which the health system can be more responsive to the hearing health needs of Pacific peoples in Aotearoa New Zealand. [ABSTRACT FROM AUTHOR]

Aim: To highlight the value of utilizing the Listening Guide methodology for nursing research and provide an exemplar applying this methodology to explore a novel concept in an underrepresented group—inner strength in persons newly diagnosed with mild cognitive impairment along with their care partners. Design: Methodology discussion paper. Methods: The exemplar study used the Listening Guide methods for data elicitation and analysis. Methods included adaptations for the study population and novice qualitative researchers. Results: The Listening Guide methodology with adaptations enabled the research team to centre the voices of persons living with mild cognitive impairment, highlight an abstract phenomenon and attend to the influences of the sociopolitical context. Further, this methodology helped address common challenges emerging qualitative researchers encounter, including understanding methods of application, engaging reflexively and immersing in the data. Conclusion: The Listening Guide is a voice‐centred qualitative methodology that is well suited to foreground the experiences of groups underrepresented in research and explore emerging phenomena. Implications for Nursing: Nurses are central to striving for health equity. The Listening Guide methodology offers a valuable and accessible research tool to understand the experiences and needs of underrepresented groups and shape healthcare in response. Impact: The Listening Guide methodology can be broadly applied to research with persons with mild cognitive impairment, and other underrepresented groups, to explore other phenomena beyond inner strength and move the science forward in representing the perspectives of groups underrepresented by research. Patient or Public Contribution: Persons living with cognitive impairment and their care partners participated in study conceptualization, interview guide development, methods development and dissemination plans. [ABSTRACT FROM AUTHOR]

Background: People with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease may experience language and communication difficulties. However, the role of speech and language interventions for people with these non‐language led dementias has received little attention. Aims: This study aimed to explore the experiences and perspectives of people living with these conditions, and their families, regarding their language and communication difficulties and how speech and language therapy could address these needs. Methods: This study employed a qualitative design to explore the experiences of people living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy or young onset Alzheimer's disease, and to understand their opinions about speech and language therapy. Participants were recruited from a support service connected to a dementia clinic to attend one of five focus group meetings. Videorecorded focus groups and interviews were transcribed, and reflexive thematic analysis was used to analyse data from people affected by each type of dementia. Results: A total of 25 participants were recruited to the study, with representation across the different forms of non‐language led dementias. The four main themes identified were: (1) communication difficulties as a key difficulty, (2) loss and loneliness, (3) speech and language therapy, and (4) the role of the caregiver. Sixteen subthemes were also identified which highlighted individual issues across disease types. Discussion: Although all the forms of dementia studied here are not considered to be language‐led, people with these conditions and/or their care partners identified speech, language and communication as common challenges. These communication difficulties were reported to have a negative impact on their social participation and mental health and participants felt speech and language interventions could help. There is a need for research exploring speech and language interventions developed for and with people with non‐language led dementias and their care partners, to ensure they meet the needs of the people they are designed for. WHAT THIS PAPER ADDS: What is already known on the subject: People with primary progressive aphasia present with speech, language and communication difficulties, and several speech and language interventions have been developed to meet the needs of this population. However, people with non‐language led dementias may also experience speech, language and communication difficulties, and little is known about interventions that may address these difficulties. What this paper adds to existing knowledge: People living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease report experiencing speech, language and communication difficulties that impact on the person with dementia's social participation and mood. Participants in this study also shared their opinions about how speech and language interventions could help, from the earliest stages of the disease. What are the potential or actual clinical implications of this work?: Speech and language therapists need to address the individual speech, language and communication needs of people with dementias, even those that are not thought to be language‐led. Current speech and language therapy service provision does not meet the needs of people with non‐language led dementias and further research is required to develop interventions and services to meet these needs. [ABSTRACT FROM AUTHOR]

Assistive technologies (AT) perform an important social role, interacting with cultural systems to produce or hinder accessibility to biosocial environments. This interaction profoundly shapes not only how an individual body can be experienced by users but also produce and hinder accessibility to biosocial environments. AT users have historically been viewed through a medical model, which deems them disabled by their impairments and by dominant ableist narratives. Therefore, this paper serves to provide an insight into the importance of ageing with and into AT. This paper aims to investigate polio survivors' and diabetic amputees' experiences of assistive technologies in order to better understand impacts upon narrative and identity. By applying an anthropological and sociological lens, a holistic view of the experiences of polio survivor and amputee AT users is developed. This paper draws on 16 in-depth interviews with polio survivors and diabetic amputees in the United States (US) and Australia, which were analysed using an experience-centered narrative approach. Both projects were approved by ethics boards. All participants provided written consent. Five themes were identified: a) disruption to biographies, which reflected AT impact on how narratives become altered; b) impacts to autonomy, which reflected the importance of regaining previous daily activities; c) re-engaging with community life, which highlighted how AT supported participation in valued activities; d) self-perceptions of assistive technologies, which act in opposition to external perspectives and challenge ableist narratives; and e) an intergenerational comparison of new and older AT users highlights the importance of temporalities. This paper offers new perspectives on ageing with assistive technologies, with a focus on identity and narrative. The importance of this paper is to contribute to the existing literature that demonstrates the cultural implications that arise through embodiment and assistive technologies. The use of assistive technology can help individuals regain function, but the individual circumstances require consideration The use of assistive technology is a complex entanglement of bodies, environments, biographies, and imagined futures. The use of assistive technology can provide participants autonomy over their narratives and assist with maintaining their identities [ABSTRACT FROM AUTHOR]

Purpose: This service evaluation aims to understand the experiences of service users (SUs) who accessed an early intervention in psychosis (EIP) service during the Coronavirus pandemic using qualitative and quantitative methodologies and compare these to a previous pre-pandemic study conducted within the same service (Watkins et al., 2018). Design/methodology/approach: This paper collated experiences of individuals accessing an EIP service to inform service development. Questionnaires and individual interviews were conducted to provide quantitative and qualitative data. Descriptive statistics and T-test confidence intervals were created from the results and compared to findings of Watkins et al. (2018). Interviews were transcribed verbatim and analysed using Braun and Clarke's (2006) thematic analysis. Findings: Data showed participants were largely satisfied with all areas of the service with "work or education", "living skills", and "addictions" scoring highest. Though participants reported no overall dissatisfaction, satisfaction levels dropped in "social activities" compared to the findings of Watkins et al. (2018), perhaps due to the national restrictions put in place to manage the spread of Coronavirus during this time. Interview analysis identified three themes of importance consistent with prior literature, highlighting the importance of relationships and validation during recovery. Research limitations/implications: This evaluation did not consider whether participants had accessed the service prior to the pandemic or only during, meaning that some participants could have a point of comparison with the service pre-pandemic, whereas others might not. Similarly, the participants were not the same as those of the Watkins et al.'s (2018) evaluation, meaning that direct comparisons of pre- and post-pandemic experiences were not possible. In addition, this evaluation collected data at only one time point early in the pandemic; therefore, it is unknown if client experiences of services differed as the pandemic and restrictions continued over time. Originality/value: The Covid-19 pandemic has been an unprecedented challenge for health services, and the effects of this are becoming widely reported. This evaluation of clinical services offers a valuable perspective of service user experience of receiving mental health services during a global health crisis further offering a comparison to pre-pandemic services and the experiences of those who used them. [ABSTRACT FROM AUTHOR]

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Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

This article explores men's experiences of and management strategies for urinary incontinence (UI) following treatment for prostate cancer. Qualitative interviews with 29 men, recruited from two prostate cancer support groups, explored their post-treatment experiences. Drawing on a conceptual toolkit connecting theories of masculinities, embodiment, and chronic illness, this paper identifies older men's experiences and strategies for managing UI and explores how these are shaped by their masculinities. This article identifies interdependence between managing stigma for UI and maintaining masculinity. Men's embodied practices for engaging in activities in public, crucial to masculine identity, were disrupted. In response, they adopted new reflexive body techniques to manage and resolve their UI, and thereby address the threat to their masculine identities, characterised in three strategies: monitoring, planning, and disciplining. The new embodied practices men described suggest three factors as important components for adopting new reflexive body techniques: routine, desire, and unruliness. [ABSTRACT FROM AUTHOR]

Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. The objective of the present study was to explore the use of numeric pain assessment in individuals with hEDS, from a patient-centered perspective. Our analysis is based on in-depth qualitative interviews. The interviews were conducted over the phone. Our participants were patients living with hEDS (N = 35). Interviews were recorded, transcribed, and analyzed to identify factors related to their use of these pain assessment instruments. Three primary themes emerged from these data, namely, (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain. These results demonstrate the need for caution in relying exclusively on numeric pain assessment instruments. We conclude with a brief proposal for a clinical communication strategy that may help to address the limitations of numeric pain assessment that were identified in our interviews. Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. Clinicians should be aware that patients have difficulties with the Numeric Rating Scale (NRS) for at least three reasons: (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain. Clinicians should use caution in relying exclusively on NRS instruments. Clinicians may benefit from using clinical communication strategies outlined in our paper, which may help to address the limitations of the NRS that were identified in our interviews. [ABSTRACT FROM AUTHOR]

Objectives: Hospital in the Home models are rapidly expanding in response to increasing bed pressures. This study examined patient and multidisciplinary health professional perceptions of a new geriatric evaluation and management and rehabilitation hospital in the home service in Australia. The service was unique, as adults of all ages with a variety of rehabilitation or geriatric evaluation and management needs were within scope. Methods: A qualitative descriptive approach was used with a consumer co-researcher and a consumer advisor being integral to decision-making. Patient feedback was collected via a paper-based patient satisfaction survey between August 2020 and February 2022. Additionally, interviews with current and past staff were conducted from July to November 2021. Reflexive thematic analysis was conducted for qualitative data and descriptive statistics used for quantitative data. Results: Patient surveys were analysed (n = 199, 42.2% response rate) with 60.8% of participants aged 75 years or over and 26.6% speaking a language other than English. High satisfaction was expressed. Feelings of comfort, familiarity, convenience, and reassurance were voiced. A person-centred approach enhanced involvement in care. Challenges included carer burden and clear communication. Sixteen staff (33% response rate) were interviewed. In general, staff said the service was inclusive and responsive, and the home environment beneficial, particularly for patients from culturally diverse backgrounds. A strong hospital partnership and comprehensive multidisciplinary approach were vital. Challenges included fragmentation due to part-time roles and combining with a pre-existing acute hospital in the home service. Conclusions: This qualitative exploration of staff and patients' perceptions of a geriatrician-led, multidisciplinary geriatric evaluation and management and rehabilitation hospital in the home service demonstrated that it was person-centred and optimised patients' control and ownership of care. The inclusive service parameters ensured responsiveness to diverse needs whilst allowing earlier return home from hospital, both of which are vital for quality patient care. [ABSTRACT FROM AUTHOR]

Introduction: Innovative moments (IMs) pinpoint new and more adaptative meanings that emerge in clients' discourse during psychotherapy. Studies with adult clients have found a greater proportion of IMs in recovered compared to unchanged cases, but similar studies have yet to be conducted with adolescents. Aims: The paper aims (1) to study retrospectively the emergence of IMs in therapy, using a post‐therapy interview, in adolescents that underwent psychotherapy for depression, and (2) to characterize the themes present in IMs identified retrospectively in the interviews. Method: Semi‐structured post‐treatment interviews conducted with 24 adolescents on the experience of taking part in a clinical trial of youth depression, were coded using the Innovative Moments Coding System. After identifying IMs, a thematic analysis identified the prominent themes within them. Results: Higher presence of IMs were found in recovered compared to unchanged cases. Two main themes emerged in the IMs, changes that occurred with therapy and attributions of changes. Recovered cases presented more IMs centred on the self, whereas unchanged cases identified more non‐specific changes. Conclusion: This study suggests that it is possible to code IMs, identified retrospectively, based on post‐therapy interviews with adolescents. Meaningful differences were found between recovered compared to unchanged cases. Therapeutic recovery was associated with a higher focus on the self and more specificity in clients' representations of the change process. [ABSTRACT FROM AUTHOR]

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n  = 397) completed a questionnaire prior to undergoing MP (n  = 356/397). A subset (n  = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered. [ABSTRACT FROM AUTHOR]

Background: Home-based care may cover anything from 24-hour support for people with a disability, to short-term post-discharge care, or to periodic assistance with simple tasks such as domestic aid for frail older people. The process can be complex and time-consuming and requires coordination between the individual, their family caregivers, and healthcare providers. Receiving care at home can also lead to social isolation as older people may have limited opportunities for social interaction. This study aimed to investigate older people's experience and related factors while receiving home-based long-term care services. Methods: A qualitative study was used. Face-to-face individual interviews were conducted with people who were receiving nursing care in their homes (N = 17) and analyzed through thematic analysis. Results: Analysis of interview data resulted in the identification of three major themes that captured participants' personal experiences regarding long-term care in the home: (1) Challenges faced by older people receiving long-term care at home; (2) The impact of home care services on people's social well-being; and (3) Older people's contradictory emotions regarding care delivery. Conclusions: Findings of the study revealed that the most important and challenging factors in home care from the perspective of older people were social well-being, religious needs, and physical needs. They considered the nurses who provided these services as family members and the most significant helpers in their daily activities. Participants expressed a desire for more services in the future. [ABSTRACT FROM AUTHOR]

Aims and Objectives: We sought to gain an understanding of the patient experience during their hospital stay for COVID‐19, and the impact of COVID‐19 on quality of life post discharge. Background: Symptoms of COVID‐19 include a persistent cough, dyspnoea and fatigue. Individuals with comorbidities such as cardiovascular disease have a higher risk of contracting COVID‐19 and approximately 20% of those diagnosed with COVID‐19 are admitted to hospital. Following discharge from hospital, 40% of patients report a worsened quality of life and up to 87% of those discharged from hospital have experienced 'long COVID'. Design: A qualitative design was used to understand patient experience of hospitalisation following a diagnosis of COVID‐19, and their experiences following discharge from hospital. Methods: Ten patients with a previous diagnosis of COVID‐19 took part in semi‐structured interviews regarding their experiences of hospitalisation and the impact on quality of life post‐discharge. Results: The results identified three key themes from the interviews: communication and the inpatient experience, symptoms following discharge and regaining independence. Patients discussed their experience of hospitalisation and how this continued to impact their emotional well‐being post‐discharge. However, patients appeared to push themselves physically to improve their health, despite continued COVID‐19 symptoms. Conclusion: Patients hospitalised following a diagnosis of COVID‐19 experienced psychological distress during their hospital stay, as well as 3‐months post‐discharge. We suggest the use of psychosocial interventions to support patients post‐discharge. Relevance to Clinical Practice: The results of this study provide a greater understanding of the patient experience during their hospital stay, which can support nursing staff practice. Additionally, the study provides in depth knowledge of personal experiences of patients diagnosed with COVID‐19 and the impact following hospital discharge. Patient or Public Contribution: Patient's took part in semi‐structured interviews via telephone to support the aims and objectives of this study. [ABSTRACT FROM AUTHOR]

Patients living with multiple myeloma (MM) have a substantial disease burden and face multiple barriers to care. Building upon our previous research using mixed methods, this focus group research aimed to identify patients' priorities regarding specific social and identity-related needs, map these prioritized needs to the disease journey, and describe patient-generated ideas to improve patient support. Participants noted that patients with MM need a range of emotional, social, and financial support throughout the disease journey. They identified initial MM diagnosis and treatment adherence as two critical points in the MM journey where patients need the most support and assistance. The findings of this research suggest that overall, patients with MM need comprehensive support, ideally from a multidisciplinary team consisting of health care providers, patient advocates, social workers, and psychologists to help patients understand their disease and treatment options, make informed treatment decisions, adhere to treatment, and ultimately reduce their disease burden and improve outcomes. This research revealed that patients with MM need varying types and levels of support, with the most common needs including information on disease and treatment, connections to financial resources and support systems, assistance with navigating insurance options, and transportation and logistical support for medical appointments. [ABSTRACT FROM AUTHOR]

Objective/Background: The Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is needed. The aim of the study was to evaluate a Swedish translation of the CSD regarding test content and response processes in patients with insomnia. Patients/Methods: In connection with translating the CSD into Swedish, we used cognitive interviewing to evaluate test content and the response process, that is, how people make decisions when responding to survey items. Cognitive interviews were conducted with 13 primary health care patients with insomnia disorder (mean age, 49 years; SD 15.5). Iterative, reparative analysis was used to investigate test content. Descriptive deductive analysis was used to investigate interview transcripts for the themes of the cognitive model: comprehension, retrieval, decision process, and judgement. Together, the themes explain the response process when responding to a patient-reported outcome measure. Results: The overall comprehension of the CSD could be affected by poor adherence to the instructions (comprehension). Patients had difficulty with recall if they did not complete the diary immediately in the morning and just before bedtime (retrieval). They could have problems deciding how to respond to certain items because they imbued sleep-related concepts with extra meaning (decision process), and had trouble finding response alternatives nuanced enough to describe their experience of sleep and tiredness (judgement). Conclusions: This study contributes knowledge on how the instrument is perceived and used by care-seeking patients with insomnia. In this context, the CSD exhibits known flaws such as memory lapses if the diary is not filled in directly in the morning. To increase the accuracy of patients' responses, therapists should support patients in reading the instructions. [ABSTRACT FROM AUTHOR]

Background and Aims: Communication is important in determining how patients understand the diagnostic process. Empirical studies involving direct observation of communication within diagnostic processes are relatively limited. This ethnographic study aimed to identify communicative practices facilitating or inhibiting shared understanding between patients and doctors in UK acute secondary care settings. Methods: Data were collected in acute medical sectors of three English hospitals. Researchers observed doctors as they assessed patients; semistructured interviews were undertaken with doctors and patients directly afterwards. Patients were also interviewed 2–4 weeks later. Case studies of individual encounters (consisting of these interviews and observational notes) were created, and were cross‐examined by an interdisciplinary team to identify divergence and convergence between doctors' and patients' narratives. These data were analysed thematically. Results: We conducted 228 h of observation, 24 doctor interviews, 32 patient interviews and 15 patient follow‐up interviews. Doctors varied in their communication. Patient diagnostic understanding was sometimes misaligned with that of their doctors; interviews revealed that they often made incorrect assumptions to make sense of the fragmented information received. Thematic analysis identified communicative practices that seemed to facilitate, or inhibit, shared diagnostic understanding between patient and doctor, revealing three themes: (1) communicating what has been understood from the medical record, (2) sharing the thought process and diagnostic reasoning and (3) closing the loop and discharge communication. Shared understanding was best fostered by clear communication about the diagnostic process, what had already been done and what was achievable in acute settings. Written information presents an underutilised tool in such communication. Conclusions: In UK acute secondary settings, the provision of more information about the diagnostic process often fostered shared understanding between doctor and patient, helping to minimise the confusion and dissatisfaction that can result from misaligned expectations or conclusions about the diagnosis, and the uncertainty therein. Patient/Public Contribution: A patient and public involvement group (of a range of ages and backgrounds) was consulted. They contributed to the design of the protocol, including the timing of interviews, the acceptability of a follow‐up telephone interview, the development of the interview guides and the participant information sheets. [ABSTRACT FROM AUTHOR]

Introduction: The adoption of remote healthcare methods has been accelerated by the COVID‐19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID‐19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. Methods: This was a mixed‐methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. Findings: Survey responses were received from 292 staff and 1069 patients and carers. Twenty‐three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. Conclusion: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. Patient or Public Contribution: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: There have been some concerns about the impact of temporary doctors, otherwise known as locums, on patient safety and the quality of care. Despite these concerns, research has paid little attention to the implications of locum working on patient experience. Methods: A qualitative semi‐structured interview study was conducted with 130 participants including locums, people working with locums and patients with experience of being seen or treated by locums. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge. Results: Three main themes were constructed through analysis: (1) Awareness and disclosure; patients were not always aware if their doctor was a locum, and there was some debate about whether patients had a right to know, particularly if locum working presented quality and safety risks. (2) Continuity and accessibility of care; access was regarded as priority for acute conditions, but for long‐term or serious conditions, patients preferred to see a permanent doctor who knew their history, although it was acknowledged that locums could provide fresh perspectives. (3) Communication and practice; locums and patients described how consultations were approached differently when doctors worked as locums. Patients evaluated their interactions based on how safe they felt with practitioners. Conclusion: Patients reported that they were unlikely to have continuity of care with any doctors delivering care, regardless of their contractual status. Locums sometimes provided new perspectives on care which could be beneficial for patient outcomes, but for patients with long‐term, complex or serious conditions continuity of care was important, and these patients may avoid or delay seeking care when locums are the only available option. Patient or Public Contribution: Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., study protocol, participant information sheets, survey tools, interview schedules, emerging findings). Our PPI forum co‐produced our patient interview schedule, two members of our PPI forum led the patient focus groups and all were involved in analysis of patient interviews. Our PPI Chair was involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Context: Risk stratification has been suggested as a strategy for improving cancer screening. Any changes to existing programmes must be acceptable to the public. Objective: This study aimed to explore the preferences and considerations of individuals relating to the introduction of different risk‐based strategies to determine eligibility for colorectal cancer (CRC) screening. Study Design: Participants completed a discrete choice experiment (DCE) within online interviews. Nine conjoint‐analysis tasks were created, each with two potential CRC screening programmes. The attributes included personal risk of CRC, screening invitation strategy and impact. Participants chose between programmes while thinking aloud and sharing their thoughts. Transcripts were analysed using codebook thematic analysis. Participants: Twenty participants based in England aged 40–79 years without previous cancer history or medical expertise. Results: When choosing between programmes, participants first and primarily looked to prioritise saving lives. The harms associated with screening were viewed as a surprise but also felt by most to be inevitable; the benefits frequently outweighed, therefore, harms were considered less important. Risk stratification using individual characteristics was considered a nuanced approach to healthcare, which tended to be preferred over the age‐alone model. Detailed personal risk information could be taken more seriously than non‐personalised information to motivate behaviour change. Although it had minimal impact on decision‐making, not diverting resources for screening from elsewhere was valued. Individuals who chose not to provide health information were considered irresponsible, while it was important that those with no information to provide should not lose out. Conclusion: Risk‐stratified CRC screening is generally aligned with public preferences, with decisions between possible stratification strategies dominated by saving lives. Even if attributes including risk factors, risk stratification strategy and risk communication contributed less to the overall decision to select certain programmes, some levels more clearly fulfilled public values; therefore, all these factors should be taken into consideration when redesigning and communicating CRC screening programmes. Patient or Public Contribution: The primary data source for this study is interviews with 20 members of the public (current, past or future CRC screening invitees). Two public representatives contributed to planning this study, particularly the DCE. [ABSTRACT FROM AUTHOR]

Introduction: Co‐design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co‐design is undertaken in‐person; however, exploring online delivery is warranted. PPIE in co‐design must be considered carefully, and assumptions that in‐person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence‐informed approaches to facilitating co‐design online. This study aimed to develop and evaluate a framework for authentically adapting health research co‐design into an online environment. Materials and Methods: The initial framework was developed through a literature review, synthesis of in‐person co‐design principles, and alignment of online strategies. The framework was then applied to a co‐design project with 10 participants across relevant PPIE groups (end‐users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician−researchers [n = 2]). Participants' experiences of the online co‐design process were evaluated via a mixed‐methods design using surveys and semi‐structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. Results: The developed framework, Partnership‐focussed Principles‐driven Online co‐Design (P‐POD) was used to design eight 90 min online co‐design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P‐POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P‐POD framework is presented. Conclusion: With evaluation of the initial P‐POD framework showing evidence of adherence to co‐design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P‐POD framework may be used and evaluated within future intervention or service design. Patient or Public Contribution: This study involved the participants (end‐users, clinicians and service providers) in the co‐design process described, interpretation of the results through member‐checking interview responses, assisting in development of the final framework and as co‐authors for this manuscript. [ABSTRACT FROM AUTHOR]

Background: Statistics indicate a high prevalence of TBI in South Africa, with many individuals with TBI not returning to work. The lack of return to work among TBI survivors is particularly due to factors such as injury severity, preinjury educational and occupational status, and age at injury. However, in addition to the above factors, there was the COVID‐19 pandemic, which resulted in the de‐escalation of nonessential outpatient services in order to assist with curbing the spread of the virus. Objective: The aim of the article is to explore the experiences and perceptions of TBI survivors about accessing vocational rehabilitation during the COVID‐19 pandemic and how this has affected their worker roles. Method: A descriptive, explorative qualitative research design was used, and semistructured interviews were conducted to collect data. The authors subsequently analysed the transcribed data using a thematic analysis approach. The COREQ (consolidated criteria for reporting qualitative research) checklist was used as a reporting guideline. Ten TBI survivors and two individuals working in the public health sector participated in this study. Two semistructured interviews were conducted with each research participant. Results: Three themes emanated from the study, namely, Theme 1: "The barriers to accessing rehabilitation during the COVID‐19 pandemic" represents the participants' barriers to accessing rehabilitation programmes throughout the COVID‐19 pandemic. Theme 2: "Lack of rehabilitation negatively influenced the individual with TBI occupational performance" describes how the lack of OT rehabilitation during the COVID‐19 pandemic impacted the participants' quality of life. Theme 3: "Factors that facilitated access to rehabilitation during the COVID‐19 pandemic" describes the factors that facilitated access to OT rehabilitation services during the COVID‐19 pandemic. Conclusion: The study found that there were barriers and facilitators to accessing occupational therapy rehabilitation during the COVID‐19 pandemic for TBI survivors. More research needs to be conducted to explore the efficacy of telehealth/telemedicine for occupational therapy rehabilitation and the role of the occupational therapist in global pandemics. [ABSTRACT FROM AUTHOR]

With the growing numbers of people living in old age, a system that sustains autonomy, dignity and freedom of movement for people living with dementia (PwD) needs to be installed. However, due to the cognitive constraints in the cohort of PwD, traditional qualitative methods of inquiry, such as interviews, are often not a good match. This study aimed to use creative qualitative assessment tools to assess the values and opinions of PwD in nursing homes on freedom and safety. Twenty-two nursing home residents with memory problems participated in this study. Important themes related to freedom and safety were identified using a diverse set of methodologies. Overall, residents had a similar view on 'safety', relating this to having a homely environment where people look out for you, with a good balance between busy and quiet areas and being able to retain cognitive and physical function. Values around freedom were more diverse. Residents who were still capable of logical speech generally voiced a wish for independence, making one's own decisions and wanting to go outside. For residents who no longer spoke, freedom seemed to be experienced more through the connection to other people. These results show that PwD still have distinct personal values concerning freedom and safety, which should be given due consideration in decision-making regarding nursing home policy, thereby potentially improving the quality of life of PwD. [ABSTRACT FROM AUTHOR]

Background: General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results. Methods: We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions. Results: Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future. Conclusions: Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice. Trial registration: ISRCTN12995230; prospectively registered on 19/06/2020. [ABSTRACT FROM AUTHOR]

Aim: To explore home‐dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia‐related literature excerpts to facilitate conversations on ethical issues related to living with dementia. Background: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home‐dwelling people with dementia and their families are often lacking. Design: An exploratory‐descriptive qualitative study. Methods: We conducted eight interviews with 14 home‐dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study. Results: Using excerpts from dementia‐related literature was a feasible and acceptable way of initiating discussions on ethical issues among home‐dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections. Conclusion: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia‐related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships. Implications for patient care: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home‐dwelling people with dementia and their families. Reporting method: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method. Patient or public contribution: A healthcare professional working as a so‐called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home‐dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author. [ABSTRACT FROM AUTHOR]

Background: One of the main causes of mortality in patients with heart disease is arrhythmia. A temporary pacemaker is inserted to control arrhythmias, particularly when an intervention is urgently needed. Since this procedure is not benign, patients might experience many challenges. As the first step in the development of nursing interventions, identifying these experiences can help reinforce evidence in this field and enhance the quality of nursing care. Objectives: The present study aimed to explore the challenges experienced by patients with temporary transvenous cardiac pacemakers (TTCPs). Methods: This qualitative, interpretive phenomenological study was conducted on 18 patients with pacemakers who were selected by purposive sampling. The data were collected through in-depth semi-structured interviews. All the interviews were recorded and simultaneously analyzed via van Manen’s analytical method. Results: The results of data analysis resulted in threemajor themes: ”Disregard for patient’s dignity”, “dependent life”, and ”physical and psychological problems”. Conclusions: This study showed the challenges of patients with TTCPs. This group of patients is facing challenges related to the care and hospitalization matter and facing an uncertain future. Therefore, there is a need to pay more attention to patients’ needs during hospitalization, such as informing patients about the procedure, respecting patients’ dignity and rights, and controlling physical and psychological problems. [ABSTRACT FROM AUTHOR]

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '. Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems. [ABSTRACT FROM AUTHOR]

Background: While patients from low socioeconomic (SES) backgrounds are at increased risk of developing chronic health conditions, typically managed within general practice, they report fewer positive consultation experiences with GPs than patients from higher SES groups. To our knowledge, existing research does not provide an in-depth understanding of the GP conducts that contribute to positive consultations. Aim: To identify the factors that patients from low SES backgrounds perceive as essential for creating good consultation experiences. Design & setting: This exploratory pilot study was performed in GP clinics in Melbourne, Australia. Method: We used an appreciative inquiry approach, focused on positive consultation experiences, previously shown to be helpful for researching sensitive topics. Nine patients from low SES backgrounds, who reported positive consultation experiences, undertook a semi-structured qualitative interview while watching the video recording of their GP consultation. Four different GPs were captured in the recordings. Inductive thematic coding was performed by two researchers. Results: The following four categories were developed: 1) the doctor’s demeanour and how the patient was made to feel during the consultation drove their engagement; 2) an established and collaborative therapeutic relationship was of high importance to patients; 3) a doctor’s therapeutic skillset was integral to patient confidence and comfort; and 4) patients appreciated verbal and non-verbal communication techniques. In each interview, the discussion about the video-recorded consultation often triggered reflections about previous consultations with the respective GP. Conclusion: For patients from low SES groups, positive consultation experiences were underpinned by perceived continuity of care with a specific GP who consistently showed good communication skills and key interpersonal characteristics. This research is a small step towards increasing our understanding of the experience of individuals from low SES backgrounds in primary care and the existing health inequities within this area. [ABSTRACT FROM AUTHOR]

Background: Culturally sensitive care is integral to effective and equitable healthcare delivery, necessitating an understanding and acknowledgment of patients' cultural needs, preferences, and expectations. This study investigates the perceptions of cultural sensitivity among general practitioners (GPs), focusing on their intentions, willingness and perceived responsibilities in providing care tailored to cultural needs. Methods: In-depth interviews were conducted with 21 Flemish GPs to explore their perspectives on culturally sensitive care. Data analysis followed a conventional qualitative content analysis approach within a constructivist framework. A coding scheme was developed to identify recurring themes and patterns in the GPs' responses. Results: Findings reveal that culturally sensitive care provision is perceived as a multifaceted process, initiated by an exploration phase where GPs inquire about patients' cultural needs and preferences. Two pivotal factors shaping culturally sensitive care emerged: patients' specific cultural expectations and GPs' perceived responsibilities. These factors guided the process of culturally sensitive care towards three distinct outcomes, ranging from complete adaptation to patients' cultural requirements driven by a high sense of responsibility, through negotiation and compromise, to a paternalistic approach where GPs expect patients to conform to GPs' values and expectations. Three typologies of GPs in providing culturally sensitive care were identified: genuinely culturally sensitive, surface-level culturally sensitive, and those perceiving diversity as a threat. Stereotyping and othering persist in healthcare, underscoring the importance of critical consciousness and cultural reflexivity in providing patient-centered and equitable care. Conclusions: This study emphasizes the significance of empathy and underscores the necessity for GPs to embrace the exploration and acknowledgement of patients' preferences and cultural needs as integral aspects of their professional role. It highlights the importance of shared decision-making, critical consciousness, cultural desire and empathy. Understanding these nuances is essential for enhancing culturally sensitive care and mitigating healthcare disparities. [ABSTRACT FROM AUTHOR]

Background: The survival rate among patients with breast cancer is high. It is well described that after primary treatment patients may experience symptoms and concerns but the needs and resources during the first year to manage everyday life are not well described. Aim: To describe experiences of symptom distress, needs and support during the first year after primary treatment for breast cancer from the perspectives of patients and healthcare professionals. Design: Qualitative descriptive. Methods: Data collection through individual interviews with patients (n = 17) and a focus group interview with healthcare professionals (n = 7). Data was analysed using thematic analysis and resulted in three themes. Results: The first theme, 'Struggling with symptoms and changes in everyday life' shows how symptoms and concerns interfered with the everyday life of patients and in some situations even impeded them. Patients try to adapt to their new situation by creating new routines and managing symptoms through self‐care. The second theme, 'Adaption in a period of uncertainty' describes thoughts about cancer recurrence and doubts about continuing with the endocrine therapy if symptoms prolong. In the third theme, 'Support and need for individualized follow‐up care' healthcare professionals described that they provide support by being available and by giving both verbal and written information. Patients expressed that the information could be too general and voiced a need for more individually tailored support. Conclusion: During the first year after primary treatment, patients with breast cancer describe how they try to manage by themselves, but express both unmet needs and a wish for extended and more individually tailored support. The healthcare professionals recognised that patients lack a structured plan for the first year and the need for continued support. This stresses a need for development of care models with special consideration towards individualised support after breast cancer treatment. No Patient or Public Contribution: There was no patient or public involvement in the design or conduct of the study. The interview study was not considered to benefit from involving patients or healthcare professionals when designing the interview guides as they were developed through literature and previous research of patients treated for breast cancer. [ABSTRACT FROM AUTHOR]

Purpose: The decision to proceed with bone-conduction hearing devices is not an easy one despite being the audiological management of choice for the majority of children with unilateral hearing loss secondary to microtia--atresia, and the outcome is not always as hoped for. This study aimed to explore parent and child views on decision making and outcomes. Method: Qualitative methods (focus groups and individual interviews) were used to explore parent and child opinions on factors influencing the decision to try a bone-conduction device and their subsequent use or nonuse. Quantitative methods (questionnaires) investigated the impact of hearing loss on listening effort and fatigue, quality of life, and learning, including executive functions such as working memory, information processing, and attention. Twelve parent--child dyads participated in the study, with children aged 9-14 years. Results: A thematic analysis of qualitative data highlighted the importance to parents of timely, consistent, and accessible device information as well as concerns regarding bullying, psychosocial well-being, and educational impacts. Children's concerns included feeling different from their peers, bullying, device appearance, and sound quality, as well as the support they wanted and received. Questionnaire results provided useful confirmatory information on the impacts of unilateral hearing loss on learning for a substantial proportion of the children in this sample. Conclusion: The findings provide insights into the wide range of issues that have implications for the provision of audiological services as well as educational and psychological support for children with unilateral microtia--atresia. [ABSTRACT FROM AUTHOR]

Background: Clinical trial participation in the United States remains low, hampering development of and access to novel therapies. To assist patients and their oncologists with identifying relevant and available blood cancer clinical trials and reducing enrollment barriers, The Leukemia & Lymphoma Society created its Clinical Trial Support Center (CTSC), a free, telephone-based service led by nurse navigators. Objectives: To understand patient-and caregiver-reported perceptions and experiences with this navigation service. Methods: Eligible participants were English-speaking, adult blood cancer patients or caregivers who resided in the United States or Canada and had a telephone interaction with the CTSC between May 2018 and April 2019. A 53-item survey assessed demographics, clinical characteristics, experiences, satisfaction, and enrollment outcomes. Interviews were conducted with a subset of survey respondents to capture individual narratives. Results: Of 474 eligible patients/caregivers, 131 completed the survey (28% response rate). Most patients/caregivers reported contacting the CTSC to identify a trial they might be eligible for (81.7%), for general information about clinical trials (78.6%), about a trial recommended by a healthcare provider (21.4%), or one found through another source (19.1%). In addition to seeking help with identifying trials and learning about trials, patients/ caregivers reported discussing with the nurse navigator insurance/coverage issues (25%) and how to talk with their healthcare provider about trial participation (24%). More than 93% of respondents reported that the nurse navigator gave them the information and support needed to make an informed decision about trial participation. After speaking to a nurse navigator, nearly 29.6% reported enrolling in a trial; the most common reasons for nonenrollment were that their doctor did not recommend it (33.7%), not eligible for any existing trial (30.3%), no trial available at a convenient location (24.7%), and chose a different type or plan of treatment than offered by trial(s) (23.6%). Interview respondents (n=10) described how the navigation enhanced their sense of control over the treatment decision-making process. Conclusion: Amid an overwhelming treatment landscape and continued low clinical trial enrollment rates, this clinical trial navigation service effectively provides blood cancer patients and caregivers support with identifying relevant trial options and facilitating enrollment if the patient so chooses in collaboration with their healthcare team. Further inquiry is needed to understand how to integrate independent navigation programs such as this directly into clinical workflows so that more patients and oncologists can be assisted, especially among patients from groups underrepresented in clinical trials. [ABSTRACT FROM AUTHOR]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [ABSTRACT FROM AUTHOR]

Background: Social isolation and loneliness are associated with living with a chronic condition particularly where stigma is a factor. Our study aimed to examine the lived experience of adolescents living with HIV in relation to isolation because of their diagnosis and consequences of disclosure. Giddens' structuration theory was used as an analytic framework to identify the potential mechanisms underlying adolescents living with HIV's experiences. Method: Longitudinal in-depth interviews were conducted with 20 adolescents living with HIV aged 15–24 years with each participant taking part in three interviews (total 60) between September 2020 and October 2021. Thematic analysis was performed using Braun and Clarke's steps for coding and analysing qualitative data and informed by the structuration theory framework. Results: The findings indicated that adolescents living with HIV have agency and make conscious choices about sharing their status. However, these choices are influenced by their experiences in their community. The discrimination and negative judgements they often experience prevent them from disclosing their status. Stigma, discrimination, and psychological distress contribute to the isolation that adolescents and young adults living with HIV experience. The limited disclosure itself can lead to them becoming isolated and lonely. Conclusion: The negative experiences which adolescents living with HIV face can have an impact not only on their psychological wellbeing but also on their decision to disclose and seek support. These experiences may lead to social isolation and loneliness, an unintended consequence of their action in protecting themselves from the conditions created by the structures/environment in which they live. [ABSTRACT FROM AUTHOR]

One of the core principles of providing care in general practice is giving more to those who need it most. We investigate some of the complexities of this ambition in the context of cancer care for patients defined as socially disadvantaged by their general practitioner (GP). We do this by exploring how care is sought, how it is offered, and what expectations patients and GPs carry with them when receiving and providing cancer care in the Danish welfare state. We carried out semi-structured interviews with eight GPs and seven socially disadvantaged cancer patients living with different types and stages of cancer. The interviews focused on needs and challenges in cancer follow-up in general practice and were thematically coded. Drawing on theoretical concepts of morality and Nordic individualism, we point to how one of the main challenges in cancer care and follow-up is to figure out how the doctor-patient relationship should be established, practiced, and maintained. Both GPs and patients stressed the importance of the relationship, but how it should be practiced amidst social norms about being a patient, a citizen and how care-seeking should unfold seems less clear. In conclusion we argue that giving more to those who need it the most is a difficult and ill-defined task that is shaped by the cultural, social, and political expectations of both GPs and patients. [ABSTRACT FROM AUTHOR]

Introduction: People with disabilities (PwDs) constitute a large and diverse group within the global population, however, their sexual and reproductive health (SRH) needs are often neglected, particularly in low-and middle-income countries. This may result in adverse outcomes, such as sexually transmitted infections (STIs), unintended pregnancies, and experience of interpersonal violence (IV). This study aimed to assess the factors that influence the sexual lives of PwDs in two districts of Ghana. Methods: A sequential explanatory mixed-methods study design was used to collect data from PwDs. Quantitative data were obtained from 402 respondents using a pretested questionnaire, and qualitative data gathered from 37 participants using in-depth interviews. The quantitative data were analysed using descriptive and inferential statistics, while the qualitative data were analysed using inductive thematic analysis. Results: Most PwDs (91%) reported that they have ever had sex, which was associated with age, disability severity, and household size. The prevalence of poor SRH status, STIs, unintended pregnancy, pregnancy termination, and unsafe abortion were 10.5%, 5.7%, 6.4%, 21.6%, and 36.9% respectively. These outcomes were influenced by education, income, health insurance subscription, and proximity to a health facility. The prevalence of IV was 65%, which was related to disability type and severity. The qualitative data revealed five main themes: curiosity to engage in sexual activities, feelings of despair and insecurity with abled partners, preference for sexual relationships with other PwDs, IV and its perpetrators, and adverse SRH outcomes. Conclusion: The study findings indicate that most adult PwDs have ever had sex and they face various challenges in their sexual lives. They experience multiple forms of abuse and neglect from different perpetrators at different levels of society, which have negative impacts on their well-being. There is a need for comprehensive and inclusive interventions that address the SRH needs of PwDs, as well as the underlying social and structural factors that contribute to their vulnerability. Further research is recommended to explore the perspectives of stakeholders on how to improve the SRH outcomes of PwDs. Plain Language summary: People with disabilities make up 16 percent of the world population, but their sexual and reproductive health (SRH) needs are often unmet, especially in poorer countries, contributing to adverse outcomes. This study assessed factors influencing the sex lives of PwDs in two districts of Ghana. Quantitative data were collected from 402 respondents, while qualitative data were collected from 37 participants. The results showed that age, severity of disability, and household size influence sexual activity. Many respondents also reported adverse SRH issues including STIs and unintended pregnancies. Sixty-five percent reported experiencing violence or abuse, which is related to their disability type and severity. The study also found that PwDs encounter many challenges in their sexual lives, including abuse and neglect. The findings suggest the need to pay attention to the sexual health needs and the social issues that make PwDs vulnerable to various abuses. [ABSTRACT FROM AUTHOR]

Background: Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period. Methods: Qualitative descriptive study of LVAD recipients. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. Results: Interviewed patients (n = 27) were 30–76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients' values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. Conclusions: Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping. [ABSTRACT FROM AUTHOR]

Background. During the COVID-19 pandemic, people affected by cancer were in need of information about the virus and about the (self-) management of cancer symptoms and treatment. It is important to understand how patients with cancer navigated through the pandemic and to explore their experience relating to their supportive care needs. Aim. This study aimed to describe the experience of Swiss oncological patients during the COVID-19 pandemic with additional supportive cancer care. Methods. A single-center study was conducted in 2021. Patients with melanoma, breast, lung, or colon cancer who received active systemic anticancer treatment at the time of the COVID-19 pandemic and who were additionally seeing either oncology clinical nurse specialists, integrative medicine physicians, or both were included. We conducted semistructured interviews alongside the patient-reported quantitative assessment of distress and resilience. Thematic analysis was performed for the qualitative data and descriptive statistics for the quantitative data. Results. Eighteen patients with cancer were interviewed. Patients seeing an integrative medicine physician highlighted that they positively felt being addressed as a whole person during the consultations. The oncology clinical nurse specialists were perceived as the first point of contact for the patients and had more time during the pandemic compared to what the patients normally received. In general, patients did not experience delays or disruptions in their cancer treatment. As immunosuppressed and fatigued patients with cancer, they felt supported by the restrictions and hygienic measures. Access to vaccination reassured patients against the risk of infection. These results were reflected in the quantitative data, as we found moderate distress levels (M = 4.1; SD = 2.5) and high resilience scores (M = 7.5; SD = 0.9) in this patient population. Conclusion. During the COVID-19 pandemic, patients with cancer felt particularly supported by integrative medicine and cancer nurse consultations. Secured resources for nursing consultations and integrative medicine services can help to address the supportive care needs of patients with cancer. [ABSTRACT FROM AUTHOR]

Blue space interventions evidently have a positive impact on well-being and mental health, yet longitudinal studies on the lasting impact of such interventions are scarce. In this qualitative follow-up study with semi-structured interviews, we explored the long-term experiences over 18–42 months among six out of the initial eight women from the primary study, also including two instructors from the initial study. The participants, dealing with mental disorders, participated in the group-based intervention Freedom on Water, participating in stand-up paddling. Five main themes emerged from the empirical analysis: SUP as a catalyst for broadening horizons; learning: stepping out of the comfort zone; a break from diagnosis and rumination; connectedness to nature, specifically blue nature, and to the group; a life-changing journey; and a shift in mindset. The study revealed a long-term, life-changing impact of the program on participants' well-being and mental health. Nature and blue space activities had become a greater part of their lives, improving their mental health with feelings of calmness, positivity, healing, and freedom. Stepping out of their comfort zone facilitated experiences of success and transformed their mindsets. Moreover, they experienced a break from rumination, and they became more outwardly focused, with confidence in themselves and their abilities, while making new friendships and engaging in new and different contexts. [ABSTRACT FROM AUTHOR]

Introduction: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. Methods: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2–3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. Results: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. Conclusion: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability. [ABSTRACT FROM AUTHOR]

Background: NHS Health Check (NHSHC) is a national cardiovascular disease (CVD) risk identification and management programme. However, evidence suggests a limited understanding of the most used metric to communicate CVD risk with patients (10-year percentage risk). This study used novel application of video-stimulated recall interviews to understand patient perceptions and understanding of CVD risk following an NHSHC that used one of two different CVD risk calculators. Methods: Qualitative, semi-structured video-stimulated recall interviews were conducted with patients (n = 40) who had attended an NHSHC using either the QRISK2 10-year risk calculator (n = 19) or JBS3 lifetime CVD risk calculator (n = 21). Interviews were transcribed and analysed using reflexive thematic analysis. Results: Analysis resulted in the development of four themes: variability in understanding, relief about personal risk, perceived changeability of CVD risk, and positive impact of visual displays. The first three themes were evident across the two patient groups, regardless of risk calculator; the latter related to JBS3 only. Patients felt relieved about their CVD risk, yet there were differences in understanding between calculators. Heart age within JBS3 prompted more accessible risk appraisal, yet mixed understanding was evident for both calculators. Event-free survival age also resulted in misunderstanding. QRISK2 patients tended to question the ability for CVD risk to change, while risk manipulation through JBS3 facilitated this understanding. Displaying information visually also appeared to enhance understanding. Conclusions: Effective communication of CVD risk within NHSHC remains challenging, and lifetime risk metrics still lead to mixed levels of understanding in patients. However, visual presentation of information, alongside risk manipulation during NHSHCs can help to increase understanding and prompt risk-reducing lifestyle changes. Trial registration: ISRCTN10443908. Registered 7th February 2017. [ABSTRACT FROM AUTHOR]

Background: Effective communication with GPs (General Practitioners) enables higher rates of patient satisfaction and adherence to treatment plans. People with severe mental illness (SMI) and their caregivers present unique characteristics that present difficulties in the GP-carer-patient communication process. Aim: To explore the expectations of patients with SMI and their caregivers regarding GPs' communication skills in primary care consultations. Design & setting: Face-to-face interviews, using focus group methodology, which were undertaken in southern Spain. Method: Forty-two participants took part in 21 paired semi-structured interviews with an average duration of 19±7.2 minutes. Information was audio-recorded and transcribed verbatim. Qualitative content analysis was undertaken, obtaining a codification in categories by means of triangulation. Results: Four themes emerged from the analysis. Theme 1 was interviewer communication characteristics. The ability of GPs to use a language that was colloquial and adapted to each person was perceived as a determinant of the quality of care provided. An empathetic attitude, low reactivity, and efficient time management were the most valued communication skills. Theme 2 was telemedicine: telephone consultation and video consultation. The telephone consultation was perceived as a useful tool to care for people with SMI. Video consultation was valued as a requirement in isolated rural areas. Theme 3 was the role of the caregiver during the clinical interview. The caregiver was considered by the patients as an ally who improves the clinical interview. Theme 4 was the perceived barriers and facilitators during the clinical interview. The continuity of care, defined by a low turnover of GPs, determined the quality perceived by those who required care. Conclusion: Themes emerging from this study have suggested that people with SMI require an inclusive, collaborative, and personalised approach in the care they receive from the public health system. Improved communication between GPs and patients with SMI is an essential requirement for quality medical care. [ABSTRACT FROM AUTHOR]

Trans people – those whose gender identity does not match that assigned to them at birth – are at considerably elevated risk of homelessness, reflecting their marginalized legal, bureaucratic and socio-economic status. Recent substantial international expansion to the medico-legal rights afforded them operates in tension with cisnormative welfare structures. Based upon a Critical Discourse Analysis of interviews with 35 trans people with experience of homeless in Wales, UK, alongside 12 workers in the system, I argue that anti-discrimination legislation is insufficient in its current form to prevent discrimination against trans people. I suggest that, without addressing deeper structural cisnormativity, service provision for trans people experiencing homelessness and other forms of social marginalisation will remain inadequate. This argument rests upon the following findings. (1) Failing to consider exclusion at a structural level leads to system-gaps and misunderstandings, producing poor service experiences. (2) The specific needs of trans applicants are under considered in system planning, reducing scope for meaningful homelessness interventions. (3) An equalities approach can produce a reductive and potentially pathologizing focus upon trans identity, diverting from specific individual needs. I conclude that provision of inclusive services necessitates consideration of the impact of deep cisnormative assumptions in service design and delivery, and their resultant exclusion of trans people. [ABSTRACT FROM AUTHOR]

Background: Because of the shift towards earlier diagnosis of dementia and/or Alzheimer's disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work‐up to the needs of individual patients. To optimize the quality of care, we explored patients' perspectives regarding the diagnostic work‐up at a specialized memory clinic. Methods: This interview study was conducted at Karolinska University Hospital (Sweden). The comprehensive diagnostic work‐up for dementia at the memory clinic in Solna is conducted within 1 week. A sample of 15 patients (8 female; mean age = 61 years [range 50–72]; 11 SCD, 1 MCI and 3 AD dementia) was purposively selected for a series of three semistructured interviews, focussing on (1) needs and expectations (during the week of diagnostic testing), (2) experiences (within 2 weeks after test‐result disclosure) and (3) reflections and evaluation (3 months after disclosure). Transcribed audio‐recorded data were analyzed using thematic content analysis (using MaxQDA software). Results: Three key themes were identified: (1) the expectations and motivations of individuals for visiting the memory clinic strongly impacted their experience; (2) the diagnostic work‐up impacted individuals psychosocially and (3) the diagnostic work‐up provided an opportunity to motivate individuals to adopt a healthier lifestyle. Conclusion: Our findings underscore the importance of enquiring about the expectations and needs of individuals referred to a specialized memory clinic, allowing for expectation management and personalization of provided information/advice, and potentially informing the selection of patients in need of a comprehensive diagnostic work‐up. Structural guidance might be needed to support those with SCD and MCI to help them cope with uncertainty, potentially resolve their issues, and/or stimulate brain health. Patient or Public Contribution: We gathered the perspectives of 15 individuals who had been referred to the memory clinic at three different time points through semistructured interviews, and these interviews were the primary data source. [ABSTRACT FROM AUTHOR]

Purpose: Long Covid syndrome is a multiorgan condition with multiple sequelae affecting quality of life, capacity to work and daily activities. The advantages that new technologies can offer are presented as an opportunity in the current healthcare framework. Objective: This research aimed to explore people with Long Covid's experiences with a digital physiotherapy practice intervention, during four weeks. Methods: Qualitative semistructured interviews were conducted by video call. Thirty‐two Long Covid participants were invited to join an in‐depth interview once the intervention was completed. Participants were queried on their intervention experiences and perceptions, as well as any lifestyle changes made, as a result of receiving digital physiotherapy practice. The interviews were transcribed and analysed using inductive qualitative content analysis. Results: In‐depth qualitative analysis has revealed four themes that reflect participants' perceptions of digital physiotherapy intervention. The helpfulness of the exercises, interaction with the physiotherapist, the domestic use of technology and the future of digital health practice were the topics highlighted by Long Covid participants. Some improvements have been suggested including video sounds and the need to introduce face‐to‐face sessions. Participants stated that interventions were helpful and superior to printed exercise sheets, mobile phone apps and usual care received. This intervention did not present major barriers, highlighting the importance of personalized care and continuity in the provision of health services. Conclusion: The digital physiotherapy practice is perceived by people with Long Covid as an appropriate method for the care of their health needs. Participants stated the need for this type of intervention in the public health system, where it would eliminate waiting lists, facilitate accessibility and improve existing care. Patient and Public Contribution: Participants contributed to the interpretation of the data acquired in the interview. Clinical Trial Registration: Trial registration NCT04742946. [ABSTRACT FROM AUTHOR]

Background: Unhelpful illness perceptions can be changed by means of interventions and can lead to improved outcomes. However, little is known about illness perceptions in patients with chronic kidney disease (CKD) prior to kidney failure, and no tools exist in nephrology care to identify and support patients with unhelpful illness perceptions. Therefore, this study aims to: (1) identify meaningful and modifiable illness perceptions in patients with CKD prior to kidney failure; and (2) explore needs and requirements for identifying and supporting patients with unhelpful illness perceptions in nephrology care from patients' and healthcare professionals' perspectives. Methods: Individual semi-structured interviews were conducted with purposive heterogeneous samples of Dutch patients with CKD (n = 17) and professionals (n = 10). Transcripts were analysed using a hybrid inductive and deductive approach: identified themes from the thematic analysis were hereafter organized according to Common-Sense Model of Self-Regulation principles. Results: Illness perceptions considered most meaningful are related to the seriousness (illness identity, consequences, emotional response and illness concern) and manageability (illness coherence, personal control and treatment control) of CKD. Over time, patients developed more unhelpful seriousness-related illness perceptions and more helpful manageability-related illness perceptions, caused by: CKD diagnosis, disease progression, healthcare support and approaching kidney replacement therapy. Implementing tools to identify and discuss patients' illness perceptions was considered important, after which support for patients with unhelpful illness perceptions should be offered. Special attention should be paid towards structurally embedding psychosocial educational support for patients and caregivers to deal with CKD-related symptoms, consequences, emotions and concerns about the future. Conclusions: Several meaningful and modifiable illness perceptions do not change for the better by means of nephrology care. This underlines the need to identify and openly discuss illness perceptions and to support patients with unhelpful illness perceptions. Future studies should investigate whether implementing illness perception-based tools will indeed improve outcomes in CKD. [ABSTRACT FROM AUTHOR]

How does the American public understand the term chaplain? What fraction interact with chaplains and in what settings? What is the content of those interactions and do care recipients find them valuable? We answer these questions with data from a nationally representative survey (N = 1096) conducted in March 2022 and interviews with a subset (N = 50) of survey recipients who interacted with chaplains. We find that people in the United States do not have a consistent understanding of the term chaplain. Based on our definition, at least 18% of Americans have interacted with a chaplain. Among those who interacted with a chaplain as defined in the survey, the majority did so through healthcare organizations. Care recipients include people who were ill and their visitors/caregivers. The most common types of support received were prayer, listening and comfort. Overall, survey respondents found chaplains to be moderately or very valuable. [ABSTRACT FROM AUTHOR]