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Objective: Hearing loss in the older adult population is a significant global health issue. Hearing aids can provide an effective means to address hearing loss and improve quality of life. Despite this, the uptake and continued use of hearing aids is low, with non-use of hearing aids representing a significant problem for effective audiological rehabilitation. The aim of this study was to investigate the reasons for the non-use of hearing aids. Design and study sample: A cross-sectional survey was used to investigate the reasons given for the non-use of hearing aids by people with hearing loss (n = 332) and family members (n = 313) of people with hearing loss in Australia, the UK, and USA. Results: Survey results showed that hearing aid non-users generally cited external factors as reasons for non-use, whereas family members reported non-use due to attitudinal barriers. Past users of hearing aids and family members of past users both identified devices factors as barriers to use. Conclusions: Differences in reasons for non-use may provide further insight for researchers and clinicians and help inform future clinical practice in addressing the low uptake and use of hearing aids by people with hearing loss and the role of family members in audiological rehabilitation. [ABSTRACT FROM AUTHOR]

Background: There are limited tools to measure the burden of disease and effectiveness of medical/surgical interventions in patients with cryptoglandular fistulas. The aim of this study was to explore concepts that are relevant and important to patients with complex cryptoglandular fistulas (CCF) and to develop a patient-centred, disease-specific, patient-reported outcome measure (PROM) to assess symptom burden and impacts of CCF. Methods: A targeted literature review was conducted, followed by one-to-one telephone interviews with five colorectal surgeons (USA, n = 3; UK, n = 1; Spain, n = 1) and 20 US adult patients with CCF to inform the development of a conceptual model and a CCF-specific PROM. The targeted literature review informed the development of the preliminary conceptual model and identified a PROM in the literature that was used as a reference to generate the draft CCF-specific PROM. The colorectal surgeon interviews provided insights on the experience of patients with CCF to refine the conceptual model, formulate probing questions for use in patient interviews, and to develop the draft CCF-specific PROM. Patients' descriptions of their experiences with symptoms and the impacts on their lives and evaluation of the draft CCF-specific PROM in concept elicitation and cognitive interviews were used to develop the final conceptual model and final CCF-specific PROM. Results: Ten symptoms (odour, pain during bowel movement, abscess, post-operative pain, discharge/drainage/leakage, anal/perianal pain, inflammation/swelling, skin irritation, bleeding and itchiness) and 11 impacts (discomfort, inability to exercise, embarrassment, difficulty sitting, worry about disease, adapted life to maintain hygiene, negatively impacted social life/isolation, inability to perform daily activities, reduced interest in sex, negatively impacted intimate relationships and negatively impacted mood) were reported as most salient by patients. The patient experience, clinician perspective, and literature review provided input to item generation. Evaluation of relevance and patient understanding through cognitive interviews with patients provided evidence for the content validity of the new patient-reported outcome measure: the 20-item Complex Cryptoglandular Fistula Questionnaire™ (CCFQ-20™). Conclusion: The CCFQ-20™ is a new clinician-guided, patient-validated, disease-specific patient-reported outcome measure that measures disease impact and quality of life in patients with CCF. [ABSTRACT FROM AUTHOR]

Individuals with concealable stigma continually decide whether, and if so, how to disclose to others. These complex decision-making processes are evident across various stigmatized sexual health contexts, including sexually transmitted diseases and infections, LGBTQ+ identities, and sexual trauma, among others. One context that has received less attention within communication scholarship is difficulty orgasming among women. Due to the stigma associated with this experience, women are often reluctant to disclose their orgasm difficulties to others, especially their sexual and/or relational partners. However, the motivations women have for, and the factors they consider prior to disclosure have yet to be identified. Building upon extant sexual health communication, concealable stigma, and disclosure research, this study used semi-structured interviews (N = 31) to examine how women disclose orgasm difficulties within their sexual and/or romantic relationships. Our findings highlight several motivations women have for (non)disclosure, and various contextual and situational factors that complicate their disclosure processes. This study contributes to our theoretical understanding of the disclosure processes model (DPM) and the disclosure of concealable (sexual health) stigma. This study also offers practical insights for improving disclosure and experiences with stigma within this context. [ABSTRACT FROM AUTHOR]

The EA-QOL questionnaire measures quality-of-life specifically for children born with esophageal atresia (EA) aged 8–18 and was completed in Sweden and Germany. This study aimed to describe an international collaborative initiative to establish a semantically equivalent linguistic version of the EA-QOL questionnaires in 12 new countries. The 24-item EA-QOL questionnaire was translated into the target languages and the translated questionnaire was evaluated through cognitive debriefing interviews with children with EA aged 8–18 and their parents in each new country. Participants rated an item as to whether an item was easy to understand and sensitive/uncomfortable to answer. They could choose not to reply to a non-applicable/problematic item and provide open comments. Data were analyzed using predefined psychometric criteria; item clarity ≥80%, item sensitive/uncomfortable to answer ≤20%, item feasibility(missing item responses ≤5%). Decision to improve any translation was made by native experts–patient stakeholders and the instrument developer. Like in Sweden and Germany, all items in the cross-cultural analysis of child self-report (ntot = 82, 4–10 children/country) met the criteria for item clarity in all 12 new countries, and in parent-report (ntot = 86, 5–10 parents/country) in 8/12 countries. All items fulfilled the criteria for sensitive/uncomfortable to answer (child-report 1.2–9.9%; parent-report 0–11.6%) and item feasibility. Poor translations were resolved. Hence, this study has established semantically equivalent linguistic versions of the EA-QOL questionnaire for use in children aged 8–18 with repair of EA in and across 14 countries. [ABSTRACT FROM AUTHOR]

Moral thinking and communication are critical competencies for confronting social dilemmas in a challenging world. We examined these moral competencies in 70 college students and graduates from Taiwan, the United Kingdom, and the United States. Participants were assessed through semi-structured written interviews, Facebook group discussions, and a questionnaire. In this paper, we describe the similarities and differences across cultural groupings in (1) the social issues of greatest importance to the participants; (2) the factors influencing their approaches to thinking about social issues and communicating with others; and (3) the characteristics of their moral functioning in terms of moral awareness, moral judgment, moral discourse, and moral decision-making. [ABSTRACT FROM AUTHOR]

Background: Immunological responses to metal ions can occur in people with metal implantable devices. Nevertheless, patients are not routinely asked about metal hypersensitivity nor tested for it prior to surgical procedures. Moreover, we have not identified any published literature on patients' experiences with this condition. We undertook this study to better understand the experiences of patients with metal hypersensitivity and to determine what information would help them make an informed decision about implantable medical devices with metal compositions. Methods: This is a patient-oriented research using an interpretative phenomenological methodology. We enrolled 16 people from five countries (Canada, New Zealand, Spain, the UK, and the USA) who experienced metal hypersensitivity following implantable medical device. We collected data from in-depth, semi-structured interviews focused on pre-procedural patient education and postoperative experiences to elucidate the barriers and opportunities related to metal hypersensitivity. We analyzed the data using interpretative phenomenological analysis. Results: The majority were white biological women between the ages of 34 and 65. None of the participants were informed about immunological responses to metals in implants during the consenting process. They encountered many challenges when symptoms of metal hypersensitivity occurred. The outcomes for the few who had the implants removed were mixed. Conclusion: Hypersensitivity reactions to metal need to be discussed as part of the consenting process, and additional strategies are needed to mitigate this issue in the health system. [ABSTRACT FROM AUTHOR]

Objectives Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. Results Sixty semi-structured qualitative interviews were conducted (UK n  = 34, USA n  = 10, Australia n  = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. Conclusion We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the parent‐proxy version of the pediatric Charcot Marie Tooth specific quality of life (pCMT‐QOL) outcome instrument for children aged 7 or younger with CMT. We have previously developed and validated the direct‐report pCMT‐QOL for children aged 8–18 years and a parent proxy version of the instrument for children 8–18 years old. There is currently no CMT‐QOL outcome measure for children aged 0–7 years old. Methods: Testing was conducted in parents or caregivers of children aged 0–7 years old with CMT evaluated at participating INC sites from the USA, United Kingdom, and Australia. The development of the instrument was iterative, involving identification of relevant domains, item pool generation, prospective pilot testing and clinical assessments, structured focus group interviews, and psychometric testing. The parent‐proxy instrument was validated rigorously by examining previously identified domains and undergoing psychometric tests for children aged 0–7. Results: The parent‐proxy pCMT‐QOL working versions were administered to 128 parents/caregivers of children aged 0–7 years old between 2010 and 2016. The resulting data underwent rigorous psychometric analysis, including factor analysis, internal consistency, and convergent validity, and longitudinal analysis to develop the final parent‐proxy version of the pCMT‐QOL outcome measure for children aged 0–7 years old. Conclusions: The parent‐proxy version of the pCMT‐QOL outcome measure, known as the pCMT‐QOL (0–7 years parent‐proxy) is a valid and sensitive proxy measure of health‐related QOL for children aged 0–7 years with CMT. [ABSTRACT FROM AUTHOR]

Bondage/discipline, dominance/submission, and sadism/masochism (BDSM; "kink") are frequently pathologized as derivatives of abuse. Although the link is unsubstantiated, some kink-identified people who happen to be survivors of trauma may engage in kink, or trauma play, to heal from, cope with, and transform childhood abuse or adolescent maltreatment. The present study sought a thematic model (Braun & Clarke, Qualitative Research in Psychology, 3(2), 77–101, 2006) of trauma recovery through kink using a critical realist, inductive approach to inquiry. Participants were eligible if they had experienced early abuse, were adults, and practiced kink. Six superordinate themes were generated from semi-structured interviews with 20 participants from five countries: cultural context of healing (e.g. using BDSM norms and previous therapy to reframe kink and trauma), restructuring the self-concept (e.g. strengthening internal characteristics which had been harmed or distorted), liberation through relationship (e.g. learning to be valued by intimate others), reclaiming power (e.g. setting and maintaining personal boundaries), repurposing behaviors (e.g. engaging in aspects of prolonged exposure), and redefining pain (e.g. transcending painful memories through masochism). Notably, participants only reported retraumatizing experiences prior to learning about the structural safeguards of BDSM. Research and clinical implications are discussed by drawing on general models of trauma recovery. [ABSTRACT FROM AUTHOR]

Background: There is considerable burden of illness in hereditary angioedema (HAE). However, instruments to assess health-related quality of life (HRQoL) in HAE are limited. The Angioedema Quality of Life Questionnaire (AE-QoL) was developed to measure HRQoL in patients with recurrent angioedema; the validity of the AE-QoL in patients with HAE is described. Methods: To identify disease-related experiences with a focus on the impact of HAE on HRQoL, interviews were conducted with a group of clinician experts and patients with HAE from Canada, France, Germany, Spain, the United Kingdom, and the United States, along with a targeted literature review. Concepts were mapped to the AE-QoL to assess item relevance, interpretation, and conceptual coverage. Cognitive interviews assessed item clarity and relevance. A psychometric validation was performed using data from a phase 3 trial. Results: Interviews were conducted with seven clinicians and 40 adult patients. Patients reported 35 unique impacts of HAE on their lives, the most frequent being on work/school, social relationships, physical activities, and emotions, particularly fear/worrying and anxiety. Saturation for these impacts was reached, and all concepts covered in the AE-QoL were reported during the interviews. Patients agreed that the questionnaire items and response options were clear and relevant, and the 4-week recall period was appropriate. The psychometric validation included data from 64 patients. For AE-QoL total scores, excellent internal consistency (Cronbach's alpha > 0.90), test-retest reliability (intraclass coefficient > 0.80), convergent validity with the Sheehan Disability Scale (r = 0.663), divergent validity with the EQ-5D-5L index (r = 0.292) and EQ-VAS (r = 0.337), and known-groups validity (p < 0.0001; ɳ2 = 0.56) were demonstrated. Conclusions: Qualitative and psychometric analyses showed that the AE-QoL is a reliable and valid instrument for measuring HRQoL in adult patients with HAE from six countries. [ABSTRACT FROM AUTHOR]

This phenomenological study explored experiences of asexual identified persons within the context of relationships. Thirty-five asexual spectrum identified participants took part in semi-structured interviews that focused on how they viewed themselves and their uniquenesses within relationship dynamics. Queer theory guided the research design and analysis. Findings include a movement towards understanding and experiencing relationships that extend beyond heteronormativity. Themes included: (a) evolving asexual identity development, (b) conscious adapting and communication within relationships, (c) reconsidering amatonormativity, and (d) therapeutic recommendations. Participants identified that their relationships were distinctly different from social expectations; however, overall, partners adapted successfully to these differences with communication and understanding. Findings contribute to a greater competency in asexual identities. [ABSTRACT FROM AUTHOR]

Introduction: Treatment decisions in older adults with acute myeloid leukemia (AML) are challenging, particularly for those who are not candidates for intensive chemotherapy (IC), and the trade-offs patients, their families and physicians consider when choosing a treatment option are not well understood. This qualitative research explored the value of extending survival and the treatment decision-making process from a multi-stakeholder perspective. Methods: Overall, 28 patients with AML (≥ 65 years old, unsuitable for IC), 25 of their relatives and 10 independent physicians from the US, UK and Canada took part in one-on-one, 60-minute qualitative interviews. Results: Across all stakeholders, improved health-related quality of life (HRQoL), extended survival and relief of AML symptoms were recognized as most important in AML treatment decision-making. However, extending survival in 'good health' was more important than extending survival alone, particularly because of the extra time it gives patients and their relatives together, and allows patients to achieve important goals. Patients' limited understanding of available treatment options, paired with incorrect perceptions of treatment side effects, impacted their involvement in the treatment decision-making process. Patients and physicians perceived physicians to have the most influence in the decision-making process despite their priorities not always aligning. Conclusion: These findings illustrate the importance of having structured discussions which explicitly assess patients' goals and their understanding and expectations of treatments and also the need for patient friendly resources about the lived experience of AML and available treatment options. These measures will help to ensure that patients are fully involved in the shared decision-making process. [ABSTRACT FROM AUTHOR]

The National Diabetes Prevention Program (NDPP) offers lifestyle change education to adults at risk for diabetes across the United States, but its reach is curbed due, in part, to limitations of traditional in-person programs. Diabetes Prevention Programs (DPPs) that are fully digital may increase reach by overcoming these barriers. The aim of this research was to examine the reach of Lark's DPP, a fully digital artificial-intelligence-powered DPP. This study assessed geographic features and demographic characteristics of a sample of Lark DPP commercial health plan members with complete data (N = 16,327) and compared several demographic features with a large composite sample of members from DPPs across the nation (NDPP; N = 143,489) and a National Health Interview Survey (NHIS) sample of prediabetic adults in the United States (NHIS; N = 2118). Examination of the Lark DPP sample revealed that 24.4% of members lived in rural areas, 30.8% lived in whole county health professional shortage areas, and only 7.6% of members lived in a zip code with an in-person DPP. When comparing the Lark sample with the NDPP and NHIS samples, Lark DPP enrollees tended to be younger and have a higher body mass index (BMI) (p's < 0.001). Lark provides convenient access to a DPP for individuals living in hard-to-reach areas who may face barriers to participating in in-person or telephonic DPPs or who prefer a digital program. Compared with the NDPP sample, Lark is also reaching younger and higher BMI users, who are traditionally difficult to enroll and have a high need for intervention. [ABSTRACT FROM AUTHOR]

This study examined the association between perceived racial discrimination and disability among Asian and Latinx residents of the United States, as the link between discrimination and disability has gone largely ignored in analyses of these populations. Nationally representative samples included 2046 Asian Americans and 2515 Latinx Americans from the National Latino and Asian American Study (NLAAS). We used multivariable logistic regression and multivariable negative binomial regression to analyze the association between racial discrimination and five different disability domains as well as racial discrimination and a count of simultaneous functional limitations, respectively. The disability domains included: self-care, cognition, mobility, time out of role, and social interaction. Perceived racial discrimination positively and significantly predicted impairments across a variety of disability domains for both Asian and Latinx populations. The estimated associations between racial discrimination and disability were heterogeneous across Asian and Latinx ethnicities. Racial discrimination may contribute to stress for Asians and Latinxs in the United States, potentially increasing the possibility these populations develop disabilities. Rehabilitation efforts should consider the social contexts in which people of color live, recognizing that discrimination may differentially affect risk profiles for disabilities across racial and ethnic groups. Across Asian and Latinx populations, racial discrimination is associated with impairments in self-care, cognition, mobility, time out of role, and social interaction. Future translational research can explore the utility of brief racial discrimination screens in clinical settings to assess risk for disability in various domains. Professionals should attend to the stress and overall impact of racial discrimination, as it is conceivable that racial discrimination may result in the exclusion or hindrance of people of color who are pursuing meaningful participation in places of work, public spaces, and civic life. Society bears the collective obligation to reduce discrimination against Asian and Latinx populations, particularly against those who experience disability. [ABSTRACT FROM AUTHOR]

Pandemics threaten world stability; however, spread is mitigated with prevention behaviors. We introduce "personally relevant knowledge" to explain the knowledge–behavior gap (i.e., objective and subjective knowledge on information acquisition and behavioral change). Hypotheses are derived from prior knowledge literature, economic psychology, and relevance theory. Multimethod analysis (survey data, partial least squares structural equation path modeling [PLS-SEM], and an asymmetric information theoretic statistical analysis) is applied to H1N1 data from the USA and Australia. Personally relevant knowledge is an important addition to prior knowledge conceptualizations, and information theory uncovers asymmetric variable relationships concerning the knowledge–behavior gap, not captured by PLS-SEM. [ABSTRACT FROM AUTHOR]