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Background: In the US, over 50% of suicide deaths are by firearm injury. Studies have found that limiting access to firearms, including storing them temporarily outside of the home or locking and unloading them securely at home, helps prevent suicide. Family members and other loved ones are in a unique position to encourage secure firearm storage. This paper describes the development of a workshop to empower loved ones of individuals at risk for suicide to discuss secure firearm storage in New York State. Methods: Using a multistakeholder engagement framework, we partnered with New York State county-level suicide prevention coalitions, local firearms experts, and other stakeholders to develop a 90-min workshop addressing secure firearm storage for suicide prevention. Pilot workshops were co-facilitated by a suicide prevention coalition member and a local firearms expert. Feedback gathered via surveys from workshop attendees and interviews with workshop co-facilitators were used to revise workshop content and inform dissemination. Following pilot workshops, a 1-day training event was held for potential future facilitators, and survey data were collected to assess trainee experiences and interest in facilitating future workshops. Data analysis included rapid qualitative analysis of interviews and statistical analysis of survey responses about acceptability of workshop. Results: Four pilot workshops included a total of 23 attendees. Pilot workshop attendees endorsed willingness and confidence to discuss secure firearm storage with a family member or loved one. The training event included 42 attendees, of which 26 indicated interest in facilitating a workshop within the next year. Co-facilitators agreed on several key themes, including the importance of having a "trusted messenger" deliver the firearms portion of the workshop, keeping the conversation focused on firearm safety for suicide prevention, and developing interventions that reflect firearm owning community's culture. Conclusions: Consistent with a public health approach to suicide prevention, this study leveraged a multistakeholder engagement framework to develop a community-based workshop empowering loved ones of individuals at risk for suicide to discuss secure firearm storage. The workshop will be disseminated across New York State. We noted positive and collaborative relationships across stakeholder groups, and willingness to facilitate the workshop among both suicide prevention and firearm stakeholders. [ABSTRACT FROM AUTHOR]

Rural areas are becoming more and more concerned about their aging population and perceived loss of youth. Analysts see the older members of communities as a burden, and focus their development strategies on attracting and retaining the young. In doing so, they may be missing the value that elders' civic engagement can provide to rural community development. This qualitative study, based on interviews with 40 elders in mostly rural areas of Wisconsin, in the United States, shows the benefits that their civic engagement brings to rural areas. They have biographical availability, political and economic freedom, and life-long experience to offer. They do face some challenges, including occasional health issues, lack of technological agility, and change-resistant peers. The paper concludes by considering how communities can better access and honour elder civic engagement, including understanding elders' motivations and skills for civic engagement. [ABSTRACT FROM AUTHOR]

Research has repeatedly shown the positive effects of early diagnosis and intervention in improving the quality of life and symptom trajectory of individuals with autism spectrum disorder (ASD). Immigrant and racial/ethnic minority children are diagnosed with ASD at significantly older ages, and have access to interventions later than their White peers. Recent efforts to address diagnostic disparities have focused on universal ASD screening in pediatric primary care. However, little is known about immigrant families' experiences with ASD screening and with navigating subsequent referrals after receiving a positive ASD screen. In the current study, we explored cultural influences on: mothers' perceptions of child development and disability, communication with pediatric healthcare providers, and perceived benefits of Early Intervention services. We interviewed 26 mothers (14 US-born and 12 immigrant—representing twelve different nationalities) of children who screened positively for ASD in primary care but did not receive an ASD diagnosis after a formal evaluation (i.e., false positive ASD screen). Mothers completed semi-structured qualitative interviews that explored their perceptions of child development, experiences with the ASD screening and developmental evaluation process, and experiences with developmental services. Data were stratified by U.S. nativity and analyzed using applied thematic analysis. Immigrant mothers described different ways of monitoring child development than US-born mothers, and described a mismatch between their own views and the child development frameworks used in the U.S. Due to this mismatch, immigrant parents may be less likely to raise concerns to their pediatricians, and therefore may particularly benefit from routine screening. This paper uses data from a supplemental study to a larger clinical trial. The clinical trial registration number is NCT02359084. Highlights: Immigrant families view child development as a process that unfolds uniquely for each child, therefore, monitoring development through milestones can be a new idea for culturally diverse families. Immigrant children with elevated risk for ASD may be at higher risk for later identification of developmental delays if they are not screened at their well-child visits. Culturally and linguistically accessible explanations of child development and disabilities can help immigrant families throughout the ASD screening process. Immigrant families emphasize benefiting from family navigation and logistical support during the developmental evaluation process. [ABSTRACT FROM AUTHOR]

Objectives: Community health worker (CHW) programs are a promising strategy to improve maternal and child health outcomes, particularly among low-resource women. Yet, little is known about which aspects of CHW-client relationships are most salient for promoting positive change. This paper examines features of the CHW-client relationship that perinatal women with chronic conditions reported as being beneficial for their experience of prenatal care and pregnancy. Methods: Focus groups and interviews were conducted with 18 CHWs and 39 clients from three Merck for Mothers-funded programs in the Eastern United States. Data were analyzed using a grounded theory-informed thematic approach. Results: CHWs built trust-based relationships through emotional attendance, authenticity, and prioritization of clients' needs. They provided instrumental, informational, and emotional support that clients reported facilitated greater engagement with the healthcare system, improved health behaviors, and reduced stress. CHWs and clients alike viewed their relationships as having long-lasting impacts, made possible by the trust-based bond between them. Discussion: Strong, trusting relationships with CHWs may be one avenue through which to improve maternal and infant health for vulnerable perinatal women. Community health care programs should promote trust-building as an explicit program goal. Trust-based CHW-client relationships may serve as an exemplar for transforming traditional care relationships between providers and clients, leading to greater client engagement in care and improved health. [ABSTRACT FROM AUTHOR]

Background: Accurate symptom monitoring is vital when managing pediatric asthma, providing an opportunity to improve control and relieve associated burden. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) has been validated for asthma control assessment in children; however, there are concerns that response option images used in the C-ACT are not culturally universal and could be misinterpreted. This cross-sectional, qualitative study developed and evaluated alternative response option images using interviews with children with asthma aged 4–11 years (and their parents/caregivers) in the United States, Spain, Poland, and Argentina. Interviews were conducted in two stages (with expert input) to evaluate the appropriateness, understanding and qualitative equivalence of the alternative images (both on paper and electronically). This included comparing the new images with the original C-ACT response scale, to provide context for equivalence results. Results: Alternative response option images included scale A (simple faces), scale B (circles of decreasing size), and scale C (squares of decreasing quantity). In Stage 1, most children logically ranked images using scales A, B and C (66.7%, 79.0% and 70.6%, respectively). However, some children ranked the images in scales B (26.7%) and C (58.3%) in reverse order. Slightly more children could interpret the images within the context of their asthma in scale B (68.4%) than A (55.6%) and C (47.5%). Based on Stage 1 results, experts recommended scales A (with slight modifications) and B be investigated further. In Stage 2, similar proportions of children logically ranked the images used in modified scales A (69.7%) and B (75.7%). However, a majority of children ranked the images in scale B in the reverse order (60.0%). Slightly more children were able to interpret the images in the context of their asthma using scale B (57.6%) than modified scale A (48.5%). Children and parents/caregivers preferred modified scale A over scale B (78.8% and 90.9%, respectively). Compared with the original C-ACT, most children selected the same response option on items using both scales, supporting equivalency. Following review of Stage 2 results, all five experts agreed modified scale A was the optimal response scale. Conclusions: This study developed alternative response option images for use in the C-ACT and provides qualitative evidence of the equivalency of these response options to the originals. Plain English summary: Accurate monitoring of the symptoms associated with pediatric asthma is important when managing the condition. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) is a questionnaire widely used to measure asthma severity in young children (aged 4–11 years). Each question answered by the child in the C-ACT has four possible answer choices. To help children answer, each choice is presented alongside an image of a male child's face ranging from sad to happy. However, there are concerns that the images used are not culturally universal and could be misinterpreted—due to difficulties translating to electronic formats and a lack of differentiation between the images used. Through interviewing children with asthma, we aimed to address these concerns by developing and testing new images. Alternative image options developed included simpler faces, circles of decreasing size and squares of decreasing quantity. Children aged 4–11 years old were interviewed to test whether they understood the response scale using the new images and if they answered in the same way as with the original images. Interviews were conducted in two stages, with expert guidance at key stages. Results showed that children can interpret and understand the newly developed images and that they answer the questions the same as they would using the original images. These new images have the advantages of being culturally neutral and easier to implement on an electronic device. [ABSTRACT FROM AUTHOR]

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This study uses in-depth, qualitative interviews to examine the facilitators/supports and barriers/challenges faced by parents reentering their communities after incarceration. Findings are framed within the context of Bronfenbrenner's ecological framework. Parents reentering their communities after incarceration often face a host of challenges related to their reentry experience (e.g. finding housing/employment) and their parenting experience (e.g. navigating familial relationships). Parenting scholars have urged communities to adopt holistic intervention methods at each level of the ecological model—including an individual's microsystem, mesosystem, exosystem, and macrosystem to help families experiencing this trauma thrive. In order to examine which areas within the ecological system families are receiving support (and which areas are still lacking), this study uses qualitative data from 14 semi-structured interviews with parents who recently reentered their communities after incarceration and had a minor child at the time of reentry. Interviews were recorded, transcribed, and coded based on a priori themes. Participants listed both barriers/challenges and facilitators/strengths at reentry that fell into three main categories including 1. Access to children or resources, 2. Social connections, 3. Personal introspection related to parenting. Barriers and supports are described within each level of the ecological model. Findings suggest interventions are needed to buffer, support, and help reentering parents gain parenting skills/knowledge, spend quality time with their children, and access reentry programs to help parents/children develop healthy attachment and promote smoother reintegration into their community. These interventions should be implemented at various levels within the ecological model. Highlights: We examine the experiences of parents during incarceration and reentry using Bronfenbrenner's ecological model. At the microsystem level, parent/child relationships were strained because of lack of connections, problematic behavior, and lack of social support. At the mesosystem level, parents experienced challenges with reentry programming, prison policies, and custody issues. At the exosystem level, parents discussed difficulty finding housing/employment that was sufficient for their families. At the macrosystem level, parents described how wide-spread policies (e.g., background checks, prison policies) impacted them on an individual level. [ABSTRACT FROM AUTHOR]

Background: Refractory chronic cough (RCC), a cough lasting longer than 8 weeks with an unexplained underlying etiology and unresponsive to conventional treatment, can have substantial effects on patients' quality of life. For assessment of the efficacy of antitussive medication in clinical trials in RCC, patient-reported outcome (PRO) instruments should be fit for purpose with appropriate content validity. Here we describe the qualitative testing of a newly developed PRO instrument: the Severity of Chronic Cough Diary (SCCD). Methods: The SCCD was developed to assess patients' symptom experience of cough in patients with RCC. A preliminary version was tested and refined based on an iterative process in a qualitative study. In total, three rounds of interviews were conducted with adult participants diagnosed with RCC in the USA (n = 19) and UK (n = 10). Rounds 1–3 consisted of hybrid concept elicitation (CE) interviews and cognitive interviews (CIs), with Round 3 also including interviews in a subset of participants (n = 5) about the usability of the SCCD as administered on an electronic handheld device. Results: The CE interviews identified concepts important to patients' experiences related to RCC that were broadly in line with the concepts in the preliminary version of the SCCD. Participants provided positive feedback on the draft SCCD across all CI rounds, reporting the instrument to be relevant and straightforward to complete, and containing a comprehensive set of concepts to evaluate their symptom experience of RCC. Participants demonstrated a good understanding of proposed item wording, response options, and the 24-hour recall period, and thought completion of the SCCD on the electronic device was easy. Following revisions based on results from each interview round, the SCCD at the end of this qualitative research study had 14 items assessing the concepts of: cough symptoms (five items), symptoms related to cough (four items), disruption to activities due to cough (three items), and disruption to sleep due to cough (two items). Conclusions: The results of this study provide qualitative evidence supporting the content validity of the SCCD as a PRO instrument for evaluating outcomes of therapies for RCC in clinical trials. [ABSTRACT FROM AUTHOR]

Background: Familial hypercholesterolemia (FH) is an inherited disease which causes premature atherosclerotic cardiovascular disease. However, less than 10% of individuals with FH have been identified. Objective: To assess parental perspectives for inclusion of FH on routine newborn screening (NBS) and to highlight potential benefits, harms, and ethical concerns. Methods: Telephone interviews of two groups were conducted: 1) parents of children diagnosed with FH, and 2) parents of children diagnosed with a genetic condition through NBS. Stratified purposive sampling was used to ensure adequate representation. The 11 telephone interviews were conducted in 30-min sessions guided by a semi-structured interview script. At the beginning of the interview, participants were educated on the NBS process and FH. The interviews were transcribed verbatim, and a thematic analysis was performed in multiple steps. Results: All interviewees indicated that they would be interested in having their child be screened for FH on the newborn screen. Reasons supporting screening during the newborn period included knowing their child's diagnosis, the ability to screen family members for FH, incorporation of lifestyle changes, and access to preventive care. Negatives surrounding screening during the newborn period included increased stress or anxiety, knowledge, stigma, and the delay from diagnosis to initiation of pharmacotherapy for FH. Conclusion: While these interviewees were in favor of NBS for FH, further education of parents and clinicians is needed to ensure proper implementation. The results of this study may be useful to formulate family notification and care protocols for newborns diagnosed with FH and other diseases. Significance: What is already known on this subject? Familial hypercholesterolemia is a common inherited disorder that predisposes to early cardiovascular disease, but most affected individuals are not diagnosed. Childhood cholesterol screening is an effective but underutilized diagnostic tool. Previous studies report parents find childhood cholesterol screening acceptable, but it is not known if screening newborns would also be acceptable. What does this study add? Interviewees found screening newborns for familial hypercholesterolemia acceptable and would agree to screen their own newborn. The ability to screen other family members and access to early treatment were important factors in their decision to screen. Education of clinicians about familial hypercholesterolemia was an important concern raised by interviewees. [ABSTRACT FROM AUTHOR]

Background: The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome (PRO) measure scored by body system composites to assess signs/symptoms of coronavirus disease 2019 (COVID-19). In addition to cross-sectional and longitudinal psychometric evaluations, qualitative exit interviews were conducted to support the content validity of the SIC. Methods: In a cross-sectional study, adults diagnosed with COVID-19 in the United States completed the web-based SIC and additional PRO measures. A subset was invited to participate in phone-based exit interviews. Longitudinal psychometric properties were assessed in ENSEMBLE2, a multinational, randomized, double-blind, placebo-controlled, phase 3 trial of the Ad26.COV2.S COVID-19 vaccine. Psychometric properties evaluated included structure, scoring, reliability, construct validity, discriminating ability, responsiveness, and meaningful change thresholds of SIC items and composite scores. Results: In the cross-sectional study, 152 participants completed the SIC (mean age, 51.0 ± 18.6 years) and 20 completed follow-up interviews. Fatigue (77.6%), feeling unwell (65.8%), and cough (60.5%) were symptoms most frequently reported. SIC inter-item correlations were all positive and mostly moderate (r ≥ 0.3) and statistically significant. SIC items and Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29) scores correlated as hypothesized (all r ≥ 0.32). Internal consistency reliabilities of all SIC composite scores were satisfactory (Cronbach's alpha, 0.69–0.91). SIC composite scores correlated moderately (r = 0.30–0.49) to strongly (r ≥ 0.50) with PROMIS-29 scores and Patient Global Impression of Severity (PGIS) ratings (all P < 0.01). A variety of signs/symptoms were cited in exit interviews, and participants considered the SIC straightforward, comprehensive, and easy to use. From ENSEMBLE2, 183 participants with laboratory-confirmed moderate to severe/critical COVID-19 were included (51.5 ± 14.8 years). Strong test-retest reliabilities were observed for most SIC composite scores (intraclass correlations ≥ 0.60). Statistically significant differences across PGIS severity levels were found for all but 1 composite score, supporting known-groups validity. All SIC composite scores demonstrated responsiveness based on changes in PGIS. Conclusions: The psychometric evaluations provided strong evidence for the reliability and validity of the SIC for measuring COVID-19 symptoms, supporting its use in vaccine and treatment trials. In exit interviews, participants described a broad range of signs/symptoms consistent with previous research, further supporting the content validity and format of the SIC. Plain english summary: Coronavirus disease 2019 (COVID-19) is a serious disease that continues to evolve globally. Researchers developed the Symptoms of Infection with Coronavirus-19 (SIC), a 30-item questionnaire designed for patients to report signs and symptoms of COVID-19. In this study, the researchers formally analyzed how well the SIC measures the patient experience with COVID-19, using survey and clinical trial data as well as telephone interviews. Adults with COVID-19 and at least 2 bothersome symptoms completed the web-based survey, and some of these individuals also participated in in-depth interviews. Participants in a clinical trial for a COVID-19 vaccine also completed the SIC measure. The SIC was compared with other commonly used questionnaires that evaluate patient experience. The most commonly reported symptoms of COVID-19 were fatigue, feeling unwell, cough, weakness, and headache. The items for individual symptoms (e.g., "cough") and combined scores for body systems (e.g., "respiratory system") performed well in statistical analyses. Participants found the SIC to be straightforward, comprehensive, and easy to use. The SIC may prove useful in the future for vaccine and treatment trials for COVID-19. [ABSTRACT FROM AUTHOR]

This study examined how students with orthopedic impairments experienced strategies identified in the literature to support 'inclusion'. An interpretative phenomenological analysis research approach was used, and six students with orthopedic impairments (age 10–14 years) served as participants. Data sources were written prompts, semi-structured, audiotaped interviews, and reflective interview notes. Based on thematic data analysis, four themes were constructed: "It's kind of embarrassing": experiences with support; "I don't want to be different": equipment, activity, and rule modifications; "I like to be a part of the conversation": autonomy and choice in PE; and "I would rather be like the other students": discussing disability. The experiences portrayed through these themes highlighted the differential effects of these explicated strategies, where each strategy contributed to feelings of inclusion, as well as marginalization among participants. As such, the findings indicated that 'inclusive' strategies should not be considered as blanket recommendations; instead, attempts to promote 'inclusion' of students with disabilities should start with a reflexive look at the unique needs of each individual student. [ABSTRACT FROM AUTHOR]

Background: To capture the broad range of treatment burden issues experienced by adolescent and adult people with hemophilia (PWH), the Hemophilia Treatment Experience Measure (Hemo-TEM) was developed. We describe the development of this new hemophilia-specific patient-reported outcome (PRO) measure including concept elicitation, cognitive debriefing, and psychometric validation. Results: Concept elicitation interviews were conducted with 5 clinical experts and 30 adult PWH in the United States (US). The qualitative analysis of these interviews and a review of the literature informed the PRO measure development. The project team reviewed concept endorsement rates and generated a 27-item preliminary version of the Hemo-TEM. Cognitive debriefing interviews were conducted to ensure participant understanding and item relevance in samples of (adolescent (n = 20) and adult (n = 14)) PWH in the US. The refined, validation-ready version of the Hemo-TEM included 30 items. Lastly, data from 3 clinical trials comprised the 4 analysis sets used for the psychometric validation with a sample size of N = 88. Item reduction dropped 4 items resulting in a final 26-item measure. Factor analysis generated 5 domains in the Hemo-TEM [injection difficulties (3 items), physical impact (6 items), treatment bother (7 items), interference with daily life (4 items), and emotional impact (6 items)] and a total score. All scores were reliable [internally consistent (0.84–0.88)]. For convergent validity, with the exception of one domain, all hypothesized associations were met. Preliminary sensitivity to change effect sizes were between − 0.30 and − 0.70. Meaningful change thresholds ranged from 6 points (physical impact and emotional impact) to 10 points (treatment bother) with 8 points for the Hemo-TEM total score. Conclusions: Findings from the concept elicitation, cognitive debriefing, and psychometric validation phases provide evidence that the Hemo-TEM is a well-designed, valid, and reliable measure of the burden of hemophilia treatment, including treatment impact on adolescent and adult PWH. [ABSTRACT FROM AUTHOR]

To understand ED providers' perspective on how to best care for individuals who present to US emergency departments (EDs) following self-injurious behavior, purposive recruitment identified nursing directors, medical directors, and social workers (n = 34) for telephone interviews from 17 EDs. Responses and probes to "What is the single most important thing ED providers and staff can do for patients who present to the ED after self-harm?" were analyzed using directed content analysis approach. Qualitative analyses identified four themes: treat patients with respect and compassion; listen carefully and be willing to ask sensitive personal questions; provide appropriate care during mental health crises; connect patients with mental health care. Participants emphasized treating patients who present to the ED after self-injurious behavior with respect and empathy. Hospitals could incentivize provider mental health training, initiatives promoting patient-provider collaboration, and reimbursement strategies ensuring adequate staffing of providers with time to listen carefully. [ABSTRACT FROM AUTHOR]

Introduction: Routine prenatal screening ultrasounds primarily serve to diagnose major fetal anomalies which may prompt further testing and inform clinical decision-making, including possible pregnancy termination. Meanwhile, expectant parents may view the ultrasound experience and information gained differently from their clinicians. In this setting, how to best counsel patients, especially regarding the increasing findings of indeterminant clinical significance, is unclear. Greater understanding of women's views before undergoing their ultrasound may help to guide anticipatory counseling about the purpose of screening and interpretation of results. Methods: We surveyed 289 patients presenting for scheduled prenatal ultrasounds at an academic tertiary care center. Discrete and open-ended questions assessed views surrounding the receipt of abnormal results and management of the pregnancy once fetal anomalies are detected. Qualitative responses were analyzed using thematic analysis. Results: Most (95%) desired information about abnormal sonographic findings, although only half would consider pregnancy termination for anomalies. Reasons for wanting return of abnormal results included preparedness, valuing knowledge, and to a lesser extent, informing decision-making. When considering potential termination as a result of ultrasound findings, participants' rationales demonstrated deontological (seeing termination as inherently impermissible or permissible), relational (duties arising from the role of being a mother), and consequentialist (weighing harms and benefits) reasoning. Conclusion: This study highlights women's perceptions of prenatal ultrasounds as an inherently valuable source of information and preparedness, beyond their role in informing clinical decision-making. Identifying the ethical constructs underpinning patients' perspectives may help direct development of counseling tools responsive to individual needs and values regarding prenatal ultrasound findings. [ABSTRACT FROM AUTHOR]

Objective: Access to trauma-informed sexual and reproductive health services (SRHS) among persons with mental illness (MI) is inadequate and may contribute to health disparities among this population. This qualitative study investigated health professionals' perspectives of SRHS delivery to patients receiving care at a behavioral health hospital. Methods: Semi-structured interviews were conducted in a convenience sample of 26 mental health professionals recruited from one behavioral health hospital. Interviews assessed participants' perceptions of current SRHS offerings, barriers, and opportunities to implement patient-centered SRHS at the hospital. A constant comparison thematic analysis was employed. Results: Participants noted patients' overlapping sexual and reproductive health (SRH) and mental health needs. Most participants indicated clinical responsibility to address these needs. However, participants stated they infrequently provided SRHS because of structural barriers within the healthcare system. Barriers included a lack of hospital policy and health professional education on SRH. Some participants who navigated around these barriers reported using an existing SRH screening tool. Conclusions: Patients receiving care at this behavioral health hospital have unmet SRHS needs. This lack of care may undermine the health of patients with MI. Addressing system level gaps requires clinical re-prioritization. Promising approaches to address this gap include reverse-integrated care models and improved SRHS training of health professionals. [ABSTRACT FROM AUTHOR]

Background: Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence. The present cross-sectional case–control study investigated how aspirations differed between people with DMD and a stratified comparison group of nationally representative children/adults. Methods: A web-based survey was administered October through December 2020. Recruitment was stratified by age group: 8–12, 13–17, and > = 18, reflecting the DMD disability trajectory. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, how they would define "QOL"; and goals; answers to the prompts were then coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences), and testing for the effects of role (patient or comparison), age, and role-by-age interactions. Results: The study sample of DMD (n = 285) and comparison (n = 292) participants provided open-text data: 577 wishes statements, 283 QOL-definition statements, and 149 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between different raters' codes. Results suggested that people with DMD have aspirations that differ from their peers in several important ways. Both open-text and closed-ended data in both unadjusted and adjusted analyses generally showed that people with DMD were more focused on intrinsic aspirations such as health, healthcare, and independence than their peers. Compared to non-DMD persons, DMD individuals were much less focused on financial or housing concerns, community contributions, or spiritual growth. With age, patients' aspirations focused less on extrinsic aspirations such as careers and work and increasingly emphasized emotion-oriented goals. Patients were markedly less likely to give a direct answer to the open-ended goals question. Conclusion: There were important differences in aspirations between people with DMD and their peers. These findings may be helpful for developing psychosocial interventions. [ABSTRACT FROM AUTHOR]

In 2014 approximately 14.4% of Americans ages 18 to 24 had some type of disability. Compared to their peers without disabilities, disabled emerging adults typically have more difficulty dating and finding romantic and sexual partners. One way that they may escape disability stigma and smaller dating pools is through online dating. However, little is known about their experiences seeking romantic and sexual relationships online, and even less is known about the experiences of emerging adults with disabilities who identify with sexual orientations and have gender identities that are not heterosexual or cisgender. In the present study 27 LGBTQ+ emerging adults with various disabilities, genders, and sexual orientations completed 47 item online surveys before COVID in which they described their experiences with online dating and starting and sustaining romantic relationships. Results from qualitative data analyses suggest that rather than being neutral spaces that exist separately from stigma and social prejudice, dating apps and web sites typically perpetuate normative ideas of ableism, sexuality, and gender and stimulate questions of timing of disability disclosure. Despite challenges, however, online dating also offers opportunities to interact with multiple interested daters and appears to offer LGBTQ+ emerging adults with disabilities an often beneficial though sometimes vexing venue for relationship development. [ABSTRACT FROM AUTHOR]

Purpose: Endometriosis is a chronic disorder of the female reproductive system characterized by debilitating symptoms, particularly endometriosis-related pain (ERP). Patient-reported outcome (PRO) measures of symptoms and impacts are required to assess disease severity in ERP clinical studies and clinical practice. A content-valid instrument was developed by modifying the Dysmenorrhea Daily Diary (DysDD) to form the Endometriosis Daily Diary (EDD), an electronic PRO administered via handheld device. Methods: Qualitative research with US females with ERP was conducted in three stages: (1) Development of an endometriosis conceptual model based on qualitative literature and conduct of concept elicitation (CE) interviews (N = 30). (2) Cognitive debriefing (CD) interviews (N = 30) conducted across two rounds to assess relevance and understanding of the EDD, with modifications between interview rounds. (3) Pilot testing to assess usability/feasibility of administrating the EDD daily on an electronic handheld device (N = 15). Clinical experts provided guidance throughout the study. Results: The conceptual model provided a comprehensive summary of endometriosis to inform modifications to the DysDD, forming the EDD. CD results demonstrated that EDD items were relevant for most participants. Instructions, items, response scales, and recall period were well-understood. The resulting daily diary assesses severity of cyclic and non-cyclic pelvic pain, dyspareunia, impact of ERP on functioning and daily life, symptoms associated with ERP, and bowel symptoms. Participants were able to complete the diary daily and found the device easy to use. Conclusion: The EDD demonstrated good content validity in females experiencing ERP. The next step is to perform psychometric validation in an ERP sample. [ABSTRACT FROM AUTHOR]