Exchanging words: Engaging the challenges of sharing qualitative research data.

In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States. Over the past 5 y, our research team has engaged stakeholders on QR data sharing, developed software to support data deidentification, produced guidance, and collaborated with the ICPSR data repository to pilot the deposit of 30 QR datasets. In this perspective article, we share important lessons learned by addressing eight clusters of questions on issues such as where, when, and what to share; how to deidentify data and support high-quality secondary use; budgeting for data sharing; and the permissions needed to share data. We also offer a brief assessment of the state of preparedness of data repositories, QR journals, and QR textbooks to support data sharing. While QR data sharing could yield important benefits to the research community, we quickly need to develop enforceable standards, expertise, and resources to support responsible QR data sharing. Absent these resources, we risk violating participant confidentiality and wasting a significant amount of time and funding on data that are not useful for either secondary use or data transparency and verification.

A qualitative approach to assess the opinion of physicians about the challenges and prospects of pharmacogenomic testing implementation in clinical practice in Greece.

BACKGROUND: Pharmacogenomics (PGx) constitutes an important part of personalized medicine and has several clinical applications. PGx role in clinical practice is known, however, it has not been widely adopted yet. In this study, we aim to investigate the perspectives of Greek physicians regarding the implementation of PGx testing in clinical practice and the key issues associated with it. METHODS: Fourteen interviews were conducted with physicians of various specialties for which PGx applications are available. A semi-structured interview guide was utilized based on the Consolidated Framework for Implementation Research (CFIR) context and the Diffusion of Innovation model. Transcripts were coded independently and compared by two members of the research team. Descriptive statistics were generated using Microsoft Excel. RESULTS: Six main themes emerged: awareness and use of PGx testing; source of information; key stakeholders of the PGx supply chain, their interactions and change agents; clinical benefit and significance of PGx testing; barriers and lack of reimbursement; and recommendations to boost the PGx adoption rate. Most respondents were aware of PGx applications, but only three had already recommended PGx testing. Peer-reviewed journals along with clinical guidelines were regarded as the most used source of information while stakeholders of the PGx supply chain were discussed. PGx was considered that promote patient-centered care, enhance medication clinical effectiveness, decrease the risk of side effects, and reduce healthcare costs. Lack of reimbursement, scarcity of resources, and high PGx cost were the foremost barriers affecting PGx adoption. CONCLUSIONS: It was concluded that if case PGx testing is reimbursed and physicians' training is reinforced, PGx implementation will be boosted and improved shortly.

Development of a new health-related quality of life measure for people with diabetes who experience hypoglycaemia: the Hypo-RESOLVE QoL.

AIMS/HYPOTHESIS: Valid and reliable patient-reported outcome measures are vital for assessing disease impact, responsiveness to healthcare and the cost-effectiveness of interventions. A recent review has questioned the ability of existing measures to assess hypoglycaemia-related impacts on health-related quality of life for people with diabetes. This mixed-methods project was designed to produce a novel health-related quality of life patient-reported outcome measure in hypoglycaemia: the Hypo-RESOLVE QoL. METHODS: Three studies were conducted with people with diabetes who experience hypoglycaemia. In Stage 1, a comprehensive health-related quality of life framework for hypoglycaemia was elicited from semi-structured interviews (N=31). In Stage 2, the content validity and acceptability of draft measure content were tested via three waves of cognitive debriefing interviews (N=70 people with diabetes; N=14 clinicians). In Stage 3, revised measure content was administered alongside existing generic and diabetes-related measures in a large cross-sectional observational survey to assess psychometric performance (N=1246). The final measure was developed using multiple evidence sources, incorporating stakeholder engagement. RESULTS: A novel conceptual model of hypoglycaemia-related health-related quality of life was generated, featuring 19 themes, organised by physical, social and psychological aspects. From a draft version of 76 items, a final 14-item measure was produced with satisfactory structural (χ2=472.27, df=74, p<0.001; comparative fit index =0.943; root mean square error of approximation =0.069) and convergent validity with related constructs (r=0.46-0.59), internal consistency (α=0.91) and test-retest reliability (intraclass correlation coefficient =0.87). CONCLUSIONS/INTERPRETATION: The Hypo-RESOLVE QoL is a rigorously developed patient-reported outcome measure assessing the health-related quality of life impacts of hypoglycaemia. The Hypo-RESOLVE QoL has demonstrable validity and reliability and has value for use in clinical decision-making and as a clinical trial endpoint. DATA AVAILABILITY: All data generated or analysed during this study are included in the published article and its online supplementary files ( https://doi.org/10.15131/shef. DATA: 23295284.v2 ).

Breast cancer survivors suffering from lymphedema: What really do affect to corporeality/body image? A qualitative study.

Breast cancer-related lymphedema is currently one of the most serious complications that most affect the quality of life of women undergoing breast cancer. The aim of this study was to explore in-depth the experience of women who suffer from lymphoedema after breast cancer and how does this condition affect corporeality, with no judgements. For this purpose, a qualitative methodology was followed. In-depth interviews, interviewer's field notes and participants' letters were used for data collection. The participants were twenty Spanish women with lymphoedema after overcome a breast cancer in the past. Healthcare specialists with experience in the topic were also included. Results showed 2 main categories: "From cancer to lymphedema, another disease another disease" and "Potential for transition and transformation towards a new way of life". As a conclusion, the difficulty in accessing adequate treatment, the need for greater awareness of lymphedema and the importance of the emotional and psychological dimension of this chronic disease. Highlighting the attitudes that these women develop for self-care and the concept of new corporeality. After breast cancer, women with lymphedema experience a drastic change that affects all areas of their lives. The adaptation process, and the search for resources and aid, play a fundamental role in overcoming this process.

Health Belief Model to Assess Mpox Knowledge, Attitudes, and Practices among Residents and Staff, Cook County Jail, Illinois, USA, July-August 2022.

In summer 2022, a case of mpox was confirmed in a resident at the Cook County Jail (CCJ) in Chicago, Illinois, USA. We conducted in-depth interviews with CCJ residents and staff to assess mpox knowledge, attitudes, and practices; hygiene and cleaning practices; and risk behaviors. We characterized findings by using health belief model constructs. CCJ residents and staff perceived increased mpox susceptibility but were unsure about infection severity; they were motivated to protect themselves but reported limited mpox knowledge as a barrier and desired clear communication to inform preventive actions. Residents expressed low self-efficacy to protect themselves because of contextual factors, including perceived limited access to cleaning, disinfecting, and hygiene items. Our findings suggest correctional facilities can support disease prevention by providing actionable and tailored messages; educating residents and staff about risk and vaccination options; and ensuring access to and training for hygiene, cleaning, and disinfecting supplies.

Transplant recipient, care partner, and clinician perceptions of medication adherence monitoring technology: A mixed methods study.

Medication nonadherence is a leading cause of graft loss. Adherence monitoring technologies-reminder texts, smart bottles, video-observed ingestion, and digestion-activated signaling pills-may support adherence. However, patient, care partner, and clinician perceptions of these tools are not well studied. We conducted qualitative individual semistructured interviews and focus groups among 97 participants at a single center: kidney and liver transplant recipients 2 weeks to 18 months posttransplant, their care partners, and transplant clinicians. We assessed adherence practices, reactions to monitoring technologies, and opportunities for care integration. One-size-fits-all approaches were deemed infeasible. Interviewees considered text messages the most acceptable approach; live video checks were the least acceptable and raised the most concerns for inconvenience and invasiveness. Digestion-activated signaling technology produced both excitement and apprehension. Patients and care partners generally aligned in perceptions of adherence monitoring integration into clinical care. Key themes were importance of routine, ease of use, leveraging technology for actionable medication changes, and aversion to surveillance. Transplant clinicians similarly considered text messages most acceptable and video checks least acceptable. Clinicians reported that early posttransplant use and real-time adherence tracking with patient feedback may facilitate successful implementation. The study provides initial insights that may inform future adherence technology implementation.

Physicians' Hierarchy of Tumor Biomarkers for Optimizing Chemotherapy in Breast Cancer Care.

BACKGROUND: Tumor biomarkers are regularly used to guide breast cancer treatment and clinical trial enrollment. However, there remains a lack of knowledge regarding physicians' perspectives towards biomarkers and their role in treatment optimization, where treatment intensity is reduced to minimize toxicity. METHODS: Thirty-nine academic and community oncologists participated in semi-structured qualitative interviews, providing perspectives on optimization approaches to chemotherapy treatment. Interviews were audio-recorded, transcribed, and analyzed by 2 independent coders utilizing a constant comparative method in NVivo. Major themes and exemplary quotes were extracted. A framework outlining physicians' conception of biomarkers, and their comfortability with their use in treatment optimization, was developed. RESULTS: In the hierarchal model of biomarkers, level 1 is comprised of standard-of-care (SoC) biomarkers, defined by a strong level of evidence, alignment with national guidelines, and widespread utilization. Level 2 includes SoC biomarkers used in alternative contexts, in which physicians expressed confidence, yet less certainty, due to a lack of data in certain subgroups. Level 3, or experimental, biomarkers created the most diverse concerns related to quality and quantity of evidence, with several additional modulators. CONCLUSION: This study demonstrates that physicians conceptualize the use of biomarkers for treatment optimization in successive levels. This hierarchy can be used to guide trialists in the development of novel biomarkers and design of future trials.

Experiences of hospital care for people with multiple long-term conditions: a scoping review of qualitative research.

BACKGROUND: Multiple long-term conditions-the co-existence of two or more chronic health conditions in an individual-present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals. METHODS: We undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings. RESULTS: Of 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care. CONCLUSIONS: Qualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care.

A meta-ethnography of the factors that shape link workers' experiences of social prescribing.

BACKGROUND: Social prescribing is gaining traction internationally. It is an approach which seeks to address non-medical and health-related social needs through taking a holistic person-centred and community-based approach. This involves connecting people with and supporting them to access groups and organisations within their local communities. It is hoped that social prescribing might improve health inequities and reduce reliance on healthcare services. In the UK, social prescribing link workers have become core parts of primary care teams. Despite growing literature on the implementation of social prescribing, to date there has been no synthesis that develops a theoretical understanding of the factors that shape link workers' experiences of their role. METHODS: We undertook a meta-ethnographic evidence synthesis of qualitative literature to develop a novel conceptual framework that explains how link workers experience their roles. We identified studies using a systematic search of key databases, Google alerts, and through scanning reference lists of included studies. We followed the eMERGe guidance when conducting and reporting this meta-ethnography. RESULTS: Our synthesis included 21 studies and developed a "line of argument" or overarching conceptual framework which highlighted inherent and interacting tensions present at each of the levels that social prescribing operates. These tensions may arise from a mismatch between the policy logic of social prescribing and the material and structural reality, shaped by social, political, and economic forces, into which it is being implemented. CONCLUSIONS: The tensions highlighted in our review shape link workers' experiences of their role. They may call into question the sustainability of social prescribing and the link worker role as currently implemented, as well as their ability to deliver desired outcomes such as reducing health inequities or healthcare service utilisation. Greater consideration should be given to how the link worker role is defined, deployed, and trained. Furthermore, thought should be given to ensuring that the infrastructure into which social prescribing is being implemented is sufficient to meet needs. Should social prescribing seek to improve outcomes for those experiencing social and economic disadvantage, it may be necessary for social prescribing models to allow for more intensive and longer-term modes of support.

The experience of albinism in France: a qualitative study on dyads of parents and their adult child with albinism.

BACKGROUND: To date, almost no research on the psychosocial implications of albinism has been conducted in France and an exploration of albinism-related experiences could be beneficial, in order to better understand this condition. The aim of this study was to examine how French people with albinism and their parents live with and adapt to this condition in all the areas of their lives. METHODS: Semi-structured phone interviews were conducted with 9 parent-child dyads, each participating separately. Participants were recruited by convenience sampling, thanks to the combined efforts of a patient association (Genespoir) and professionals from the partner medical referral centers involved in the project. Dyads in which the individual with albinism had any comorbidity were excluded. The interviews were then transcribed and subjected to in-depth thematic analysis. Two codebooks were constructed in a mirrored process: one for people with albinism; the other for their parents. They were finally merged at the end of the coding step. RESULTS: Four main categories were identified: personal perceptions and social representations of albinism, difficulties and obstacles encountered by people with albinism, resources and facilitators, and the importance of parent-child functioning. The results indicated that experiences of stigmatization during childhood and adolescence are common and that people with albinism face challenges in adapting to certain obstacles related to their visual impairments (VI) (e.g., inability to drive a car; eye strain...). Parents emerged as one, if not as the main, source of support for people with albinism throughout their development. Although external support systems exist to assist them in various aspects of their lives, some of them primarily rely on their own personal resources to cope. CONCLUSIONS: This research highlights the importance of a systemic and transdisciplinary approach to make sure families receive the support that best meets their needs.

A framework and process for community-engaged, mixed-methods cancer needs assessments.

PURPOSE: Community health needs assessments are required for most state and local public health agencies and non-profit hospitals. Typically based on community health improvement planning models, these assessments encompass overall community health and multiple diseases to inform program planning. National Cancer Institute (NCI)-designated Cancer Centers and community-based cancer-focused programs share the goal of reducing cancer burden in the catchment areas they serve. However, to date, no published models exist to guide cancer-specific needs assessments for a determined geographic area that can inform both public health and research initiatives. The purpose of this article is to outline a cancer needs assessment (CNA) framework and community-engaged, mixed-methods process, along with a case study of how we applied it in Kentucky. METHODS: We convened a steering committee of key organizational partners to provide input throughout the process. We developed a conceptual framework of multi-level determinants affecting cancer-related outcomes. We incorporated both quantitative and qualitative data gathered through a variety of means, including a novel application of group concept mapping to guide definition of priorities. RESULTS: The resulting CNA has helped guide strategic planning and priorities for Kentucky's Cancer Action Plan, Markey Cancer Center, state agencies, and community-based organizations. CONCLUSION: This framework and process can be used collaboratively by cancer center Community Outreach and Engagement offices, public health agencies, oncology programs, and community partners to plan impactful cancer control programs and research in their catchment areas. Universities can also use them to inform the planning of community engagement and health equity research efforts.

Challenges in collecting information on sexual orientation and gender identity for cancer patients: perspectives of hospital and central cancer registry abstractors.

PURPOSE: Sexual and gender minority (SGM) populations experience cancer treatment and survival disparities; however, inconsistent sexual orientation and gender identity (SOGI) data collection within clinical settings and the cancer surveillance system precludes population-based research toward health equity for this population. This qualitative study examined how hospital and central registry abstractors receive and interact with SOGI information and the challenges that they face in doing so. METHODS: We conducted semi-structured interviews with 18 abstractors at five Surveillance, Epidemiology, and End Results (SEER) registries, as well as seven abstractors from commission on cancer (CoC)-accredited hospital programs in Iowa. Interviews were transcribed, cleaned, and coded using a combination of a priori and emergent codes. These codes were then used to conduct a descriptive analysis and to identify domains across the interviews. RESULTS: Interviews revealed that abstractors had difficulty locating SOGI information in the medical record: this information was largely never recorded, and when included, was inconsistently/not uniformly located in the medical record. On occasion, abstractors reported situational recording of SOGI information when relevant to the patient's cancer diagnosis. Abstractors further noticed that, where reported, the source of SOGI information (i.e., patient, physician) is largely unknown. CONCLUSION: Efforts are needed to ensure standardized implementation of the collection of SOGI variables within the clinical setting, such that this information can be collected by the central cancer registry system to support population-based equity research addressing LGBTQ + disparities.

Urology HEIRS: A Feasibility and Acceptability Study for Video-Based Research on Physician-Family Communication in Pediatric Urology Visits.

PURPOSE: Patient- and family-centered communication is essential to health care equity. However, less is known about how urologists implement evidence-based communication and dynamics involved in caring for diverse pediatric patients and caregivers. We sought to evaluate the feasibility and acceptability using video-based research to characterize physician-family communication in pediatric urology. MATERIALS AND METHODS: We assembled a multidisciplinary team to conduct a multiphase learning health systems project to establish the Urology HEIRS (Health Experiences and Interactions in Real-time Studies) corpus for research and interventions. This paper reports the first phase, evaluating feasibility and acceptability based on consent rate, patient diversity, and qualitative identification of verbal and paraverbal features of physician-family communication. We used applied conversation analysis methodology to identify salient practices across 8 pediatric urologists. RESULTS: We recruited 111 families at 2 clinic sites; of these 82 families (N = 85 patients, ages 0-20 years) participated in the study with a consent rate of 73.9%. The racial/ethnic composition of the sample was 45.9% non-Hispanic White, 30.6% any race of Hispanic origin, 16.5% non-Hispanic Black/African American, 4.7% any ethnicity of Asian/Asian American, and 2.3% some other race/ethnicity; 24.7% of families used interpreters. We identified 11 verbal and paraverbal communication practices that impacted physician-family dynamics, including unique challenges with technology-mediated interpreters. CONCLUSIONS: Video-based research is feasible and acceptable with diverse families in pediatric urology settings. The Urology HEIRS corpus will enable future systematic studies of physician-family communication in pediatric urology and provides an empirical basis for specialty-specific training in patient- and family-centered communication.

'Humility, Concern, Respect': A Qualitative Study Exploring Parent Perspectives on a Pediatrician's Role in Addressing Racism.

OBJECTIVE: To explore racially minoritized families' perceptions on how, and if, physicians should address children's racial identity and concepts of racism within clinical settings. STUDY DESIGN: Parents of racially minoritized children, ages 5 through 18, were interviewed to explore experiences with racial identity formation, discrimination, and the extent to which they wanted pediatricians to address these topics. Children were included at the discretion of their parents. Interviews were transcribed, coded, and analyzed through a critical race theory lens based in constructivist grounded theory. RESULTS: Parents encouraged their children to embrace their racial identities but also wanted to shield them from negative experiences of racism to preserve identity safety. Parents felt pediatricians should address racial issues in a manner specific to their child's situation. Thoughtful inclusion of race-related questions, whether in discussion or on questionnaires, is essential to prevent tension in a therapeutic relationship. There was no consensus on the use of preclinical screening. Instead, families highlighted the importance of embracing humility, trust, and respect. CONCLUSIONS: Participant families have preferences for approaches to address the effects of racism on their children's health. Pediatricians should understand the importance of identity safety and approach their discussions with cultural humility, which includes self-reflection, empathy, active listening, and flexible negotiation. Above all, pediatricians need to create a safe environment for appropriate discussion of these issues.

Experiences of Indigenous Patients Receiving Dialysis: Systematic Review of Qualitative Studies.

RATIONALE & OBJECTIVE: Indigenous People suffer a high burden of kidney disease. Those receiving maintenance dialysis have worse outcomes compared with similarly treated non-Indigenous patients. We characterized the experiences of Indigenous patients receiving dialysis in British-colonized countries to gain insights into which aspects of kidney care may benefit from improvement. STUDY DESIGN: A systematic review of published qualitative interview studies. SETTING & STUDY POPULATIONS: Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries. SELECTION CRITERIA FOR STUDIES: Search terms for Indigenous Peoples, dialysis, and qualitative research were entered into Medline, Embase, PsycINFO, and CINAHL and searched from inception to January 5, 2023. DATA EXTRACTION: Characteristics of each study were extracted into Microsoft Excel for quality assessment. ANALYTICAL APPROACH: Data were analyzed using thematic synthesis. RESULTS: The analysis included 28 studies involving 471 participants from Australia, New Zealand, Canada, and the United States. We identified four themes: centrality of family and culture (continuing dialysis for family, gaining autonomy through shared involvement, balancing primary responsibility to care for family); marginalization due to structural and social inequities (falling through gaps in primary care intensifying shock, discriminated against and judged by specialists, alienated and fearful of hospitals, overwhelmed by travel, financial and regimental burdens); vulnerability in accessing health care (need for culturally responsive care, lack of language interpreters, without agency in decision-making, comorbidities compounding complexity of self-management); and distress from separation from community (disenfranchisement and sorrow when away for dialysis, inability to perpetuate cultural continuity, seeking a kidney transplant). LIMITATIONS: We only included articles published in English. CONCLUSIONS: Indigenous patients receiving dialysis experience inequities in health care that compound existing accessibility issues caused by colonization. Improving the accessibility and cultural responsiveness of dialysis and kidney transplant services in collaboration with Indigenous stakeholders holds promise to enhance the experience of Indigenous patients receiving dialysis. PLAIN-LANGUAGE SUMMARY: Worldwide Indigenous populations suffer a high incidence of chronic disease leading to lower life expectancy, particularly for kidney disease, an insidious condition requiring long-term dialysis treatment. By listening to Indigenous dialysis patients' stories, we hoped to understand how to improve their experience. We gathered 28 qualitative research studies from four countries reporting Indigenous adults' experiences of dialysis. They described lacking awareness of kidney disease, poor access to health services, systemic racism, inadequate cultural safety, and being dislocated from family, community, and culture. These findings indicate that respectful collaboration with Indigenous Peoples to craft and implement policy changes holds promise to improve prevention, integrate culturally responsive health care practices, and provide better access to local dialysis services and opportunities for kidney transplants.

Rheumatoid arthritis patients' perspective on the use of prediction models in clinical decision-making.

OBJECTIVES: A rapidly expanding number of prediction models is being developed aiming to improve rheumatoid arthritis (RA) diagnosis and treatment. However, few are actually implemented in clinical practice. This study explores factors influencing the acceptance of prediction models in clinical decision-making by RA patients. METHODS: A qualitative study design was used with thematic analysis of semi-structured interviews. Purposive sampling was applied to capture a complete overview of influencing factors. The interview topic list was based on pilot data. RESULTS: Data saturation was reached after 12 interviews. Patients were generally positive about the use of prediction models in clinical decision-making. Six key themes were identified from the interviews. First, patients have the need for information on prediction models. Second, factors influencing trust in model-supported treatment are described. Third, patients envision the model to have a supportive role in clinical decision-making. Fourth, patients hope to personally benefit from model-supported treatment in various ways. Fifth, patients are willing to contribute time and effort to contribute to model input. And lastly, we discuss the theme on effects of the relationship with the caregiver in model-supported treatment. CONCLUSION: Within this study RA patients were generally positive about the use of prediction models in their treatment given some conditions were met and concerns addressed. The results of this study can be used during the development and implementation in RA care of prediction models in order to enhance patient acceptability.

What is bad news in fertility care? A qualitative analysis of staff and patients' accounts of bad and challenging news in fertility care.

STUDY QUESTION: What do fertility staff and patients think is bad news in fertility care? SUMMARY ANSWER: Staff and patients agree bad news is any news that makes patients less likely to achieve parenthood spontaneously or access and do successful treatment, but their appraisals of how bad the news is are differently influenced by specific news features and the context of its delivery. WHAT IS KNOWN ALREADY: Bad news is common in fertility care, but staff feel unprepared to share it and four in 10 patients react to it with unanticipated emotional or physical reactions. Research has paid much attention to how bad news should be shared, but considerably less to what news is perceived as bad, despite the fact this may dictate elements of its delivery. STUDY DESIGN, SIZE, DURATION: Two cross-sectional, online, mixed-method surveys (active 7 January-16 July 2022) were distributed to fertility staff and patients across the UK and Europe. PARTICIPANTS/MATERIALS, SETTING, METHODS: Staff inclusion criteria were being a healthcare professional working in fertility care and having experience of sharing bad news at least once a month. Patients' inclusion criteria were being adults and having had a conversation in which staff shared or explained bad news concerning their fertility care within the last 2 months. Surveys were created in English using Qualtrics, reviewed by patients and healthcare professionals, and distributed via social media, Prolific, fertility organizations, and scientific societies. Patients were asked, regarding the last time bad news were shared with them, 'What was the bad news?' and 'What other news would you consider bad news in fertility care?'. Staff were asked to 'List the three most challenging topics of bad news you share with your patients'. Staff and patient data were separately thematically analysed to produce basic codes, organized into sub-themes and themes. Themes emerging from patients' and staff data were compared and synthesized into meta themes. MAIN RESULTS AND THE ROLE OF CHANCE: Three hundred thirty-four staff accessed the survey, 286 consented, and 217 completed (65% completion rate). Three hundred forty-four patients accessed the survey, 304 consented, and 222 completed (64% completion rate). Eighty-five percent of participants were women, 62% resided in Europe, and 59% were in private care. Average staff age was 45.2 (SD = 12.0), 44% were embryologists or lab technicians, 40% were clinicians (doctors, consultants, or physicians), and 8% nurses or midwifes. Average patient age was 32.2 (SD = 6.4) and 54% had children. Staff answers originated 100 codes, 19 sub-themes and six themes. Patients' answers produced 196 codes, 34 sub-themes, and 7 themes. Staff and patient themes were integrated into three meta-themes reflecting main topics of bad news. These were Diagnosis and negative treatment events and outcomes, Inability to do (more) treatment, and Care and patient factors disrupting communication. Staff and patients agreed that some news features (uncertain, disruptive, definitive) made news more challenging but disagreed in relation to other features (e.g. unexpected/expected). Patient factors made bad news more challenging to staff (e.g. difficult emotions) and care factors made bad news more challenging to patients (e.g. disorganized care). LIMITATIONS, REASONS FOR CAUTION: Participants were self-selected, and most were women from private European clinics. Questions differed for staff and patients, focused on subjective perceptions of news, and did not measure news impact. WIDER IMPLICATIONS OF THE FINDINGS: The badness of fertility news is not only a product of the extent to which the news compromises parenthood goals but also of its features (timing, nature, number) and the context in which the news is delivered. Guidance on sharing bad news in fertility care needs to go beyond easing the process for patients to also consider staff experiences. Guidance may need to be tailored to news features and context. STUDY FUNDING/COMPETING INTEREST(S): Cardiff University funded the research. S.G., J.B., O'.H., and A.D. report funding from the Higher Education Funding Council for Wales and the European Society for Human Reproduction and Embryology (ESHRE) to develop fertiShare: a sharing bad news eLearning course for fertility care. fertiShare will be distributed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International Licence (CC BY-NC-SA 4.0). No other conflicts are reported in relation to this work. TRIAL REGISTRATION NUMBER: N/A.

Transgender persons' view on previous fertility decision-making and current infertility: a qualitative study.

STUDY QUESTION: How do adult transgender and gender diverse (TGD) people, who are infertile due to prior gender-affirming treatment, view their current infertility and their reproductive decisions made in the past? SUMMARY ANSWER: In a time where sterilization was mandatory, transgender adolescents prioritized gender-affirming treatment over their future fertility and would make the same choice today despite emotional challenges related to infertility experienced by some. WHAT IS KNOWN ALREADY: Under transgender law in the Netherlands, sterilization was required for legal gender recognition until 2014, resulting in permanent infertility. The long-term consequences of this iatrogenic infertility in transgender adolescents who have now reached adulthood remain underexplored. STUDY DESIGN, SIZE, DURATION: Qualitative study design based on 21 in-depth one-on-one semi-structured interviews. PARTICIPANTS/MATERIALS, SETTING, METHODS: TGD people in a stage of life where family planning may be a current topic were eligible for participation. They all received gender-affirming treatment in adolescence prior to the legislation change in 2014. A purposeful sampling technique was used from participants of another ongoing study. Eleven people assigned female at birth and ten people assigned male at birth were included. Interview transcripts were thematically analysed using a modified version of Braun and Clarke's six steps theory. MAIN RESULTS AND THE ROLE OF CHANCE: Six main themes were generated: (i) personal considerations regarding fertility and fertility preservation in the past; (ii) external considerations regarding fertility and fertility preservation in the past; (iii) current vision on past considerations and decisions; (iv) Current experiences and coping with infertility; (v) future family building; (vi) advice regarding fertility and fertility preservation decision-making. LIMITATIONS, REASONS FOR CAUTION: Selection, recall, and choice supportive bias may play a role in interpreting our results. WIDER IMPLICATIONS OF THE FINDINGS: This study highlights the importance of tailored counselling and comprehensive information on fertility preservation for transgender individuals, especially adolescents, undergoing gender-affirming treatment. STUDY FUNDING/COMPETING INTEREST(S): N/A. TRIAL REGISTRATION NUMBER: N/A.

Making sexual and reproductive healthcare environments safe and supportive for disclosure of sexual violence: interview findings from patients and healthcare professionals using a realist approach.

OBJECTIVES: Most people who have experienced sexual violence (SV) will disclose the event(s) to someone. Key recipients of disclosure are those working in healthcare. Telling someone in healthcare about experiences of SV can be an important step in accessing necessary medical care and being signposted to other services. While recognising healthcare settings are a key place for people to seek support, evidence is lacking about how best to create a safe environment for disclosure to take place, how services can make changes to better facilitate this experience and what changes matter most. DESIGN: This study used a realist approach to identify mechanisms that facilitate safe and supported disclosure. Data were generated through three focus groups with Sexual and Reproductive Health Services healthcare professionals in the UK, and one-to-one interviews with survivors of SV who attended healthcare settings (n=18). RESULTS: The analysis found that service users needed to feel empowered and recognised as appropriate candidates for care in the material used to promote sexual healthcare services after SV. This promotional material needs to address rape myths, stereotypes and silence surrounding SV, to ensure that all individuals and especially those from diverse groups are empowered to access care. Three fundamental mechanisms for safe and supported disclosure were identified: being listened to, being validated and having choice. Trauma-informed care was identified as being essential for implementing these mechanisms. Healthcare professionals who were confident and competent regarding enquiry about SV and response to disclosures of SV were key. CONCLUSIONS: The development of services that are conducive to the disclosure of SV is needed to provide better support for those who have experienced SV and are ready to seek support. Use of appropriate promotional material, specific staff training and a trauma-informed approach are key elements to improve services.

Service user experiences of using internet-based testing for sexually transmitted infections (STIs): a qualitative study.

OBJECTIVES: Internet-based testing for sexually transmitted infections allows individuals to order a self-sampling kit online, send samples to a central laboratory and receive their results electronically, reducing the need to attend a clinic unless for treatment. Its usage has grown rapidly in many high-income countries, such as England, where it now accounts for 44% of tests within the National Chlamydia Screening Programme. However, there is limited data on the experiences of service users, which may offer insights into low uptake and poor return rates among some high-incidence populations. METHODS: Participants were recruited via sexual health clinics and the website of an internet-based testing service. Purposive sampling was used to ensure a diversity of genders, sexualities and ethnic backgrounds were included. Semistructured interviews were conducted by phone, email and messenger services and explored participants' perceptions and experiences of both internet-based and clinic-based testing. Data underwent thematic analysis. RESULTS: We interviewed 17 participants. Internet-based testing appealed to many due to the privacy and convenience it offered over clinic-based testing. Although most were positive about their experience of internet-based testing, many found the process of finger-prick blood sampling extremely challenging and this contributed to concerns from some participants that test results may be inaccurate. A minority of participants missed the opportunity that clinic-based testing offered to discuss symptoms or concerns with staff. Participants overwhelmingly found the process of receiving test results by short message service (SMS) acceptable and preferable to alternatives. CONCLUSIONS: Internet-based testing is viewed positively by most users but uptake may be improved if providers emphasise the privacy and convenience it offers, as well as the accuracy of self-sampling. Providers should also consider measures to address user concerns around blood sampling and access to specialist advice.