From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

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

Perspectives on shorter durations of anti-HER2 therapy in early-stage HER2-positive breast cancer: a patient survey.

PURPOSE: Despite previous studies proposing shorter durations of anti-HER2 therapy for selected patients with HER2-positive early breast cancer (EBC), 12-months remains standard of care. A survey was performed to assess patient perspectives and willingness to participate in studies evaluating shorter durations of anti-HER2 therapy. METHODS: Patients with HER2-positive EBC completing or having previously completed anti-HER2 therapy, were recruited by healthcare professionals at The Ottawa Hospital Cancer Centre to participate in an anonymous online survey. The primary objective was to learn about patients' perspectives on shorter durations (less than 12-months) of anti-HER2 therapy. Secondary objectives were to explore patients' interest in clinical trials of shorter durations of anti-HER2 therapy and the degree of increased breast cancer risk they would accept with a shorter treatment duration. RESULTS: Responses were received from 94 eligible patients. Most patients received Trastuzumab alone (78%, 73/94), while 13% (12/94) received trastuzumab and pertuzumab. Side effects were experienced by 52% (46/89), the most common being; fatigue (61%, 28/46), myalgia (37%, 17/46), and diarrhea (24%, 11/46). Most patients (88%, 78/89) did not find treatment bothersome. Regarding perspectives on shorter durations of anti-HER2 therapy, most (79%, 74/94) respondents stated they would agree to less treatment if it were possible to receive fewer treatments with the same cancer benefits. 56% of patients were interested in clinical trials, however, about half stated they would not be accepting of any increase in breast cancer recurrence risk. CONCLUSION: Trials to investigate who can safely and effectively be treated with shorter durations of anti-HER2 therapy are needed. This study provides important insights to patients' perspectives on shorter durations of anti-HER2 treatment, and their concerns regarding potential increased cancer risk with less treatment.

Perspectives of preimplantation genetic testing patients in Belgium on the ethics of polygenic embryo screening.

RESEARCH QUESTION: What are the perspectives of preimplantation genetic testing (PGT) patients in Belgium on the ethics of PGT for polygenic risk scoring (PGT-P)? DESIGN: In-depth interviews (18 in total, 10 couples, 8 women, n = 28) were performed with patients who had undergone treatment with PGT for monogenic/single-gene defects (PGT-M) or chromosomal structural rearrangements (PGT-SR) between 2017 and 2019 in Belgium. Participants were asked about their own experiences with PGT-M/SR and about their viewpoints on PGT-P, including their own interest and their ideas on its desirability, scope and consequences. Inductive content analysis was used to analyse the interviews. RESULTS: Participants stated that their experiences with PGT-M/SR had been physically, psychologically and practically difficult. Most participants stated that, partly because of these difficulties, they did not see the added value of knowing the risk scores of embryos via PGT-P. Many participants worried that PGT-P could lead to additional anxieties, responsibilities and complex choices in reproduction and parenthood. They argued that not everything should be controlled and felt that PGT-P, especially non-medical and broad screening, was going too far. With regards to the clinical implementation of PGT-P, participants in general preferred PGT-P to be limited to people with a serious polygenic family history and wanted embryo selection decisions to be made by healthcare professionals. CONCLUSIONS: This study shows that individuals with experience of PGT-M/SR saw PGT-P as different from PGT-M/SR. They had various ethical concerns with regards to PGT-P, especially regarding broadly offering PGT-P. These stakeholder viewpoints need to be considered regarding potential PGT-P implementation and guidelines.

Disparities in Mammography Screening: Analyzing Barriers to Access Using Individual Patient Perspectives and the Health Belief Model.

OBJECTIVE: The objective of our study is to explore Nepali women's beliefs about access to mammography screening, and motivations to get screened or not. This work was intended to be hypothesis generating for subsequent quantitative analysis and to inform policy and decision-making to improve access. METHODS: We conducted structured qualitative interviews among nine Nepali women in the Northeast of the United States receiving care at a local community health center and among nine white women receiving mammography care at a large academic medical center in the Northeast. We analyzed the transcripts using a mixed deductive (content analysis) and inductive (grounded theory) approach. Deductive codes were generated from the Health Belief Model which states that a person's belief in the real threat of a disease with their belief in the effectiveness of the recommended health service or behavior or action will predict the likelihood the person will adopt the behavior. We compared and contrasted qualitative results from both groups. RESULTS: We found that eligible Nepali women who had not received mammography screening had no knowledge of its availability and its importance. Primary care physicians emerged as a critical link in addressing this disparity: trust was found to be high among Nepali women with their established primary care provider. CONCLUSION: The findings of this study suggest that the role of primary care practitioners in conversations around the importance and eligibility for mammography screening is of critical importance, especially for underserved groups with limited health knowledge of screening opportunities and potential health benefits. Follow-up research should focus on primary care practices.

In this study, we interviewed Nepali women in a small, rural state in in the Northeast of the United States who are eligible for breast cancer screening yet do not seek it to better understand their motivations f. We also interviewed women who did get mammography screening to understand their motivations. We found that eligible Nepali women who had not received mammography screening had no knowledge of its availability and its importance. Primary care physicians emerged as a critical link in addressing this disparity: trust was found to be high among Nepali women with their established primary care provider. The findings of this study suggest that the role of primary care practitioners in conversations around the importance and eligibility for mammography screening is of critical importance.

Living with epilepsy in adolescence and young adulthood transitioning from pediatric to adult hospital services: A systematic review and meta-synthesis of qualitative studies.

BACKGROUND: Transition is characterized by developing greater self-identity and growing independence, but adolescents dealing with chronic illnesses encounter health-related and situational changes during transition. Despite the many suggestions made in recent years, the shift from pediatric to adult care continues to pose difficulties for adolescents and young adults with epilepsy (AWE). The holistic perspective of AWE's experiences and needs during transition is not as well understood. AIM: To synthesize the qualitative evidence related to AWE's experiences and needs transitioning from pediatric to adult hospital care. METHODS: This systematic review adhered to the rigorous Joanna Briggs methodology for qualitative evidence synthesis. A comprehensive search was conducted across multiple databases, including PubMed, CINAHL, Scopus, Embase, PsycINFO, and ProQuest Dissertations & Theses Global, from their inception to April 2024. The findings were critically appraised and aggregated using meta-synthesis. RESULTS: The search yielded a total of 3,985 studies, and twenty-one were included in the review. Two of the included studies were undertaken in a program where a transition clinic was established. The meta-synthesis reveals that the transition experience of AWE is more than a change from one clinic to another and is interwoven into a pattern of developmental, health-illness, situational, and organizational transition issues. Five synthesized findings were developed: 1) Feeling different from others and striving to address the impact of epilepsy in everyday life; 2) the transition from pediatric to adult care - a problematic intersection point; 3) the family's role - support or parental overprotectiveness 4) seeking knowledge and being familiar with epilepsy supported by healthcare professionals and technologies, and 5) development of independence and responsibility through involvement and support from healthcare professionals and parents. CONCLUSION: During the transition from pediatric to adult hospital care, AWEs encounter a loss of familiarity, increased responsibility, and feelings of not belonging. Therefore, it is essential to create an environment where they can thrive beyond the limitations of their illness. Understanding, acceptance, and inclusivity should characterize this environment to support AWEs in facilitating the development of responsibility, independence, and confidence as they navigate transitions.

Feasibility and acceptability of an ultra-long-term at-home EEG monitoring system (EEG@HOME) for people with epilepsy.

BACKGROUND: Recent technological advancements offer new ways to monitor and manage epilepsy. The adoption of these devices in routine clinical practice will strongly depend on patient acceptability and usability, with their perspectives being crucial. Previous studies provided feedback from patients, but few explored the experience of them using independently multiple devices independently at home. PURPOSE: The study, assessed through a mixed methods design, the direct experiences of people with epilepsy independently using a non-invasive monitoring system (EEG@HOME) for an extended duration of 6 months, at home. We aimed to investigate factors affecting engagement, gather qualitative insights, and provide recommendations for future home epilepsy monitoring systems. MATERIALS AND METHODS: Adults with epilepsy independently were trained to use a wearable dry EEG system, a wrist-worn device, and a smartphone app for seizure tracking and behaviour monitoring for 6 months at home. Monthly acceptability questionnaires (PSSUQ, SUS) and semi-structured interviews were conducted to explore participant experience. Adherence with the procedure, acceptability scores and systematic thematic analysis of the interviews, focusing on the experience with the procedure, motivation and benefits and opinion about the procedure were assessed. RESULTS: Twelve people with epilepsy took part into the study for an average of 193.8 days (range 61 to 312) with a likelihood of using the system at six months of 83 %. The e-diary and the smartwatch were highly acceptable and preferred to a wearable EEG system (PSSUQ score of 1.9, 1.9, 2.4). Participants showed an acceptable level of adherence with all solutions (Average usage of 63 %, 66 %, 92 %) reporting more difficulties using the EEG twice a day and remembering to complete the daily behavioural questionnaires. Clear information and training, continuous remote support, perceived direct and indirect benefits and the possibility to have a flexible, tailored to daily routine monitoring were defined as key factors to ensure compliance with long-term monitoring systems. CONCLUSIONS: EEG@HOME study demonstrated people with epilepsy' interest and ability in active health monitoring using new technologies. Remote training and support enable independent home use of new non-invasive technologies, but to ensure long term acceptability and usability systems will require to be integrated into patients' routines, include healthcare providers, and offer continuous support and personalized feedback.

Being an adolescent with epilepsy during the transition from pediatric to adult hospital care: A qualitative descriptive study.

BACKGROUND: The transition from pediatric to adult care is challenging for adolescent patients despite numerous recommendations in recent decades. However, the perspective of the patients is sparsely investigated. AIM: To explore the experiences and needs of adolescents with epilepsy (AWE) during the transition from pediatric to adult hospital care. METHODS: We conducted 15 semi-structured interviews with AWEs aged 13-20 years and 10 h of field observations of consultations. Interviews were audio-recorded, transcribed, anonymized, and entered into NVivo (version 12, QSR International) with the transcribed field notes. Data were analyzed using systematic text condensation. RESULTS: Three themes were identified: (1) Navigating epilepsy in everyday life; (2) The difficult balance between concealment and openness about epilepsy; and (3) Being seen as an individual and not an illness. AWEs' needs in transition are closely associated with their experiences and perceptions of illness, treatment, consultations, and seizures. Notably, AWEs reveal a significant concern about being overlooked beyond their medical condition in appointments. CONCLUSIONS: This study highlights the vulnerability and challenges of AWEs transitioning to adult care. Overall, AWEs seek understanding, acceptance, and autonomy in managing their epilepsy and transitioning to adult care. Their experiences underscore the importance of holistic support and communication in healthcare settings. A concerted effort from healthcare professionals (HCP) is necessary to foster the recognition of AWEs as individuals with distinct personalities, needs, and capabilities.

Effects of medication management in geriatric patients who have fallen: results of the EMMA mixed-methods study.

BACKGROUND: comprehensive medication management (CMM) can reduce medication-related risks of falling. However, knowledge about inter-individual treatment effects and patient-related barriers remains scarce. OBJECTIVE: to gain in-depth insights into how geriatric patients who have fallen view their medication-related risks of falling and to identify effects and barriers of a CMM in preventing falls. DESIGN: complementary mixed-methods pre-post study, based on an embedded quasi-experimental model. SETTING: geriatric fracture centre. METHODS: qualitative, semi-structured interviews framed the CMM intervention, including a follow-up period of 12 weeks. Interviews explored themes of falling, medication-related risks, post-discharge acceptability and sustainability of interventions using qualitative content analysis. Optimisation of pharmacotherapy was assessed via changes in the weighted and summated Medication Appropriateness Index (MAI) score, number of fall-risk-increasing drugs (FRID) and potentially inappropriate medications (PIM) according to the Fit fOR The Aged and PRISCUS lists using parametric testing. RESULTS: thirty community-dwelling patients aged ≥65 years, taking ≥5 drugs and admitted after an injurious fall were recruited. The MAI was significantly reduced, but number of FRID and PIM remained largely unchanged. Many patients were open to medication reduction/discontinuation, but expressed fear when it came to their personal medication. Psychosocial issues and pain increased the number of indications. Safe alternatives for FRID were frequently not available. Psychosocial burden of living alone, fear, lack of supportive care and insomnia increased after discharge. CONCLUSION: as patients' individual attitudes towards trauma and medication were not predictable, an individual and longitudinal CMM is required. A standardised approach is not helpful in this population.

Patients' perspectives on weight recurrence after bariatric surgery: a single-center survey.

BACKGROUND: Weight recurrence (WR) affects nearly 20% of patients after bariatric surgery and may decrease its benefits, affecting patients' quality of life negatively. Patient perspectives on WR are not well known. OBJECTIVES: Assess patient needs, goals, and preferences regarding WR treatment. SETTING: Single MBSAQIP-accredited academic center, and online recruitment. METHODS: An 18-item, web-based survey was distributed to adults seeking treatment for WR after a primary bariatric surgery (PBS), in addition to online recruitment, between 2021 and 2023. Survey items included somatometric data, questions about the importance of factors for successful weight loss, procedure decision-making, and treatment expectations. RESULTS: Fifty-six patients with > 10% increase from their nadir weight were included in the study. Patients had initially undergone Roux-en-Y gastric bypass (62.5%), sleeve gastrectomy (28.6%), adjustable gastric banding (3.6%), or other procedures (5.3%). When assessing their satisfaction with PBS, 57.1% were somewhat/extremely satisfied, 33.9% somewhat/extremely dissatisfied, while 8.9% were ambivalent. Patients considered the expected benefits (for example, weight loss) as the most important factor when choosing a treatment option for WR. Patient goals included "feeling good about myself" (96.4% very/extremely important), "being able to resume activities I could not do before" (91% very/extremely important), and "improved quality of life" and "-life expectancy" (> 90% very/extremely important). Finally, RBS, lifestyle modification with peer support, and anti-obesity medication were ranked as first treatment options for WR by 40%, 38.8%, and 29.8% of the respondents, respectively. CONCLUSIONS: Patients considered weight loss as the most important factor when choosing treatment modality for WR, with RBS and lifestyle changes being preferred over weight-loss medications. Large prospective randomized trials are needed to counsel this patient population better.

Uptake of a self-guided digital treatment for depression and anxiety: A qualitative study exploring patient perspectives and decision-making.

BACKGROUND: Despite the demonstrated efficacy and potential scalability of self-guided digital treatments for common mental health conditions, there is substantial variability in their uptake and engagement. This study explored the decision-making processes, influences and support needs of people taking up a self-guided digital treatment for anxiety and/or depression. METHODS: Australian-based adults (n = 20) were purposively sampled from a trial of self-guided digital mental health treatment. One-to-one, semistructured interviews were conducted, based on the Ottawa Decision-Support Framework. Interviews were transcribed verbatim and analysed thematically using framework methods. Baseline sociodemographic, clinical and decision-making characteristics were also collected. RESULTS: Analyses yielded four themes. Theme 1 captured participants' openness to try self-guided digital treatment, despite limited deliberation on potential downsides or alternative options. Theme 2 highlighted that immediacy and ease of access were major drivers of uptake, which participants contrasted with gaps in access and continuity of care in face-to-face services, especially rurally. Theme 3 centred on participants as the main agents in their decision-making, with family and health professional attitudes also reportedly influencing decision-making. Theme 4 revealed participants' primary motivations for deciding to take up treatment (e.g., the potential to increase insight and coping skills), while also acknowledging that pre-existing characteristics (e.g., health and digital literacy, insight) determined participants' personal suitability for self-guided digital treatment. CONCLUSION: Findings help to elucidate the decision-making influences and processes amongst people who started a self-guided treatment for depression and anxiety. Additional information and decision support resources appear warranted, which may also improve the accessibility of self-guided treatments. PUBLIC OR PATIENT CONTRIBUTION: Patients were interviewed about their views and experiences of decision-making about accessing and taking up treatment. As such, patient contribution to the research was as study participants.

Understanding the barriers and facilitators of healthcare services for brain injury and concurrent mental health and substance use issues: a qualitative study.

BACKGROUND: People with acquired brain injury (ABI) may experience concurrent conditions such as, mental health and substance use concerns, that require specialized care. There are services that aim to support people with ABI and these conditions separately; however, little is known about the facilitators and barriers of these services. Therefore, the purpose of this study was to engage stakeholders to investigate the facilitators and barriers of healthcare services for ABI and concurrent issues. METHODS: Semi-structured focus groups were conducted in-person and virtually with people with ABI, caregivers, healthcare professionals, and policy makers during a one-day event in British Columbia, Canada. Manifest content analysis was used with a constructivist perspective to analyze data. RESULTS: 90 participants (including 34 people with ABI) provided insights during 15 simultaneous focus groups. Three categories were identified: (1) complexity of ABI, (2) supports, (3) structure of care. Complexity of ABI outlined the ongoing basic needs after ABI and highlighted the need for public awareness of ABI. Supports outlined healthcare professional and community-based supports. Structure of care described people with ABI needing to meet criteria for support, experiences of navigating through the system and necessity of integrated services. CONCLUSIONS: These findings highlight the facilitators and barriers of healthcare services for ABI and concurrent conditions and provide insights into the changes that may be needed. Doing so can improve the accessibility and quality of ABI healthcare services.

Exploring patient perspectives on EQ-5D-5L data visualization within an individualized decision aid for total knee arthroplasty (TKA) in Alberta, Canada.

BACKGROUND: Decision aids can help patients set realistic expectations. In this study, we explored alternative presentations to visualise patient-reported outcomes (EQ-5D-5L) data within an online, individualized patient decision aid for total knee arthroplasty (TKA) that, in part, generates individualized comparisons based on age, sex and body mass index, to enhance usability prior to implementation into routine clinical practice. METHODS: We used data visualization techniques to modify the presentation of EQ-5D-5L outcomes data within the decision aid. The EQ-5D-5L data was divided into two parts allowing patients to compare themselves to similar individuals (1) pre-surgery and (2) 1-year post-surgery. We created 2 versions for each part and sought patient feedback on comprehension, usefulness, and visual appeal. Patients from an urban orthopedic clinic were recruited and their ratings and comments were recorded using a researcher-administered checklist. Data were managed using Microsoft Excel, R version 3.6.1 and ATLAS.ti V8 and analyzed using descriptive statistics and directed content analysis. RESULTS: A total of 24 and 25 patients participated in Parts 1 and 2, respectively. Overall, there was a slight preference for Version 1 in Part 1 (58.3%) and Version 2 in Part 2 (64%). Most participants demonstrated adequate comprehension for all versions (range 50-72%) and commented that the instructions were clear. While 50-60% of participants rated the content as useful, including knowing the possible outcomes of surgery, some participants found the information interesting only, were unsure how to use the information, or did not find it useful because they had already decided on a treatment. Participants rated visual appeal for all versions favorably but suggested improvements for readability, mainly larger font and image sizes and enhanced contrast between elements. CONCLUSIONS: Based on the results, we will produce an enhanced presentation of EQ-5D-5L data within the decision aid. These improvements, along with further usability testing of the entire decision aid, will be made before implementation of the decision aid in routine clinical practice. Our results on patients' perspectives on the presentation of EQ-5D-5L data to support decision making for TKA treatments contributes to the knowledge on EQ-5D-5L applications within healthcare systems for clinical care.

Acceptability of artificial intelligence for cervical cancer screening in Dschang, Cameroon: a qualitative study on patient perspectives.

BACKGROUND: Cervical cancer is the fourth most frequent cancer among women, with 90% of cervical cancer-related deaths occurring in low- and middle-income countries like Cameroon. Visual inspection with acetic acid is often used in low-resource settings to screen for cervical cancer; however, its accuracy can be limited. To address this issue, the Swiss Federal Institute of Technology Lausanne and the University Hospitals of Geneva are collaborating to develop an automated smartphone-based image classifier that serves as a computer aided diagnosis tool for cancerous lesions. The primary objective of this study is to explore the acceptability and perspectives of women in Dschang regarding the usage of a screening tool for cervical cancer relying on artificial intelligence. A secondary objective is to understand the preferred form and type of information women would like to receive regarding this artificial intelligence-based screening tool. METHODS: A qualitative methodology was employed to gain better insight into the women's perspectives. Participants, aged between 30 and 49 were invited from both rural and urban regions and semi-structured interviews using a pre-tested interview guide were conducted. The focus groups were divided on the basis of level of education, as well as HPV status. The interviews were audio-recorded, transcribed, and coded using the ATLAS.ti software. RESULTS: A total of 32 participants took part in the six focus groups, and 38% of participants had a primary level of education. The perspectives identified were classified using an adapted version of the Technology Acceptance Model. Key factors influencing the acceptability of artificial intelligence include privacy concerns, perceived usefulness, and trust in the competence of providers, accuracy of the tool as well as the potential negative impact of smartphones. CONCLUSION: The results suggest that an artificial intelligence-based screening tool for cervical cancer is mostly acceptable to the women in Dschang. By ensuring patient confidentiality and by providing clear explanations, acceptance can be fostered in the community and uptake of cervical cancer screening can be improved. TRIAL REGISTRATION: Ethical Cantonal Board of Geneva, Switzerland (CCER, N°2017-0110 and CER-amendment n°4) and Cameroonian National Ethics Committee for Human Health Research (N°2022/12/1518/CE/CNERSH/SP). NCT: 03757299.

Globally, cervical cancer is the fourth most frequent cancer among women. However, 90% of all deaths caused by cervical cancer occur in low-and middle-income countries. Methods traditionally used in settings like Cameroon to detect cervical cancer unfortunately lack accuracy. Therefore, researchers at the Swiss Federal Institute of Technology Lausanne and the University Hospitals of Geneva are developing an artificial intelligence-based computer aided diagnosis tool to detect pre-cancerous lesions using a smartphone application. The aim of this study was to explore the acceptability and perspectives regarding an AI-based tool for cervical cancer screening for women in Dschang, a city in the west of Cameroon. A qualitative methodology was conducted with six focus groups and a total of 32 participants. The main concerns highlighted by the study are related to privacy, trust in the ability of the healthcare providers, accuracy of the tool as well as the potential negative impact of smartphones. In conclusion, our results show that a computer aided diagnosis tool using artificial intelligence is mostly acceptable to women in Dschang, as long as their confidentiality is preserved, and they are provided with clear explanations beforehand.

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

BACKGROUND: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. METHODS: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. RESULTS: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. CONCLUSIONS: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

"Who's watching?": Exploring patients' acceptance of having their consultations livestreamed for educational purposes.

Shortages of clinical placements are an ever-increasing global challenge. Livestreaming clinical experiences to remotely-located learners shows promise in addressing this challenge. However, little is known about the acceptability of livestreamed clinical experiences for patients. Understanding patient views is critical to determine feasibility of this method of delivering clinical experience. This study reports on the experiences of 11 patients who participated in a livestreamed clinical experience in general practices in Yorkshire, United Kingdom. Up to five remotely-located medical students participated in each consultation. Semi-structured interviews were conducted and analysed using thematic analysis. Findings suggest that a livestreamed clinical experience did not impact patients' experience of their consultation, including willingness to withdraw from the consultation. Smartglasses worn by clinicians did not impede patient-clinician interaction, likely because they did not obstruct eye contact. Patient views varied as to whether or not they preferred to see students on the computer screen during the consultation, raising potential tensions between student learning needs and patient preference. Most patients had no preference as to whether students participated remotely or in person. These findings show promise in terms of patient acceptability but further research evaluating patient perspectives in greater numbers and in other clinical contexts is important.

Towards improving the lived experience of adult congenital heart patients: suggestions for health care practitioners.

What steps may clinicians looking after adult congenital heart patients take to improve the care they provide? An adult with complex congenital heart disease (CHD) who required a Fontan circulation has developed a discussion paper with the help of his attending clinicians. Drawing on his personal experience and that of others that he has represented, the paper highlights the problems in communication between such patients and their physician, followed by suggestions as to how to improve patient engagement, empowerment, and enablement. Attention to those suggestions may well benefit all in the care provided for this growing population.

The Listening Guide: Illustrating an underused voice-centred methodology to foreground underrepresented research populations.

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

Navigating Life With Parkinson's Disease: A Focus Group Study on Coping Strategies and Considerations for Self-Management Support.

AIM: To investigate the experiences of people with Parkinson's disease in coping with and adapting to their disease and to identify considerations for a tailored self-management support program. DESIGN: A descriptive phenomenological focus group study. METHODS: Five semi-structured focus groups were conducted between April 2023 and June 2023 in the Netherlands, with 12 people with Parkinson's disease. Two researchers independently performed an inductive content analysis. RESULTS: Three principal categories emerged: (1) Rational realisation versus emotional experience: the coping strategy transition. This category includes three main coping strategies: denial or avoidance coping, acknowledging with less active coping and proactive and task-oriented coping. (2) Factors that influence coping, including mindset and skills, social circles and communication and access to support and care. (3) Considerations for successful self-management of Parkinson's disease, highlighting key areas such as psycho-emotional guidance, nutrition and lifestyle, peer support and maintaining autonomy and sense of identity. CONCLUSION: Coping and adaptation strategies are individual and dynamic processes, with multiple key or turning points during the transition between strategies. Tailored self-management support can enhance coping abilities during these transitions, fostering adaptation to a life with Parkinson's disease. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: A patient-focused version of an existing blended self-management support program for family caregivers will be developed, which will be delivered by healthcare professionals. IMPACT: This study can help healthcare professionals tailor support for people with Parkinson's disease, emphasising their role in facilitating coping and adaptation. Enhancing self-management can improve self-efficacy, quality of life and potentially reduce healthcare utilisation in people with Parkinson's disease. REPORTING METHOD: Findings are reported according to the COREQ guidelines. PATIENT OR PUBLIC CONTRIBUTION: Patients and Parkinson's disease experts participated in the preparation and implications of the findings. All participants could contribute to the self-management support program, either through video interviews or content feedback.

Grieving multiple losses: Experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study.

AIM: To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease. DESIGN: An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space. METHODS: Data were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms. RESULTS: Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged. CONCLUSIONS: A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief. IMPACT: First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study design.

Youth, caregiver and healthcare professional perspectives on planning the implementation of a trauma-informed care programme: A qualitative study.

AIMS: To explore youth, caregiver and staff perspectives on their vision of trauma-informed care, and to identify and understand potential considerations for the implementation of a trauma-informed care programme in an inpatient mental health unit within a paediatric hospital. DESIGN AND METHODS: We applied the Interpretive Description approach, guided by complexity theory and the Implementation Roadmap, and used Applied Thematic Analysis methods. FINDINGS: Twenty-five individuals participated in individual or group interviews between March and June 2022, including 21 healthcare professionals, 3 youth and 1 caregiver. We identified two overarching themes. The first theme, 'Understanding and addressing the underlying reasons for distress', related to participants' understanding and vision of TIC in the current setting comprising: (a) 'Participants' understanding of TIC'; (b) 'Trauma screening and trauma processing within TIC'; (c) 'Taking "a more individualized approach"'; (d) 'Unit programming'; and (e) "Connecting to the community". The second theme, 'Factors that support or limit successful TIC implementation' comprises: (a) 'The need for a broad "cultural shift"'; (b) 'The physical environment on the unit'; and (c) 'Factors that may limit successful implementation'. CONCLUSION: We identified five key domains to consider within trauma-informed care implementation: (a) the centrality of engagement with youth, caregivers and staff in trauma-informed care delivery and implementation, (b) trauma-informed care core programme components, (c) factors that may support or limit success in implementing trauma-informed care within the mental health unit and (d) hospital-wide and (e) the importance of intersectoral collaboration (partnering with external organizations and sectors). IMPACT: When implementing TIC, there is an ongoing need to increase clarity regarding TIC interventions and implementation initiatives. Youth, caregiver and healthcare professional participants shared considerations important for planning the delivery and implementation of trauma-informed care in their setting. We identified five key domains to consider within trauma-informed care implementation: (a) the centrality of relational engagement, (b) trauma-informed care programme components, (c) factors that may support or limit successful implementation of trauma-informed care within the mental health unit and (d) hospital-wide and (e) the importance of intersectoral collaboration. Organizations wishing to implement trauma-informed care should consider ongoing engagement with all relevant knowledge user groups throughout the process. REPORTING METHOD: Standards for Reporting Qualitative Research (SRQR). PATIENT OR PUBLIC CONTRIBUTION: The local hospital research institute's Patient and Family Advisory Committee reviewed the draft study methods and provided feedback.