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.

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.

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.

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.

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.

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.

Early identification of pressure injuries in people with dark skin tones: Qualitative perspectives from community-based patients and their carers.

AIM: To examine the personal experiences and perceptions of people with dark skin tones and their carers, in relation to pressure injury. DESIGN: Qualitative study using semi-structured interviews. METHODS: Twenty-two interviews with people with dark skin tone and/or their family carers, who were known to and visited by community nurses for pressure area management or who had been identified as being at high risk for developing a pressure injury were carried out. RESULTS: Thematic analysis of the interview transcripts revealed that skin discolouration towards a darker hue than usual was the commonest symptom identified by participants as a sign of altered skin integrity and potential pressure damage. Four main overarching themes were revealed through comprehensive analysis of the transcripts: (1) indicators of pressure injury; (2) experienced symptoms of pressure damage; (3) trust in healthcare workers; and (4) improving care for populations with dark skin tones. CONCLUSION: The findings from this study clearly present how early-stage pressure damage is identified among people with dark skin tones. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: These findings have the potential to reduce health inequality by influencing and informing clinical policies and strategies in practice. Findings could also lead to the development of patient-informed educational strategies for nurses and health workers which will enable the early identification of pressure ulcers among people with dark skin tones. Further research is needed to better understand health disparities in relation to preventable patient safety harm. IMPACT: The findings demonstrate the importance of engaging with and listening to the stories and experiences of people living with pressure damage to help in the early recognition of pressure injuries. REPORTING METHOD: The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines for qualitative research were followed. PATIENT OR PUBLIC CONTRIBUTION: A project steering group reviewed information sheets for participants and checked the interview questions were relevant and suitable.

Is a randomised controlled trial of take home naloxone distributed in emergency settings likely to be feasible and acceptable? Findings from a UK qualitative study exploring perspectives of people who use opioids and emergency services staff.

OBJECTIVE: Distribution of take-home naloxone (THN) by emergency services may increase access to THN and reduce deaths and morbidity from opioid overdose. As part of a feasibility study for a randomised controlled trial (RCT) of distribution of THN kits and education within ambulance services and Emergency Departments (EDs), we used qualitative methods to explore key stakeholders' perceptions of feasibility and acceptability of delivering the trial. METHODS: We undertook semi-structured interviews and focus groups with 26 people who use opioids and with 20 paramedics and ED staff from two intervention sites between 2019 and 2021. Interviews and focus groups were recorded, transcribed verbatim and analysed using Framework Analysis. RESULTS: People using opioids reported high awareness of overdose management, including personal experience of THN use. Staff perceived emergency service provision of THN as a low-cost, low-risk intervention with potential to reduce mortality, morbidity and health service use. Staff understood the trial aims and considered it compatible with their work. All participants supported widening access to THN but reported limited trial recruitment opportunities partly due to difficulties in consenting patients during overdose. Procedural problems, restrictive recruitment protocols, limited staff buy-in and patients already owning THN limited trial recruitment. Determining trial effectiveness was challenging due to high levels of alternative community provision of THN. CONCLUSIONS: Distribution of THN in emergency settings was considered feasible and acceptable for stakeholders but an RCT to establish the effectiveness of THN delivery is unlikely to generate further useful evidence due to difficulties in recruiting patients and assessing benefits.

The voices of breast cancer survivors with chronic pain: A qualitative thematic analysis of patients' challenges to pain management.

OBJECTIVES: Recognizing the limitations of the current pain therapies, the study aimed to explore the unique needs and obstacles related to pain management in Breast Cancer Survivors (BCs) with Chronic Pain (CP). METHODS: 4 focus groups were conducted involving 17 BCs with CP (Mage = 51, SD = 7.99) with varying pain intensities. Thematic analysis was applied to transcribed discussions. FINDINGS: Three key themes emerged: (1) Challenges to pain management, including "Doctor-patients communications barriers" and "Contextual and societal barriers"; (2) Self-management needs, encompassing "Psycho-social support," "Care-related needs," and "Shared decision-making"; (3) Treatment preferences and perceptions of pain management, with subthemes like "Treatment preferences," "Institution preference," and "Decision role perception." CONCLUSIONS: This study emphasizes tailored support systems targeting patient hesitancy, countering pain normalization, and addressing healthcare providers' attitudes. It underscores the importance of integrating caregiver and peer support. Findings advocate refining healthcare provider education, adopting a comprehensive multidisciplinary approach, and strategically incorporating eHealth tools into such care.

The Impact of the COVID-19 Pandemic on Patients With CKD: Systematic Review of Qualitative Studies.

RATIONALE & OBJECTIVE: COVID-19 disproportionately affects people with comorbidities, including chronic kidney disease (CKD). We describe the impact of COVID-19 on people with CKD and their caregivers. STUDY DESIGN: A systematic review of qualitative studies. SETTING & STUDY POPULATIONS: Primary studies that reported the experiences and perspectives of adults with CKD and/or caregivers were eligible. SEARCH STRATEGY & SOURCES: MEDLINE, Embase, PsycINFO, CINAHL searched from database inception to October 2022. DATA EXTRACTION: Two authors independently screened the search results. Full texts of potentially relevant studies were assessed for eligibility. Any discrepancies were resolved by discussion with another author. ANALYTICAL APPROACH: A thematic synthesis was used to analyze the data. RESULTS: Thirty-four studies involving 1,962 participants were included. Four themes were identified: exacerbating vulnerability and distress (looming threat of COVID-19 infection, intensifying isolation, aggravating pressure on families); uncertainty in accessing health care (overwhelmed by disruption of care, confused by lack of reliable information, challenged by adapting to telehealth, skeptical about vaccine efficacy and safety); coping with self-management (waning fitness due to decreasing physical activity, diminishing ability to manage diet, difficulty managing fluid restrictions, minimized burden with telehealth, motivating confidence and autonomy); and strengthening sense of safety and support (protection from lockdown restrictions, increasing trust in care, strengthened family connection). LIMITATIONS: Non-English studies were excluded, and inability to delineate themes based on stage of kidney and treatment modality. CONCLUSIONS: Uncertainty in accessing health care during the COVID-19 pandemic exacerbated vulnerability, emotional distress, and burden, and led to reduced capacity to self-manage among patients with CKD and their caregivers. Optimizing telehealth and access to educational and psychosocial support may improve self-management and the quality and effectiveness of care during a pandemic, mitigating potentially catastrophic consequences for people with CKD. PLAIN-LANGUAGE SUMMARY: During the COVID-19 pandemic, patients with chronic kidney disease (CKD) faced barriers and challenges to accessing care and were at an increased risk of worsened health outcomes. To understand the perspectives about the impact of COVID-19 among patients with CKD and their caregivers, we conducted a systematic review of 34 studies involving 1,962 participants. Our findings demonstrated that uncertainty in accessing care during the COVID-19 pandemic exacerbated the vulnerability, distress, and burden of patients and impaired their abilities for self-management. Optimizing the use of telehealth and providing education and psychosocial services may mitigate the potential consequences for people with CKD during a pandemic.

"They were an advocate for me": A Qualitative Study Exploring Medical Student Longitudinal Relationships and Patient Well-Being.

BACKGROUND: Patient navigators, community health workers, and care management teams improve patient experience and health outcomes. Medical student involvement in these roles is limited. Evaluation of these programs focuses on the student experience with less attention to patient participants. OBJECTIVES: We sought (1) to understand the experience of being a participant in a medical education program; (2) to explore the patient-medical student relationship; and (3) to describe the impact of this relationship on patient health and well-being. DESIGN: This was a qualitative study that utilized in-depth semi-structured interviews. PARTICIPANTS: Participants were selected based on enrollment in a preceptorship program at an urban academic medical center between 2017 and 2020. Participants worked with a medical student during an 18-month period in which the medical student was embedded in a primary care medical home, serving as a health systems navigator for 1-2 medically and socially complex patients. APPROACH: Nine participants completed 1-h compensated phone interviews. This study was deemed IRB exempt. KEY RESULTS: Three themes and eight subthemes were identified, including Navigators Were Key to Accessing the System, Interpersonal Partnerships Improved Health, and Fulfillment in Teaching of Lived Experience. Navigators eased the burden of chronic illness by being a point of contact in the health system, which improved participants' overall experience. Participants also described the relationship as therapeutic, citing improvement and stability in both mental and physical health. Lastly, participants found meaning in chronic illness by teaching their students empathy. CONCLUSIONS: Longitudinal patient-medical student relationships may provide stability and health benefits. These partnerships have the possibility of adding value to patients' healthcare experiences. This study complements current literature highlighting the value of these relationships for pre-clinical medical students. As such, additional opportunities for and additional research regarding the value of longitudinal patient connection should be incorporated in undergraduate medical education.

A qualitative exploration of patient perspectives on psychosocial burdens and positive factors in adults with osteogenesis imperfecta.

Osteogenesis imperfecta (OI) is a pleiotropic, heritable connective tissue disorder associated with a wide range of health implications, including frequent bone fracture. While progress has been made to understand the spectrum of these physical health implications, the impact of OI on psychosocial well-being, as well as protective factors that buffer against adverse psychosocial outcomes, remain understudied. This present study relies on a qualitative approach to assess patient perspectives on both protective and adverse psychosocial factors specific to OI in 15 adults with varying disease status. Semi-structured interviews were conducted, subsequently coded, and themes extracted. Themes concerning psychosocial burdens (i.e., negative affective and behavioral impacts of disease status) and protective factors were identified from cooperatively-coded transcripts (two coders per transcript). Participants reported experiencing an increase in negative affect and disease-related distress after fracturing a bone and during recovery. Fear and concern specific to the uncertainty of future bone fractures and negative self-image was common. In contrast to these negative impacts, participants additionally described positive orientations toward their disease and attributed positive traits to their lived experience with a chronic disease. While limited due to small sample size and lack of ethno-racial diversity, findings highlight a need for continued research on the relationship between OI disease status and psychosocial outcomes, as well as the development of psychological interventions designed for OI populations. Findings have relevant clinical applications for healthcare providers working with those diagnosed with OI.