What is known about healthcare professional-patient communication when discussing stem cell therapies? A scoping review.

OBJECTIVES: When therapeutic options are limited, patients may invest hope in therapies proposed by healthcare professional, or those they find online. This review aims to explore how healthcare professional-patient communication is realised when discussing stem cell therapies. METHOD: Four electronic databases were systematically searched for relevant studies. Twenty-six studies met the inclusion criteria. Descriptive analyses and a thematic analysis guided by a functions of medical communication framework were performed on extracted data. RESULTS: Most included studies addressed communication in contexts of conventional stem cell therapies, such as bone marrow transplants for blood cancers. Few studies investigated communication in contexts of experimental stem cell therapies yet to receive regulatory approval. Two themes were identified as informational and relational aspects of communication, and a third theme being a mismatch in orientations. CONCLUSIONS: Communication between healthcare professionals and patients about stem cell therapies is practised using a combination of communication approaches that do not always align with patients' needs, hopes or expectations. PRACTICE IMPLICATIONS: The context of healthcare settings and health conditions are important when communicating about stem cell therapies. Acknowledging healthcare professionals' environmental and personal determinants can inform strategies to navigate complex discussions about stem cell therapies with patients.

A Bilingual Readability Assessment of Online Breast Cancer Screening and Treatment Information.

INTRODUCTION: Presenting health information at a sixth-grade reading level is advised to accommodate the general public's abilities. Breast cancer (BC) is the second-most common malignancy in women, but the readability of online BC information in English and Spanish, the two most commonly spoken languages in the United States, is uncertain. METHODS: Three search engines were queried using: "how to do a breast examination," "when do I need a mammogram," and "what are the treatment options for breast cancer" in English and Spanish. Sixty websites in each language were studied and classified by source type and origin. Three readability frameworks in each language were applied: Flesch Kincaid Reading Ease, Flesch Kincaid Grade Level, and Simple Measure of Gobbledygook (SMOG) for English, and Fernández-Huerta, Spaulding, and Spanish adaptation of SMOG for Spanish. Median readability scores were calculated, and corresponding grade level determined. The percentage of websites requiring reading abilities >sixth grade level was calculated. RESULTS: English-language websites were predominantly hospital-affiliated (43.3%), while Spanish websites predominantly originated from foundation/advocacy sources (43.3%). Reading difficulty varied across languages: English websites ranged from 5th-12th grade (Flesch Kincaid Grade Level/Flesch Kincaid Reading Ease: 78.3%/98.3% above sixth grade), while Spanish websites spanned 4th-10th grade (Spaulding/Fernández-Huerta: 95%/100% above sixth grade). SMOG/Spanish adaptation of SMOG scores showed lower reading difficulty for Spanish, with few websites exceeding sixth grade (1.7% and 0% for English and Spanish, respectively). CONCLUSIONS: Online BC resources have reading difficulty levels that exceed the recommended sixth grade, although these results vary depending on readability framework. Efforts should be made to establish readability standards that can be translated into Spanish to enhance accessibility for this patient population.

Interprofessional contact with conventional healthcare providers in oncology: a survey among complementary medicine practitioners.

BACKGROUND: Half of all patients with cancer use complementary medicine. Given the benefits and risks associated with complementary medicine use, contact between complementary medicine practitioners and conventional healthcare providers (oncologists, nurses) is important for monitoring the health and well-being of mutual patients with cancer. Research on occurrence of such interprofessional contact is scarce. This study aims to describe complementary medicine practitioners' experiences with contact with conventional healthcare providers about mutual patients with cancer and the importance they attach to patient disclosure of complementary medicine use to their conventional healthcare provider. Predictors for interprofessional contact are explored. METHODS: An online survey was administered among complementary medicine practitioners who treat patients with cancer or cancer survivors and who are member of a professional association in the Netherlands. RESULTS: The survey was completed by 1481 complementary medicine practitioners. 40% of the participants reported to have contact with conventional healthcare providers of patients with cancer. Only 13% of the complementary medicine practitioners experienced conventional healthcare providers as open to communication with them. An explorative logistic regression showed that openness of conventional healthcare providers as experienced by complementary medicine practitioners was the most important predictor for the occurrence of interprofessional contact (OR = 8.12, 95% CI 5.12-12.86, p < .001). Most complementary medicine practitioners (82%) considered it important that patients disclose complementary medicine use to their conventional healthcare provider and 49% of the participants always motivates their patients to do so. CONCLUSIONS: Interprofessional contact with conventional healthcare providers in oncology occurs but is not routine for most complementary medicine practitioners. More than one-third of the surveyed complementary medicine practitioners experienced conventional healthcare providers as not open to communication with them. The openness of conventional healthcare providers as experienced by complementary practitioners is an important predictor for interprofessional contact to take place. Most complementary practitioners acknowledge the importance of patient disclosure of complementary medicine use to their conventional healthcare provider. Open communication about the topic of complementary medicine use between complementary practitioners, conventional healthcare providers and patients prevents overlooking relevant medical information and facilitates optimal monitoring of health and safety of patients with cancer.

Online vs. face-to-face interactive communication education using video materials among healthcare college students: a pilot non-randomized controlled study.

BACKGROUND: This study aimed to examine whether online interactive communication education using video materials was as effective as face-to-face education among healthcare college students. METHODS: The participants were healthcare college students who were enrolled in study programs to obtain national medical licenses. They participated in lectures and exercises on healthcare communication, both online (n = 139) and face-to-face (n = 132). Listening skills, understanding, and confidence in healthcare communication were assessed using a self-assessed tool. RESULTS: From the two-way ANOVA result, the interaction effects between group (online, face-to-face) and time (Time 1, Time 2, Time 3) were not statistically significant. The main effect of time increased significantly from Time1 to Time 3 on understanding of communication with patients (Hedges'g = 0.51, 95%CI 0.27-0.75), confidence in communication with patients (g = 0.40, 95%CI 0.16-0.64), and confidence in clinical practice (g = 0.49, 95%CI 0.25, 0.73), while the score of listening skills had no significant change (Hedges'g = 0.09, 95%CI - 0.03 to 0.45). CONCLUSIONS: The results show that online communication education with video materials and active exercises is as effective in improving students' confidence as face-to-face. It will be necessary to modify the content of this educational program to improve skills as well as confidence in communication. TRIAL REGISTRATION: Not Applicable.

Evaluating Health Literacy Resources for Secondary Hyperparathyroidism in End-Stage Kidney Disease.

INTRODUCTION: Parathyroidectomy is recommended for severe secondary hyperparathyroidism (SHPT) due to end-stage kidney disease (ESKD), but surgery is underutilized. High quality and accessible online health information, recommended to be at a 6th-grade reading level, is vital to improve patient health literacy. This study evaluated available online resources for SHPT from ESKD based on information quality and readability. METHODS: Three search engines were queried using the terms "parathyroidectomy for secondary hyperparathyroidism," "parathyroidectomy kidney/renal failure," "parathyroidectomy dialysis patients," "should I have surgery for hyperparathyroidism due to kidney failure?," and "do I need surgery for hyperparathyroidism due to kidney failure if I do not have symptoms?" Websites were categorized by source and origin. Two independent reviewers determined information quality using JAMA (0-4) and DISCERN (1-5) frameworks, and scores were averaged. Cohen's kappa evaluated inter-rater reliability. Readability was determined using the Flesch Kincaid Reading Ease, Flesch Kincaid Grade Level, and Simple Measure of Gobbledygook tools. Median readability scores were calculated, and corresponding grade level determined. Websites with reading difficulties >6th grade level were calculated. RESULTS: Thirty one (86.1%) websites originated from the U.S., with most from hospital-associated (63.9%) and foundation/advocacy sources (30.6%). The mean JAMA and DISCERN scores for all websites were 1.3 ± 1.4 and 2.6 ± 0.7, respectively. Readability scores ranged from grade level 5-college level, and most websites scored above the recommended 6th grade level. CONCLUSIONS: Patient-oriented websites tailoring SHPT from ESKD are at a reading level higher than recommended, and the quality of information is low. Efforts must be made to improve the accessibility and quality of information for all patients.

"Nobody gave me information": Hospital experiences of Ghanaian families after maternal mortalities.

Background: Rates of maternal mortality are highest in low-resource settings. Family members are often involved in the critical periods surrounding a maternal death, including transportation to health centers and financial and emotional support during hospital admissions. Maternal death has devastating impacts on surviving family members, which are often overlooked and understudied. Objective: Our study aimed to explore the hospital experiences of family members surrounding a maternal death, and to define their access to and need for institutional and psychosocial support. Study Design: This mixed methods cross-sectional study was conducted at an urban tertiary hospital in Ghana. Maternal mortalities from June 2019 to December 2020 were identified using death certificates. Participants, defined as husbands or other heads of households in families affected by maternal mortality, were purposively recruited. An interview guide was developed using grounded theory. In-person semi-structured interviews were conducted in English or Twi to explore impacts of maternal mortality on family members, with a focus on hospital experiences. Surveys were administered on types of and needs for institutional support. Interviews were audio recorded, translated, transcribed, coded with an iteratively-developed codebook, and thematically analyzed. Survey data was descriptively analyzed. Results: Fifty-one participants included 26 husbands of the deceased woman, 5 parents, 12 siblings, and 8 second-degree relatives. Interviews revealed an overall negative hospital experience for surviving family members, who expressed substantial dissatisfaction and distress. Four themes regarding the hospital experience emerged from the interviews: 1) poor communication from healthcare workers and hospital personnel, which contributed to 2) limited understanding of the patient's clinical status, hospital course, and cause of death; 3) maternal death perceived as avoidable; and 4) maternal death perceived as unexpected and shocking. Survey data revealed that only 10% of participants were provided psychosocial support following the maternal death event, yet 93.3% of those who did not receive support desired this resource. Conclusion: The hospital experience was overall negative for family members and a lack of effective communication emerged as the root cause of this negative perception. Strategies to improve communication between healthcare providers and families are essential. In addition, there is an unmet need for formal mental health resources for families who experience a maternal death.

Identifying Strategies to Improve Shared Decision Making for Pregnant Patients' Decisions about Prenatal Genetic Screens and Diagnostic Tests.

PURPOSE: Prenatal genetic screens and diagnostic tests are vital components of prenatal care. The first prenatal visit is a critical time in the decision-making process when patients decide whether to use these tests in addition to address a series of other essential prenatal care aspects. We conducted this study to examine the role of a shared decision-making (SDM) instrument to support these discussions. METHODS: We conducted a cluster randomized controlled trial of patients allocated to an SDM tool or usual care at their first prenatal visit. Participants completed a baseline survey to measure decision-making needs and preferences. Direct observation was conducted and analyzed using the OPTION scale to measure SDM during prenatal genetic testing discussions. RESULTS: Levels of SDM were similar across groups (P = 0.081). The highest levels of SDM were observed during screening test discussions (NEST 2.4 ± 0.9 v. control 2.6 ± 1.0). Lowest levels were observed in discussions about patients' preference for risk versus diagnostic information (NEST 1.0 ± 1.1 v. control 1.2 ± 1.3). CONCLUSION: Study findings demonstrate the need for targeted patient-focused and provider-focused efforts to improve SDM to enhance patients' informed decision making about these options. Importantly, patients' baseline knowledge and attitudes need to be considered given that patients with less knowledge may need more carefully crafted communication. HIGHLIGHTS: Choices about whether, when, and how to use prenatal genetic tests are highly preference-based decisions, with patients' baseline attitudes about these options as a major driver in health care discussions.The decision-making process is also shaped by patient preferences regarding a shared or informed decision-making process for medical decisions that are highly personal and have significant ramifications for obstetric outcomes.There is a need to develop targeted efforts to improve decision making and enhance patients' ability to make informed decisions about prenatal genetic tests in early pregnancy.

"A very difficult conversation": Challenges and opportunities for improvement in pediatric oncology clinician communication about late effects.

OBJECTIVES: Current approaches to communicating the potential late effects of pediatric oncology treatments leave many patients and families feeling unaware of risks and unprepared for the future. We aimed to identify provider perspectives on early communication about late effects. METHODS: Semi-structured interviews were conducted with pediatric oncology providers at Dana-Farber/Boston Children's Cancer and Blood Disorders Center from December 2021 to March 2022. Purposeful sampling ensured a diversity of clinical roles. Thematic analysis was conducted using deductive and inductive codes. RESULTS: We interviewed nine pediatric oncology providers; all expressed discomfort discussing potential late effects in early treatment conversations. Barriers to late effects communication included (i) social-emotional factors, including lack of perceived importance to families, worry about emotional burden on families, and provider feelings of helplessness/wanting to provide hope; and (ii) suboptimal set-up/resources, including limitations of consent forms, time constraints, and lack of available data. All providers supported the creation of a communication tool to assist early discussions of late effects. CONCLUSIONS: Communicating about late effect risks poses unique challenges to providers because of the perceived impact on families and the limitations of current practices and available resources. These findings support the need for a late effects communication tool to assist in early communication about late effects risks.

Androgen deprivation therapy in advanced prostate cancer: insights from a real-world patient survey on health-related quality of life and information and communication sources.

PURPOSE: Androgen deprivation therapy (ADT) is a cornerstone treatment for advanced and metastatic prostate cancer. Real-world and patient-reported insights into ADT's impact on health-related quality of life (HRQoL) and communication experiences in healthcare settings remain underexplored. This patient organisation-initiated online survey aimed to assess these aspects. METHODS: Between December 2022 and August 2023, the patient organisation Think Blue Vlaanderen and the AZ Sint-Jan Hospital (Bruges, Belgium) invited ADT-treated patients to participate in a prospective, online, cross-sectional, patient-reported outcome survey. Demographic, clinical, HRQoL (FACT and EPIC-26), communication sources and information modality data were collected. Descriptive statistics and comparative analyses were applied. RESULTS: A total of 276/312 (88.5%) participating patients were on ADT at time of survey administration and completion, with the majority receiving a 3-monthly regimen. Sexual HRQoL was low and narrowly distributed (median (IQR): 16.7 (16.7-16.7)), with 84% of patients having erectile dysfunction (ED). Patients finding their ED problematic were more likely to seek pharmaceutical treatment. Hormonal HRQoL was widely distributed (median (IQR): 65 (45-85)), which improved with prolonged ADT duration. Physically active patients reported less lack of energy, but increased hot flashes. Within consistent FACT-G summary scores (median (IQR): 64.50 (54.75-77.00)), improved emotional wellbeing with prolonged ADT was noted. Multidisciplinary communication and multimodal information provision improved patient satisfaction. CONCLUSION: Patient organisation-initiated surveys offer real-world and patient-reported insights. Patient-tailored HRQoL assessments and longitudinal follow-up, physical activity, and multidisciplinary and multimodal communication approaches are warranted to improve patient-centred care in patients receiving ADT.

Beyond the Diagnosis: A Deep Dive Into the End Stage Liver Disease Experience From the Patient Perspective.

INTRODUCTION: End-stage liver disease (ESLD) presents a multifaceted challenge that encompasses not only physical but also emotional, psychological, and social dimensions. This study aims to explore the experiences of ESLD patients within the United States healthcare system. METHODS: Utilizing a convenience sampling methodology, 15 ESLD patients from a tertiary care hospital in the USA participated in semi-structured interviews between April 2023 and January 2024. Data analysis was conducted using MAXQDA 2023, employing a phenomenological approach to identify common themes. RESULTS: The study identified six primary themes: the significance of communication style in diagnosis delivery, the crucial role of family and social support, varied understanding and preferences for palliative care, diverse attitudes towards advanced care planning, preferences for coordinated healthcare experiences, and the emotional and psychological impact of ESLD. CONCLUSION: Our study underscores the complexity of ESLD patient care beyond medical treatment, highlighting the importance of clear communication, empathetic care, and the integration of family and palliative care services.

Discharge Interventions for Limited English Proficiency Patients: A Scoping Review.

BACKGROUND: Limited English proficiency patients are required under federal law to receive language-concordant care, yet they still receive substandard discharge instructions compared to English-speaking patients. We aimed to summarize the interventions carried out to improve discharge instructions in the limited English proficiency population. METHODS: We conducted a scoping review of academic and gray literature from the United States using Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols for Scoping Reviews guidelines. We searched PubMed, Embase, and CINAHL for studies to improve discharge communication. RESULTS: Of the 3330 studies, 19 studies met the criteria. Core types of interventions included written interventions alone, educational interventions alone, written and educational interventions, audio and visual interventions, and other types of interventions. Even among the same core types of interventions, there were differences in types of interventions, outcomes examined, and results. DISCUSSION: The majority of included interventions that studied satisfaction as an outcome measure showed improvement, while the other outcomes were not improved or worsened. More rigorous methodology and community involvement are necessary to further analyze discharge interventions for patients with limited English proficiency (LEP).

Acceptance of Flu Vaccine among Parents of Diabetic Children in Jordan.

There is a critical need to understand vaccine decision-making in high-risk groups. This study explored flu vaccine acceptance among Jordanian parents of diabetic children. Employing a cross-sectional approach, 405 parents from multiple healthcare centers across Jordan were recruited through stratified sampling, ensuring a broad representation of socioeconomic backgrounds. A structured questionnaire, distributed both in-person and online, evaluated their knowledge, attitudes, and acceptance of the flu vaccine for their diabetic children. The results indicated that only 6.4% of the study sample reported vaccinating their children against the flu annually, and only 23% are planning to vaccinate their children this year. A multinomial logistic regression analysis revealed notable variability in responses. Specifically, parents with a positive attitude towards the flu vaccine and those with older children had less odds to reject the vaccine (OR = 0.589, 95% CI (0.518-0.670), p < 0.001 and OR = 0.846, 95% CI (0.736-0.974), p = 0.02, respectively). Conversely, prevalent misconceptions regarding vaccine safety and efficacy emerged as significant barriers to acceptance. Our findings advocate for targeted educational programs that directly address and debunk these specific misconceptions. Additionally, strengthened healthcare communication to provide clear, consistent information about the flu vaccine's safety and benefits is vital to help enhance vaccine uptake among this vulnerable population, emphasizing the need to address specific concerns and misinformation directly.

Empowering Patients Through Shared Decision Making in Breast Cancer Consultations.

Receiving a breast cancer diagnosis renders breast cancer consultations pivotal moments in a patient's journey, where decisions about treatment options, including breast reconstruction, can profoundly impact their physical and emotional well-being. Shared decision making (SDM) is a collaborative approach that involves healthcare professionals and patients working together to make decisions that align with the patient's values, preferences, and goals. SDM can hence lead to: 1. informed choices and patient empowerment; 2. enhanced patient satisfaction. One of the key decisions that patients face is whether or not to undergo breast reconstruction and the varying options available. However, while SDM has proven benefits, there still appears to be a lack of knowledge among some healthcare professionals. Hence, suggestions for mitigation include the employment of patient decision aids and clear communication strategies.Level of Evidence V This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266 .

Aphasia disrupts usual care: "I'm not mad, I'm not deaf" - the experiences of individuals with aphasia and family members in hospital.

PURPOSE: Communication difficulties are highly prevalent in the stroke population, with implications for patient experience, safety and outcomes. This study explores the experiences of people with aphasia and family members regarding healthcare communication in acute and subacute stroke settings. METHODS AND MATERIALS: A phenomenological approach was used to understand participants' experiences. Participants took part in a focus group and data were analysed using an inductive thematic approach. RESULTS: For individuals with aphasia (n = 4) and family members (n = 2), five themes were generated: "aphasia makes it hard to communicate," "hospital staff focus on the patient's medical status only," "people with aphasia do not get the help they need to improve," "staff lack the skills to communicate with people with aphasia," and "staff are crucial to improving healthcare communication." CONCLUSIONS: The stroke team has expertise in the medical management of stroke but struggle to communicate with patients with aphasia. Patients' experience of healthcare communication is often one-way and limited to following instructions, with missed opportunities to discuss core topics such as prognosis, rehabilitation, and person-specific needs. Patients and families assert that all members of the stroke healthcare team should be able to adapt communication to accommodate patients.

Person-centred care is not a reality for many patients with aphasia.Many healthcare conversations, including informal assessments and discussing prognosis, are not accessible for people with aphasia.Consequently, for people with aphasia, healthcare in hospital is characterised by confusion and exclusion.Staff are crucial to improving healthcare communication; when appropriate strategies were used, these were not only effective but very meaningful to patients.

Nurses engaging with referral letters and discharge summaries: A qualitative study.

AIMS: To investigate the ways that nurses engage with referral letters and discharge summaries, and the qualities of these documents they find valuable for safe and effective practice. DESIGN: This study comprised a qualitative, case-study design within a constructivist paradigm using convenience sampling. METHODS: Interviews were conducted with nurses to investigate their practices relating to referral letters and discharge summaries. Data collection also involved nurses' examination and evaluation of a diverse range of 10 referral letters and discharge summaries from medical records at two Australian hospitals through focus-group sessions. The data were transcribed and analysed inductively. RESULTS: In all, 67 nurses participated in interviews or focus groups. Nurses indicated they used referral letters and discharge summaries to inform their work when caring for patients at different times throughout their hospitalisation. These documents assisted them with verbal handovers, to enable them to educate patients about their condition and treatment and to provide a high standard of care. The qualities of referral letters and discharge summaries that they most valued were language and communication, an awareness of audience and clinical knowledge, as well as balancing conciseness with comprehensiveness of information. CONCLUSION: Nurses relied on referral letters and discharge summaries to ensure safe and effective patient care. They used these documents to enhance their verbal handovers, contribute to patient care and to educate the patient about their condition and treatment. They identified several qualities of these documents that assisted them in maintaining patient safety including clarity and conciseness of information. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: It is important that referral letters and discharge summaries are written clearly, concisely and comprehensively because nurses use them as key sources of evidence in planning and delivering care, and in communicating with other health professionals in relaying goals of care and implementing treatment plans. IMPACT: Nurses reported that they regularly used referral letters and discharge summaries as valuable sources of evidence throughout their patients' hospitalisation. The qualities of these documents which they most valued were language and communication styles, awareness of audience and clinical knowledge, as well as balancing conciseness with comprehensiveness of information. This research has important impact on the patient experience in relation to encouraging effective referral letter and discharge summary writing. REPORTING METHOD: We have adhered to the relevant EQUATOR guidelines through the SRQR reporting method. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Impact of an Evidence-Based Prioritization System and Electronic Consultation in Early Diagnosis of Colorectal Cancer.

(1) Background: Colorectal cancer (CRC) is one of the most common causes of cancer. Timely diagnosis is critical, with even minor delays impacting prognosis. Primary care providers face obstacles in accessing specialist care. This study investigates the impact of implementing an electronic consultation (eConsult) system combined with a specific prioritization system on CRC diagnosis delay and tumor staging. (2) Methods: The study analyzes 245 CRC patients from November 2019 to February 2022, comparing those referred before and after the eConsult system's implementation during the COVID-19 pandemic. Data on referral reasons, pathways, diagnosis delays, and staging were collected. Multivariate analysis aimed to identify independent risk factors for advanced staging at diagnosis. (3) Results: The eConsult system significantly reduced CRC diagnosis delay from 68 to 26 days. The majority of patients referred via eConsult presented with symptoms. Despite expedited diagnoses, no discernible difference in CRC staging emerged between eConsult and traditional referrals. Notably, patients from screening programs or with a positive fecal immunochemical test (FIT) experienced earlier-stage diagnoses. A positive FIT without symptoms and being a never-smoker emerged as protective factors against advanced-stage CRC. (4) Conclusions: This study highlights eConsult's role in reducing CRC diagnosis delay, improving diagnostic efficiency and prioritizing urgent cases, emphasizing FIT effectiveness.

The application of communication accommodation theory to understand receiver reactions in healthcare speaking up interactions.

Speaking up for patient safety is a well-documented, complex communication interaction, which is challenging both to teach and to implement into practice. In this study we used Communication Accommodation Theory to explore receivers' perceptions and their self-reported behaviors during an actual speaking up interaction in a health context. Intergroup dynamics were evident across interactions. Where seniority of the participants was salient, the within-profession interactions had more influence on the receiver's initial reactions and overall evaluation of the message, compared to the between profession interactions. Most of the seniority salient interactions occurred down the hierarchy, where a more senior professional ingroup member delivered the speaking up message to a more junior receiver. These senior speaker interactions elicited fear and impeded the receiver's voice. We found that nurses/midwives and allied health clinicians reported using different communication behaviors in speaking up interactions. We propose that the term "speaking up" be changed, to emphasize receivers' reactions when they are spoken up to, to help receivers engage in more mutually beneficial communication strategies.

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.

How should uncertainty about upcoming painful procedures be communicated? An experimental study into highly uncertain pain predictions.

OBJECTIVE: Uncertainty is unavoidable in the context of painful medical procedures. It is important to investigate the impact of different ways of communicating uncertainty on upcoming pain. METHODS: In our exploratory study, healthy participants (n = 30) were repeatedly presented with three highly uncertain pain predictions communicated by a hypothetical doctor. A direct statement of high uncertainty ("I don't know") was compared to more indirect predictions (social prediction: "It varies widely among people"; range prediction: "… not painful at all to very highly painful"), followed by individually calibrated electrical stimuli of non-, moderately, or very highly painful intensity. RESULTS: The direct expression of uncertainty led to the most intense pain sensation (for moderately painful stimuli only), lowest and most certain pain expectations, lowest trust in the hypothetical doctor, and lowest feeling of being well-informed, especially as compared to the social prediction. No differential effects on anxiety were observed. CONCLUSIONS: Expressing high uncertainty indirectly, with reference to the common experiences of others, may be beneficial for optimizing pain experiences and enhancing patients' trust in a medical professional. PRACTICE IMPLICATIONS: Our findings inform on how high uncertainty about upcoming pain may impact patient and health outcomes, pointing to some advantages of indirect communication.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.