Search

This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face‐to‐face delivery. A lack of funding, a culture of “learning on the job”, and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required. [ABSTRACT FROM AUTHOR]

This study examined the data generated as part of a seven-session webinar series that focused on genetics care provision in the medically underserved, rural Appalachian region and examined how these services have adapted to challenging practice environments. Barriers and facilitators to care in our region were considered. Data included a baseline survey of registrants, transcripts of sessions, and feedback about sessions. We analyzed data with a sequential and concurrent mixed methods approach. Registrants (n = 137) were disproportionately healthcare providers with genetic services expertise (37.2%). Approximately half (43.8%) of registrants were from KY, WV, and TN in the central Appalachian region. Our baseline survey found that the most noted barriers were the cost of services, lack of providers, and access to care. The most common facilitator was telehealth. Analysis of transcripts identified barriers that were consistent with those noted in the baseline survey, but additional support and network opportunities were discussed to allow for learning across services. Numerous barriers to service delivery were noted; however, despite challenges, participants identified opportunities and resources in the community. These insights will inform a research agenda aimed at advancing genetics services in rural Appalachia, addressing challenges, and leveraging assets for improved healthcare access and outcomes., (© 2025 Wiley Periodicals LLC.)

Objective: This study aimed to develop and assess the feasibility of an online communication skills training intervention to increase cultural competence amongst oncology nurses working with individuals from minority backgrounds., Methods: The intervention provided examples of communication strategies using vignette-based, professionally produced videos, developed through an iterative process with input from a large multidisciplinary team. Fifty-three oncology nurses completed all three questionnaires at baseline, within 2 weeks and then 3 months after accessing the programme., Results: The online intervention was well received by the majority of participants, and was endorsed as clearly presented, informative, relevant and useful by more than 90% of participants. Eighty-seven percent of participants reported increased confidence in communicating with patients via an interpreter, and 93% agreed that skills they gained would be useful in providing better patient care. Participants reported significant improvements in practice while interacting with people with limited English proficiency 2 weeks and 3 months after accessing the website (X 2  = 13.66, P < 0.001)., Conclusion: This online communication training programme can now be tested for its utility in improving patient care for oncology nurses working with patients from minority backgrounds.

The demand for direct-to-patient (DTP) telegenetics (genetics services delivered via videoconferencing) in genetic counseling practice has rapidly increased, particularly since the COVID-19 pandemic. Recent telegenetics literature is mostly quantitative and not in the Australian context. A qualitative interview study was conducted to address this gap. This research investigated the experiences of patients and genetic counselors (GCs), enrolled in a randomized controlled trial, using telegenetics and telephone for cancer genetic counseling appointments. Twenty-eight semi-structured interviews with patients (n = 22) and GCs (n = 6) were conducted following patient randomization to either a telephone or telegenetics genetic counseling appointment. The interviews explored participant's experiences of telegenetics and compared DTP telegenetics with telephone and in-person delivery. Codebook thematic analysis was used to develop topic summaries from the data. Patient and GC participants noted positive experiences of telegenetics; with key benefits reported as reduced travel time, time and cost saving, ease, convenience, efficiency, and comfortability. Technical issues and privacy concerns were highlighted as potential disadvantages of telegenetics. All but one patient felt sufficiently emotionally supported while using telegenetics. Telegenetics has both benefits and limitations; however, generally, this cohort found telegenetics to be a suitable and acceptable mode of delivery for genetic counseling with many advantages over in-person or telephone appointments. Further studies should be conducted to provide evidence for the long-term implementation of telegenetics, regardless of any future COVID-19 pandemic lockdown restrictions., (© 2024 The Author(s). Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.)

Purpose: Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally diverse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses' and oncologists' individual experiences and challenges in communicating with patients from minority backgrounds., Method: Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed individually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically., Results: The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques., Conclusions: Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Telehealth is increasingly used for outreach service in cancer genetic counseling; however what occurs during the consultation and the roles practitioners adopt is largely unknown. Fifteen practitioners participated in semistructured interviews that explored their roles within telehealth, compared to face-to-face consultations, and the relationship between practitioners during telehealth. As they were not physically present with the patient, most participants felt that telehealth altered the genetic clinician's role to one of a 'visiting specialist'. Genetic counselors described undertaking multiple roles during the telehealth process. Two models of interaction were observed. The medical model reduced the interaction to a dyadic consultation by having the genetic counselor off-screen and included minimal clinician meetings and supervision. The triadic co-facilitation model incorporated a high level of information exchange, counselor autonomy and included the counselor onscreen. The co-facilitation model offers a useful framework for telehealth genetic counselling, offering complementary roles between practitioners and efficient service delivery. [ABSTRACT FROM AUTHOR]

Introduction: Genomics is a lifespan competency that is important for improving health outcomes for individuals, families, and communities. Nurses play a key role in genomic healthcare and realizing the potential of the genomic era. Methods: We aimed to chart the current state of genomics in nursing by conducting a systematic scoping review of the literature in four databases (2012–2022). We categorized included articles using the Cochrane Collaboration outcome domains/sub-domains and identify key topical areas. Results: Of 8532 retrieved articles, we identified 67 articles on 'consumer-oriented outcomes' (patient and family) for analysis. Identified articles primarily centered on themes of genetic testing and screening. Most studies reported non-interventional studies 39/67 (58%) and more than half were from the U.S.A. 34/67 (51%). Six of nine subdomains were reported on. The "patient involvement in care" subdomain was the most commonly reported subdomain (17/67, 25%) while "treatment outcomes" had the fewest reports (5/67, 8%). Overall, consumers (i.e., patients and families) had high satisfaction with nurse-led interventions. Discussion: Synthesizing findings revealed key knowledge gaps and unmet patient informational needs around genetic testing and decision support. There are opportunities for interprofessional collaboration between nursing and genetic counseling to meet the mounting demand for genomic healthcare and develop more person-centered approaches to genetic counseling and decisional support. Findings support the need for interventional studies and enhanced focus on implementation for nurses to improve consumer-oriented outcomes. [ABSTRACT FROM AUTHOR]

Objectives: To explore adolescents' perceptions of melanoma risk, sun protection intervention preferences and perceived barriers to sun protection recommendations., Methods: Semi-structured focus groups were held in school classes, stratified by location (coastal, inland) and sector (public, private); discussions were transcribed verbatim and data were analysed using NVivo8 software., Results: 100 students (mean age=14.4 years, SD=0.5; range=14-16 years) from six high schools participated. Students demonstrated a high level of sun protection knowledge and understanding of sun exposure as a primary risk factor for the development of melanoma. There was, however, an under-estimation of melanoma prevalence and mortality rates among youth, and poor understanding of the increased risk associated with sunburn during childhood/adolescence. Adolescents' preferences for intervention focused on first-person accounts of receiving a melanoma diagnosis, communicated by young melanoma survivors. Interventions modelled on youth marketing campaigns or utilising social media were rated poorly., Conclusions: Despite young Australians' adequate knowledge of melanoma and related health recommendations, poor adherence continues to place young people at risk. Study findings suggest that social media interventions developed to influence behaviour change, are not necessarily preferred by adolescents., (© 2014 Public Health Association of Australia.)

Purpose: Health literacy plays a key role in a patient's ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists' perspectives on how they support people with lower health literacy who are undergoing radiotherapy., Methods: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia., Results: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient's health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient's health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations., Conclusion: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population.

Alzheimer disease (AD) is a genetically heterogenous disorder; in rare cases autosomal dominantly inherited mutations typically cause early-onset familial AD (EOAD), whereas the risk for late-onset AD (LOAD) is generally modulated by genetic variants with relatively low penetrance but high prevalence, with variants in apolipoprotein E (APOE) being a firmly established risk factor. This article presents an overview of the current literature on the psychological and behavioral impact of genetic testing for AD. The few studies available for presymptomatic testing for EOAD showed that only a very small proportion of individuals had poor psychological outcomes as a result. Initial interest in testing for EOAD decreases significantly after identification of a specific mutation in a kindred, suggesting that interest and potential for knowledge may not translate into actual testing uptake. The majority of individuals from both the general population and those with a family history of AD had positive attitudes towards, and were interested in, susceptibility testing for APOE. Motivations for genetic testing included to provide information for future planning and to learn about one's own and one's children's risks of developing AD. Although susceptibility testing for APOE genotype is not currently recommended due to the lack of clinical utility, this review demonstrates that there is interest in testing and no obvious adverse psychological effects to those who have been tested.

Purpose/objectives: To identify young women's information preferences regarding treatment-focused genetic testing (TFGT) and to develop and evaluate a novel educational resource., Research Approach: Qualitative interview study and pilot testing of a novel resource., Setting: Two familial cancer services and one outpatient oncology clinic in Sydney and Melbourne, Australia., Participants: 26 women with breast cancer aged 50 years and younger who either previously had TFGT (n = 14) or had a diagnosis of breast cancer within the previous 6-12 months., Methodologic Approach: Participants were asked about their views of TFGT in semistructured interviews. A brief pamphlet on TFGT then was developed and pilot tested with 17 of the 26 women., Main Research Variables: Women's attitudes and preferences with regard to timing, mode of delivery, and amount and format of information regarding TFGT were explored., Findings: Most women wanted to be informed about TFGT at or around the time of their cancer diagnosis via a face-to-face consultation. No clear preference existed for which type of healthcare professional should provide information on TFGT. Brief written information about TFGT was viewed as important supporting material. The educational resource developed was well received., Conclusions: The potential for more widespread TFGT in the future indicates a need for patient educational materials that enable women to make informed choices about TFGT. This pilot study has provided timely initial evidence on the efficacy of a brief written resource in preparing women for decision making about TFGT., Interpretation: The resource developed in this study will assist oncology nurses to make important genetic risk information available to women newly diagnosed with breast cancer at a stressful time.

Objective: Videoconferencing for clinical genetics services, or telegenetics, is becoming an increasingly utilized method of delivering genetic counseling to rural areas; however, there has been little qualitative exploration of the practitioner's experience, particularly for hereditary breast/ovarian cancer counseling., Methods: Semistructured interviews were conducted with genetic practitioners (n=15) delivering telegenetics services in New South Wales, Australia. Interviews explored experiences, perceived aims of the service, satisfaction, and the advantages and disadvantages of the technology. Interviews were audiotaped, transcribed, and thematically analyzed., Results: All practitioners were highly satisfied with telegenetics. They perceived the advantages of videoconferencing as primarily increased efficiency and convenience for genetic clinicians, minimized travel for the patient, reduced costs, and increased access to rural areas. Disadvantages included the inhibition of rapport building between genetic clinician and patient and the difficulty in detecting nonverbal cues. Telegenetics was seen as a structured interaction that allowed less time for emotional exploration than a traditional face-to-face consultation. Technical disadvantages involved visual resolution, connection speed, and interruptions to voice transmission., Conclusion: Practitioners were satisfied with telegenetics and perceived the advantages as outweighing the disadvantages.

We propose a theoretical framework that identifies (a) the different categories of stakeholders and (b) the normative values that drive their attitudes toward direct-to-consumer genetic testing, with an emphasis on the reproductive health contexts. We conducted a literature search using varied combinations of search terms, including direct-to-consumer genetic testing, decision-making, reproductive health, and policy. Using a grounded theory approach to existing literature and in combination with a narrative review, we present a systematic framework of five categories of stakeholders (i.e., genome-driven stakeholders, industry-driven stakeholders, history-driven stakeholders, value-driven stakeholders, and social justice-driven stakeholders) that shape the public's discourse. Moving beyond the dialectical ethics that have governed the public discourse, we also identify the normative values and interests that motivate different stakeholders' attitudes and decision-making through theoretical sampling under the grounded theory. We investigate the competing and conflicting values within the same category of stakeholders. For example, despite being industry-driven stakeholders, medical professionals' attitudes are driven by concerns about standards of care; in contrast, health insurance companies' concerns are centered on profit. We further explore the tensions between these stakeholders that impact their strategic alliances and pose challenges to the practices of direct-to-consumer genetic testing. Finally, we examine how these stakeholders and their corresponding values may shape future development and policies of direct-to-consumer genetic testing in the context of reproductive health. [ABSTRACT FROM AUTHOR]

Breast cancer impairs physical and psychological well-being, even some years after treatments. Oncological treatments can strongly affect the body due to scars and breast(s) removal, for example, increasing symptoms of anxiety and depression. Psychological studies are effective in improving breast cancer survivors' emotions and behaviors through several approaches to interventions. Over years, the Mindfulness-Based Stress Reduction (MBSR) has been evaluated as an effective intervention to promote well-being in breast cancer survivors. The present study protocol aims to evaluate the effectiveness of a MBSR intervention in regulating interoceptive sensations, as the ability to be aware of inner sensations. Second, it seeks to identify changes in interoceptive feelings, mood, and body perception following the intervention. These changes will be evaluated across three data collection times to assess differences about emotions and body perception over time, focusing on their relevance for breast cancer survivors' well-being. Finally, the present study protocol aims to detect improvements in anxiety, depression, and body awareness, considering the potential positive impact of the MBSR approach on emotional well-being. Direction for future psychological intervention are given. [ABSTRACT FROM AUTHOR]

Introduction: Direct-to-patient telegenetics, which uses video conferencing to connect health professionals directly to patients' devices, has been widely adopted during the pandemic. However, limited evidence currently supports its use in cancer genetic counselling. Methods: Before the pandemic, we conducted a two-arm partially randomised patient-preference pilot trial to evaluate direct-to-patient telegenetics for patients and genetic counsellors. Patients were randomised to a standard care (telephone/in-person) or direct-to-patient telegenetics appointment. Patients completed questionnaires before, during and after appointments measuring: psychological distress, perceived genetic counsellor empathy, telegenetics satisfaction and technical challenges. Genetic counsellor-reported outcomes –measured using purpose-designed questionnaires– included telegenetics satisfaction, therapeutic alliance and time for assessment. Open-ended patient and genetic counsellor questionnaire responses were synthesised using content analysis. Results: Fifty-six patients and seven genetic counsellors participated. Thirteen patients switched appointment type. No significant differences in distress (P = 0.84) were identified between direct-to-patient telegenetics and standard care. Perceived genetic counsellor empathy was high for all appointment types. There was no evidence of differences in reported maximum empathy scores between direct-to-patient telegenetics and standard care [telephone (P = 0.57); in-person (P = 0.44)]. Patients reported high direct-to-patient telegenetics satisfaction despite technical challenges in most appointments (65%). Genetic counsellors were satisfied with direct-to-patient telegenetics and perceived high therapeutic alliance irrespective of appointment type. No significant differences in genetic counsellor time were identified between direct-to-patient telegenetics and standard care [telephone (P > 0.90); in-person (P = 0.35)]. Discussion: Our results suggest that direct-to-patient telegenetics is a satisfactory service delivery model that does not appear to compromise patient–genetic counsellor relationships or increase patient distress. These findings support direct-to-patient telegenetics use in cancer genetic counselling, although larger trials are needed. [ABSTRACT FROM AUTHOR]

Empathy is a significant element in genetic counseling for building relationships with the clients and addressing their issues. However, there are few reports on the experiences of the clients about their perceived empathy in genetic counseling. Cancer genetic counseling needs have been rapidly evolving with the expansion of clinical comprehensive genomic profiling and genetic diagnosis approaches for hereditary cancers. Therefore, this study aimed to reveal empathy perceptions of the clients during cancer genetic counseling. Semi-structured interviews were conducted, and a grounded theory approach was used for data analysis. A total of 13 participants were recruited from organizations for patients with cancer, among whom 11 were patients with hereditary breast and ovarian cancer (HBOC) and two were relatives of patients with HBOC. Data analysis was organized into five categories related to experiences with empathy: (i) prior context to perceive empathy (ii) understanding and consideration, (iii) bedside manner, and (iv) impacted area of perceived empathy; and (v) no empathy. This study highlights the fact that empathy experiences of the clients differ depending on the situation and state of mind. Taken together, this study provides new insights on how to deliver empathic care., (© 2024 National Society of Genetic Counselors.)

Alzheimer's disease (AD) is a debilitating neurodegenerative illness that has become a growing concern for older adults. As such, apolipoprotein E (APOE) genetic testing has become more commonly used to identify individuals' susceptibility to AD. An underrepresented population in AD research, Latinos will be disproportionately affected by AD in the coming decades. To better aid efforts in education and genetic risk counseling for Latino populations, we must first understand the anticipated psychological and behavioral consequences of APOE genetic risk counseling. We conducted semi-structured interviews with 216 Latinos between the ages of 40 and 64 (average age = 53 years) in northern Manhattan to ascertain their hypothetical reactions to learning that they had a higher risk of developing AD compared to other Latinos within their community. Responses were categorized as emotional, practical, and mixed responses. Among our sample, women were more likely to anticipate an emotional response to hearing that they had a higher risk of AD, and participants above the age of 60 were more likely to anticipate disclosing their risk information to immediate family members. Findings support the tailoring of genetic risk counseling sessions across different ethnic groups, genders and age groups. Future work may include the development of psychological and practical support tools for Latinos seeking APOE genetic testing and counseling., Competing Interests: Declarations. Ethics Approval and Consent to Participate: This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Institutional Review Board at Columbia University Irving Medical Center [Protocol IRB-AAAR8269]. Informed consent was obtained from all study participants. Competing Interests: The authors declare that they have no financial conflict of interest., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Aim: To critically appraise and synthesise qualitative evidence about patients' experiences of healthcare professionals' competence in digital counselling in healthcare settings., Design: A qualitative systematic review., Methods: The review followed the Joanna Briggs Institute methodology for systematic reviews of qualitative evidence. The review included studies that focused on patient experiences of healthcare professionals' competence in digital counselling and were published in English, Finnish or Swedish, with no time limits. Study selection, quality appraisal and data extraction were performed by two independent reviewers. Findings from the studies included were pooled using the meta-aggregation method., Data Sources: Eight databases (Web of Science, CINAHL, Scopus, PsycArticles, Medic, Medline (Ovid), EBSCO Open Dissertations and MedNar) were systematically searched on 25 September 2023., Results: Sixteen studies (published between 2009 and 2023) were included in the review, from which 42 findings were extracted and organised into eight categories based on their meaning. Three synthesised findings were identified: (1) Competence to provide efficient digital counselling, (2) competence to support patient self-management during digital counselling and (3) competence in establishing a reciprocal relationship in digital counselling., Conclusion: The evidence from the review can be used to support healthcare professionals' competence in digital counselling. It was found that competence in digital counselling includes the competence to provide digital counselling that is efficient and enables counselling to be implemented in health care, supports patients to self-manage and establishes a reciprocal counselling relationship in a digital environment., Implications for the Profession and Patient Care: Recognising healthcare professionals' competence in digital counselling can enhance their motivation and professional growth, potentially improving the quality of services and patient outcomes. These findings can inform the development of healthcare education, fostering the training of more competent healthcare professionals and digital counsellors., Reporting Method: The review was undertaken and reported using the PRISMA guidelines., Protocol Registration: PROSPERO CRD42024499509. No Patient or Public Contribution., (© 2024 The Author(s). Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Foreign domestic workers have reported various health problems after moving to Hong Kong, which suggests the need for them to seek medical attention. Yet, much uncertainty exists about their perception of healthcare experiences as patients, particularly how they perceive their communication with ethnic-discordant healthcare providers. Drawing on foreign domestic workers' perspectives, we extracted non-interpersonal factors from Street's ecological model and its extension proposed by Head and Bute (2018) and examined how foreign domestic workers perceived these contextual factors affected their communication with healthcare providers. Thematic analysis was conducted on thirty Filipina and Indonesian domestic workers' narratives. Our findings confirmed that the context of digital media (characterized by Internet use and the adoption of a telemedicine approach) and the context of social ties (characterized by employers' involvement and everyday communication with friends and peers) were both potential contextual factors that domestic workers reported accounted for their participation in medical encounters. Theoretical and practical implications are discussed. Future research building on these findings is proposed. [ABSTRACT FROM AUTHOR]

Introduction:The 2019 Coronavirus Disease (COVID-19) pandemic necessitated a mass transition in genetics clinics nationwide from in-person care to virtual care through telehealth. Before the COVID-19 pandemic, there was limited research on the use of telehealth in genetics specialties. Therefore, the COVID-19 pandemic presented a unique opportunity to study this emerging mode of care delivery in the setting of genetics clinics. This study described the scope of telehealth use in genetics clinics nationally and determined how COVID-19 influenced patients' decisions regarding their genetic care. Methods:Two anonymous surveys for patients and providers were developed. The patient survey was offered online to all genetics patients seen through telehealth at a Manhattan-based practice between March and December 2020. The provider survey was distributed through several listservs to genetics providers nationwide. Results:Patients (n = 242) and providers (n = 150) responded. Telehealth was used in all specialty genetics clinics for both initial and follow-up visits. Telehealth was both effective and satisfactory to patients for both visit types and across specialties; however, Asian and Hispanic/Latino patients had significantly lower mean satisfaction scores compared with White patients (p = 0.03 and 0.04, respectively). Patients appreciated telehealth for its convenience and to avoid COVID-19 exposure. Providers across specialties and provider types preferred telehealth for follow-up rather than initial visits. Several clinic initiatives related to telehealth were identified. Discussion:Telehealth was generally well received by both patients and providers, and is expected to become permanent option in genetics clinics. Further studies are needed to identify barriers to accessing telehealth. [ABSTRACT FROM AUTHOR]

Telehealth is a growing field, its pertinence magnified by COVID-19 causing the accelerated digitalization of the world. Given the significant global demand to provide telehealth services, it is important to explore patient receptiveness toward this alternative service model, particularly from regions where it has yet to be implemented. We conducted a cross-sectional study to understand the views and willingness of patients toward the use of telehealth for cancer genetic counseling. A survey was completed by 160 patients of the National Cancer Centre Singapore, and descriptive statistics were used to analyze the data. The study found that 95.6% (n = 153/160) of participants did not have prior telehealth experience. Most participants were willing or neutral toward having genetic counseling by phone (n = 114/160, 71.3%) and video (n = 106/160, 66.3%). However, majority prefer in-person appointments for first (n = 127/160, 79.4%) and follow-up (n = 97/160, 60.6%) visits over telehealth. Majority agreed that a phone/video consultation would meet most of their needs but voiced concerns regarding privacy and sharing of information (n = 79/160, 49.4% for phone; n = 74/160, 46.3% for video) and whether their emotional needs could be met (n = 61/160, 38.1%). Participants' age, employment status, income, mode of transportation to the appointment, and whether special arrangements were made to attend the in-person appointment were associated with receptivity to telehealth genetic counseling (p ≤ .05 for all). This study adds diversity to existing literature and demonstrates that patients from Asia are generally willing and accepting of the use of telehealth in a cancer genetics service. This will help meet increasing global demand of telehealth consultations in the post-pandemic new norm. Furthermore, it will also provide services for underserved populations and patients requiring urgent testing in a timely manner. Further studies are needed to explore the cost-effectiveness and fair billing methods, as well as willingness and acceptability of telehealth genetic counseling in post-COVID times., (© 2021 National Society of Genetic Counselors.)

As indications for hereditary cancer genetic testing (GT) for patients with breast cancer (BC) expand, breast surgery teams offer GT to newly diagnosed patients to inform surgical plans. There is, however, limited data on the experiences of patients undergoing cancer GT by non-genetic providers. This study used in-depth interviews with 21 women recently diagnosed with BC at a large academic health system to capture their experiences. Post-positivist codebook thematic analysis was used to identify major themes from the interviews. Participants reported an overall positive experience of this GT process, stating that they prefer GT at an existing appointment shortly after their diagnosis, even though they described the conversation as brief. Many participants indicated thinking about or desiring GT before the offer was made. Interestingly, most participants did not see surgical decision-making as the main reason for GT and were instead motivated by concern for relatives and to have complete information. Interview data indicated areas for improvement in patient-provider communication, and most participants agreed that additional reference information on GT in the form of written or video materials would be helpful. Offering GT at an initial breast surgery appointment is acceptable and desired by patients with a new BC diagnosis and should be considered as a way to increase access to GT for these patients. However, additional information for patients is needed to close gaps in communication and provide a trustworthy reference following a busy medical appointment., (© 2024 National Society of Genetic Counselors.)

This randomized controlled trial compares outcomes of telephone versus in-person genetic counseling service models in underserved, bilingual patient populations referred for cancer genetic counseling. Between 2022 and 2023, a two-arm (telephone vs. in-person genetic counseling) prospective, randomized controlled study with 201 participants was conducted at two county hospital cancer genetics clinics. Primary outcomes included comparison of pre- and post-genetic counseling genetics knowledge (Multi-dimensional Model of Informed Choice, MMIC), genetic counseling visit satisfaction (Genetic Counseling Satisfaction Scale, GCSS), and genetic counseling visit completion rates. Secondary outcomes included comparison of genetic testing attitudes and informed choice (MMIC), genetic counseling-specific empowerment (Genomic Outcomes Scale, GOS), and genetic testing completion and cancellation/failure rates, using linear regression models (significance ≤0.05). There were no statistically significant differences between arms in pre/post-genetic counseling MMIC knowledge and attitude, GOS or GCSS scores or genetic counseling completion. While more participants in the telephone versus in-person arm made an informed choice about testing (52.5% v. 39.0%, p = 0.0552), test completion was lower (74% v. 100%, p < 0.05) for this group. Genetic counseling completion rates and MMIC knowledge and attitude, GOS, and GCSS scores suggest telephone genetic counseling is comparable to in-person genetic counseling for underserved populations. Higher informed choice scores and significantly lower testing completion rates for telephone visits require further study., (© 2024 The Author(s). Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.)

Telegenetics involves the use of technology (generally video conferencing) to remotely provide genetic services. A telegenetics platform is critical for those with limitations or vulnerabilities compromising their ability to attend clinic in-person, including individuals in rural areas. As the demand for remote genetics services increases, and amidst the COVID-19 pandemic with social distancing practices in place, we conducted a literature review to examine the benefits and limitations of telegenetics and explore the views of patients and health professionals utilizing telegenetics. Searches of the PubMed database identified 21 relevant primary studies for inclusion. The majority of studies found acceptability of telegenetics to be high among patients and health professionals and that telegenetics provided access to genetics services for underserved communities. The main benefits cited include cost-effectiveness and reduction in travel time for genetics services providing outreach clinics and patients who would otherwise travel long distances to access genetics. Patients appreciated the convenience of telegenetics including the reduced wait times, although a minority of patients reported their psychosocial needs were not adequately met. Eight studies compared outcomes between telegenetics and in-person services; findings suggested when comparing telegenetics patients to their in-person counterparts, telegenetics patients had a similar level of knowledge and understanding of genetics and similar psychological outcomes. Some studies reported challenges related to establishing rapport and reading and responding to verbal cues via telegenetics, while technical issues were not generally found to be a major limitation. Some service adaptations, for example, counseling strategies, may be required to successfully deliver telegenetics. Further research may be necessary to gather and examine data on how telegenetics outcomes compare to that of in-person genetic counseling and adapt services accordingly., (© 2021 National Society of Genetic Counselors.)

Background: Palliative care practitioners are increasingly caring for patients and families from diverse cultural backgrounds. There is growing awareness of the influence of culture on many aspects of care in the palliative phase of an illness. However, disparities have been noted in the provision of palliative care to patients from culturally diverse backgrounds and challenges have been reported in meeting their needs and those of their families. Method: A qualitative systematic review of research papers identified through searching four databases. Papers were screened against inclusion criteria within the timeframe of January 2012 to March 2022. Data was extraction from all included studies and methodological quality assessed utilising the Critical Appraisal Skills Programme Tool. Thematic analysis followed Braun and Clarke's framework and the review is reported in line with PRISMA guidelines. Findings: The search yielded 1954 results of which 26 were included for appraisal and review. Four themes were identified: communication and connection, the role of the family in death and dying, the role of education in addressing uncertainty, and institutional and societal factors. The findings highlighted challenges of communication and a fear of acting in a culturally insensitive way, the pivotal role of the family, the need for an individualised approach to care, the universality of needs when approaching end of life and the need for education of practitioners. Conclusion: These findings suggest that healthcare practitioners draw on their existing skills to adapt their practice to meet the needs of patients from culturally diverse backgrounds. However, results also indicate a need for further education and identification of educational approaches best suited to supporting healthcare professionals in practice. [ABSTRACT FROM AUTHOR]

In the 20 years since the initial sequencing of the human genome, genomics has become increasingly relevant to nursing. We sought to chart the current state of genomics in nursing by conducting a systematic scoping review of the literature in four databases (2012–2022). The included articles were categorized according to the Cochrane Collaboration outcome domains/sub-domains, and thematic analysis was employed to identify key topical areas to summarize the state of the science. Of 8532 retrieved articles, we identified 232 eligible articles. The articles primarily reported descriptive studies from the United States and other high-income countries (191/232, 82%). More than half (126/232, 54.3%) aligned with the "healthcare provider oriented outcomes" outcome domain. Three times as many articles related to the "knowledge and understanding" sub-domain compared to the "consultation process" subdomain (96 vs. 30). Five key areas of focus were identified, including "nursing practice" (50/126, 40%), "genetic counseling and screening" (29/126, 23%), "specialist nursing" (21/126, 17%), "nurse preparatory education" (17/126, 13%), and "pharmacogenomics" (9/126, 7%). Only 42/126 (33%) articles reported interventional studies. To further integrate genomics into nursing, study findings indicate there is a need to move beyond descriptive work on knowledge and understanding to focus on interventional studies and implementation of genomics into nursing practice. [ABSTRACT FROM AUTHOR]

Copyright of China Oncology is the property of Editorial Board of China Oncology and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Pre-symptomatic screening methods for detecting a higher risk of Alzheimer's disease (AD) are gaining popularity; thus, more people are seeking these tests. However, to date, not much is known about the attitudes toward pre-symptomatic AD screening. Objective: The goal of this study is to examine the psychometric properties of a tool for assessing the attitudes, barriers, and motivations to pre-symptomatic AD screening. Methods: This is a cross-sectional study performed on 208 Greek participants (189 students and 19 caregivers) provided with an online questionnaire. Psychometric properties were assessed through the examination of its construct validity (principal component analysis) and internal consistency. Results: Exploratory factor analysis revealed the presence of four factors. The first factor is labeled as "Perceived harms of testing" (10 items), the second "Acceptance of testing" (5 items), the third "Perceived benefits of testing" (6 items), and the fourth factor "Need for knowledge" (4 items). The reliability (internal consistency) of each factor separately was acceptable to good (0.70–0.87) while the internal consistency of the overall questionnaire (25 items) was good (Cronbach's α=0.82). Conclusion: PRE-ADS is a valid questionnaire that might help in the research of peoples' attitudes related to the pros and cons of pre-symptomatic screening for AD, and the development of effective counseling programs and prevention strategies. However, future research is required in the target population. [ABSTRACT FROM AUTHOR]