National Research Study Research Articles

POWER OF ATTORNEY FACTORS AND CONDITIONS INFLUENCING ELDER FAMILY FINANCIAL EXPLOITATION

Abstract Approximately 16% of older adults worldwide experience some form of elder abuse including elder family financial exploitation (EFFE), the unlawful transfer and theft of funds and property perpetrated by a family member. Power of Attorney (POA) arrangements, when constructed and executed properly, can be critical tools for protecting against such exploitation. This national research study examined family reports of EFFE using the Bronfenbrenner Ecological Framework to classify risk factors within the POA arrangement. Interviews were carried out with 31 family members within 24 families that had experienced EFFE. Using constructivist grounded theory analysis methods, the following themes related to risk factors were noted across EFFE stories about professionals involved in the EFFE situations: 1) Conflict of interest between attorneys and POA agents, 2) A perceived lack of competence of consulting attorneys; and 3) A lack of transparency around POA arrangements. Policy and education implications include the need to create legal requirements for transparency reporting and/or registration for POAs, strengthening legal ethics and EFFE training, and providing public education to families about the POA process and how to locate appropriately trained legal professionals.

Insights on Engaging Men and Boys in Creating a More Gender Equal Future in Canada.

This article presents findings from a national qualitative research study of 33 diverse and profeminist leaders who identify as men and are engaged in gender equality work with men and boys across Canada. Key findings include the need to meet men where they are at, moving away from the ineffective "all men are perpetrators" frame, and to evolve to new and more relatable narratives and approaches that get men committed to this work for their own liberation. Taking an intersectional approach and working in partnership with feminist and intersectional organizations are essential to advancing gender equality in the Canadian context.

Using a chat-based informed consent tool in large-scale genomic research.

We implemented a chatbot consent tool to shift the time burden from study staff in support of a national genomics research study. We created an Institutional Review Board-approved script for automated chat-based consent. We compared data from prospective participants who used the tool or had traditional consent conversations with study staff. Chat-based consent, completed on a user's schedule, was shorter than the traditional conversation. This did not lead to a significant change in affirmative consents. Within affirmative consents and declines, more prospective participants completed the chat-based process. A quiz to assess chat-based consent user understanding had a high pass rate with no reported negative experiences. Our report shows that a structured script can convey important information while realizing the benefits of automation and burden shifting. Analysis suggests that it may be advantageous to use chatbots to scale this rate-limiting step in large research projects.

Codesigning a user-centred digital psychoeducational tool for youth mental well-being with families in Canada: study protocol for a sequential exploratory mixed methods study

IntroductionOn 11 March 2020, WHO declared the novel coronavirus (COVID-19) disease a global pandemic. Governments globally implemented physical distancing measures and closure of public institutions that resulted in varying implications...

Moving forward the Italian nursing education into the post-pandemic era: findings from a national qualitative research study

BackgroundDuring the CoronaVIrus-19 (COVID-19) pandemic, nursing education has been dramatically transformed and shaped according to the restrictions imposed by national rules. Restoring educational activities as delivered in the pre-pandemic era without making a critical evaluation of the transformations implemented, may sacrifice the extraordinary learning opportunity that this event has offered. The aim of this study was to identify a set of recommendations that can guide the Italian nursing education to move forward in the post-pandemic era.MethodsA qualitative descriptive design was undertaken in 2022–2023 and reported here according to the COnsolidated criteria for REporting Qualitative research guidelines. A network was established of nine Italian universities offering a bachelor’s degree in nursing for a total of 6135 students. A purposeful sample of 37 Faculty Members, 28 Clinical Nurse Educators and 65 Students/new graduates were involved. A data collection was conducted with a form including open-ended questions concerning which transformations in nursing education had been implemented during the pandemic, which of these should be maintained and valued, and what recommendations should address the transition of nursing education in the post-pandemic era.ResultsNine main recommendations embodying 18 specific recommendations have emerged, all transversally influenced by the role of the digital transformation, as a complementary and strengthening strategy for face-to-face teaching. The findings also suggest the need to rethink clinical rotations and their supervision models, to refocus the clinical learning aims, to pay attention towards the student community and its social needs, and to define a pandemic educational plan to be ready for unexpected, but possible, future events.ConclusionsA multidimensional set of recommendations emerged, shaping a strategic map of action, where the main message is the need to rethink the whole nursing education, where digitalization is embodied. Preparing and moving nursing education forward by following the emerged recommendations may promote common standards of education and create the basis on for how to deal with future pandemic/catastrophic events by making ready and prepared the educational systems.

Participation in a national diagnostic research study: assessing the patient experience

IntroductionThe Undiagnosed Diseases Network (UDN), a clinical research study funded by the National Institutes of Health, aims to provide answers for patients with undiagnosed conditions and generate knowledge about underlying disease mechanisms. UDN evaluations involve collaboration between clinicians and researchers and go beyond what is possible in clinical settings. While medical and research outcomes of UDN evaluations have been explored, this is the first formal assessment of the patient and caregiver experience.MethodsWe invited UDN participants and caregivers to participate in focus groups via email, newsletter, and a private participant Facebook group. We developed focus group questions based on research team expertise, literature focused on patients with rare and undiagnosed conditions, and UDN participant and family member feedback. In March 2021, we conducted, recorded, and transcribed four 60-min focus groups via Zoom. Transcripts were evaluated using a thematic analysis approach.ResultsThe adult undiagnosed focus group described the UDN evaluation as validating and an avenue for access to medical providers. They also noted that the experience impacted professional choices and helped them rely on others for support. The adult diagnosed focus group described the healthcare system as not set up for rare disease. In the pediatric undiagnosed focus group, caregivers discussed a continued desire for information and gratitude for the UDN evaluation. They also described an ability to rule out information and coming to terms with not having answers. The pediatric diagnosed focus group discussed how the experience helped them focus on management and improved communication. Across focus groups, adults (undiagnosed/diagnosed) noted the comprehensiveness of the evaluation. Undiagnosed focus groups (adult/pediatric) discussed a desire for ongoing communication and care with the UDN. Diagnosed focus groups (adult/pediatric) highlighted the importance of the diagnosis they received in the UDN. The majority of the focus groups noted a positive future orientation after participation.ConclusionOur findings are consistent with prior literature focused on the patient experience of rare and undiagnosed conditions and highlight benefits from comprehensive evaluations, regardless of whether a diagnosis is obtained. Focus group themes also suggest areas for improvement and future research related to the diagnostic odyssey.

Supporting healthcare professionals to offer reproductive genetic carrier screening: a behaviour change theory approach.

As reproductive genetic carrier screening (RGCS) becomes more widely accessible, ensuring uptake by primary healthcare professionals (HCPs) is essential to equitable service provision. This study aimed to identify and prioritise implementation strategies to reduce barriers and support HCPs to routinely offer RGCS in Australia. HCPs (n =990) involved in a large national research study, offering couples-based RGCS, were surveyed at three time points: prior to offering RGCS through the study (Survey 1: Barriers); 8+weeks after offering to their patients (Survey 2: Possible supports); and towards the end of the study (Survey 3: Prioritised supports). HCPs were from primary care (e.g. general practice, midwifery) and tertiary care (e.g. fertility, genetics) settings. Results were analysed via a novel approach of using behaviour change theory (Capability, Opportunity and Motivation - COM.B) to align theory to practice. Survey 1 (n =599) identified four barrier themes: time constraints, lack of HCP knowledge and skill, patient receptivity, and HCP's perceived value of RGCS. Survey 2 (n =358) identified 31 supports that could facilitate HCPs offering RGCS. Survey 3 (n =390) was analysed separately by speciality and clinic location. Prioritised supports for primary care HCPs were 'regular continuing professional development activities' and 'a comprehensive website to direct patients for information'. There was general accordance with the perceived importance of the supports, although some difference in relation to funding between professional groups and clinic locations. This study identified a range of supports acceptable to HCPs across specialties and geographic locations that policymakers may use to direct efforts to ensure the roll out of RGCS is equitable across Australia.

The more you do it, the easier it gets: using behaviour change theory to support health care professionals offering reproductive genetic carrier screening

Recent advances in genomic sequencing have improved the accessibility of reproductive genetic carrier screening (RGCS). As awareness and interest grows, non-genetic health care professionals are increasingly offering RGCS to consumers. We conducted a qualitative interview study informed by behaviour change theory to identify influences on health care professionals considered as ‘early adopters’ offering RGCS through Mackenzie’s Mission, an Australian national research study investigating the implementation of free RGCS to couple’s preconception or in early pregnancy. Interviews were deductively analysed using the Theoretical Domains Framework to examine barriers and enabling factors. In total, we interviewed 31 health care professionals, who were primarily general practitioners (n = 23) offering RGCS through Mackenzie’s Mission. Upon analysis, 15 barriers and 44 enablers to implementation were identified and categorised across three health care professional target behaviours 1. Engaging with RGCS, 2. Identifying eligible patients, and 3. Offering RGCS. Whilst all Theoretical Domains Framework domains were present, barriers were predominantly categorised as ‘Environmental Context and Resources’ e.g., lack of time, followed by ‘Knowledge’ e.g., lack of understanding about genetics and ‘Beliefs about Capabilities’ e.g., concern about giving high risk results to patients. Although health care professionals expressed a preference for offering RGCS through a comprehensive and supported model of care, such as Mackenzie’s Mission, barriers remain. By understanding what drives current health care professionals’ behaviour towards offering RGCS, behaviour change theory provides an avenue to direct future efforts based on evidence and improve service delivery.

Transcending Conventional Biometry Frontiers: Diffusive Dynamics PPG Biometry.

This paper presents the first photoplethysmographic (PPG) signal dynamic-based biometric authentication system with a Siamese convolutional neural network (CNN). Our method extracts the PPG signal’s biometric characteristics from its diffusive dynamics, characterized by geometric patterns in the -planes specific to the 0–1 test. PPG signal diffusive dynamics are strongly dependent on the vascular bed’s biostructure, unique to each individual. The dynamic characteristics of the PPG signal are more stable over time than its morphological features, particularly in the presence of psychosomatic conditions. Besides its robustness, our biometric method is anti-spoofing, given the complex nature of the blood network. Our proposal trains using a national research study database with 40 real-world PPG signals measured with commercial equipment. Biometric system results for input data, raw and preprocessed, are studied and compared with eight primary biometric methods related to PPG, achieving the best equal error rate (ERR) and processing times with a single attempt, among all of them.

Cross-national comparison of psychosocial well-being and diabetes outcomes in adults with type 1 diabetes during the COVID-19 pandemic in US, Brazil, and Iran

BackgroundThe COVID-19 pandemic is a global public health emergency, which presents wide-ranging negative impacts on individuals with diabetes. To examine psychosocial well-being and diabetes outcomes in individuals with type 1 diabetes during the COVID-19 pandemic, and investigate how these factors vary in different countries.MethodsBetween April and June 2020 we employed a cross national comparative research study in the United States (US), Brazil, and Iran to collect data from 1788 adults with type 1 diabetes using web-based survey. Study participants answered questions relevant to diabetes distress, diabetes burnout, depressive symptoms, COVID-19 related changes, and socio-demographic characteristics. They also reported their last Hemoglobin A1c (HbA1c) and daily Time-in-Range (TiR) blood glucose. We analyzed data using comparative tests (Chi-square, Kruskal–Wallis and McNemar test), logistic and linear regression adjusted for fixed effects.ResultsThere were significant changes prior and during the pandemic regarding access to diabetes care, diabetes supplies and medications, healthy food and safe places to exercise in all countries (p < 0.05). Participants in Iran experienced higher levels of diabetes distress (57.1%), diabetes burnout (50%), and depressive symptoms (60.9%), followed by Brazil and US (p < 0.0001). US participants reported better glycemic control (HbA1c = 6.97%, T1R = 69.64%) compared to Brazil (HbA1c = 7.94%, T1R = 51.95%) and Iran (HbA1c = 7.47%, T1R = 51.53%) (p < 0.0001). There were also significant relationships between psychosocial well-being, diabetes outcomes, socio-demographic data, and COVID-19 related challenges in overall sample (p < 0.05).ConclusionsRegardless of differences among US, Brazil, and Iran, our findings revealed that different countries may experience similar challenges related to the COVID-19 pandemic which can impact negatively diabetes outcomes and psychosocial well-being in individuals with type 1 diabetes. Countries need to consider modifiable variables associated with poor diabetes outcomes and sub optimal psychosocial well-being and target vulnerable population using significant socio-demographic variables.

Key Characteristics of a Fragile Healthcare Supply Chain: Learning from a Pandemic.

The COVID-19 pandemic has highlighted the many challenges that provincial health systems have experienced while scaling health services to protect Canadians from viral transmission and support care for those who get infected. Supply chain capacity makes it possible for health systems to deliver care and implement public health initiatives safely. In this paper, we present emerging findings from a national research study that documents the key features of the fragility of the health supply chain evident across the seven Canadian provinces. Results suggest that the fragility of the health supply chain contributes to substantive challenges across health systems, thus limiting or precluding proactive and comprehensive responses to pandemic management. These findings inform strategies to strengthen supply chain capacity and performance in order to enable health systems to effectively respond to pandemic events.

An Evidence-Based Strategy to Scale Vaccination in Canada.

Provincial health systems have been challenged by the surge in healthcare demands caused by the COVID-19 pandemic; the COVID-19 vaccine rollout across the country has further added to these challenges. A successful vaccination campaign is widely viewed as the only way to overcome the COVID-19 pandemic, placing greater urgency on the need for a rapid vaccination strategy. In this paper, we present emerging findings, from a national research study, that document the key challenges faced by current vaccine rollout strategies, which include procurement and leadership strategies, citizen engagement and limitations in supply chain capacity. These findings are used to inform a scalable vaccine strategy comprising collaborative leadership, mobilization of an integrated workforce and a digitally enabled supply chain strategy. The goal of vaccinating the entire Canadian population in the next few months can be achieved when supported by such a strategy.

"Flying Blind": Canada's Supply Chain Infrastructure and the COVID-19 Pandemic.

Canada's COVID-19 response has been described as slow, with reactive decision making that has left the most vulnerable populations at risk of infection and death from the virus. Yet, within and across the provincial health systems, the supply chain processes and data infrastructure needed to generate the relevant data for, and evidence of, the spread of COVID-19 and the health system's capacity to respond to the pandemic are non-existent in Canada. Emerging evidence from a national research study highlights the significance of supply chain data infrastructure and processes that offer transparent, real-time data to inform decisions that support a coordinated, evidence-informed pandemic strategy that is proactive and capable of protecting the health of every Canadian.

The Relationships Between Resilience, Job Satisfaction, and Anticipated Turnover in CNOs

Rising chief nursing officer (CNO) turnover remains a topic of professional discussion. Leader stability ensures nursing excellence in a frenetic, complex, highly networked, portable, and technological era. When nurse executives vacate their role, the turnover disrupts the practice environment, threatening clinical and cultural performance. A paucity of evidence exists on the components of CNO turnover. Findings from a national research study reported resilience and job satisfaction may work synergistically to reduce anticipated turnover, providing insight on CNO role tenure. Rising chief nursing officer (CNO) turnover remains a topic of professional discussion. Leader stability ensures nursing excellence in a frenetic, complex, highly networked, portable, and technological era. When nurse executives vacate their role, the turnover disrupts the practice environment, threatening clinical and cultural performance. A paucity of evidence exists on the components of CNO turnover. Findings from a national research study reported resilience and job satisfaction may work synergistically to reduce anticipated turnover, providing insight on CNO role tenure. Noreen Bernard, EdD, RN, NEA-BC, FAAN, is a Chief Nursing Officer at University of Colorado Health in Erie, Colorado. She can be reached at [email protected]

2019 Veterans Health and Medical Cannabis Study: Massachusetts Preliminary Results

The anonymous 2019 Veterans Health and Medical Cannabis Study was a national and Massachusetts-focused research study conceived by Dr. Marion McNabb, CEO of Cannabis Center of Excellence, and Stephen Mandile, CEO of United Mass Wellness, an Iraqi War Veteran and medical cannabis advocate. The research study utilized a 100+-question anonymous survey online and recruited U.S. Military veterans to take the survey using a convenience sampling approach. The survey questions were developed using standard scales found in the literature, with input from Dr. Staci Gruber from McLean Hospital/Harvard Medical School. The objective was to collect anonymous, self-reported data from U.S. military veterans regarding their current health conditions, conventional medical treatments, medical cannabis use and its effectiveness with self-reported health conditions and symptoms, and issues related to access and stigma. Study data collection lasted from 3 March – 31 December 2019, and a total of 565 US military veterans completed the survey, of which 201 were from Massachusetts.

Best practices in gifted identification and assessment: Lessons from the WISC‐V

AbstractSchool psychologists in today's schools have the unique opportunity—and responsibility—to guide identification for gifted programs. “Who is gifted?” remains a perennial question in the gifted education literature, not answered by group intelligence screeners that purportedly level the playing field for all. As the student body grows more diverse, there is increasing necessity to ensure that all students have equal access to gifted programs. Failure to identify and develop the advanced abilities of gifted children who are culturally diverse, economically deprived, highly gifted, or twice exceptional is justifiably viewed as a civil rights violation. The National Association for Gifted Children's 2018 position statement, “Use of the WISC‐V for Gifted and Twice Exceptional Identification,” offers important considerations for identifying the gifted. Based on a national research study of 390 gifted children on the Wechsler Intelligence Scale for Children, Fifth Edition (WISC‐V), the statement recommends that the traditional practice of mandating Full Scale intelligence quotient scores be abandoned. Instead, it embraces the use of any one of six expanded index scores that are better measures of abstract reasoning for selecting students for gifted provisions. As gifted children are oftentimes asynchronous, alternate index scores are less biased and better able to document the strengths of all gifted children. What is learned from the WISC‐V can be applied by school psychologists to improve the choice of comprehensive individual intelligence tests, brief intelligence tests, and the body of evidence gifted children must exhibit.

Mental health among transgender women living with HIV in Canada: findings from a national community-based research study

ABSTRACT Antiretroviral therapy adherence among transgender (trans) women living with HIV (WLWH) is negatively impacted by depression and post-traumatic stress disorder (PTSD). Yet, little is known about factors associated with depression or PTSD among trans WLWH. Using cross-sectional data from a national community-based study of 1422 WLWH (n = 53 trans women), we characterized the prevalence of depressive and PTSD symptoms among trans WLWH and examined associations between factors (e.g., Trans stigma) and depressive and PTSD symptoms. Nearly half of participants reported clinically significant PTSD (45.3%) and depressive symptoms (45.3%) [mean Post-traumatic Stress Disorder Civilian Checklist Version-C score 13.8 (SD = 5.8); mean Center for Epidemiological Studies – Depression score 9.4 (SD = 8.0)]. Univariate linear regression analyses showed that <95% adherence, higher internalized HIV-related stigma, frequency of past-month hazardous alcohol use, and current injection drug use were significantly associated with both higher PTSD and depressive symptom scores, and higher resilience and social support with lower scores. A history of violence in adulthood was associated with higher depressive symptoms scores, whereas sexual relationship power and less difficulty meeting housing costs were associated with lower scores. Findings suggest a need for multi-level interventions to reduce barriers to mental wellbeing while fostering resilience and social support.

Congregational Discernment: One Church Case Study

This case study reflects the congregational practices of members and staff within a congregation in the southwest of the United States which self-identifies as a congregation within the Christian tradition. The congregation has completed processes and procedures that resulted in the congregation self-identifying as a welcoming and affirming congregation to all people. A Master of Social Work intern was embedded for an academic year, as her field internship experience, in the congregation as part of the ministerial staff. The intern examined congregational and denominational processes that included difficult conversations, daily practices, and decisions with specific reference to LGBTQI+ issues as part of a national research study of Christian congregations determining inclusivity in their membership, governance, and leadership functions. The case study included participant-observation by the intern of the lived experiences of church leadership and members as a result of these conversations and decisions specific to the practices of a congregation with membership of approximately 700 people. Findings included a decision for affirmation and inclusion that resulted in the congregation being discharged from the denomination. There was significant impact on the ministry including the loss of membership and finances. Additionally, ministries of inclusion are enhanced as formerly marginalized populations are now central to the congregation.

Mid Staffordshire: a Case Study of Failed Governance and Leadership?

AbstractThe public inquiry chaired by Robert Francis QC into failings of care at the Mid Staffordshire NHS Foundation Trust made 290 recommendations about matters including: standards of patient care in the National Health Service (NHS); organisational culture and leadership; the use of data and information; the need for greater openness; and compassionate and committed nursing. In this paper, we argue that Mid Staffordshire represented a profound failure of governance and leadership. We use findings from a national research study to analyse the response made by the boards and leadership of NHS hospitals to the inquiry recommendations, setting out the repertoire of board roles and behaviours required for the governance of safe and effective care.

Four Pillars for Supporting Religious, Secular, and Spiritual Student Identities

In an unpublished national research study, “Religious, Secular, and Spiritual Identities in Higher Education,” which evaluated how universities addressed issues of religious diversity on campus, interviews with university professionals, students, and community members revealed that the institutions that were successfully engaging in religious, secular, and spiritual identity work were changing their policies and practices at the administrative level in order to support these worldviews. Institutions at which students and members of the campus community generally articulated a sense of belonging and could pinpoint specific policies and practices to support this belonging were deemed successful at addressing religious, secular, and spiritual identity. These institutions exhibited patterns of policy and practice that coalesced around four emerging themes. These “Four Pillars of Policy and Practice” combined to create institutional climates that were markedly different in comparison to other institutions.