Looking in the Rearview Mirror and to the Road Ahead on Dementia & Living Well

The number of Americans living with Alzheimer's and all other dementias continues to increase. Most of them will need long-term and community-based services as the disease progresses. While medical research is making advances, there is more work to be done to ensure that every person receives care that is person-centered and allows them to live with dignity and respect.

Towards Intermediated Workflows for Hybrid Telemedicine

The growing platformization of health has spurred new avenues for healthcare access and reinvigorated telemedicine as a viable pathway to care. Telemedicine adoption during the COVID-19 pandemic has surfaced barriers to patient-centered care that call for attention. Our work extends current Human-Computer Interaction (HCI) research on telemedicine and the challenges to remote care, and investigates the scope for enhancing remote care seeking and provision through telemedicine workflows involving intermediation. Our study, focused on the urban Indian context, involved providing doctors with videos of remote clinical examinations to aid in telemedicine. We present a qualitative evaluation of this modified telemedicine experience, highlighting how workflows involving intermediation could bridge existing gaps in telemedicine, and how their acceptance among doctors could shift interaction dynamics between doctors and patients. We conclude by discussing the implications of such telemedicine workflows on patient-centered care and the future of care work. © 2023 Owner/Author.

By improving dementia diagnosis rates nurses can make a difference to people's lives

The national target of a 66.7% dementia diagnosis rate was set in 2015, rising to 68% by 2019. The effect of COVID-19 and increasing estimated prevalence saw the overall national dementia diagnosis rate decline to 62% of people aged 65 years and over in February 2023 (NHS Digital 2023).

Preferences for cardiovascular and pulmonary rehabilitation care: A discrete choice experiment among patients in Lebanon.

OBJECTIVE: Patient preferences are important in designing optimal rehabilitation care. The aim of this study is to assess preferences for rehabilitation care among two groups of respondents. DESIGN: An online discrete choice experiment survey was carried out. SETTING: We use data for Lebanon, a country where rehabilitation care is still underdeveloped. PARTICIPANTS: Patients who have undergone or are currently undergoing rehabilitation treatment (users) and those who have not (yet) used rehabilitation care (non-users). INTERVENTION: Patients were asked to repeatedly choose between two hypothetical rehabilitation care packages with seven different attributes: attitude of the staff, travel time to clinic, out-of-pocket costs, medical equipment, rehabilitation plan, additional lifestyle education session, and support during rehabilitation care. MAIN MEASURES: Preference heterogeneity among patients with different characteristics was investigated using random effect binary logistic regression (software package Stata 15). RESULTS: In total, 126 respondents completed the survey. The most preferred attribute was an informal and friendly attitude of the staff followed by modern medical equipment, additional lifestyle education session via eHealth, and support during the rehabilitation program via phone call or SMS. Respondents were less in favor of going to the rehabilitation clinic and paying additional out-of-pocket costs for the rehabilitation treatment. This rank order was similar between users and non-users. CONCLUSION: Preferences of patients regarding the type of program chosen (eHealth or at clinical-based) need to be included in future rehabilitation programs. Improving patient experience with rehabilitation programs by giving the best care based on a patient-centered approach is essential.

Mental Health Client Experiences of Telehealth in Aotearoa New Zealand During the COVID-19 Pandemic: Lessons and Implications.

BACKGROUND: The COVID-19 pandemic and consequent lockdowns disrupted mental health service delivery worldwide, accelerating the adoption of telehealth services to provide care continuity. Telehealth-based research largely highlights the value of this service delivery method for a range of mental health conditions. However, only limited research exists exploring client perspectives of mental health services delivered via telehealth during the pandemic. OBJECTIVE: This study aimed to increase understanding of the perspectives of mental health clients around services provided via telehealth over the 2020 COVID-19 lockdown in Aotearoa New Zealand. METHODS: Interpretive description methodology underpinned this qualitative inquiry. Semistructured interviews were conducted with 21 individuals (15 clients and 7 support people; 1 person was both a client and support person) to explore their experiences of outpatient mental health care delivered via telehealth during the COVID-19 pandemic in Aotearoa New Zealand. A thematic analysis approach supported by field notes was used to analyze interview transcripts. RESULTS: The findings reveal that mental health services delivered via telehealth differed from those provided in person and led some participants to feel they need to manage their own care more actively. Participants highlighted several factors affecting their telehealth journey. These included the importance of maintaining and building relationships with clinicians, the creation of safe spaces within client and clinician home environments, and clinician readiness in facilitating care for clients and their support people. Participants noted weaknesses in the ability of clients and clinicians to discern nonverbal cues during telehealth conversations. Participants also emphasized that telehealth was a viable option for service delivery but that the reason for telehealth consultations and the technicalities of service delivery needed to be addressed. CONCLUSIONS: Successful implementation requires ensuring solid relationship foundations between clients and clinicians. To safeguard minimum standards in delivering telehealth-based care, health professionals must ensure that the intent behind telehealth appointments is clearly articulated and documented for each person. In turn, health systems must ensure that health professionals have access to training and professional guidance to deliver effective telehealth consultations. Future research should aim to identify how therapeutic engagement with mental health services has changed, following a return to usual service delivery processes.

Lessons for Vietnam on the Use of Digital Technologies to Support Patient-Centered Care in Low- and Middle-Income Countries in the Asia-Pacific Region: Scoping Review.

BACKGROUND: A rapidly aging population, a shifting disease burden and the ongoing threat of infectious disease outbreaks pose major concerns for Vietnam's health care system. Health disparities are evident in many parts of the country, especially in rural areas, and the population faces inequitable access to patient-centered health care. Vietnam must therefore explore and implement advanced solutions to the provision of patient-centered care, with a view to reducing pressures on the health care system simultaneously. The use of digital health technologies (DHTs) may be one of these solutions. OBJECTIVE: This study aimed to identify the application of DHTs to support the provision of patient-centered care in low- and middle-income countries in the Asia-Pacific region (APR) and to draw lessons for Vietnam. METHODS: A scoping review was undertaken. Systematic searches of 7 databases were conducted in January 2022 to identify publications on DHTs and patient-centered care in the APR. Thematic analysis was conducted, and DHTs were classified using the National Institute for Health and Care Excellence evidence standards framework for DHTs (tiers A, B, and C). Reporting was in line with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. RESULTS: Of the 264 publications identified, 45 (17%) met the inclusion criteria. The majority of the DHTs were classified as tier C (15/33, 45%), followed by tier B (14/33, 42%) and tier A (4/33, 12%). At an individual level, DHTs increased accessibility of health care and health-related information, supported individuals in self-management, and led to improvements in clinical and quality-of-life outcomes. At a systems level, DHTs supported patient-centered outcomes by increasing efficiency, reducing strain on health care resources, and supporting patient-centered clinical practice. The most frequently reported enablers for the use of DHTs for patient-centered care included alignment of DHTs with users' individual needs, ease of use, availability of direct support from health care professionals, provision of technical support as well as user education and training, appropriate governance of privacy and security, and cross-sectorial collaboration. Common barriers included low user literacy and digital literacy, limited user access to DHT infrastructure, and a lack of policies and protocols to guide the implementation and use of DHTs. CONCLUSIONS: The use of DHTs is a viable option to increase equitable access to quality, patient-centered care across Vietnam and simultaneously reduce pressures on the health care system. Vietnam can take advantage of the lessons learned by other low- and middle-income countries in the APR when developing a national road map to digital health transformation. Recommendations that Vietnamese policy makers may consider include emphasizing stakeholder engagement, strengthening digital literacy, supporting the improvement of DHT infrastructure, increasing cross-sectorial collaboration, strengthening governance of cybersecurity, and leading the way in DHT uptake.

Oral-only antibiotics for bone and joint infections in children: study protocol for a nationwide randomised open-label non-inferiority trial.

INTRODUCTION: Children with bone and joint infections are traditionally treated with intravenous antibiotics for 3-10 days, followed by oral antibiotics. Oral-only treatment has not been tested in randomised trials. METHODS AND ANALYSIS: Children (3 months to 18 years) will be randomised 1:1 with the experimental group receiving high-dose oral antibiotics and the control group receiving intravenous antibiotics with a shift in both groups to standard oral antibiotics after clinical and paraclinical improvement. Children in need of acute surgery or systemic features requiring intravenous therapy, including septic shock, are excluded. The primary outcome is defined as a normal blinded standardised clinical assessment 6 months after end of treatment. Secondary outcomes are non-acute treatment failure and recurrent infection. Outcomes will be compared by a non-inferiority assumption with an inferiority margin of 5%. ETHICS AND DISSEMINATION: The trial has the potential to reduce unnecessary hospitalisation and use of intravenous antibiotics in children with bone or joint infections. Due to the close follow-up, exclusion of severely ill children and predefined criteria for discontinuation of the allocated therapy, we expect the risk of treatment failure to be minimal. TRIAL REGISTRATION NUMBER: NCT04563325.

Optimizing the pediatric patient centered care medical home through a trauma informed care lens

The need for mental health services in primary care settings to address trauma remains a pressing issue for pediatrics. The existing literature supports the compatibility of Trauma-Informed Care Principles in Patient-Centered settings to address trauma, yet despite professional guidelines highlighting these models, a specific example within a primary care setting remains unrealized. This paper will conceptualize a Trauma Informed Medical Home model with Integrated Behavioral Health utilizing some aligning concepts such as safety, accessibility and collaboration found within the Trauma Informed Care and a Medical Home guideline. The resulting conceptualized model will represent a strengthened primary care setting where the delivery of mental health services using a trauma-informed lens can optimize patient-centered primary care medical home services.

Addressing Patient-Centered Care Through Mindful Listening and Mentalizing in Psychiatry.

This 21st-Century Psychiatrist column reflects the authors' perceptions of the importance of addressing patient-centered care through mindful listening and mentalizing in psychiatry. The authors maintain that adopting a mentalizing stance is a promising approach for clinicians with diverse backgrounds to humanize clinical practice, especially in today's dynamic high-speed, high-paced, and high-technology environment. Mindful listening and mentalizing are particularly consequential for the field of psychiatry since the COVID-19 pandemic prompted an abrupt transition from in-person to virtual platforms for education and clinical care.

HERMENEUTICS PROMOTES PERSON-CENTERED MENTAL HEALTH IN PANDEMIC TIMES

Background: COVID 19 affects not only patients' physical health but also mental well-being. Objective: To explore how hermeneutics, i.e., the theory and practice of interpretation, promotes person-centered mental health during the COVID-19 pandemic. Method: An excerpt of a dialogue between a patient with depression and his psychiatrist was used to illustrate how hermeneutics promotes person-centered mental health. Results: The case study, reviewed through the perspective of hermeneutics, showed that the patient needs a personal narrative to voice his COVID-19-related physical worries as well as associated psychosocial difficulties, mental health distress, and spiritual concerns. Discussion: A multi-layered personal narrative, informed by hermeneutics, ensures mental health needs are not overlooked/neglected in individuals affectedby COVID-19. Conclusion: Hermeneutics, when properly and clinically applied, promotes person-centered mental health in pandemic times.

COVID-19 VACCINATION AND HOMELESSNESS: THE NEED FOR A PERSON-CENTERED INTEGRATED APPROACH

Introduction: As homeless people in general suffer from poor health and are at elevated risk for COVID-19 infections they have an indication for receiving COVID-19 vaccination. However, several barriers in accessing vaccination can be identified. There is no information on the willingness of homeless people to receive the COVID-19 vaccination, nor on the experiences with the vaccination process of homeless people and professionals involved. Therefore, this qualitative study aims to provide insight into vaccination willingness among homeless people in the Netherlands, in the barriers and facilitators in accessing vaccination, and in the experiences of professionals involved in the vaccination process. Methods: We performed semi-structured interviews with 53 homeless persons, 16 professionals involved in health care or shelter for homeless people as well as 7 public health professionals who were involved in the vaccination process for homeless people. Interviews were thematically analyzed. Results: Homeless people experienced a lack of understandable and consistent information, which resulted in distrust and vaccination hesitancy. Mistrust in the government was common. However, approximately half of them were vaccinated at the end of the first vaccination campaign, sometimes because not being vaccinated would restrict their possibilities to access public places. Barriers to access vaccination included the complicated process and forms and difficulties accessing the vaccination venue. Especially difficult turned out to be the bureaucratic process of acquiring the Corona virus entry pass. Identified key-elements for a successful vaccination campaign for homeless people: a strong collaboration between all stakeholders, easy to understand information by trusted professionals, the possibility of vaccination at out-reach sites like homeless shelters. Conclusion: Although the vaccination rate among homeless people in the Netherlands is estimated to be lower than among the general public, successful vaccination campaigns are possible if trusted people provide easy to understand information, all stakeholders work together and vaccination takes place at easy to reach locations.

CHANGES IN ATTITUDES TO SELF-CARE AND PERSON-CENTERED MEDICINE IN THE UK SINCE THE ADVENT OF COVID-19

Background: Attitudes to self-care changed rapidly during the pandemic. Public and professionals alike were mandated to accept changes that required wholesale adoption of self-care practices.Objectives: Assess changes in public and healthcare professional (HCP) attitudes to self-care during the COVID-19 pandemic.Methods: A pragmatic review of three relevant initiatives that took place in 2020 and 2021, assessing changes in attitudes of members of the public and one study of health and social care professionals' opinions using an electronic survey and personal interviews. The key findings of these initiatives were contextualized to arrive at a consolidated view of how public and professional attitudes changed since the advent of the COVID-19 pandemic.Results: Public attitudes changed to understand and accommodate the need for self-care as reflected in government instructions. Professionals changed approaches both in their attitudes to self-care and their practice in its promotion to respond to the pressure of the pandemic.Conclusion: Attitudes to and understanding of self-care have undergone rapid and significant change as result of the pandemic. Whether the results are beneficial or permanent will depend upon whether public, professionals, and central government are prepared to support and encourage these changes.

GENEVA DECLARATION 2021 ON SELF-CARE, INTER-CARE, AND WELL-BEING IN PANDEMIC TIMES

Emerging from the 13th Geneva Conference on Person Centered Medicine organized as a virtual event on 5–7 April 2021 by the International College of Person-Centered Medicine (ICPCM) in collaboration with the World Medical Association, the International Council of Nurses, and the Pan-American Health Organization.

TRANSGENDER PERSON-CENTERED CARE IN PANDEMIC TIMES

Introduction and Objectives: This article aims to outline the need for a person-centered approach to sexual health for transgender people in COVID-19 pandemic times.Methods: These involved reviews of international healthcare standards and the principles and strategies of person-centered health care, which articulate science and humanism. Ethical imperatives, including respect for all persons' dignity and "first do not harm” as well as scientific considerations, including recognition of the eco-bio-psycho-social-spiritual multidimensionality of person and health were attended to.Results: The approach outlined here attends to Universal Sexual Rights, and the multidimensionality of persons' sexual diversity, in the context of the current pandemic. This is illustrated through the Gender Identity Law enacted by the Argentine Ministry of Health in 2014 and its 2020 amendment, formulated in the face of the pandemic. The healthcare approach outlined here involves recommendations to promote access to health care for transgender, transvestite, and sexual non-binary people in the context of the pandemic.Conclusions: All persons can present and experience a unique and multidimensional sexual profile that should be assessed thoroughly within the multidimensional framework of total health and total person. Health care should be scientifically thorough, provided prudently, informed by the "first do not harm” ethical principle, fully respectful of human and sexual rights and responsibilities, and aimed at advancing total health and complete well-being for all throughout their life course.

Virtual family-centered hospital rounds in the neonatal intensive care unit: protocol for a cluster randomized controlled trial.

BACKGROUND: Family-centered rounds is recognized as a best practice for hospitalized children, but it has only been possible for children whose families can physically be at the bedside during hospital rounds. The use of telehealth to bring a family member virtually to the child's bedside during hospital rounds is a promising solution. We aim to evaluate the impact of virtual family-centered hospital rounds in the neonatal intensive care unit on parental and neonatal outcomes. METHODS: This two-arm cluster randomized controlled trial will randomize families of hospitalized infants to have the option to use telehealth for virtual hospital rounds (intervention) or usual care (control). The intervention-arm families will also have the option to participate in hospital rounds in-person or to not participate in hospital rounds. All eligible infants who are admitted to this single-site neonatal intensive care unit during the study period will be included. Eligibility requires that there be an English-proficient adult parent or guardian. We will measure participant-level outcome data to test the impact on family-centered rounds attendance, parent experience, family-centered care, parent activation, parent health-related quality of life, length of stay, breastmilk feeding, and neonatal growth. Additionally, we will conduct a mixed methods implementation evaluation using the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. DISCUSSION: The findings from this trial will increase our understanding about virtual family-centered hospital rounds in the neonatal intensive care unit. The mixed methods implementation evaluation will enhance our understanding about the contextual factors that influence the implementation and rigorous evaluation of our intervention. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05762835. Status: Not yet recruiting. First posted: March 10, 2023; last update posted: March 10, 2023.

Evaluation of an Advanced Care Planning Training Program Incorporating Online Skills in Shared Decision Making: A Preintervention and Postintervention Comparative Study.

AIM: This study evaluated an advanced care planning (ACP) training program incorporating online skills in shared decision making (SDM). METHOD: The New World Kirkpatrick Model was employed to assess the efficacy of the training program at four levels: reaction, learning, behavior, and results. Reaction measured the participants' satisfaction and difficulty with the training program alongside the status of support received from workplaces engaging in ACP. Learning evaluated the changes in SDM skills. Behavior assessed the changes in the relationship between patients and healthcare professionals when the latter were involved in the SDM process. Results evaluated whether the participants were willing to participate in ACP educational programs as a facilitator and whether their motivation for continuous learning changed through throughout the training program. The relationships among patients, healthcare providers, and third-party roles were analyzed in SDM role-playing via structural equation modeling (SEM). RESULTS: Between September 2020 and June 2022, 145 multidisciplinary participants completed the entirety of the training program. The most common responses to the training were "satisfied", "slightly difficult", and "I received some support from my workplace". The SDM skills significantly improved from the first to the third workshop, evaluated using the Wilcoxon rank-sum test. In the first workshop, SDM was primarily performed by healthcare providers; however, in the third workshop, patient-centered SDM was adopted. Of the participants who completed the program, 63% intended to participate in future ACP educational programs as ACP education facilitators. CONCLUSION: This study ascertained the validity of this training.

Trauma-Informed Care for Hospitalized Adolescents.

Purpose of Review: Exposure to trauma accelerates during the adolescence, and due to increased behavioral and psychiatric vulnerability during this developmental period, traumatic events during this time are more likely to cause a lasting impact. In this article, we use three case studies of hospitalized adolescents to illustrate the application of trauma-informed principles of care with this unique population. Recent Findings: Adolescents today are caught in the crosshairs of two syndemics-racism and other structural inequities and the COVID-19 pandemic. Increased hospitalizations and mental health diagnoses during the past two years signal toxic levels of stress affecting this group. Trauma-informed care promotes health, healing, and equity. Summary: This concept of the "trauma-informed approach" is still novel; through examples and practice, providers can learn to universally apply the trauma-informed care framework to every patient encounter to address the harmful effects of trauma and promote recovery and resilience.

Ongoing Impact of COVID-19 on Breast Radiologists' Wellness

Objective Assess the ongoing impact of COVID-19 on mental well-being of breast radiologists nationwide two years after the start of the pandemic and compared to early in the pandemic. Methods A 27-question survey was distributed from December 2021 to January 2022 to physician members of the Society of Breast Imaging. Psychological distress and anxiety scores were calculated, and factors associated with them were identified with a multivariate logistic model. Results A total of 550 surveys were completed (23% response rate);the mean respondent age was 50 +/- 10 years. Fifty percent (265/526) of respondents reported two or more psychological distress symptoms, down from 58% in 2020 (P = 0.002), whereas 70% (362/526) of respondents reported increased anxiety, down from 82% in 2020 (P < 0.001). As in 2020, reporting financial strain and childcare adversely affecting job ability were associated with worse psychological distress scores (OR 3.6, 95% CI: 1.6-8.3, P = 0.02 and OR 6.0, 95% CI: 2.5-14.4, P = 0.002, respectively). Less time spent consulting, educating, and discussing results with patients was associated with higher psychological distress (OR 5.3, 95% CI: 2.1-13.2, P = 0.036) and anxiety (OR 6.4, 95% CI: 2.3-17.5, P < 0.001). Diminished research collaboration was associated with higher anxiety (OR 1.8, 95% CI: 1.1-2.9, P = 0.019). Conclusion The COVID-19 pandemic continues to cause mental health symptoms in breast radiologists, especially for those with pandemic-specific childcare needs and financial distress. Pandemic-related decreased opportunities to connect with patients and colleagues negatively impacts radiologists' mental health.

Telehealth: A Concept Analysis

Telehealth expanded during the pandemic, but a universal definition was lacking. This concept analysis defines telehealth as the provision of patient-centered, authentic, safe, and appropriate health care for a patient between two physical locations via the use of technology.

Care Workers and Managers' Experiences of Implementing Infection Control Guidance in an Epidemic Context: A Qualitative Study in the South East of England, during the COVID-19 Prevaccination Era

The national response to COVID-19 has had a severe impact on adult social care settings, with high mortality amongst people receiving and providing care in England. Care workers had to rapidly adapt to new infection control measures to protect themselves, their colleagues, and the people receiving care. Infection control in residential and domiciliary care is always complex, but COVID-19 infection control measures impacted exceptionally on care workers' working and everyday lives. We undertook qualitative interviews with care workers and managers (n = 10) in residential and domiciliary care for older people in the Southeast England during the first wave of the pandemic to understand their experiences, solutions, and concerns to implement guidance in practice. Data were analysed using framework analysis, and the following eight themes were identified: (1) Increasing visibility and support for the sector;(2) the impact of negative messaging about the sector;(3) feelings of isolation;(4) accessibility and usability of guidance;(5) social care staff as agents in producing and sharing good practice;(6) managing expectations and the impact of conflicting messages in the media;(7) improving communication with hospitals;and (8) problems in the early pandemic. The findings reveal widespread concerns for the marginalisation of the sector in the policy response and the inadequacy of infection control guidance. Guidance would benefit from a better understanding of domiciliary and residential care settings. This might involve the following steps: (a) coproduction of guidance with adult social care stakeholders, including those in direct-care roles and (b) a shift away from a clinical model of infection control towards a more flexible approach that attends to the inherent variability of care settings.