Team Of Caregivers Research Articles

Bridging the Gap with a Community Doula Program

The purpose of the Emory Decatur Labor Support Volunteer (EDLSV) program is as follows: (1) enhance the care and outcomes of underserved patients in a state with poor maternal–child health outcomes and wide health disparities, (2) support the work of the intrapartum caregiving team, and (3) allow nursing and midwife students to build situational awareness, labor-support skills, and interprofessional experience.

Qualitative inquiry of cancer caregiving during young adulthood: responsibilities, challenges, teamwork, and social support.

Background:Young adult cancer caregivers (YACC) may experience heightened caregiver burden because they take on caregiving during a dynamic time of life. The purpose of this study was to describe YACC experiences, burden, and social support while caregiving.Methods:Grounded by the Cancer Family Caregiving Experience Model and the Stress and Coping Social Support theory, semi-structured interviews were conducted with YACC. Inductive analysis was applied to YACC perceptions of caregiving, and deductive analysis to YACC social networks and social support.Results:YACC (N=34) were primarily between 25 to 29 years of age (38.2%), primarily female (70.6%), non-Hispanic White (91.2%), employed (85.3%), college graduates or higher (53.0%), and caring for a spouse/partner (52.9%). Qualitative analysis of interviews with YACC resulted in 2 themes: cancer caregiving during young adulthood and young adult cancer caregiver social support. In the first theme YACC often did not perceive themselves as caregivers, rather their caregiving responsibilities were viewed as an extension of their relationship with the patient. Further YACC reported developmental-specific responsibilities (eg, caring for young children, being unable to take time off while solidifying careers) which often conflicted with their caregiving responsibilities (eg, managing patient’s medication, attending appointments) and heightened burden. In response, YACC often formed caregiver teams consisting of family, friends, and community members to care for their loved one. In the second theme YACC most commonly reported receiving emotional and instrumental support from their social network. YACC specifically mentioned their appreciation for emotional support provided by other young adults and instrumental support in the form of financial support.Conclusions:YACC faced developmentally specific challenges during caregiving that older adult caregivers may not encounter. The conflict of young adult and caregiving responsibilities resulted in YACC forming caregiver teams. Thus, theoretical approaches to understand and improve caregiver health would benefit from the inclusion of the developmental context of young adulthood. Furthermore, it is crucial that cancer centers tailor supportive services to YACC as the number of young caregivers increases.

Prise en charge médico-psychologique immédiate aux urgences des personnes adultes victimes d’agression sexuelle : revue systématique de la littérature

IntroductionIt seems that sexual violence has a greater impact on mental health (consequences like post-traumatic stress disorder, major depressive disorder, alcohol use disorder, suicidal thoughts, suicide attempts) than any other form of traumatic event. One of the challenges public health instances have to face is how to provide medico-psychological care from an early stage. When it comes to dealing with traumatic collective events, immediate medico-psychological care protocols have been widely formalized. The purpose of our study is to determine whether this first care is usually applied to adults who are victims of sexual assault. MethodA systematic review was conducted using the Pubmed, PsycINFO and SUDOC databases. ResultsOut of 2173 articles, 24 were selected. There seems to be a consensus on a few points regarding how to take psychological care of sexual assault victims as soon as they are admitted in the ER. For the victims’ reception, all professionals dealing with victims of sexual assault should be specifically trained to do so. Multi-professional care should be coordinated and those interventions should be centralized, in one single place. Initially, It's essential to collect the risk factors that could trigger post-traumatic stress disorder, assess the signs of acute distress and assess the risk of suicide. Psychological interventions for victims of collective traumatic events (interventions as Psychological First Aid or the interventions of the Cellules d’Urgence Médico-Psychologique in France) should be applied to sexual assault victims. These acts consist in having an empathetic and non-judgmental attitude, while at the same time aiming to restore an immediate sense of security and control. These also include assessing and ensuring the future security of the patient, assessing and promoting social support and finally assessing and addressing his potential needs. Moreover, it's necessary to inform the patient about the symptoms associated to stress, their possible evolution and the available care ressources. However, regarding specific care, there is no agreement on the systematic intervention of a professional specialist in mental health and no agreement on the drug treatments to be employed. The technique of Defusing is only mentioned in one publication. As for systematically referring patients after emergencies to mental health services, opinions are divided. ConclusionMany aspects of the immediate medico-psychological care usually offered to victims of collective traumatic events is recommended for victims of sexual assault provided that the medical staff or team of caregivers receive appropriate training. The ER would also highly benefit from an organization in which gynecologists, legal doctors, psychiatrists, social and judicial actors would collaborate towards a comprehensive support of patients. It seems important to be able to offer comprehensive patient support, like a Case Management, in the short and medium term (support on the medical, social and legal aspects which would take into account the evolution particular to each case) and to assess the effectiveness of these devices. It also seems important to continue evaluating the impact of interventions and drug treatments used in practice on the prevention of post-traumatic stress disorder.

End-of-Life Decision-Making in Intensive Care Ten Years after a Law on Advance Directives in Germany.

Background and Objectives: Mortality on Intensive Care Units (ICUs) is high and death frequently occurs after decisions to limit life-sustaining therapies. An advance directive is a tool meant to preserve patient autonomy by guiding anticipated future treatment decisions once decision-making capacity is lost. Since September 2009, advance directives are legally binding for the caregiver team and the patients’ surrogate decision-maker in Germany. The change in frequencies of end-of-life decisions (EOLDs) and completed advance directives among deceased ICU patients ten years after the enactment of a law on advance directives in Germany is unknown. Materials and Methods: Retrospective analysis on all deceased patients of surgical ICUs of a German university medical center from 08/2008 to 09/2009 and from 01/2019 to 09/2019. Frequency of EOLDs and advance directives and the process of EOLDs were compared between patients admitted before and after the change in legislation. (No. of ethical approval EA2/308/20) Results: Significantly more EOLDs occurred in the 2019 cohort compared to the 2009 cohort (85.8% vs. 70.7% of deceased patients, p = 0.006). The number of patients possessing an advance directive to express a living or therapeutic will was higher in the 2019 cohort compared to the 2009 cohort (26.4% vs. 8.9%; difference: 17.5%, p < 0.001). Participation of the patients’ family in the EOLD process (74.7% vs. 60.9%; difference: 13.8%, p = 0.048) and the frequency of documentation of EOLD-relevant information (50.0% vs. 18.7%; difference: 31.3%, p < 0.001) increased from 2009 to 2019. Discussion: During a ten-year period from 2009 to 2019, the frequency of EOLDs and the completion rate of advance directives have increased considerably. In addition, EOLD-associated communication and documentation have further improved.

Palliative Oncological Patients with Insomnia: Concerns of the Patients and Their Relatives' Perception.

Insomnia is one of the most frequent symptoms and usually generates significant stress in 60% of patients with advanced cancer. Worries from the patients’ and relatives’ perspective are crucial to improve the patients’ quality of life but have received limited attention. The aims were to identify the concerns of patients with insomnia in the terminal illness stage in a palliative care unit and the relatives’ perception, and to compare both. Here, 63 patients and 53 relatives answered a questionnaire about worries in the personal, spiritual, family-related and economic area, as well as a quality-of-life uniscale. The results showed that the relatives’ most frequent concern was “Having lived life to the fullest” (100%), and the most intense was “The possible suffering during the process” (9.2/10). The patients’ most expressed concern was: “Having unfinished business” (100%), and the most intense was “Suffering during the process” (9.3/10). Quality of life showed an average value of 6.95 out of 10. Relatives only coincided significantly in: “Not knowing what happens after death” (r = 0.600; p = 0.000). These results bring visibility to concerns during the final stage of oncological palliative patients with insomnia from the patients’ and relatives’ perspective. Knowing both is useful for professionals to foster the well-being for a short, yet very important, period for patients, relatives and the caregiving team.

Prevention of Latent Safety Threats: A Quality Improvement Project to Mobilize a Portable CT.

Introduction:Transporting critically ill patients to diagnostic imaging for needed studies can be challenging and even prohibitive. A portable computerized tomography (CT) scanner allows the patient to remain in the intensive care unit, but presents new positioning and team challenges. Before activation of a portable CT scanner in our pediatric intensive care unit and through the use of iterative simulation-based Plan-Do-Study-Act (PDSA) cycles in the clinical environment, a multidisciplinary team of bedside caregivers determined optimal patient positioning, equipment needs, and specific staffing and choreography to develop detailed portable CT guidelines.Method:Our team engaged stakeholders from radiology, critical care, respiratory therapy, environmental services, facilities operations, and the CT vendor to develop scenarios. Simulations included infant and pediatric patients who required critical invasive monitoring and treatment devices, such as ventilators, and high-risk intracardiac and intravascular lines. Scenario objectives centered on the safe positioning, transfer, and scanning of the patient. Trained simulation specialists from the hospital’s simulation center facilitated simulation sessions.Results:Simulation-based PDSA testing identified 31 latent safety threats, including the need for a custom bed adapter due to pediatric patients’ variable size. We paused portable CT activation pending the custom adapter’s availability and remediation of other latent safety threats. Additional simulation-based PDSA cycles further refined the process once the custom adapter was available.Conclusions:Simulation identified unanticipated latent safety threats before the implementation of a portable CT scanner.

Transition of Care: Conceptualizing an Intentional Communication Model for the Camp Community.

“Transition of care” is defined as the movement of an individual from one setting of care to another and involves communicating with appropriate out-of-camp stakeholders such as parents, teachers, and community health care providers to identify youth needs (before camp) and outcomes achieved (after camp) so desired health goals may be shared across youth settings (e.g., home, school, community). Informed by management continuity and informational continuity theoretical frameworks, transition of care describes how activities such as recordkeeping and sharing of information from one team of caregivers to another improves the quality of services. When considered within the context of a child’s summertime experiences such as summer camp, attention to transition of care from a child’s academic year to summer, and from summer to a child’s academic year, may improve the quality of children’s summertime experiences by ensuring that a child’s health and well-being are both fully supported and promoted across the calendar year. Transition of care communication practices are strengthened through the use of electronic health records (EHRs) and systems that support the sharing of information across stakeholders. This article contextualizes transition of care communication for the camp community, addressing implications for practice, research, and policy, to encourage the development of a comprehensive system that supports transition of care practices; a system that will require the buy-in of camp institutions, third-party camp software companies, camp organizations, and families.Subscribe to JOREL

COVID-19: A learning moment for patients and health professionals.

A hospital physician from Northern Italy describes his own experience as caregiver of COVID-19 patients and as a patient himself who required treatment in urgent care. From this experience he learned that an untapped reserve of human solidarity exists in a team of caregivers in the midst of a crisis where they find an unsuspected shared energy. He never would have believed to be able to work long hours patiently and without sleep until he was challenged by the demands of the COVID crisis. As such, he discovers that to be effective the team leader should lead by example rather than by commandments! His experience as a patient allowed him to face his own mortality, to learn that healing rather than cure is the ultimate goal of caregiving.

An 11-Item Measure of User- and Human-Centered Design for Personal Health Tools (UCD-11): Development and Validation.

BackgroundResearchers developing personal health tools employ a range of approaches to involve prospective users in design and development.ObjectiveThe aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools.MethodsWe conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis.ResultsWe retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved.ConclusionsThe User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.

Development of Educational Guides for Providers and Caregivers on Management of Dementia Related Behaviors

<h3>Introduction</h3> Our goal was to educate informal caregivers and providers without subspecialty training on the management of veterans with dementia related behaviors. <h3>Methods</h3> We submitted an application for the clinician educator grant to the South Central MIRECC (mental illness research, education, and clinical center), which was approved. Literature for dementia related behaviors was reviewed. A pocket guide for providers and a brochure for informal caregivers was created. <h3>Results</h3> The provider pocket guide includes sections on evaluation, contributing factors, nonpharmacological management, safety considerations, pharmacological management, and resources. The caregiver brochure includes sections describing dementia related behaviors and possible causes, things the caregiver and treatment teams may do, medications that might be prescribed, and services and resources that are available. Printed versions were given to providers and informal caregivers of veterans with dementia in the North Texas VA healthcare system and online versions were published on the MIRECC website. <h3>Conclusions</h3> The clinician educator grant has provided an opportunity for trainees at different levels to gain experience in the development of educational products for providers and caregivers. The products contain information specific to caring for veterans with dementia related behaviors. They have been used to educate providers, trainees, and caregivers. Evaluation of feedback from users of the products was limited by the COVID-19 pandemic. <h3>Funding</h3> South Central Mental Illness Research, Education, and Clinical Center (MIRECC)

Task, usability, and error analyses of ambulance-based telemedicine for stroke care

Past research has established that telemedicine improves stroke care through decreased time to treatment and more accurate diagnoses. The goals of this study were to 1) study how clinicians complete stroke assessment using a telemedicine system integrated in ambulances, 2) determine potential errors and usability issues when using the system, and 3) develop recommendations to mitigate these issues. This study investigated use of a telemedicine platform to evaluate a stroke patient in an ambulance with a geographically distributed caregiving team comprised of a paramedic, nurse, and neurologist. It first determined the tasks involved based on 13 observations of a simulated stroke using 39 care providers. Based on these observational studies, a Hierarchical Task Analysis (HTA) was developed, and subsequently, a heuristic evaluation was conducted to determine the usability issues in the interface of the telemedicine system. This was followed by a Systematic Human Error Reduction and Prediction Approach (SHERPA) to determine the possibility of human error while providing care using the telemedicine work system. The results from the HTA included 6 primary subgoals categorizing the 97 tasks to complete the stroke evaluation. The heuristic evaluation found 123 unique violations to heuristics, with an average severity of 2.38. One hundred and thirty-one potential human errors were found with SHERPA, the two most common being miscommunication and selecting an incorrect option. Several recommendations are proposed, including improvement of labeling, consistent formatting, rigid or suggested formatting for data input, automation of task structure and camera movement, and audio/visual improvements to support communication.

‘That’s okay for me.’ ‘But it’s not okay for me.’ Tension and balance between patient’s will and surgeon’s motivation

This Reflective Practice describes the potential tension between the patient's will and surgeon's motivation. I, as the care given surgeon, learned a couple of intensive lessons trough the presented case, which I would like to share with colleagues to let them also reflect in similar situations about patient's will and their ambition to help and heal.The patient's will is inviolable, even if physicians sometimes wish differently. We have to respect patients’ wishes and support them in their decisions.Do not be ashamed to admit that you suffer in your role as physician, for example if you might lose a patient to complications. Regular conversations with the caregiver team are essential.Talking to others, or writing a reflection piece such as this, might be one of my coping strategies. We don’t know everything: medicine is sometimes unpredictable, even for experienced physicians.

Cross-cultural adaptation and translation of the Pediatric Intensive Care Unit-Quality of Dying and Death into Brazilian Portuguese.

Objectives:To translate and culturally adapt the Pediatric Intensive Care Unit-Quality of Dying and Death questionnaire into Brazilian Portuguese.Methods:This was a cross-cultural adaptation process including conceptual, cultural, and semantic equivalence steps comprising three stages. Stage 1 involved authorization to perform the translation and cultural adaptation. Stage 2 entailed independent translation from English into Brazilian Portuguese, a synthesis of the translation, back-translation, and an expert panel. Stage 3 involved a pretest conducted with family caregivers and a multidisciplinary team.Results:The evaluation by the expert panel resulted in an average agreement of 0.8 in relation to semantic, cultural, and conceptual equivalence. The pretests of both versions of the questionnaire showed that the participants had adequate comprehension regarding the ease of understanding the items and response options.Conclusion:After going through the process of translation and cultural adaptation, the Pediatric Intensive Care Unit-Quality of Dying and Death caregiver and multidisciplinary team versions were considered culturally adapted, with both groups having a good understanding of the items. The questionnaires include relevant items to evaluate the process of death and dying in the intensive care setting, and suggest changes in care centered on patients and especially family caregivers, given the finitude of their children.

Universal Design as a Paradigm for Providing Health Interventions for Older Adults 1

Universal Design is a broadly applied approach within the industrial design (ID) field that has, as its hallmark characteristic, the goal of inclusivity. This design philosophy allows the ID professional to play a role as an extended member of the caregiving team for older adults by creating products, services and solutions with a design ethic that has direct effects on their health and well-being.

The Quality of Work Environment of Nurses in a Public Hospital in Negros Occidental

The World Health Organization Regional Office of the Western Pacific's definition of a healthy workplace is a place where all members work together to achieve a unified vision for the health and well-being of the workers and the community. A healthy work environment is where all members are provided with the physical, psychological, social, and organizational states that protect and promote their health and safety. A positive work environment for nurses has been concisely described as a work environment where nurses are supported to function at the highest scope of clinical practice, working effectively in an interdisciplinary manner with the team of caregivers mobilizing resources quickly. This paper describes the level of quality of the work environment of nurses in a public hospital in Negros Occidental. Likewise, it explores the difference in the level of quality of the work environment when nurses are grouped according to their demographics. Also, it determines the challenges encountered by nurses in their work environment.

Ethical support units: benefits and limits of externalised ethics in times of crisis

This health crisis has revealed the difficulties, but also the creativity of the caregiving teams. In this context, assisting health professionals through the creation of an ethical support unit is valuable. However, the implementation of such a unit requires reflection with the definition of the resulting limits. Two questions are raised: is it really possible to externalise ethical reflection? Is there such a thing as ethics of crisis?

Earlier Intervention for Medically Fragile Pediatric Inpatient Population

Earlier Intervention for Medically Fragile Pediatric Inpatient Population

Neural mechanisms of impaired executive function in untreated colorectal cancer patients.

e24170 Background: Cancer-related cognitive impairment (CRCI) affects 45% of colorectal cancer (CRC) patients prior to treatment. This study aimed to explore the neural mechanisms of CRCI in this severely understudied population by using a combination of neuropsychological and cognitive neurophysiology assessments. Methods: Newly diagnosed Stage I-IV CRC patients were recruited at a Midwestern tertiary medical center. Enrollment criteria included normal or corrected to normal vision and no prior cancer within 3 years. Healthy comparisons were recruited and demographically-matched to Stage III/IV patients scheduled to receive chemotherapy. Participants completed neuropsychological measures of processing speed, psychomotor speed, executive function, and verbal memory at study baseline. We recorded scalp electroencephalography while participants performed a computer-based cognitive task designed to measure control over spatial attention. Two event-related potentials were measured following presentation of a task-irrelevant spatial cue: (1) N2, a neural correlate of stimulus selection emerging approximately 160 milliseconds after stimulus presentation; and (2) N2pc, a neural correlate of spatial attention allocation emerging approximately 200 milliseconds after stimulus presentation. Results: CRC patients were enrolled within 4-8 weeks following surgery for Stage I (11%), II (31%), and III (35%) CRC; Stage IV patients (23%) started chemotherapy without surgery. Patients (n = 26) and controls (n = 14) were matched on age and gender; patients were trending toward lower education than controls (p = .06). Patients performed worse than controls on executive function assessments (Trials B: p = .049; Stroop: p = .025). N2 amplitudes were smaller in patients than controls (p = 0.032. N2pc amplitudes were larger in patients than controls (p = .092). N2 amplitudes were associated with Stroop interference scores (r = 0.50, p = .068). Conclusions: CRC patients demonstrated impaired executive function performance at baseline. Neurophysiological data suggest impairments may emerge from limited neural resources available for stimulus selection and poor control over spatial attention. Correlations between neurophysiological data and executive function performance suggest participants better able to overcome task-irrelevant interference had relatively more neural resources available for stimulus selection. Overall, these results suggest patients may be limited in their ability to focus their attention on caregiver and health care team instructions. Clinical trial information: NCT03683004 .

Video conference intervention for distance caregivers (DCGs) of patients with cancer: Improving psychological outcomes.

12123 Background: Family caregivers are increasingly involved in providing care and support for patients with cancer. Approximately 20% of caregivers live &gt; 1 hour away from the patient and are considered DCGs. DCGs report higher distress and anxiety than local caregivers—often due to lack of first hand information and a high degree of uncertainty regarding the patient’s condition. Methods: This RCT was conducted at a large, urban comprehensive cancer center. Patients of all cancer types were eligible if they had monthly oncologist appointments and were receiving treatment. DCGs were randomized to one of three arms. Arm 1 received 4 monthly videoconference coaching sessions with a nurse practitioner or social worker focused upon information and support, participated in patient’s appointments with the oncologist via videoconference over the 4 month study period, and had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other 2 components of Arm 1. Arm 3 received access to the DCG website only. Primary variables of interest were DCG distress and anxiety. DCGs completed online surveys prior to randomization and at the completion of the intervention period. PROMIS Anxiety and the NCCN distress thermometer were used. Results: Between November, 2016 and October, 2019, 441 patient-dyads were enrolled. Mean DCG age was 47 years; 71% were female, 65% Caucasian, 63% were the child of the patient and 81% were employed. Mean patient age was 65 years, 60% were female, 30% had GI cancer and 18% had hematologic cancer. For patients with solid tumor cancers, 59% were Stage IV. RMANOVA was used to examine the change in anxiety t-scores over time by arms of the intervention, controlling for DCG age, race, and gender. There was a significant anxiety by group interaction (p = .03) with Arm 1 being the only group that showed a significant reduction in anxiety over time (21.2% improved, ES = .57). Distress followed a similar pattern with a significant distress by group interaction (p = .02) with Arm 1 demonstrating the greatest improvement in distress over time (54.3%). Conclusions: These data suggest that the use of a coaching videoconference intervention made significant and clinically meaningful differences in anxiety and distress for these important members of the family caregiving team. Clinical trial information: NCT02666183 .

Secondary Impact of the COVID-19 Pandemic on Patients With Heart Failure.

Secondary Impact of the COVID-19 Pandemic on Patients With Heart Failure.