Team Of Caregivers Research Articles

Improving collaboration between palliative care and neurology: Focus on patient, family & healthcare provider experience

AbstractBackgroundThe prevalence of neurodegenerative diseases is increasing as the population ages. As these diseases are often incurable, progressive, and associated with significant loss of ability to communicate over time, it is paramount that advanced care planning (ACP) take place early in the disease trajectory to facilitate goal‐concordant care. There is increasing recognition of the barriers for neurologists to facilitate ACP and end‐of‐life care. Palliative care is a medical speciality that focuses on improving quality of life for patients living with serious illness, including helping with healthcare planning and decision‐making that align with the individual’s values and goals. However, there is a paucity of literature on how to best integrate palliative care or which elements of an integrated neuro‐palliative approach are the most beneficial to patients, caregivers, and clinicians.Our study aims to assess the experience of an embedded pilot clinic between Neurology and Palliative Care at the University Health Network (UHN) Memory Clinic on patients/caregivers and health care practitioners.MethodsWe aim to recruit 60 participants, including patients and family members, seen at the UHN Supportive Care Memory Clinic, and who screen positive for three of seven triggers for palliative care involvement for neurological patients as proposed by the National End of Life Care Programme of National Health Service in England. ACP conversations will follow an evidence‐based semi‐structured conversation guide. The impact of the clinic will be evaluated using patient, caregiver, and both Neurology and Palliative Care team member experience surveys. Secondary measures will include the percentage change in ACP and Power of Attorney documentation pre and post initiation of the clinic.ResultsFrom clinic inception in June 2020, 19 patients were seen (all‐virtual). Due to the COVID‐19 pandemic, the clinic was paused for the majority of 2021. Our study received UHN Quality Improvement approval in March 2021, and we began enrolling patients into our study in November 2021; enrolment is ongoing.ConclusionsThe results of this study will serve as a guide for quality improvement of our existing clinic and can inform future implementation of scalable integrated models of care between palliative care and neurology, and for other subspecialties and centres.

"I Go Beyond and Beyond" Examining the Invisible Work of Home Health Aides

Home health aides are paid professionals who provide long-term care to an expanding population of adults who need it. However, aides' work is often unrecognized by the broader caregiving team despite being in demand and crucial to care---an invisibility reinforced by ill-suited technological tools. In order to understand the invisible work aides perform and its relationship to technology design, we interviewed 13 aides employed by home care agencies in New York City. These aides shared examples that demonstrated the intertwined nature of both types of invisible work (i.e., emotions- and systems-based) and expanded the sociological mechanisms of invisibility (i.e., sociocultural, sociolegal, sociospatial) to include the sociotechnical. Through these findings, we investigate the opportunities, tensions, and challenges that could inform the design of tools created for these important, but often overlooked, frontline caregivers.

Transforming a Negotiation Framework to Resolve Conflicts among Older Adults and Family Caregivers.

Family caregivers of older people with Alzheimer's dementia (PWD) often need to advocate and resolve health-related conflicts (e.g., determining treatment necessity, billing errors, and home health extensions). As they deal with these health system conflicts, family caregivers experience unnecessary frustration, anxiety, and stress. The goal of this research was to apply a negotiation framework to resolve real-world family caregiver-older adult conflicts. We convened an interdisciplinary team of national community-based family caregivers, social workers, geriatricians, and negotiation experts (n = 9; Illinois, Florida, New York, and California) to examine the applicability of negotiation and conflict management frameworks to three older adult-caregiver conflicts (i.e., caregiver-older adult, caregiver-provider, and caregiver-caregiver). The panel of caregivers provided scenarios and dialogue describing conflicts they experienced in these three settings. A qualitative analysis was then performed grouping the responses into a framework matrix. Upon presenting the three conflicts to the caregivers, 96 responses (caregiver-senior), 75 responses (caregiver-caregiver), and 80 responses (caregiver-provider) were generated. A thematic analysis showed that the statements and responses fit the interest-rights-power (IRP) negotiation framework. The interests-rights-power (IRP) framework, used in business negotiations, provided insight into how caregivers experienced conflict with older adults, providers, and other caregivers. Future research is needed to examine applying the IRP framework in the training of caregivers of older people with Alzheimer's dementia.

Issues With Proton Pump Inhibitors-Even Safe Drug Treatments Need to Be Closely Monitored.

The reason we seek to introduce drugs into humans is for therapeutic benefit, but in doing so there is also a cost, both financial and in terms of safety risk. Both downsides warrant our attention, especially in challenging economic times where there are many demands upon personal finances, and where health care dollars are so acutely stretched that it is important to question the way in which we spend money on preventing and managing illness. As important as the imperative is to ensure that when we introduce treatment we create a positive overall benefit on the well-being of the individual, at the same time we must forbear from introducing potential for iatrogenic harm. In effect, the physician/pharmacist/patient (and/or caregiver) team need to consult, to determine that any treatment proposed makes sense from a safety and efficacy point of view, as well as from the dollars and cents perspective.

EPINEPHRINE AUTOINJECTOR UTILIZATION AND ACCESS IN A NATIONALLY REPRESENTATIVE FOOD-ALLERGIC ADULT SAMPLE

<h3>Introduction</h3> Food allergy (FA) affects over 32 million people in the United States. Timely epinephrine access is vital to treat FA-induced anaphylaxis. Research has demonstrated that only about half of FA patients have immediate access to epinephrine autoinjectors (EAIs). With the rising prevalence of adult-onset FA, more research is needed to understand epinephrine utilization in FA adults. <h3>Methods</h3> An online, IRB-exempt survey was developed by a multidisciplinary team of patient advocacy groups, physicians, caregivers, and survey methodologists to capture FA community needs. A nationally representative sample of adult FA patients was recruited by Evaluative Criteria Inc. in May 2022. <h3>Results</h3> 1,006 FA adults completed the survey. Among the sample, 61% self-identified as Caucasian, 16% as Black, 15% as Hispanic, and 7% as Asian, Native American, or Other. Only 52% of adults reported having ever been prescribed an EAI. The top reported reasons for access gaps were "my doctor did not indicate it was really needed," and "I don't believe I need it." A history of EAI prescriptions was highest among those with private health insurance (59% through employer, 68% self-purchased) and lowest among those on Medicare (48%) and Medicaid (51%). Only 33% of adults reported having an unexpired EAI, and fewer (25%) always had access to EAIs. <b>Thirty-six percent</b> of adults believe that EAIs can cause life-threatening side effects. On average adults reported paying $476 (SD = $971) out-of-pocket in the past year for EAIs. <h3>Conclusions</h3> Expanding EAI use and access among FA adults should be a priority for physicians, patient advocacy organizations, and beyond.

RACIAL DISPARITIES IN FOOD ALLERGY ANAPHYLAXIS EDUCATION AND MANAGEMENT AMONG A NATIONALLY REPRESENTATIVE SAMPLE

<h3>Introduction</h3> Evidence suggests that food allergy (FA) is disproportionately burdensome among racial/ethnic minority populations. More data are needed to evaluate disparities in access to high-quality medical care and effective daily management. <h3>Methods</h3> This online, IRB-exempt survey was developed by a multidisciplinary team of patient advocacy groups, physicians, caregivers, and survey methodologists. A nationally representative sample of adults with FA was recruited by Evaluative Criteria Inc. in May 2022. Only adults who reported a multi-system reaction suggestive of anaphylaxis to a top-nine allergen completed the survey. <h3>Results</h3> 1,006 Adults completed the survey. Sixty-one percent identified as Caucasian, 16% as Black, 15% as Hispanic, and 7% as Asian, Native American, or Other. Compared to Caucasian respondents, Black respondents were significantly (p<.05) less likely to recognize symptoms of anaphylaxis and the need to administer epinephrine immediately during anaphylaxis. Despite similar rates of access to epinephrine autoinjectors, Black respondents were less likely (p<.05) to immediately give epinephrine when they experienced anaphylaxis. Though both segments report seeing an allergist and primary care physician (PCP) for FA at similar rates, Black respondents were significantly (p<.05) less likely to report their doctor discussed anaphylaxis risk and significantly (p<.05) less likely to say the PCP provided a referral to an allergist. <h3>Conclusion</h3> Efforts are needed to close the gap in anaphylaxis education between Black and Caucasian FA adults.

Easing the burden of dementia caregiving: Protocol development for a telephone-delivered mindfulness intervention for rural, African American families

BackgroundThere have been few interventions targeted for rural African American (AA) caregivers of persons with dementia despite their unique cultural, geographic, health-related and socio-economic needs, including relatively less access to—and willingness to engage with—formal supports and resources. One effective intervention, Mindfulness-based stress reduction (MBSR), has been found to be culturally acceptable in AA populations; however, no studies have assessed feasibility, acceptability and impact of an adapted mindfulness intervention targeting rural AA dementia caregivers. AimsThe purpose of this study is to 1) determine the feasibility and acceptability of a telephone-delivered mindfulness training intervention in decreasing caregiver burden among rural, AA, informal caregiving teams of people with dementia; 2) to explore the effects of the training on caregiver burden and relevant secondary outcomes for both caregiving team members, including emotional regulation, tolerance of uncertainty, emotional and physical health, family conflict within the informal caregiving team, and self-efficacy; and 3) to explore comfort with and willingness to adopt technologies to access mindfulness practices and existing caregiving educational resources. MethodsOur study utilizes a single-group, uncontrolled design to assess the feasibility and acceptability of telephone-delivered mindfulness training designed to alleviate burden for rural caregivers of AA individuals with moderate to severe dementia. A care partner—the person who provides additional help —is included in the intervention. The primary outcome is feasibility of the telephone-delivered mindfulness intervention as assessed by an 85% retention rate with completion of at least 6 of the intervention sessions. Pre- and post-participation interviews assess acceptability.

A decomposition approach for the prioritised home health care problem with synchronised visits and multi-period planning

This study focuses on a home health care routing and scheduling problem (HHCRSP) with time based priorities and the option of not visiting all patients. This problem arises in situations when the HHC provider has insufficient number of caregivers available and/or faces higher than usual demand over a period of time. Determining the routes and schedules of available limited caregivers to match prioritised patients is, therefore, a highly critical task for many HHC providers. The patients that potentially cannot be serviced at their homes, can be offered a phone-call service or a time slot out of their requested time windows. A distinctive feature of the problem we are dealing is that a patient may need various services from a team of caregivers at the same time. Hence, this problem is a prioritised home health care routing and scheduling problem (PHHCRSP) with a multi-period planning horizon and synchronised visits. We extend the single caregiver model proposed by Cinar et al. (2021) to allow for multiple caregivers with various capabilities and synchronised visits. We then propose a new spatial–temporal decomposition with patient filtering (STDPF) approach to solve this problem in operational time. This method combines multi-dimensional temporal and spatial decomposition approaches together with a prioritisation scheme considering the care requirements and priorities. Computational tests on realistically large benchmark instances show that the proposed method provides high quality solutions within reasonable computational times. The flexible and scalable decomposition strategies used in the STDPF, together with the use of solvers, allow our approach to handle any additional constraints and even larger problem instances.

Missed Caregiving: A Call to Action for Health System Leadership.

Five years ago, we wrote an editorial about the goals of individualized developmental care and the implementation challenges neonatal intensive care units (NICUs) face even when established care guidelines exist, in light of the fact that the evidence for many interventions were still lacking.1 Existing barriers included healthcare system structures that did not support delivery of developmentally focused care. For example, despite the knowledge that high noise levels are stressful for both infants and parents, many alarm systems do not inform caregivers without also creating significant noise. Since that first editorial, significant empirical evidence highlights the value of integrated family-centered developmental care interventions for both high-risk infants and their familes2–4; yet, NICUs continue to struggle to fully implement this important care. For example, evidence of the importance of zero separation of infants from their families now exists.2,4 Currently, the lack of full implementation of integrated family-centered developmental care is frequently blamed on the COVID-19 pandemic.5–8 At the height of the pandemic, parent access to the NICU was significantly limited. Yet, even today parental presence in the NICU is limited by nursery policies, COVID-19 quarantine protocols, and structural determinants such as lack of access to affordable transportation. Parents may need to care for other children who are not able to attend school or day care because of COVID-19 exposures or illness. Even when parent presence in the NICU is unhindered by COVID-19, they may not be able to afford to be with their infant as frequently or as long as they would prefer because of their job requirements or transportation costs. In addition, the COVID-19 pandemic has led to nurse burnout, stress, and staff shortages.9,10 Short-staffed NICUs create morale distress for nurses who cannot deliver the high quality of care they know the infants and families deserve.11 Regardless, even when parents are present in the nursery, staff may not have the time to support parents' informational, emotional, and physical needs. The term “missed care” is often used to refer to care that is not, but should be, delivered. Missed care in the NICU often includes the provision of integrated family-centered care and was present prior to the pandemic12 and is related to nurse job enjoyment and their plans to leave the NICU.13 To ensure nurses can deliver the care they know is essential for the infants and families, hospital health systems must support workload assessment that includes these important aspects of caregiving.14 Every neonatal nurse knows that it takes more time to teach and support a parent to provide caregiving to perform that caregiving themselves. Yet, parental presence and participation in the health care decision making and delivery of care are essential to parental confidence in their caregiving and decreasing infant hospital stay. Parents must be acknowledged as an important aspect of the caregiving team, potentially the most important aspect, given their long-term impact on the growth and development of the infant. Over the past 2 years, we have all seen the power of the voice of nurses. It is now time to raise our voices for ourselves and the infants and families we serve. We must advocate at the national level for standardized staffing levels that allow for the appropriated delivery of care and polices that ensure that parental presence is not compromised on the basis of racial and structural determinants of health. While zero separation may seem like an unreasonable and unobtainable goal, if we don't have such a goal we will not begin to move the needle toward a more optimal setting that supports the growth and development of infants and their families. Therefore, given the importance of the provision of integrated family-centered care, nurses must be afforded the time to ensure they can have effective interactions with families, deliver developmental interventions and parent teaching, and maintain ongoing relationships with families over the course of the hospital stay. —Debra Brandon, PhD, RN, CCNS, FAAN Co-Editor; Advances in Neonatal Care [email protected] —Jacqueline M. McGrath, PhD, RN, FNAP, FAAN Co-Editor; Advances in Neonatal Care [email protected]

The value of visual co-analysis models for an inclusive citizen science approach. Inspired by co-creation methods from design thinking

Citizen science entails the collaboration of citizens and scientists. The process of this collaboration can take on many forms: identifying a research question, collecting data, analysing data to support or refute a hypothesis, monitoring environmental or health conditions for management or policy development. Citizen science propagates the inclusion of citizens not only as participants engaged in the design research process but also involved in designing the research process itself. In order to address issues of a citizen science approach, it is important that potentially everyone can contribute. Therefore, methodologies need to be fine-tuned to improve the involvement of non-professional researchers in the research process. Co-creation methods may be an effective methodology for doing so and bring different types of knowledge (e.g., insights, experiences, data, information) to the ‘table of science’ and, ultimately, improve the constructive exchange and evaluation of this knowledge. This article describes the process of a pilot where professional researchers, informal caregivers, and human resource advisors use visual co-analysis to create a research plan. For the framing of this research a theme was proposed which focused on the possibility of technological support for work-related challenges experienced by informal caregivers working in healthcare. Five semi-structured interviews were conducted by researchers with informal caregiver in the first phase of ‘Empathize’ within design thinking (i.e., human centred approach). The goal of the interviews was to understand and relate to the caregiver’s perception of their current informal care situation (e.g., balance, bottlenecks, opportunities, well-being). Quotes selected from theses interviews were the input for a bottom-up methodology for citizen science using the KJ Method (i.e., affinity diagramming) as a form of visual analysis model. The (co-)analysis was done by the team of caregivers, HR advisors and researchers using the online tool Miro. This article aims to describe how the use of visual analysis models as a group consensus technique can facilitate the involvement of non-professional researchers and thereby support the establishment of inclusiveness of a citizen science approach. In other words, to obtain equal collaboration, an inclusive citizen science approach must allow communication about, and analysis of data by all participants, instead of non-professional researchers merely being presented with the finalized results of the analysis phase within research. An inclusive citizen science approach might lead to a period of uncertainty where problem definitions, research questions or predefined categories posed early on are (re-)assessed. However, this bottom-up approach will ultimately lead to a positive impact in finding the root problem for innovative scientific outcomes. Together, the pilot study and descriptive review offer guidance for understanding visual co-analysis models as the starting point for an inclusive citizen science approach.

421.2: One Organ Procurement Organization’s 26-Year Experience With Uncontrolled DCD Donation

Introduction: Uncontrolled DCD donation is an underutilized method of procurement in the U.S., with 44% of all uncontrolled DCD donors to date being procured by one of 57 OPOs. The purpose of this study is to demonstrate that uncontrolled DCD organ donation can lead to the successful retrieval of transplantable organs and to evaluate kidney and liver transplant outcomes for recipients of organs from uncontrolled DCD donors. Methods: This is a retrospective single OPO, multi-center study. As a standard of practice the OPO routinely pursued uncontrolled DCD donors in the setting of hemodynamic instability and/or sudden cardiac arrest. The aggressive pursuit of these types of donors required the OPO to establish the following: an organizational expectation, training, active AOC oversight, a system to rapidly deploy resources, a communication plan with care-giving team members, and 24-hour organ preservation and surgical recovery support. Donor warm ischemic time was determined by the time from patient arrest to cross-clamp with most donors receiving CPR during that interval. Graft survival was determined by the Kaplan-Meier method. WIT, age, kidney PNF and DGF were further evaluated by donor Maastricht category. Results: Between 1996 and 2021, 334 kidneys, 15 livers, 2 pancreata and 1 lung was transplanted from 262 uncontrolled DCD donors. The mean donor age was 33 years (r = 0.5 – 76, sd=15). The median warm ischemic time was 44 minutes (IQR = 22 - 83). Kidney graft survival was 84% at 6 months, 78% at 1 year and 71% at 3 years. Of the 15 livers transplanted, 9 grafts implanted prior to 2010 failed within 3 months, but all 3 of the grafts implanted in 2021 are functioning at 6 months post-transplant. Two of the liver grafts are functioning at 12 years post-transplant and one is functioning at 19 years post-transplant. The lung graft is functioning at 8 years post-transplant.Conclusions: Uncontrolled DCDs provide acceptable kidney graft survival outcomes and represent a pool of organs that should be pursued for transplantation. OPOs should develop protocols to effectively recover organs from uncontrolled DCDs, particularly in light of promising new advancements in organ preservation.

Occupational adaptation as a social process for dementia care teams

Background Few studies have examined a group’s collective experience of occupation using occupational therapy theoretical models. Dementia caregiving requires a diverse team of caregivers who learn and work together to resolve shared challenges. An Occupational Adaptation (OA) theory-based training program for dementia care teams was developed to better understand the team’s adaptive process inherent in cooperative caregiving. Aim/objectives Describe how the team learned together and how the training impacted their teamwork. Materials/methods Fourteen employees at one continuing care retirement community underwent OA-based training. During the program, the team analysed and resolved challenging dementia care cases. Participant observations, participant journals, open-ended surveys, and follow-up semi-structured interviews were analysed. Results The thematic framework included five steps: unite around a shared challenge, tap the collective adaptive repertoire, collaborate on case-specific plans, implement with teamwork, and return for ongoing problem solving and integration. The program enhanced appreciation for teammates’ knowledge, skills, and experiences, learning from each other, and integration of team-centered OA process. Conclusion/significance The OA-based program appears to have facilitated adaptation that was complex, social, and generalisable. OA theory is enriched with a social view of occupational adaptation opening new opportunities for therapists and researchers to understand and facilitate adaptation among teams.

Creation of data application to facilitate device-monitoring safety for infection prevention

Background: Efficient monitoring of devices to ensure timely removal is an ongoing challenge. There is a need for data visualization products that can aggregate disparate data streams to support device reviews, increase consistency across changes in caregiver teams, and synergize with people and operational processes within and across regional acute-care facilities. Methods: A data display application was developed to provide data from nearly any source in a consistent visual representation that could be used in real time. The infection prevention (IP) overlay combined data related to urinary catheters, central vascular catheters, and femoral vascular catheters from the electronic health record system. Clinical and data experts collaborated to develop data definitions, inclusion criteria, and report components. The application display indicated the current catheter or device status of each patient facility-wide, organized by service unit (Fig. 1). Additional patient information could be accessed from within the application, and a comment feature allowed caregivers to communicate directly through the tool (Fig. 2). Results: Pilot implementation began February 2021, and the NATE IP application was live for all users (unit and facility leaders, providers, infection preventionists, etc) as of July 2021. The tool is currently available for use at 171 acute-care hospitals within the HCA healthcare system, and it accommodated 3 different electronic medical record systems. Usage peaked in August 2021, with an average of 1,700 views per day. Daily utilization maximum ranges from 1,100 to 1,500 views per day, with an average of ~1,300 views per day. The tool is used during daily patient safety rounds, including weekends and holidays. User feedback was overwhelmingly positive, with users reporting an increase in communication, streamlined documentation, improved tracking of reasons to retain, and increased accountability for daily updates. During the proof-of-concept implementation, zero bugs were identified and several feature enhancements were implemented, including addition of port status and device-day reporting counts. Planned enhancements include mupirocin and chlorhexidine bathing use, isolation precaution use, and blood cultures ordered &gt;3 days after admission. Conclusions: The NATE IP tool brings together data related devices into a single view for use by direct caregivers and all levels of leadership. Development of this or similar tools to consolidate various data streams into a central tool facilitates improved communication and consistency between caregiver teams. It also drives operational efficiencies and improves safety. Expansion to incorporate notifications related to potential issue will expand the proactive utility of this tool.Funding: NoneDisclosures: None

THE USE OF EMOTIONAL INTELLIGENCE IN THE TREATMENT OF PARKINSON'S DISEASE AND SOCIAL WORKER IN THE ROLE OF CASE MANAGER

As the life span of human beings increases, they encounter diseases due to multiple causes, which their ancestors did not encounter much. Modern medicine has not yet found a definitive cure for such diseases. Parkinson's disease, which is believed to be caused by the effects of both genes and environmental conditions, is one of these diseases. A Team-Based Approach to Parkinson's care is necessary because the treatment process for Parkinson's disease is long, laborious, and expensive. In the treatment process of Parkinson's disease, specialists from many different branches may be involved for the new symptoms that the patient encounters. Interdisciplinary work can complicate the treatment process. A case manager is needed to follow the patient's treatment process without interruption and to coordinate the expanding treatment team. Social workers can do the best-case management with their knowledge, skills and values within the scope of medical social work. The case manager's job becomes more difficult as Parkinson's disease progresses and the treatment team expands. It may not be possible for the case manager to find holistic solutions to these problems with a classical sense of duty. New perspectives may be inevitable for solving problems. Emotional intelligence, which is used successfully in developed countries, can also be used successfully in the medical sector and especially in Parkinson's disease, whose treatment process is more complex than other diseases. A holistic treatment can be achieved by instilling emotional intelligence components, which are especially assimilated by the case manager and social worker, to the patient, caregiver and treatment team. In this article, it is aimed that the use of emotional intelligence in medical social work interventions will lead to interdisciplinary studies.

How do people living with chronic conditions and their informal caregivers experience primary care? A phenomenological-hermeneutical study.

Gaining insight in how people living with chronic conditions experience primary healthcare within their informal network. The primary healthcare system is challenged by the increasing number of people living with chronic conditions. To strengthen chronic care management, literature and policy plans point to a person-centred approach of care (PCC). A first step to identify an appropriate strategy to implement PCC is to gain more insight into the care experiences of these people and their informal caregivers. A phenomenological-hermeneutical philosophy is used. The study is in line with the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ). In-depth, semi-structured interviews with people living with chronic conditions and informal caregiver dyads (PCDs) (n=16; 32 individuals) were conducted. An open-ended interview guide was used to elaborate on the PCDs' experiences regarding primary care. A purposive, maximal variation sampling was applied to recruit the participants. Based on sixteen PCDs' reflections, ten themes were identified presenting their experiences with primary care and described quality care as listening and giving attention to what people with chronic conditions want, to what they strive for, and above all to promote their autonomy in a context wherein they are supported by a team of formal caregivers, family and friends. To meet the PCDs' needs, self-management should be addressed in an interprofessional environment in which the PCD is an important partner. The findings may facilitate a shift to encourage PCDs in their strengths by enabling them to share their personal goals and by working towards meaningful activities in team collaboration. Three strategies-self-management support, goal-oriented care, and interprofessional collaboration-have been suggested to improve the PCDs' primary care experiences. These strategies could guide nursing practice in using more and improve high-quality nursing care.

Consent. Ethics of a contractual communication

The context of this study comes from the ambiguities at the time of hospitalizations and at the time of choices for the end of life, choice made by whom and why. The methodology used is based on what has been done and what can be done. In many areas of the social sciences related to the medical sciences, work in ethics revolves around the synthesis and development of applications to examine, consider, and evaluate the phenomenology's that elicit consent. Consent is not limited to a YES and a NO. There are two kind of results: (1) the need for preliminary discussions in order to conceive the peripheral limits of this right and duty; (2) the review of the complete texts by looking closely at the vocabulary used. Discussions are difficult for the sole reason of wanting to keep these partial logics of the trades put forward with their historicity's. The consent is bilateral and must prefigure the presence of two parties, each often composed of several identities and on a fact: “Knowing the cause of things” and “Knowing the supposed results of the action”. Consent is not the conclusion of a decision or a personal will. The clearest will be to arrive at a consensus on the elements of power about the end of life, and admit that medical, jurisdiction and republican laws are not the same subject. To this are grafted the ethical elements of a life in the current of what is going to be lived as much by the persons as by the teams of caregivers.

Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study.

BackgroundFamily caregivers of children with special health care needs (CSHCN) are responsible for managing and communicating information regarding their child’s health in their homes. Although family caregivers currently capture information through nondigital methods, digital health care applications are a promising solution for supporting the standardization of information management in complex home care across their child’s health care team. However, family caregivers continue to use paper-based methods where the adoption of digital health care tools is low. With the rise in home care for children with complex health care needs, it is important to understand the caregiving work domain to inform the design of technologies that support child safety in the home.ObjectiveThe aim of this study is to explore how family caregivers navigate information management and communication in complex home care for CSHCN.MethodsThis research is part of a broader study to explore caregivers’ perspectives on integrating and designing digital health care tools for complex home care. The broader study included interviews and surveys about designing a voice user interface to support home care. This formative study explored semistructured interview data with family caregivers of CSHCN about their home care situations. Inductive thematic analysis was used to analyze the information management and communication processes.ResultsWe collected data from 7 family caregivers in North America and identified 5 themes. First, family caregivers were continuously learning to provide care. They were also updating the caregiver team on their child’s status and teaching caregivers about their care situation. As caregiving teams grew, they found themselves working on communicating with their children’s educators. Beyond the scope of managing their child’s health information, family caregivers also navigated bureaucratic processes for their child’s home care.ConclusionsFamily caregivers’ experiences of caring for CSHCN differ contextually and evolve as their child’s condition changes and they grow toward adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressure in summarizing information and coordinating 2-way communication about the details of their child’s health with caregivers. The design of digital health care systems and tools for complex home care may improve care coordination if they provide an intuitive method for information interaction and significant utility by delivering situation-specific insights and adapting to unique and dynamic home care environments. Although these findings provide a foundational understanding, there is an opportunity for further research to generalize the findings.

Whose Decision Is It? Perspectives on Agency Involvement in Determining Paid Caregivers' Roles in Dementia Care

Individuals living at home with dementia often rely on a team of caregivers and health care providers. Yet little is known about how the role of paid caregivers within this team is determined. We identified patients with moderate to severe dementia (n=9) and conducted individual interviews with their care teams (family caregiver, paid caregiver, physician) (n=27) to explore perspectives on paid caregiver roles. Participants disagreed on who determined the paid caregiver’s role. Agencies were perceived to set limitations on the scope of care (particularly by physicians) but agency care plans were often seen as inadequate and failing to capture important nuances of care. Most family caregivers believed they should guide what paid caregivers did in the home, while most paid caregivers reported relying on their own experience and knowledge. Understanding and addressing these differing perceptions is critical to improving the quality of paid care in the home.

Support From a Distance: How Home Care Agencies Influence Paid Caregiving in the Home

Paid caregivers (e.g., home health aides, personal care attendants, and other direct care workers) who care for functionally impaired older adults in the home frequently report that while rewarding, their work is logistically, physically, and emotionally demanding. Unlike direct care workers in institutional settings, paid caregivers work with care recipients one-on-one in private settings and often have limited contact with or support from their employers. These factors contribute to high workforce turnover and may impact the quality of patient care. In this symposium, we explore ways that home care agency policies and practices influence the experience of giving and receiving care in the home. First, Bryant et al. describe the range of agency-based models and the impact of workplace design in creating supportive working environments. Next, Fabius et al. explore characteristics of direct care agencies across Maryland, with implications for worker training and support. Reckrey et al. describe the differing perceptions of aides, caregivers and providers around the role agencies play in defining paid caregivers’ roles, and how this may lead to conflict within the caregiving team. Finally, in the context of COVID-19, Franzosa et al. examine communication and coordination between Veterans Affairs-paid agencies and home health aides during the pandemic, while Tsui et al. present a case study of an agency’s efforts to support paid caregivers through group support calls. Together, these studies highlight challenges in the structure, organization and perceptions of home care agencies, and identify potential avenues for agencies to support paid caregivers and their clients.

Views on Using Social Robots in Professional Caregiving: Content Analysis of a Scenario Method Workshop.

BackgroundInterest in digital technologies in the health care sector is growing and can be a way to reduce the burden on professional caregivers while helping people to become more independent. Social robots are regarded as a special form of technology that can be usefully applied in professional caregiving with the potential to focus on interpersonal contact. While implementation is progressing slowly, a debate on the concepts and applications of social robots in future care is necessary.ObjectiveIn addition to existing studies with a focus on societal attitudes toward social robots, there is a need to understand the views of professional caregivers and patients. This study used desired future scenarios to collate the perspectives of experts and analyze the significance for developing the place of social robots in care.MethodsIn February 2020, an expert workshop was held with 88 participants (health professionals and educators; [PhD] students of medicine, health care, professional care, and technology; patient advocates; software developers; government representatives; and research fellows) from Austria, Germany, and Switzerland. Using the scenario methodology, the possibilities of analog professional care (Analog Care), fully robotic professional care (Robotic Care), teams of robots and professional caregivers (Deep Care), and professional caregivers supported by robots (Smart Care) were discussed. The scenarios were used as a stimulus for the development of ideas about future professional caregiving. The discussion was evaluated using qualitative content analysis.ResultsThe majority of the experts were in favor of care in which people are supported by technology (Deep Care) and developed similar scenarios with a focus on dignity-centeredness. The discussions then focused on the steps necessary for its implementation, highlighting a strong need for the development of eHealth competence in society, a change in the training of professional caregivers, and cross-sectoral concepts. The experts also saw user acceptance as crucial to the use of robotics. This involves the acceptance of both professional caregivers and care recipients.ConclusionsThe literature review and subsequent workshop revealed how decision-making about the value of social robots depends on personal characteristics related to experience and values. There is therefore a strong need to recognize individual perspectives of care before social robots become an integrated part of care in the future.