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BACKGROUND: Lack of physical activity is a concern for children across diverse backgrounds, particularly affecting those in rural areas who face distinct challenges compared to their urban counterparts. Community-derived interventions are needed that consider the unique context and additional physical activity barriers in under-resourced rural settings. Therefore, a prospective pre-post pilot/feasibility study of Hoosier Sport was conducted over 8-weeks with 6th and 7th grade children in a low-socioeconomic rural middle school setting. The primary objective of the present study was to assess trial- and intervention-related feasibility indicators; and the secondary objective was to collect preliminary assessment data for physical activity levels, fitness, psychological needs satisfaction, and knowledge of physical activity and nutrition among participating youth. METHODS: This prospective 8-week pilot/feasibility study took place in the rural Midwestern United States where twenty-four middle school students participated in a mixed-methods pre-post intervention during physical education classes. The intervention included elements like sport-based youth development, individualized goal setting, physical activity monitoring, pedometer usage, and health education. Data were collected at baseline (T1) and post-intervention (T3), with intermediate measures during the intervention (T2). Qualitative data were integrated through semi-structured interviews. Analytical methods encompassed descriptive statistics, correlations, repeated measures ANOVA, and thematic analysis. RESULTS: Key findings indicate robust feasibility, with intervention-related scores (FIM, AIM, and IAM) consistently surpassing the "good" threshold and 100% retention and recruitment success. Additionally, participants showed significant physical performance improvement, shifting from the 25th to the 50th percentile in the 6-minute walk test (p < 0.05). Autonomy and competence remained high, reflecting positive perceptions of program practicality. Nutrition knowledge, initially low, significantly improved at post-intervention (p < 0.01), highlighting the efficacy of targeted nutritional education in Hoosier Sport. CONCLUSIONS: This study pioneers a community-engaged model for physical activity intervention in under-resourced rural settings. Positive participant feedback, coupled with improvements in physical fitness and psychosocial factors, highlights the potential of the co-design approach. The findings offer valuable insights and a practical template for future community-based research, signaling the promising impact of such interventions on holistic well-being. This research lays the foundation for subsequent phases of the ORBIT model, emphasizing collaborative, community-driven approaches to address the complex issue of declining physical activity levels among adolescents.
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Exercício Físico , Estudos de Viabilidade , População Rural , Humanos , Projetos Piloto , Masculino , Exercício Físico/psicologia , Criança , Feminino , Adolescente , Estudos Prospectivos , Promoção da Saúde/métodos , Meio-Oeste dos Estados Unidos , Avaliação de Programas e Projetos de Saúde , Educação Física e TreinamentoRESUMO
PURPOSE: The significance of regular physical activity (PA) in reducing cardiovascular disease (CVD) risk is widely acknowledged. However, children in rural areas encounter specific barriers to PA compared to their urban counterparts. This study employs human-centered participatory co-design, involving community stakeholders in developing a multi-level PA intervention named Hoosier Sport. The primary hypothesis is the co-design sessions leading to the development of a testable intervention protocol. METHODS: Two co-design teams, each consisting of six children and six adults, were formed using human-centered participatory co-design facilitated by research faculty and graduate students. The process involved five co-design sessions addressing problem identification, solution generation, solution evaluation, operationalization, and prototype evaluation. Thematic analysis was employed to identify key themes and intervention components. RESULTS: Child co-designers (n = 6) ranged from 6th to 8th grade, averaging 12.6 years (SD = 1.8), while adult co-designers (n = 6) averaged 43.3 years (SD = 8.08). Thematic analysis revealed children emphasizing autonomy, the freedom to choose physical and non-physical activities, and the importance of building peer relationships during PA. Adult interviews echoed the importance of autonomy and choice in activities, with a focus on relatedness through positive role modeling. CONCLUSION: The prototype intervention and implementation strategies developed constitute a testable intervention aligned with Phase 1 of the ORBIT model. This testable prototype lays the groundwork for a collaborative campus-community partnership between the university and the local community, ensuring mutual benefits and sustainable impact.
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Exercício Físico , Esportes , Criança , Adulto , Humanos , Instituições Acadêmicas , Estilo de Vida , EstudantesRESUMO
BACKGROUND: Patient satisfaction is an important indicator of quality of care, but its measurement remains challenging. The Consumer Emergency Care Satisfaction Scale (CECSS) was developed to measure patient satisfaction in the emergency department (ED). Although this is a valid and reliable tool, several aspects of the CECSS need to be improved, including the definition, dimension, and scoring of scales. PURPOSE: The purpose of this study was to examine the construct validity of the CECSS and make suggestions on how to improve the tool to measure overall satisfaction with ED care. METHODS: We administered 2 surveys to older adults who presented with a fall to the ED and used electronic health record data to examine construct validity of the CECSS and ceiling effects. RESULTS: Using several criteria, we improved construct validity of the CECSS, reduced ceiling effects, and standardized scoring. CONCLUSION: We addressed several methodological issues with the CECSS and provided recommendations for improvement.
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The objective of this scoping review is to examine current evidence regarding unpaid/family caregivers' experiences during older adults' hospital-to-home transitions to identify gaps and opportunities to involve caregivers in transitional care improvement efforts. Eligible articles focused on caregiver experience, outcomes, or interventions during older adults' hospital-to-home transitions. Our review identified several descriptive studies focused on exploring the caregiver experience of older adult hospital-to-home transitions and caregiver outcomes (such as preparedness, strain, burden, health, and well-being). Qualitative studies revealed challenges at multiple levels, including individual, interpersonal, and systemic. Few interventions have targeted or included caregivers to improve discharge education and address support needs during the transition. Future work should target underrepresented and marginalized groups of caregivers, and caregivers' collaboration with community-based services, social networks, or professional services. Work remains in developing and implementing interventions to support both older adult and caregiver needs.
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Cuidadores , Cuidado Transicional , Humanos , Idoso , Alta do Paciente , Pesquisa Qualitativa , HospitaisRESUMO
BACKGROUND: In-home direct antigen rapid testing (DART) plays a major role in COVID-19 mitigation and policy. However, perceptions of DART within high-risk, intellectually impaired child populations are unknown. This lack of research could negatively influence DART uptake and utility among those who stand to benefit most from DART. The purpose of this study was to describe caregivers' perceptions of an in-home COVID-19 DART regimen in children with medical complexity, including the benefits and limitations of DART use. METHODS: This qualitative study was a subproject of the NIH Rapid Acceleration of Diagnostics Underserved Populations research program at the University of Wisconsin. We combined survey data and the thematic analysis of semi-structured interview data to understand caregivers' perceptions of in-home COVID-19 testing and motivators to perform testing. Caregivers of children with medical complexity were recruited from the Pediatric Complex Care Program at the University of Wisconsin (PCCP). Data were collected between May and August 2021. RESULTS: Among n = 20 caregivers, 16/20 (80%) of their children had neurologic conditions and 12/20 (60%) used home oxygen. Survey data revealed that the largest caregiver motivators to test their child were to get early treatment if positive (18/20 [90%] of respondents agreed) and to let the child's school know if the child was safe to attend (17/20 [85%] agreed). Demotivators to testing included that the child could still get COVID-19 later (7/20 [35%] agreed), and the need for officials to reach out to close contacts (6/20 [30%] agreed). From interview data, four overarching themes described perceptions of in-home COVID-19 testing: Caregivers perceived DART on a spectrum of 1) benign to traumatic and 2) simple to complex. Caregivers varied in the 3) extent to which DART contributed to their peace of mind and 4) implications of test results for their child. CONCLUSIONS: Although participants often described DART as easy to administer and contributing to peace of mind, they also faced critical challenges and limitations using DART. Future research should investigate how to minimize the complexity of DART within high-risk populations, while leveraging DART to facilitate safe school attendance for children with medical complexity and reduce caregiver burden.
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COVID-19 , Cuidadores , COVID-19/diagnóstico , Teste para COVID-19 , Criança , Família , Humanos , Pesquisa QualitativaRESUMO
OBJECTIVE: To describe older adult patients' and care partners' knowledge broker roles during emergency department (ED) visits. BACKGROUND: Older adult patients are vulnerable to communication and coordination challenges during an ED visit, which can be exacerbated by the time and resource constrained ED environment. Yet, as a constant throughout the patient journey, patients and care partners can act as an information conduit, or knowledge broker, between fragmented care systems to attain high-quality, safe care. METHODS: Participants included 14 older adult patients (≥ 65 years old) and their care partners (e.g., spouse, adult child) who presented to the ED after having experienced a fall. Human factors researchers collected observation data from patients, care partners and clinician interactions during the patient's ED visit. We used an inductive content analysis to determine the role of patients and care partners as knowledge brokers. RESULTS: We found that patients and care partners act as knowledge brokers by providing information about diagnostic testing, medications, the patient's health history, and care accommodations at the disposition location. Patients and care partners filled the role of knowledge broker proactively (i.e. offer information) and reactively (i.e. are asked to provide information by clinicians or staff), within-ED work system and across work systems (e.g., between the ED and hospital), and in anticipation of future knowledge brokering. CONCLUSION: Patients and care partners, acting as knowledge brokers, often fill gaps in communication and participate in care coordination that assists in mitigating health care fragmentation.
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BACKGROUND: Patient experience is receiving increasing attention in the context of patient-centered care. However, there are relatively few instruments that measure patient experience that are valid and reliable. OBJECTIVE: In this study, we systematically review the literature on the Consumer Emergency Care Satisfaction Scale (CECSS) and examine its psychometric properties. METHODS: We conducted a systematic literature search in the Cumulative Index to Nursing and Allied Health Literature, PubMed, PsycINFO, and Web of Science databases on articles that contain information on the CECSS. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: Our systematic literature search resulted in 28 articles in which the CECSS was used. CONCLUSIONS: Results of our literature review show that from a psychometric perspective, the CECSS is a valid and reliable instrument. However, the results of our study also show that the CECSS has several weaknesses. We have made recommendations to improve the CECSS.
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Serviços Médicos de Emergência , Satisfação Pessoal , Humanos , PsicometriaRESUMO
Studying interactions faces methodological challenges and existing methods, such as configural diagramming, have limitations. This work demonstrates Epistemic Network Analysis (ENA) as an analytical method to construct configural diagrams. We demonstrated ENA as an analytical tool by applying this method to study dementia caregiver work systems. We conducted 20 semi-structured interviews with caregivers to collect caregiving experiences. Guided by the Patient Work System model, we conducted a directed content analysis to identify work system components and used ENA to study interactions between components. By using ENA to create configural diagrams, we identified five frequently occurring interactions, compared work system configurations of caregivers providing care at home and away from home. Although we were underpowered to determine statistically significant differences, we identified visual and qualitative differences. Our results demonstrate the capability of ENA as an analytical method for studying work system interactions through configural diagramming. Practitioner summary: A new methodology, Epistemic Network Analysis (ENA), was presented to better support the study of work system interactions through configural diagramming. ENA was applied to qualitative data to demonstrate the capabilities of this method to construct configural diagrams of the work system. This study successfully demonstrated that ENA can visually represent and describe work system configurations.
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Cuidadores , Humanos , Pesquisa QualitativaRESUMO
PURPOSE: To demonstrate the use and value of the Human Factors/Ergonomics-based Systems Engineering Initiative for Patient Safety (SEIPS) family of work system models for studying and improving patient work. DATA SOURCES: We conducted a review of the published empirical literature applying the SEIPS family of work system models for patient work. STUDY SELECTION: Included studies had to apply one of the SEIPS family of work system models to study patient work; be published in a peer-reviewed journal in English and include analysis of data. We identified 16 articles that met our inclusion criteria. DATA EXTRACTION: For each study, we extracted settings and situations in which models were applied; research design; study methods; model(s) used; type and number of study participants; study objective(s); whether the study included an intervention; specific aspects of the model used; knowledge generated about patient work and benefits of using the models. RESULTS OF DATA SYNTHESIS: Our analysis revealed that a majority of studies were conducted in the United States, used qualitative or mixed methods and employed a variety of data collection techniques to study adult patient populations with chronic illness and their informal caregivers and healthcare providers performing patient work in the home and clinical setting. The studies resulted in a variety of useful products, demonstrating several benefits of using the models. CONCLUSION: Our review has demonstrated the value of using the SEIPS family of work systems models to study and improve patient and family contributions to health-related work.
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Ergonomia , Segurança do Paciente , Adulto , Cuidadores , Doença Crônica , HumanosRESUMO
Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.
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Cuidadores , Demência , Família , Humanos , TecnologiaRESUMO
Managing chronic illness requires personal health information management (PHIM) to be performed by lay individuals. Paramount to understanding the PHIM process is understanding the sociotechnical system in which it frequently occurs: the home environment. We combined distributed cognition theory and the patient work system model to investigate how characteristics of the home interact with the cognitive work of PHIM. We used a 3D virtual reality CAVE that enabled participants who had been diagnosed with diabetes (N = 20) to describe how they would perform PHIM in the home context. We found that PHIM is distinctly cognitive work, and rarely performed 'in the head'. Rather, features of the physical environment, tasks, people, and tools and technologies present, continuously shape and are shaped by the PHIM process. We suggest that approaches in which the individual (sans context) is considered the relevant unit of analysis overlook the pivotal role of the environment in shaping PHIM. Practitioner Summary: We examined how Personal Health Information Management (PHIM) is performed in the homes of diabetic patients. We found that approaches to studying cognition that focus on the individual, to the exclusion of their context, overlook the pivotal role of environmental, social, and technological features in shaping PHIM.
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Doença Crônica/psicologia , Diabetes Mellitus/psicologia , Gestão da Informação em Saúde/métodos , Registros de Saúde Pessoal/psicologia , Autogestão/psicologia , Adulto , Idoso , Cognição , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Teoria Psicológica , Características de Residência , Autogestão/métodos , Adulto JovemRESUMO
Older adults discharged from the hospital to skilled home health care (SHHC) are at high risk for experiencing suboptimal transitions. Using the human factors approach of shadowing and contextual inquiry, we studied the workflow for transitioning older adults from the hospital to SHHC. We created a representative diagram of the hospital to SHHC transition workflow, we examined potential workflow variations, we categorized workflow challenges, and we identified artifacts developed to manage variations and challenges. We identified three overarching challenges to optimal care transitions-information access, coordination, and communication/teamwork. Future investigations could test whether redesigning the transition from hospital to SHHC, based on our findings, improves workflow and care quality.
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Agências de Assistência Domiciliar/normas , Percepção , Cuidado Transicional/normas , Fluxo de Trabalho , Idoso , Idoso de 80 Anos ou mais , Continuidade da Assistência ao Paciente , Comportamento Cooperativo , Feminino , Agências de Assistência Domiciliar/tendências , Visitadores Domiciliares/psicologia , Hospitais/normas , Humanos , Masculino , Enfermeiros de Saúde Comunitária/psicologia , Alta do Paciente/normas , Transferência de Pacientes/métodos , Transferência de Pacientes/normas , Pesquisa QualitativaRESUMO
OBJECTIVE: To develop a checklist for use during pediatric trauma resuscitation and test its effectiveness during simulated resuscitations. BACKGROUND: Checklists have been used to support a wide range of complex medical activities and have effectively reduced errors and improved outcomes in different medical settings. Checklists have not been evaluated in the domain of trauma resuscitation. METHODS: A focus group of trauma specialists was organized to develop a checklist for pediatric trauma resuscitation. This checklist was then tested in simulated trauma resuscitations to evaluate its impact on team performance. Resuscitations conducted with and without the checklist were compared using the Advanced Trauma Life Support (ATLS) performance score, designed to measure adherence to ATLS protocol, and surveys of team members' subjective workload. RESULTS: The focus group generated a checklist with 56 items divided into 5 sections corresponding to different phases of trauma resuscitation. In simulation testing, the total ATLS performance score was 4.9 points higher with a checklist than without (P < 0.001), with most of this difference related to improvement in performance of the secondary survey (+3.3 points, P < 0.001). Overall, workload scores were not affected by the addition of the checklist. CONCLUSIONS: Implementing a checklist during simulated pediatric trauma resuscitation improves adherence to the ATLS protocol without increasing the workload of trauma team members.
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Cuidados de Suporte Avançado de Vida no Trauma/normas , Lista de Checagem , Competência Clínica , Fidelidade a Diretrizes , Equipe de Assistência ao Paciente/normas , Melhoria de Qualidade , Ressuscitação/normas , Cuidados de Suporte Avançado de Vida no Trauma/métodos , Criança , Técnica Delphi , Grupos Focais , Hospitais Pediátricos , Humanos , Modelos Lineares , Guias de Prática Clínica como Assunto , Ressuscitação/métodos , Centros de Traumatologia , Carga de TrabalhoRESUMO
BACKGROUND AND OBJECTIVES: Little is known about how older adults engage with multiple sources of support and resources during transitions from hospital to home, a period of high vulnerability. This study aims to describe how older adults identify and collaborate with a support team, including unpaid/family caregivers, health care providers, and professional and social networks, during the transition. RESEARCH DESIGN AND METHODS: This study utilized grounded theory methodology. One-on-one interviews were conducted with adults aged 60 and older following their discharge from a medical/surgical inpatient unit in a large midwestern teaching hospital. Data were analyzed using open, axial, and selective coding. RESULTS: Participants (Nâ =â 25) ranged from 60 to 82 years of age, 11 were female, and all participants were White, non-Hispanic. They described a process of identifying a support team and collaborating with that team to manage at home and progress their health, mobility, and engagement. Support teams varied, but included collaborations between the older person, unpaid/family caregiver(s), and their health care providers. Their collaboration was impacted by the participant's professional and social networks. DISCUSSION AND IMPLICATIONS: Older adults collaborate with multiple sources of support and this collaboration is a dynamic process that varies across phases of their transition from hospital to home. Findings reveal opportunities for assessing individual's support and social networks, in addition to health and functional status, to determine needs and leverage resources during transitions in care.
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Transição do Hospital para o Domicílio , Hospitais , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Teoria Fundamentada , Centros Médicos Acadêmicos , Pessoal de Saúde , Cuidadores , Pesquisa QualitativaRESUMO
BACKGROUND: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support. OBJECTIVE: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users. METHODS: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus. RESULTS: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person. CONCLUSIONS: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.
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Doença de Alzheimer , Cuidadores , Pesquisa Qualitativa , Mídias Sociais , Humanos , Cuidadores/psicologia , Doença de Alzheimer/psicologia , Doença de Alzheimer/enfermagem , Idoso , Apoio Social , Feminino , Masculino , Demência/psicologia , Demência/enfermagem , Estados Unidos/epidemiologia , Sobrecarga do Cuidador/psicologiaRESUMO
LAY ABSTRACT: Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.
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Transtorno Autístico , Acessibilidade aos Serviços de Saúde , Humanos , Adulto , Transtorno Autístico/terapia , Transtorno Autístico/psicologia , Masculino , Feminino , Atenção à Saúde , Pessoa de Meia-Idade , Segurança do Paciente , Adulto JovemRESUMO
Objective: Care partners of persons living with dementia (PLWD) often feel unprepared to care for their loved ones. Improving PLWD care partner identification and education during hospital stays can improve preparedness. This retrospective EHR study investigated PLWD characteristics that may relate to care partner identification, education, and teaching methods during hospital stays. Methods: Encounters from a Midwestern academic healthcare system were used. Patients were over 18, had a documented dementia diagnosis, were admitted to the hospital for at least 24 h, and had information documented in care partner or education data fields (N = 7982). Logistic regressions assessed patient's demographics, care partner identification and education. Chi-square tests compared education teaching methods and patient discharge location. Results: PLWD's who were unmarried, discharged to other care facilities, or received the diagnosis "degeneration of nervous system due to alcohol" were associated with lacking care partner identification. Care partners of unmarried PLWDs or those with the diagnosis "Alzheimer's disease, unspecified" received less education. Multiple teaching methods were associated with discharge location. Conclusion: Multiple characteristics were related to PLWD care partner identification and education differences during hospital stays. Innovation: Novel analyses highlight need for a protocol to systematically prepare dementia care partners.
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OBJECTIVE: Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners' confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners' confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners' level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners' experiences of financial planning. METHODS: We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners' confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups' levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data. RESULTS: The financial planning topics in which participants (N = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness. CONCLUSIONS: These results underscore the need for tailored interventions and technologies that increase care partners' confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out.
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Since most care for children with medical complexity (CMC) is delivered daily in communities by multiple caregiving individuals, that is, caregiving networks, tools to assess and intervene across these networks are needed. This study evaluated the feasibility of applying social network analysis (SNA) to describe caregiving networks. Because hospitalization is among the most frequently used outcomes for CMC, exploratory correlations between network characteristics and CMC hospital use were evaluated. Within 3 weeks, the goal network enrollment was achieved, and all feasibility measures were favorable. Network characteristics correlated with hospital use, that is, smaller, denser networks, with more closed-loop communication correlated with fewer hospital days. Networks with more professional caregivers also correlated with fewer hospital days. SNA is a feasible tool to study CMC caregiving networks. Preliminary data support rigorous hypothesis testing using SNA methods. Network-based interventions to improve CMC health may be an important future direction.
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Cuidadores , Análise de Rede Social , Criança , Humanos , Estudos de Viabilidade , Hospitalização , HospitaisRESUMO
BACKGROUND: Children with medical complexity (CMC) are uniquely vulnerable to medication errors and preventable adverse drug events because of their extreme polypharmacy, medical fragility, and reliance on complicated medication schedules and routes managed by undersupported family caregivers. There is an opportunity to improve CMC outcomes by designing health information technologies that support medication administration accuracy, timeliness, and communication within CMC caregiving networks. OBJECTIVES: The present study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a codesign process to identify: (1) medication safety challenges experienced by CMC caregivers and (2) design requirements for a mobile health application to improve medication safety for CMC in the home. METHODS: Study staff recruited family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program to participate in virtual codesign sessions. During sessions, the facilitator-guided codesigners in generating and converging upon medication safety challenges and design requirements. Between sessions, the research team reviewed notes from the session to identify design specifications and modify the prototype. After design sessions concluded, each session recording was reviewed to confirm that all designer comments had been captured. RESULTS: A total of N = 16 codesigners participated. Analyses yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines. Supporting quotations from codesigners and prototype features associated with each design requirement are presented. CONCLUSION: This study generated design requirements for a tool that may improve medication safety by creating distributed situation awareness within the caregiving network. The next steps are to pilot test tools that integrate these design requirements for usability and feasibility, and to conduct a randomized control trial to determine if use of these tools reduces medication errors.