The impact of internet connectivity when conducting a virtual clinical trial with participants living in rural areas.

Aim: The purpose of this secondary analysis was to describe issues related to internet connections during a virtual randomized clinical trial (v-RCT) that included family caregiver participants living in rural areas.

Background: Success of v-RCTs depends on reliable, high-quality internet access, which can be problematic in rural areas.

Methods: Interventionists documented connectivity issues and corrections made to address connectivity in a narrative note after each virtual visit with family caregivers enrolled in a v-RCT.

Transitional Palliative Care for Family Caregivers: Outcomes From a Randomized Controlled Trial.

Context: Patients receiving inpatient palliative care often face physical and psychological uncertainties during transitions out of the hospital. Family caregivers often take on responsibilities to ensure patient safety, quality of care, and extend palliative care principles, but often without support or training, potentially compromising their health and well-being.

Objectives: This study tested an eight-week intervention using video visits between palliative care nurse interventionists and caregivers to assess changes in caregiver outcomes and patient quality of life.

Healthcare use and out-of-pocket costs for rural family caregivers and care recipients in a randomized controlled trial.

Background: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs.

Implementation Costs of Technology-Enhanced Transitional Palliative Care for Rural Caregivers.

Objectives: Compared to urban family caregivers (FCG), rural FCG experience greater burdens accessing coordinated care for their loved ones during and after hospitalization. The impact of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms.

A Methodological Approach for Documenting Multi-Component Interventions Targeting Family Caregivers.

Managing the complex care needs of seriously ill patients transitioning from hospital to home can have detrimental effects on family caregivers (FCG). Multi-component interventions tailored to FCG needs are most effective at reducing caregiver burden, distress, and depression. However, gaps exist in determining best methods to assess, document, and analyze intervention components for FCGs.

Dignity Conserving Therapy: An Intervention for Addressing Psychosocial and Existential Distress in Patients with Serious Illness.

Patients with serious illnesses may experience existential and psychosocial distress contributing to their pain and suffering. Addressing existential distress is challenging and may require a multidisciplinary approach. Often, providers feel uncomfortable or ill equipped to care for patients suffering from this distress.

Improving Transitions in Care for Patients and Family Caregivers Living in Rural and Underserved Areas: The Caregiver Advise, Record, Enable (CARE) Act.

In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care.

Death and Grieving for Family Caregivers of Loved Ones With Life-Limiting Illnesses in the Era of COVID-19: Considerations for Case Managers.

Purpose:: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers.

Integrating child health information systems in public health agencies.

Public health agencies at state and local levels are integrating information systems to improve health outcomes for children. An assessment was conducted to describe the extent to which public health agencies are currently integrating child health information systems (CHIS). Using online technology information was collected, to assess completed and planned activities related to integration of CHIS, maturity of these systems, and factors that influence decisions by public health agencies to pursue integration activities.

All Kids Count Connections: a community of practice on integrating child health information systems.

Integrated child health information systems consolidate data about multiple health care services a child receives into information useful to families, private health care providers, public health officials, and others. The challenges to successful integration faced by public health agencies are similar, yet system integration projects have historically struggled in isolation to overcome these barriers. All Kids Count created a community of practice called Connections to bring together 11 state and local public health agencies engaged in child health information system integration projects to learn from each other, capture best practices, and collaboratively address challenges.

Assessing organizational readiness and capacity for developing an integrated child health information system.

The Tool for Assessment and Planning (the Tool) assists public health teams in designing child health information integration projects from planning through early implementation. The tool is a companion to Integration of Newborn Screening and Genetic Services Systems with Other Maternal and Child Health Systems: A Sourcebook for Planning and Development (the Sourcebook). The Tool and the Sourcebook focus on 9 key elements considered critical to supporting information systems integration.

Key elements for successful integrated health information systems: lessons from the States.

The Genetic Services Branch, Maternal and Child Health Bureau of the Health Services and Resources Administration has provided funding to state health departments to integrate their newborn dried blood-spot screening programs with other early child health information systems since 1999. In 2001, All Kids Count conducted site visits to these grantees to identify and describe best practices in planning, developing, and implementing their integration projects. The site visits were organized around 9 key elements considered critical to the success of an information systems integration project: leadership, project governance, project management, stakeholder involvement, organizational and technical strategy, technical support and coordination, financial support and management, policy support and evaluation.

All Kids Count 1991-2004: developing information systems to improve child health and the delivery of immunizations and preventive services.

The All Kids Count program began in late 1991 with funding from The Robert Wood Johnson Foundation. The purpose was to improve child health and the delivery of immunizations and preventive services through the development of health information systems. All Kids Count concluded in mid-2004 having worked directly with 38 state and local health agencies through its grant and Connections program.

Developing performance measures for immunization registries.

Quantitative performance indicators were developed to monitor immunization registry progress of the 16 All Kids Count (AKC) grantees. Results were reviewed to determine if (1) the indicators measured immunization registry progress, (2) the results could be compared across AKC projects, and (3) other immunization registries could use the indicators. The study found that the AKC performance indicators provide a useful template for registries to measure their progress toward developing fully mature registries.