scholarly journals Findings From RAISE Act Research: Family Caregiver Priorities

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 64-64
Author(s):  
Pamela Nadash ◽  
Eileen Tell ◽  
Carol Regan ◽  
Taylor Jansen ◽  
Andrew Alberth ◽  
...  

Abstract To understand the needs and policy priorities of family caregivers, the Advisory Council commissioned research: first, through a request for information (RFI) in the Federal Register, which garnered roughly 1600 responses. Qualitative analysis revealed that family caregivers have diverse needs spanning their financial security as well as their needs for caregiver-focused supports; recommendations were similarly diverse, including requests for caregiver pay, improved access to respite, and other major policy changes. These findings fed into 12 focus groups focusing on diverse populations of caregivers, yielding more depth around caregiver priorities. Six stakeholder listening sessions built on these results, aiming to develop concrete suggestions for a national caregiver strategy – a key outcome of the Advisory Council. Such strategies ranged from a major publicity campaign creating awareness of family caregivers, to suggestions on implementing caregiver assessments, to more ambitious goals such as improved financing for long term services and supports more broadly.

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 178-179
Author(s):  
Wendy Fox-Grage

Abstract The National Academy for State Health Policy hosts both the RAISE Act Family Caregiving Resource and Dissemination Center and the Hub for State Strategies to Build and Support Palliative Care, with generous funding from The John A. Hartford Foundation. The value of supporting individuals with serious illness and complex conditions as well as their family caregivers through telehealth, care management, advance care planning, and other added family caregiver supports has been especially evident during the COVID-19 pandemic. Policymakers are now grappling with how to restructure hard-hit health care and long-term services and supports systems to better support these individuals and their family caregivers. The State Hub provides concrete resources for states working to implement and expand high-quality palliative care, and the RAISE Center is assisting the Family Caregiving Advisory Council with creating the country’s first national Family Caregiver Strategy.


Author(s):  
Susan C. Reinhard Reinhard ◽  
Ari Houser Houser ◽  
Enid Kassner Kassner ◽  
Robert Mollica Mollica ◽  
Kathleen Ujuari Ujuari ◽  
...  

2020 ◽  
Author(s):  
Jessica Kasten ◽  
Elizabeth Lewis ◽  
Sari Lelchook ◽  
Lynn Feinberg ◽  
Edem Hado

2020 ◽  
Author(s):  
Jessica Kasten ◽  
Elizabeth Lewis ◽  
Sari Lelchook ◽  
Lynn Feinberg ◽  
Edem Hado

2020 ◽  
Author(s):  
Jessica Kasten ◽  
Elizabeth Lewis ◽  
Sari Lelchook ◽  
Lynn Feinberg ◽  
Edem Hado

2020 ◽  
Author(s):  
Jessica Kasten ◽  
Elizabeth Lewis ◽  
Sari Lelchook ◽  
Lynn Feinberg ◽  
Edem Hado

2001 ◽  
Vol 19 (1) ◽  
pp. 125-142 ◽  
Author(s):  
MARGARET J. BULL

Family caregivers are the mainstay of long-term care, as they enable chronically ill elders and children to remain at home. The majority of family caregivers are women and historically their caregiving role has been viewed as an extension of their roles as wife and mother. Although numerous studies report the stresses associated with family caregiving and are predictors of burden, less attention has been given to interventions for family caregivers. The objective of this review is to examine reports of interventions to reduce family caregiver burden, to consider their implications for nursing practice, and to identify directions for future nursing research.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 440-440
Author(s):  
Tonie Sadler ◽  
Kevin Yan ◽  
Daniel Brauner ◽  
Harold Pollack ◽  
R Tamara Konetzka

Abstract COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Using purposive sampling, 63 family caregivers across eight states participated in open-ended qualitative interviews (2019-2020), until thematic saturation was reached. Questions broadly examined caregivers’ experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and supports expenditures. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers also displayed flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care tools such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Given the persistent challenges posed by COVID-19, long-term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. There is a need to expand telemedicine and other remote healthcare tools, while adapting these technologies to the needs of families. Also, procedures are needed for safe pathways to utilize HCBS and nursing care during a pandemic including communication supports, sufficient PPE, increased staffing, and utilization of evidence-based protocols.


2020 ◽  
Author(s):  
Jessica Kasten ◽  
Elizabeth Lewis ◽  
Sari Lelchook ◽  
Lynn Feinberg ◽  
Edem Hado

2020 ◽  
Author(s):  
Jessica Kasten ◽  
Elizabeth Lewis ◽  
Sari Lelchook ◽  
Lynn Feinberg ◽  
Edem Hado

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