scholarly journals Efforts by the National Academy for State Health Policy

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 178-179
Author(s):  
Wendy Fox-Grage
Keyword(s):  
Palliative Care ◽  
Health Policy ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Family Caregiving ◽  
Advisory Council ◽  
State Health ◽  
State Health Policy ◽  
Advance Care ◽  
Services And Supports

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.

scholarly journals Activities Under the RAISE Family Caregiving Act: Developing a National Strategy to Support Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 64-64
Author(s):  
Wendy Fox-Grage
Keyword(s):  
Health Policy ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Family Caregiving ◽  
Advisory Council ◽  
National Strategy ◽  
State Health ◽  
State Health Policy ◽  
Concrete Action ◽  
Support Family

Abstract This presentation describes the unique collaboration between The John A. Hartford Foundation, the Administration or Community Living (ACL), and the National Academy for State Health Policy (NASHP) in supporting the RAISE Act Family Caregiver Resource and Dissemination Center, and the goals and activities of the RAISE Act Family Caregiving Advisory Council. Most importantly, she will present the the development of recommendations for a national strategy to support family caregivers involving all levels of government as well as private-sector actors. These recommendations fall into five primary areas, which Fox-Grage will discuss in detail. She will also discuss the Center’s development of family caregiving resources for state and federal policymakers and other stakeholders as well as next steps in turning the Council’s recommendations into concrete action.

scholarly journals Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention

2019 ◽  
pp. bmjspcare-2019-001766 ◽  
Author(s):  
Maureen E Lyon ◽  
Jessica D Thompkins ◽  
Karen Fratantoni ◽  
Jamie L Fraser ◽  
Sandra E Schellinger ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Rare Diseases ◽  
Assessment Tool ◽  
Advisory Council ◽  
Medical Decision ◽  
Care Needs ◽  
Pilot Testing ◽  
Care Intervention ◽  
Advance Care

ObjectiveTo develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)).MethodsFACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed.ResultsParents were mean age 40 years, and children 7 years. Children’s diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial.ConclusionsFACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

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 ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Advisory Council ◽  
Financial Security ◽  
Diverse Populations ◽  
Policy Changes ◽  
Publicity Campaign ◽  
Services And Supports

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.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Using Data From the Healthcare Cost and Utilization Project for State Health Policy Research

Medical Care ◽  
2019 ◽  
Vol 57 (11) ◽  
pp. 855-860
Author(s):  
Michel Boudreaux ◽  
Anuj Gangopadhyaya ◽  
Sharon K. Long ◽  
Zeynal Karaca
Keyword(s):  
Health Policy ◽  
Healthcare Cost ◽  
Policy Research ◽  
State Health ◽  
State Health Policy ◽  
Using Data

A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care

2003 ◽  
Vol 1 (4) ◽  
pp. 353-365 ◽  
Author(s):  
PETER HUDSON
Keyword(s):  
Palliative Care ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Intervention Development ◽  
World Health ◽  
The Family ◽  
Key Variables ◽  
Supportive Interventions ◽  
The Impact

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

Sign in / Sign up

Export Citation Format

Share Document