scholarly journals Family Caregiving Policies: Where We Are Now

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 63-64
Author(s):  
Pamela Nadash ◽  
Rani Snyder ◽  
Eileen Tell
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
State Level ◽  
Advisory Council ◽  
Primary Data ◽  
Stakeholder Groups ◽  
Current State ◽  
The Status ◽  
Building Activities ◽  
Support Family

Abstract This session reviews prospects for advancing family caregiving policy under the Biden Administration, by reporting on the RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregivers Act, enacted in January 2018. The Act directs the Secretary of HHS to develop a national family caregiving strategy, and supports research and consensus-building activities, in collaboration with The John A. Hartford Foundation. It aims to identify actions that communities, providers, government, and others may take to recognize and support family caregivers. To this end, the Administration for Community Living (ACL) has convened an Advisory Council, comprising 15 voting members from various stakeholder groups, to guide the effort; the project also commissioned primary data collection on caregiver priorities and recommendations, using a Request for Information (RFI) in the Federal Register garnering roughly 1600 responses, 12 focus groups with diverse family caregivers, and listening sessions with stakeholder groups. Wendy Fox-Grage, of the National Academy on State Health Policy, which supports RAISE Act activities, will describe the project’s scope of work and activities to date. Pamela Nadash from the LeadingAge LTSS Center @UMass Boston, who leads the data analysis component, will present findings from the commissioned research, while Molly Evans, (MA Executive Office of Elder Affairs) will review the current state of state-level policies aimed at supporting family caregivers. The symposium will conclude with Grace Whiting, CEO of the National Alliance for Caregiving, who will present an advocate’s perspective on the status of family caregiving policy. Eileen Tell, of ET Consultants, will act as discussant.

scholarly journals State-Level Policy Actions to Support Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 64-64
Author(s):  
Molly Evans
Keyword(s):  
Family Caregivers ◽  
State Level ◽  
Policy Action ◽  
Caregiver Support ◽  
Paid Leave ◽  
Legislative Action ◽  
The Status ◽  
Support Employment ◽  
Unpaid Leave ◽  
Support Family

Abstract The stresses created by the growing need for family caregivers have failed to prompt federal policy action; in its absence, states are stepping up. This review of state policies that support employment among family caregivers found six main categories of legislative action: paid leave; expanding federally mandated unpaid leave; paid sick time; unemployment insurance for job loss attributable to caregiving duties; establishing family caregivers as a protected classification in employment discrimination; and flexible or alternative work schedules. Despite the demand for policies that support and empower working caregivers, a minority of states have passed such legislation; to date, 9 states have implemented paid family leave; 14 have implemented mandatory sick leave legislation; and 14 have expanded FMLA. This study discusses state-level policy actions, reviews the status and importance of these policies, and finds that despite gaps in caregiver support legislation at the state level, there is significant and promising momentum.

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.

The open access landscape in Zimbabwe: the case of university libraries in ZULC

2014 ◽  
Vol 32 (1) ◽  
pp. 69-82 ◽  
Author(s):  
Lovemore Kusekwa ◽  
Aston Mushowani
Keyword(s):  
Open Access ◽  
Primary Data ◽  
University Libraries ◽  
General Picture ◽  
Content Type ◽  
Institutional Repositories ◽  
Current State ◽  
Qualitative Research Methodology ◽  
The Status ◽  
Access Policies

Purpose – The paper aims to focus on the current state of open access (OA) initiatives in Zimbabwean universities. The paper specifically reports the initiatives at Zimbabwean universities regarding institutional repositories that promote OA and other digital OA collections. Design/methodology/approach – A qualitative research methodology was adopted. Questionnaires were used as the primary data collection method for this research. The research sought to address the following specific areas: the state of institutional repositories and open access in Zimbabwe, the discoverability of content, open access policies and mandates, the benefits of open access in Zimbabwe, and future plans for institutional OA. A total of eight out of 12 universities responded to the questionnaire. The data provided by the universities involved in the research were summarised to give a general picture of the open access landscape in Zimbabwe. Findings – The current initiatives in the universities involved in this survey indicate that most universities in Zimbabwe are going to have institutional repositories that promote open access to information. Most institutions in Zimbabwe are already working on putting open access policies in place in a bid to promote open access. Originality/value – The research will shed more light on the status quo of open access initiatives in Zimbabwe, particularly with regards to institutional repositories, open access policies and open access mandates.

scholarly journals Innovations in Workforce Education for Family Caregiving

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 401-402
Author(s):  
Kathryn Sexson ◽  
Jennifer Mongoven ◽  
Lisa Badovinac ◽  
Theresa Harvath
Keyword(s):  
Family Caregivers ◽  
Undergraduate Students ◽  
Clinical Education ◽  
Professional Education ◽  
Family Caregiving ◽  
Workforce Education ◽  
Care Team ◽  
Care Plan ◽  
Education Programs ◽  
Support Family

Abstract The number of adults providing care to a family member in the US is estimated at more than 50 million, with nearly half of those individuals providing complex care. National organizations, such as AARP, and federal programs, such as the Geriatric Workforce Enhancement Program, have identified the family caregiver as an integral member of the health care team, yet there is a paucity of clinical workforce education programs for how best to partner and support family caregivers. A virtual summit was held in September 2020 to highlight existing educational programs designed to prepare undergraduate and graduate health professional students or practicing clinicians in their efforts to support family caregivers. The meeting consisted of a keynote, 6 podium presentations and 12 poster presentations. Primary themes emerged around target learners, curricula topics, and outcomes. Programs targeted learners from across the workforce, from undergraduate students to continuing professional education programs, with the majority targeting graduate (masters and doctoral) learners. Several programs were interprofessional in development, delivery and target learner. Curricula topics varied across programs and included caregiver assessments, multicultural considerations, communication, care plan development and risk screening. Education outcomes primarily focused on assessment of participants’ confidence and knowledge. The summit highlighted that the topic of family caregiving is included in clinical education inconsistently, if at all. The summit helped identify gaps in education, curriculum development, and the need for common learning outcomes to strengthen a clinician’s ability to support family caregivers as part of the care team.

scholarly journals Burdens of Family Caregiving at the End of Life

2013 ◽  
Vol 36 (3) ◽  
pp. 121 ◽  
Author(s):  
Kelli I Stajduhar
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Palliative Home Care ◽  
Effective Interventions ◽  
Support Tools ◽  
Caregiver Needs ◽  
Care At Home ◽  
Financial Burdens ◽  
Support Family ◽  
At Home

A patient’s ability to be cared for and to die at home is heavily dependent upon the efforts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and financial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most effective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most effective interventions. Clinically effective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided.

Assessing a WeChat-based integrative family intervention (WIFI) for schizophrenia: protocol for a type 2 hybrid effectiveness-implementation stepped-wedge cluster randomized trial

2020 ◽  
Author(s):  
YU YU ◽  
Tong-xin Li ◽  
Shi-jun Xi ◽  
Yi-lu Li ◽  
Qi-rui Li ◽  
...  
Keyword(s):  
Mental Illness ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Cost Effective ◽  
Cluster Randomized Trial ◽  
Family Intervention ◽  
Cluster Randomized ◽  
Support Family

Abstract Background Schizophrenia is a persistent and debilitating mental illness, whose prognosis depends largely on supportive care and systematic treatment. In 2016, the Chinese government instituted a Reward Policy to financially support family caregiving of serious mental illness, including schizophrenia. However, family caregivers are still faced with many other challenges, such as lack of knowledge about serious mental illness, skills specific to family caregiving, social support, and other resources to assist with caring for a family member with schizophrenia. How to support family caregiving in an accessible, affordable, feasible and cost-effective way remains unresolved. The wide spread use of WeChat provides a promising and cost-effective medium for health intervention delivery. The current study aims to assess a WeChat WeChat-based integrative family intervention (WIFI) embedded in the Reward Policy to support family caregiving of schizophrenia. Methods We will conduct a type 2 hybrid effectiveness-implementation study to test both the effect of and the implementation process of the WIFI program. The program will include three core components: 1) psycho-education through WeChat Official Account (WOA), 2) peer support through WeChat chat group, and 3) professional support through WeChat video chat. A rigorous stepped wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with the Changsha psychiatric hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every two months during an 8-month intervention period in four clusters of 3 communities each. All clusters will receive the usual financial benefit of the Reward Policy as the control condition, and then successively and in random order, will cross over to the WIFI intervention at 2-month intervals until the study ends. Outcomes will be assessed for both family caregivers and the family member with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support and coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. Schizophrenia individuals will be assessed for their symptoms and functioning, quality of life, recovery and rehospitalization. Cost data such as costs of the intervention, health care utilization, and costs associated with lost productivity will also be collected. In addition, we will collect process data including fidelity and quality of program implementation as well as users’ attitudes will also be collected. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling (GLMM) with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost effectiveness ratios (ICERs). Qualitative analysis will use the grounded theory approach and immersion-crystallization process. All statistical analyses will be conducted according to the intention-to-treat principle. Discussion This is the first hybrid effectiveness-implementation study to test a WeChat-based mHealth intervention to support family caregiving of schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for schizophrenia individuals. If found to be effective, the intervention could potentially be integrated into current national policy to support family caregiving. The intervention could also be adapted for use with other populations with a persistent and disabling condition.

scholarly journals The Politics of Caregiving: Taking Stock of State-Level Policies to Support Family Caregivers

2020 ◽  
Vol 30 (2) ◽  
pp. 62-66 ◽  
Author(s):  
Walter D Dawson ◽  
Lauren R Bangerter ◽  
Michael Splaine
Keyword(s):  
Family Caregivers ◽  
State Level ◽  
Support Family

scholarly journals The Experience of Working Family Caregivers: Implications for a National Paid Leave Policy

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 721-721
Author(s):  
Tiffany Washington ◽  
Lynn Friss Feinberg
Keyword(s):  
Family Caregivers ◽  
State Level ◽  
The United States ◽  
Advisory Council ◽  
Family Leave ◽  
Full Time ◽  
Grandparents Raising Grandchildren ◽  
Paid Leave ◽  
Paid Family Leave ◽  
Leave Policy

Abstract Family caregivers provide the bulk of unpaid care to older adults. The typical family caregiver is a 49-year-old woman who works full time and simultaneously provides an average of 24 hours of care per week for an older relative. Unfortunately, their caregiving duties places them at risk for lost wages and termination due to frequent interruptions at work, especially in the absence of a national paid family leave policy. It is possible that such a policy could mitigate these risks; however, the United States is the only developed nation that lacks a national paid family leave policy for all workers. This symposium will highlight the psychosocial, economic, and health issues experienced by working caregivers, and conclude by linking presenters’ findings to implications for a national paid leave policy. To start, presenter one will describe findings from a scoping review on workplace experiences of female family caregivers. Next, presenter two will describe findings from a systematic review to explore predictors of the adoption and implementation of state-level paid family leave policies. Presenter three’s study examines interest in supportive services among working and non-working Black caregivers in the Deep South. Presenter four will describe factors associated with healthcare utilization of working caregivers using data from the Regional Healthcare Partnership – Region 17 Health Assessment Survey. The final presenter, HHS Advisory Council to Support Grandparents Raising Grandchildren co-chair, will describe development of policy initiatives to identify, coordinate, and promote information, resources, and best practices for working grandparents raising grandchildren.

Family Caregiving as a Service Niche for Agencies: Findings from a Study of Philanthropic Trends

2002 ◽  
Vol 83 (5) ◽  
pp. 449-456 ◽  
Author(s):  
Roslyn H. Chernesky ◽  
Irene A. Gutheil
Keyword(s):  
Family Caregivers ◽  
Older Adult ◽  
Family Caregiving ◽  
National Study ◽  
Older Population ◽  
National Agenda ◽  
Family Service ◽  
Family Service Agencies ◽  
Service Agencies ◽  
Support Family

Family elder caregiving is a relatively unsaturated and expanding service niche. The article reports on a national study of family elder caregiving initiatives that were funded by foundations between 1994 and 1999, and presents a sample of the diverse and innovative ways in which agencies have responded to the need of family members caring for older adult relatives. The authors suggest that there are many opportunities for family service agencies that wish to support family caregivers particularly since caregiving demands on families will continue to grow given our nation's burgeoning older population and funding appears encouraging now that caregiving is on the national agenda.

scholarly journals ARE POLICY AND PRACTICE CHANGE TO SUPPORT FAMILY CAREGIVERS ON THE RISE?

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S748-S748
Author(s):  
Lynn F Feinberg
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Health Condition ◽  
Practice Change ◽  
Policy And Practice ◽  
The Road ◽  
Culture Of Care ◽  
Centered Care ◽  
Family Centered ◽  
Support Family

Abstract The challenges and pressures of family caregiving for older relatives or friends are a reality of daily life. Better recognition of and support for family caregivers has emerged as a national health, economic and social priority that can no longer be ignored. Unlike previous generations, most (60%) family caregivers work at a paying job today in addition to caring for older relatives with a serious health condition or disability. Building a better system of care for older adults means changes in workplaces as well as health care and LTSS settings. This paper presents an analysis of the key challenges that family caregivers face, and highlights policy developments and practice change at the federal and state levels since 2015. The presentation addresses the importance of person- and family-centered care in everyday practice, and discusses the road ahead to change the culture of care.

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