scholarly journals MORE THAN MEETS THE EYE:  RELATIONAL AUTONOMY AND DECISION-MAKING BY ADULTS WITH DEVELOPMENTAL DISABILITIES

2015 ◽  
Vol 32 (2) ◽  
pp. 91 ◽  
Author(s):  
Eniola Salami ◽  
Bonnie Lashewicz
Keyword(s):  
Decision Making ◽  
Developmental Disabilities ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Critical Examination ◽  
Relational Autonomy ◽  
Canadian Law ◽  
Analyse Comparative ◽  
Adults With Developmental Disabilities

In Canadian law, the concept of autonomy is individualistic in nature, manifest as the capacity, or legal ability of an individual to actively understand the purpose and consequences of their actions according to whether they have faculties to comprehend and weigh risks and benefits.  Feminist scholars critique such conceptualizations of autonomy and, instead, argue the importance of “relational autonomy” which is predicated on the view that actions result from one’s own volition in combination with the influence of one’s social and relational connections. In this paper, we examine the dynamics and implications of relational autonomy in decision-making by adults with developmental disabilities by studying adults with developmental disabilities in interaction with their caregiving family members.  Our purpose is to contribute understandings of how and in what ways family caregiving relational contexts both support and hinder decision-making by adults with developmental disabilities.  We begin with an overview of conceptualizations and applications of autonomy, then illustrate relational autonomy dynamics through comparative analysis of data from two women with developmental disabilities who were interviewed together with their family caregivers about successes and struggles in giving and receiving care and making decisions. These two women, and their family caregivers (N=9) are selected from a larger sample of adults with developmental disabilities and their family caregivers (N = 26) because the contrasts, as well as the similarities, between their family care situations are striking, and taken together, illustrate a range of ways in which decision-making is supported and hindered.  We conclude by upholding the importance of relational autonomy for legal understandings of decision-making, yet we caution that critical examination of relationship dynamics is vital. En droit canadien, le concept de l’autonomie est un concept individualiste de par sa nature et est perçu comme l’aptitude, physique ou juridique, d’une personne à comprendre activement l’objet et les conséquences de ses actes en fonction de la question de savoir si elle possède les facultés voulues pour apprécier et soupeser les risques et les avantages en jeu. Des universitaires féministes critiquent ces conceptualisations de l’autonomie et mettent plutôt l’accent sur l’importance de l’« autonomie relationnelle », qui repose sur l’interaction entre la volonté de la personne et l’influence de ses contacts sociaux et relationnels. Dans le présent document, nous nous penchons sur la dynamique et sur les incidences de l’autonomie relationnelle dans les décisions que prennent les adultes handicapés en étudiant l’interaction d’adultes handicapés avec leurs aidants familiaux. Notre but est de favoriser une meilleure compréhension de la mesure dans laquelle les contextes relationnels dans lesquels se trouvent les aidants familiaux peuvent à la fois appuyer et entraver le processus de prise de décisions chez les adultes handicapés. Après avoir présenté un bref aperçu des conceptualisations et des applications de l’autonomie, nous illustrons la dynamique de l’autonomie relationnelle au moyen d’une analyse comparative de données provenant de deux femmes handicapées qui ont été interrogées ainsi que leurs aidants familiaux au sujet des défis et des réussites liés à la prestation et à la réception de soins et à la prise de décisions. Ces deux femmes et leurs aidants familiaux (N=9) ont été choisis à partir d’un plus grand échantillon d’adultes handicapés et de leurs aidants familiaux (N=26), parce que les contrastes, tout comme les similitudes, entre leurs situations sont frappants et que, examinées ensemble, ces données illustrent différentes façons dont la prise de décisions est appuyée et entravée. Nous concluons en insistant sur l’importance de l’autonomie relationnelle pour la compréhension des aspects juridiques de la prise de décisions, tout en soulignant qu’un examen critique de la dynamique des relations est vital.

scholarly journals WORK-RELATED OPPORTUNITY COSTS OF PROVIDING UNPAID FAMILY CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S135-S135
Author(s):  
Stipica Mudrazija
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Panel Study ◽  
Economic Value ◽  
Family Care ◽  
National Study ◽  
Nursing Facilities ◽  
Unpaid Care ◽  
Work Related ◽  
The Impact

Abstract Older Americans living in the community who need help with basic activities of daily living overwhelmingly rely on unpaid care provided most commonly by working-age family members. Because unpaid family care limits the demand for nursing facilities and reduces expenses paid by Medicaid and other government programs, previous estimates of its economic value have mostly focused on estimating the benefits of unpaid family care. However, to assess accurately the overall economic value of unpaid family care and define better the scope for policy intervention, it is also important to account for the costs of such care, yet our knowledge of their magnitude remains limited. This study assesses the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers, and calculates the related cost of forgone earnings today and in 2050. To do so, it matches family caregivers from the National Study of Caregiving with non-caregivers from the Panel Study of Income Dynamics, and uses projections from the Urban Institute’s DYNASIM microsimulation model to inform calculations of future costs of foregone earnings. Results suggest that the cost of foregone earnings attributable to caregiving is currently about $67 billion. By mid-century, it will likely more than double, outpacing the growth of disabled older population as the share of better-educated caregivers with higher earning capacity increases. Policymakers can use these results to inform their current and future policy efforts aimed at assisting family caregivers who are facing the challenge of balancing work and caregiving responsibilities.

scholarly journals A Systematic Review of Interventions That Reduce Family Caregiving Time

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 269-269
Author(s):  
Eric Jutkowitz ◽  
Joseph Gaugler ◽  
Zachary Baker
Keyword(s):  
Systematic Review ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Care Gap ◽  
Health Trends ◽  
Care Recipients ◽  
Multicomponent Interventions ◽  
Published Research

Abstract Due to multiple long-term sociodemographic and health trends contributing to the impending family care gap, there likely is no single policy or intervention that could increase the number of family caregivers in the U.S. to the levels required to fill such a gap. However, the amount of time that a family caregiver spends providing assistance is potentially mutable. Given the pressing concerns of the family care gap, identifying interventions or approaches that could reduce existing caregiving time is of considerable importance. This presentation provides the results of a systematic review of published research to identify the effects of interventions on the amount of time family caregivers spend on their caregiving tasks. Pharmaceutical approaches directed to care recipients, technology interventions, case management, multicomponent interventions, and care settings all appeared to reduce caregiving time. Improved operationalization, study design, and similar factors will help guide future intervention research to reduce caregiving time.

scholarly journals Caregiving in a Pandemic: COVID-19 and the Well-Being of Family Caregivers 55+ in the United States

2022 ◽  
pp. 107755872110624
Author(s):  
Yulya Truskinovsky ◽  
Jessica M. Finlay ◽  
Lindsay C. Kobayashi
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Well Being ◽  
The United States ◽  
National Sample ◽  
Work From Home ◽  
More Care ◽  
Using Data ◽  
The Impact

Little is known about the effects of Coronavirus disease 2019 (COVID-19) on older family caregivers. Using data from a national sample of 2,485 U.S. adults aged ≥55, we aimed to describe the magnitude of disruptions to family care arrangements during the initial wave of the COVID-19 pandemic, and the associations between these disruptions and the mental health outcomes (depression, anxiety, loneliness, and self-rated health) and employment outcomes (job loss or furlough, hours or wages reduced, transition to work-from-home) of family caregivers. We found that COVID-19 disrupted over half of family caregiving arrangements, and that care disruptions were associated with increased depression, anxiety, and loneliness among caregivers, compared with both noncaregivers and caregivers who did not experience disruptions. Family caregivers who experienced pandemic-related employment disruptions were providing more care than caregivers who did not experience disruptions. These findings highlight the impact of the pandemic on an essential and vulnerable health care workforce.

scholarly journals The Family and Medical Leave Act: A Policy Analysis and Recommendations to Address Employed Caregiver Burden

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 104-104
Author(s):  
Geunhye Park ◽  
Erin Robinson
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Critical Examination ◽  
Term Care ◽  
Family Work ◽  
Medical Leave ◽  
The Family ◽  
Unpaid Leave ◽  
Employed Caregivers

Abstract Family caregiving plays a pivotal role in the long-term care system in the U.S, as there are over 40.4 million people providing unpaid care to individuals aged 65+ (U.S. Bureau of Labor Statistics, 2019). The majority are women providing supports to a parent/grandparent and provide an average of three hours of care each day. This places greater demands on family caregivers in balancing their dual caregiver/employment roles. The Family and Medical Leave Act (FMLA) of 1993 enables family caregivers to take unpaid leave to provide supports to immediate family. While FMLA was intended to provide flexibility to employed caregivers, many struggle with family-work conflicts and caregiver burden is high. Therefore, this conceptual paper offers a critical examination of FMLA and how family caregivers of older adults are impacted. Results of this analysis revealed three themes. First, FMLA is largely inadequate for employed caregivers, as only 60% of the workforce are eligible and unpaid leave restrictions create considerable financial hardship. Second, employer discrimination is high and family caregiving discrimination claims have dramatically increased since FMLA was enacted. And third, many employed caregivers are unaware of FMLA policies and eligibility requirements, which results in underutilization of benefits. Based upon these results, several policy and employer recommendations can be made, such as expanding FMLA coverage to include paid leave and non-immediate family caregivers. Additional recommendations will also be addressed. As it has been nearly 30 years since FMLA was enacted, updated policy is vital to continue supporting employed caregivers in their roles.

Family care giving for patients at life's end: Report from the Cultural Variations Study (CVAS)

2003 ◽  
Vol 1 (2) ◽  
pp. 165-170 ◽  
Author(s):  
ETIENNE PHIPPS ◽  
LEONARD E. BRAITMAN ◽  
GALA TRUE ◽  
DIANA HARRIS ◽  
WILLIAM TESTER
Keyword(s):  
Social Support ◽  
African American ◽  
Family Member ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Life Experience ◽  
Family Care ◽  
Financial Strain ◽  
White Family ◽  
Care Giving

Objective: To investigate differences between African American and White family caregivers in self-reported health, use of social support and external resources, and emotional and financial strain in the context of their care of a family member with advanced cancer.Methods: Sixty-nine patient-designated family caregivers of patients with advanced lung or colon cancer interviewed between December 1999 and July 2001.Results: Most African American and White family caregivers were able to identify someone else who was helping them in the care of their family member. Few caregivers used outside resources (e.g., home-based medical care, meal delivery, pastoral care, outside social support visitor) to assist in the support and care of the patient. At baseline, White caregivers were more likely to agree that caregiving caused work adjustments (ρ = .28, p = .02) and emotional difficulties (ρ = .32, p = .008) and that caregiving had been completely overwhelming (ρ = .19, p = .12) than were African American caregivers. At follow-up, among family caregivers of patients who had died, 44% reported having to quit work to provide personal care for the patient. Twenty-five percent of family caregivers reported using most or all of the family's saving in caring for the patient.Significance of results: Caregivers of patients at end of life experience substantial emotional and financial difficulties related to caregiving. Family caregiving is a private undertaking with little use of outside resources to mitigate the burden.

scholarly journals Caregiver Health and Well-Being, and Financial Strain

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-682
Author(s):  
Susan Reinhard ◽  
Lynn Feinberg
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Well Being ◽  
Financial Strain ◽  
Caregiver Health ◽  
Financial Impacts ◽  
The Impact ◽  
Health And Well Being ◽  
The U.S

Abstract Family caregivers often face key challenges when caring for a relative or close friend with health or functional needs. This paper presents findings from Caregiving in the U.S. 2020 on the impact of caregiving on the physical health and well-being of family caregivers and the financial impacts of family care. The data suggest that the caregiver’s own health has declined, with 1 in 5 (21%) saying they are in fair to poor health themselves, up from 17 percent in 2015. Nearly 1 in 4 (23%) feel caregiving has made their health worse. Nearly 4 in 10 (38%) family caregivers of adults experience a moderate to a high degree of financial strain from providing care. Forty-five percent have experienced at least one financial impact (e.g., stopped savings, debt, ability to pay bills, and ability to afford necessary expenses, like food). These findings reveal that because family caregiving today is more complex, costly, and stressful than in the past, action is needed to recognize and support family caregivers in the U.S adequately.

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