Protecting human participants in long-term care research: the role of state law and policy.

Abstract:

:There has been substantial recent activity addressed at the challenge of protecting the rights and welfare of vulnerable human participants in various kinds of research protocols, on one hand, without unduly impeding the conduct of research that promises findings that may substantially improve health and quality of life for many beneficiaries of research, on the other. Many of the emerging recommendations for improved participant protection are relevant to, and in some cases explicitly targeted at, vulnerable older persons, including long-term, chronically dependent nursing home and home health patients, who may be approached by investigators. Thus far, virtually all of the discussion and recommendations regarding research participant protection pertain to possible legal and policy changes at the federal level. Yet, both current federal law and emerging policy recommendations defer, either expressly or by default through their silence, on some very important matters about research participation, especially regarding informed consent, determinations of decisional capacity, and surrogate decision-making authority, to the laws of individual states. This article analyzes and interweaves recommendations regarding the role of state law and public policy in protecting older persons who are or may become participants in long-term care research projects.

journal_name

J Aging Soc Policy

authors

Kapp MB

doi

10.1300/J031v16n03_02

subject

Has Abstract

pub_date

2004-01-01 00:00:00

pages

13-33

issue

3

eissn

0895-9420

issn

1545-0821

journal_volume

16

pub_type

杂志文章
  • Possibilities for change toward universal design: Japanese housing policy for seniors at the crossroads.

    abstract::Japanese government policies for seniors have long assumed that informal care by their families exists for them. The rapid aging of Japan is eroding the basis for this assumption. It is now necessary to include barrier-free design concepts in the basic requirements for dwellings to be used by everyone, not just senior...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章,评审

    doi:10.1300/J031v08n02_11

    authors: Kose S

    更新日期:1996-01-01 00:00:00

  • Expanding the focus of health insurance education for Medicare beneficiaries.

    abstract::Health insurance education plays an important role in helping consumers make informed decisions about their need for supplemental coverage. This article reviews findings on the knowledge of Medicare beneficiaries about their health insurance coverage. Then, current health insurance education programs are examined with...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/j031v03n04_03

    authors: Strombeck R

    更新日期:1991-01-01 00:00:00

  • Recent developments in aged care policy in Australia.

    abstract::A series of major reforms implemented through the mid 1980s sought to contain residential care and expand community care in Australia's long-term care system. While this goal has been maintained, a number of new policy initiatives followed the change of federal government in 1996. This article presents a systematic ac...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/j031v13n02_08

    authors: Howe AL

    更新日期:2001-01-01 00:00:00

  • Demographic and socioeconomic aspects of elderly migration in the 1980s.

    abstract::The availability of data from the Current Population Survey for each year makes it possible to monitor the migration behavior of the population on a year-to-year basis and facilitates efforts to detect changes in long-standing patterns of behavior. The data used in this article come from the published reports summariz...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v08n01_04

    authors: Serow WJ

    更新日期:1996-01-01 00:00:00

  • Beyond Clinical Complexity: Nonmedical Barriers to Nursing Home Care for Rural Residents.

    abstract::We conducted a qualitative content analysis of barriers to nursing home admission for rural residents. Data came from semi-structured interviews with 23 rural hospital discharge planners across five states (Georgia, Idaho, Minnesota, Pennsylvania, and Wisconsin). From those, we identified four themes around nonmedical...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2018.1430413

    authors: Henning-Smith C,Kozhimannil KB,Casey MM,Prasad S

    更新日期:2018-03-01 00:00:00

  • No foot in the door: an experimental study of employment discrimination against older workers.

    abstract::Pairs of testers, one aged 57 and one aged 32, applied for 102 entry-level sales or management jobs in the Washington, DC, metropolitan area. Although their credentials described them as equally qualified, the older applicants received less favorable responses from employers 41.2% of the time. Three quarters of these ...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v10n04_02

    authors: Bendick M Jr,Brown LE,Wall K

    更新日期:1999-01-01 00:00:00

  • Early retiree and near-elderly health insurance in recession.

    abstract::This paper examines recent trends in health insurance cost and coverage for the near-elderly population (aged 55 to 64), with particular attention directed toward the implications of the 2007 recession. We examine coverage by demographic and socioeconomic characteristics from the Current Population Survey and the Medi...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959421003620996

    authors: Gould E,Hertel-Fernandez A

    更新日期:2010-04-01 00:00:00

  • Constructing deservingness: federal welfare reform, supplemental security income, and elderly immigrants.

    abstract::On August 22, 1996, President Clinton signed the welfare reform law that ended eligibility for all immigrants to federal means tested entitlements. Poor elderly immigrants on Supplemental Security Income were specifically targeted. This article documents how the print media responded to these policy changes. The follo...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/j031v13n04_02

    authors: Yoo GJ

    更新日期:2001-01-01 00:00:00

  • Personal assistance in Sweden.

    abstract::This article provides an overview of the Swedish personal assistance program for persons with severe impairments, introduced in 1994. The personal assistance program makes it financially possible for people with severe disabilities to appoint a personal assistant, by themselves or through a provider, to create support...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v19n03_05

    authors: Clevnert U,Johansson L

    更新日期:2007-01-01 00:00:00

  • Decreased Contribution Rates Increase Public Pension Fund Revenue: Evidence from China.

    abstract::The basic pension plan for urban enterprise workers (PPUEW) is the primary form of public pension system in China and is managed by provincial governments. Although the federal government requires that employers contribute 20% and individuals 8%, provincial governments have the right to adjust the rate. As different r...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2019.1707056

    authors: Han J PhD,Meng Y PhD

    更新日期:2019-12-24 00:00:00

  • The closing of a social HMO: a case study.

    abstract::A social health maintenance organization (SHMO) integrates acute and long-term care and provides an extended-care benefit for elderly who are at risk of institutionalization. This article reports findings from a case study of the termination of the Group Health SHMO in Minnesota. Interviews were conducted with social ...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:

    authors: Fischer LR,Leutz W,Miller A,von Sternberg TL,Ripley JM

    更新日期:1998-01-01 00:00:00

  • Inequality of pension arrangements among different segments of the labor force in China.

    abstract::Social security for older people in China today has been established institutionally. However, there are substantial problems such as coverage, affordability, fund management, and corruption. This paper aims to provide a general picture of China's social security system for older people and to argue that the inequalit...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2012.735159

    authors: Wu L

    更新日期:2013-01-01 00:00:00

  • Educational Attainment Differences in Attitudes toward Provisions of IADL Care for Older Adults in the U.S.

    abstract::Educational attainment is increasingly associated with family inequality in the U.S., but there is little understanding about whether and how education stratifies attitudes toward eldercare. Using the General Social Survey 2012 Eldercare Module, I test the association between educational attainment and attitudes towar...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2020.1722898

    authors: Patterson SE

    更新日期:2020-02-01 00:00:00

  • Resolving mobility constraints impeding rural seniors' access to regionalized services.

    abstract::Rural and small town places in developed economies are aging. While attention has been paid to the local transportation needs of rural seniors, fewer researchers have explored their regional transportation needs. This is important given policies that have reduced and regionalized many services and supports. This artic...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2012.683329

    authors: Ryser L,Halseth G

    更新日期:2012-01-01 00:00:00

  • Care coordination for dually eligible medicare-medicaid beneficiaries under the affordable care act.

    abstract::The coordination of Medicare and Medicaid benefits and services for dually eligible enrollees has been a longstanding policy challenge. Several provisions of the Affordable Care Act (ACA) attempt to address this lack of coordination, including the establishment of the Federal Coordinated Health Care Office. This paper...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2012.659113

    authors: Grabowski DC

    更新日期:2012-01-01 00:00:00

  • The effects of federalism on policies for care of the aged in Canada and the United States.

    abstract::Debates about who should care for the elderly often center on the relative responsibilities of the state and family. In federal societies such as Canada and the United States, however, multiple governments are involved. This article compares and contrasts federalism in these two nations and its effects on the division...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v05n01_03

    authors: Liebig PS

    更新日期:1993-01-01 00:00:00

  • Enabling informed consumer choice in the long-term care insurance market.

    abstract::Provisions in the Health Insurance Portability and Accountability Act of 1996 (HIPAA) may increase private long-term care insurance sales without imposing substantially more stringent consumer-protection features. The ability of consumers to make informed choices when purchasing this complex product is examined in lig...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v10n03_03

    authors: Lutzky S,Alecxih LM

    更新日期:1999-01-01 00:00:00

  • Cognitive Impairment and Social Security's Representative Payee Program.

    abstract::Social Security's Representative Payee Program faces a difficult balance with respect to dementia: Many people living with dementia can conduct their finances without a payee if they have help from informal caregivers, but those without help are at risk. To date, it has been unclear what share of retirees with dementi...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2018.1444315

    authors: Belbase A,Sanzenbacher GT,King SE

    更新日期:2020-05-01 00:00:00

  • Challenges Experienced at Age 100: Findings From the Fordham Centenarian Study.

    abstract::This article examines the challenges experienced by very old individuals and their consequences for well-being and mental health. In order to capture unique issues experienced in very old age, 75 participants of the population-based Fordham Centenarian Study answered open-ended questions on everyday challenges. Theme-...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2016.1163652

    authors: Jopp DS,Boerner K,Cimarolli V,Hicks S,Mirpuri S,Paggi M,Cavanagh A,Kennedy E

    更新日期:2016-07-01 00:00:00

  • A limited entitlement for community care: how members use services.

    abstract::The goal of this paper is to show how members of three Social HMOs use a limited entitlement for community-based long-term care to meet their needs and solve their problems. The paper is based on in-home interviews with 48 aged Medicare beneficiaries who joined Social HMOs and are eligible for the entitlement. Members...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v12n03_03

    authors: Leutz WN,Capitman J,Green CA

    更新日期:2001-01-01 00:00:00

  • Are baby boomers who care for their older parents planning for their own future long-term care needs?

    abstract::A rapidly expanding number of baby boomers provide care to aging parents. This study examines associations between caregiver status and outcomes related to awareness and anticipation of future long-term care (LTC) needs using 2007 Connecticut Long-Term Care Needs Assessment survey data. Baby boomers who were adult chi...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2012.630905

    authors: Finkelstein ES,Reid MC,Kleppinger A,Pillemer K,Robison J

    更新日期:2012-01-01 00:00:00

  • Rural-Urban Differences in Satisfaction with Medicare Part D: Implications for Policy.

    abstract::Rural residents are more likely to be enrolled in traditional fee-for-service Part D Medicare prescription drug plans, and they face particular challenges in accessing pharmaceutical care. This study examines rural/urban differences in satisfaction with Medicare Part D coverage. Using data from the 2012 Medicare Curre...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2016.1139421

    authors: Henning-Smith C,O'Connor H,Casey M,Moscovice I

    更新日期:2016-01-01 00:00:00

  • Determinants of the Rigor of State Protection Policies for Persons With Dementia in Assisted Living.

    abstract::Continued growth in the number of individuals with dementia residing in assisted living (AL) facilities raises concerns about their safety and protection. However, unlike federally regulated nursing facilities, AL facilities are state-regulated and there is a high degree of variation among policies designed to protect...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2016.1236324

    authors: Nattinger MC,Kaskie B

    更新日期:2017-03-01 00:00:00

  • Staffing-related deficiency citations in nursing homes.

    abstract::There is evidence that staffing characteristics influence quality of care in nursing homes. Federal and state surveyors conduct inspections of homes to assess their compliance with regulatory standards, including requirements related to staffing. Deficiency citations are issued when these standards are not met. This a...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2012.705696

    authors: McDonald SM,Wagner LM,Castle NG

    更新日期:2013-01-01 00:00:00

  • Elders and the courts: judicial policy for an aging America.

    abstract::This article examines how trial courts should address complex issues of an aging society. More older people, living longer, will enter courthouses with underlying problems that will impede effective access and court processes and will require judges to enhance linkages with community health, mental health, and social ...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v18n02_03

    authors: Rothman MB,Dunlop BD

    更新日期:2006-01-01 00:00:00

  • The aged in the world's constitutions.

    abstract::This article presents a review of legal provisions benefitting the elderly as anchored in the constitutions of countries around the globe. While it is of interest to examine the sheer range of such provisions, it is also possible to gauge from the comparison whether the presence of constitutional guarantees is connect...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/j031v04n03_13

    authors: Siegenthaler JK,Silva A

    更新日期:1992-01-01 00:00:00

  • The Role of Nutrition and Literacy on the Cognitive Functioning of Elderly Poor Individuals.

    abstract::Maintaining cognitive function is a prerequisite of living independently, which is a highly valued component in older individuals' well-being. In this article we assess the role of early-life and later-life nutritional status, education, and literacy on the cognitive functioning of older adults living in poverty in Pe...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2018.1485390

    authors: Leist AK,Novella R,Olivera J

    更新日期:2020-05-01 00:00:00

  • Commentary: the forgotten older adult with serious mental illness: the final challenge in achieving the promise of Olmstead?

    abstract::Older adults with serious mental illness disproportionately reside in nursing homes despite the U.S. Supreme Court Olmstead decision supporting the rights of persons with disabilities to benefit from integrated services in the community. This commentary addresses the neglected policy debate on implementing Olmstead fo...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2011.579497

    authors: Bartels SJ

    更新日期:2011-07-01 00:00:00

  • Social protection for retirees: the diminishing role of employers.

    abstract::Jobs are changing in ways that will reduce benefits for retirees. This paper explores the variety of pressures that will tend to produce this result. One major factor is that employers have been responding to cost pressures and the need for flexibility by redesigning jobs. There has been a trend--which is likely to co...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1300/J031v03n01_04

    authors: Friedman BL

    更新日期:1991-01-01 00:00:00

  • Change in VA Community Living Centers 2004-2011: Shifting Long-Term Care to the Community.

    abstract::The United States Department of Veterans Affairs (VA) is facing pressures to rebalance its long-term care system. Using VA administrative data from 2004-2011, we describe changes in the VA's nursing homes (called Community Living Centers [CLCs]) following enactment of directives intended to shift CLCs' focus from prov...

    journal_title:Journal of aging & social policy

    pub_type: 杂志文章

    doi:10.1080/08959420.2017.1414538

    authors: Thomas KS,Cote D,Makineni R,Intrator O,Kinosian B,Phibbs CS,Allen SM

    更新日期:2018-03-01 00:00:00