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1.
Hous Policy Debate ; 34(1): 148-155, 2024.
Article in English | MEDLINE | ID: mdl-38616891

ABSTRACT

The effects of homelessness and permanent supportive housing (PSH) on health care utilization have been well documented. Prior research on the association between PSH entry and Medicaid expenditures have indicated that such housing support could result in savings to Medicaid programs; however, whether changes occur in health care use and expenditures after individuals exit PSH is unknown. If efficiency gains from PSH persist after the individual leaves PSH, the savings to payers such as Medicaid may continue even after the costs to provide housing for a PSH recipient have ended. We used linked Medicaid and housing data from Pennsylvania to examine changes in the level and composition of Medicaid expenditures for 580 adult enrollees during the 12 months before and after exit from PSH adjusting for relevant covariates. In adjusted analyses, we estimated that monthly spending declined by $200.32 (95% CI: $323.50, $75.15) in the first quarter post-exit and by $267.63 (95% CI: $406.10, $127.10) in the third quarter. Our findings suggest that PSH may have sustained budgetary benefits to state Medicaid agencies even for beneficiaries exiting the program. However, more research is needed to understand if these reductions in expenditures last beyond 12 months and do not reflect under-use of care that may be important for managing health over the long-term.

3.
Tob Use Insights ; 14: 1179173X20927389, 2021.
Article in English | MEDLINE | ID: mdl-33746518

ABSTRACT

BACKGROUND: The growing use of electronic nicotine delivery systems (ENDS) among adolescents is a public health concern. Taxation of these products is a viable approach to reduce ENDS use, particularly among adolescents. Opponents of taxation posit that it puts specialty retailers (ie, vape shops) out of business, thereby reducing availability of ENDS for adult smokers seeking harm reduction. Pennsylvania enacted substantial ENDS taxes in October 2016. This study sought to examine (1) the prevalence of Pennsylvania vape shops before and after ENDS taxes were enacted and (2) ENDS retail licensing compliance among vape shops. METHODS: We employed standardized searches for vape shops in Pennsylvania on the Yelp business-listing platform a month prior to and for 18 consecutive months following the imposition of ENDS taxes. We then compared listings to a public database of ENDS-related retail licenses to determine compliance status. RESULTS: The number of listed vape shops increased in a linear fashion by a magnitude of 23%. In addition, when we compared a final listing of retailers to data from the state tax authority, we found roughly a quarter (22%-29%) of vape shops to be noncompliant with maintaining a valid ENDS retail license. CONCLUSIONS: Overall, ENDS taxation in Pennsylvania has not appeared to reduce prevalence of vape shops as anticipated. However, stricter enforcement of the tax law is necessary to ensure compliance among retailers. These findings have implications for implementation and enforcement of ENDS tax policy nationwide, including states that currently lack such policies.

4.
J Aging Soc Policy ; 33(3): 268-284, 2021.
Article in English | MEDLINE | ID: mdl-33461429

ABSTRACT

As Pennsylvania implements its managed long-term services and supports program, we explore how home- and community-based providers are preparing for and perceiving the transition through an online survey. We summarize responses and conduct chi-square analysis to measure differences between select provider groups. Despite high levels of uncertainty about program impact, over 84% of respondents plan to participate. We found that providers in the first implementation phase had more strategic and operational discussions with MCOs than the other two phases (p < .03). As program rollout continues, we anticipate changes in MCO-provider conversation frequency and topics based upon implementation zone.


Subject(s)
Community Health Services/standards , Community Participation , Managed Care Programs/standards , Medicaid/standards , Quality Assurance, Health Care/organization & administration , Humans , Pennsylvania , State Health Plans/standards , United States
5.
Qual Manag Health Care ; 30(1): 1-5, 2021.
Article in English | MEDLINE | ID: mdl-33229997

ABSTRACT

BACKGROUND: The Caregiver Advise, Record, Enable (CARE) Act encourages inclusion of family caregivers in the hospitalization process for patients. Translating the state laws into meaningful changes within the health care delivery system can be challenging and requires time. This study sought to examine early compliance with and implementation of the CARE Act reported by hospitals in the Commonwealth of Pennsylvania. METHODS: We sent an online survey to hospital executives in Pennsylvania in 2017. Descriptive statistics were computed to examine hospital characteristics and used to assess compliance and implementation of the CARE Act tenets. RESULTS: Most hospitals reported that changes have been and are being made to comply with the CARE Act (90.9%). Hospital executives reported that the family caregiver designation is available in 63.6% of the hospitals and notification of patient discharge is available in 45.5%. Hospital executives reported that family caregiver education and instruction is occurring in 31.8% of all inpatient stays. Hospital executives indicated that they are still developing processes to comply with the legislation and to integrate family caregivers into hospital systems and processes. CONCLUSIONS: Our findings suggest that hospitals are complying with the legislation, while fully operationalizing the components of the CARE Act is a work in progress.


Subject(s)
Caregivers , Patient Discharge , Delivery of Health Care , Hospitalization , Humans , Perception
6.
Health Aff (Millwood) ; 39(2): 247-255, 2020 02.
Article in English | MEDLINE | ID: mdl-32011940

ABSTRACT

The health of women and children affected by opioid use disorder is a priority for state Medicaid programs. Little is known about longer-term outcomes among Medicaid-enrolled children exposed to opioids in utero. We examined well-child visit use and diagnoses of pediatric complex chronic conditions in the first five years of life among children with opioid exposure, tobacco exposure, or neither exposure in utero. The sample consisted of 82,329 maternal-child dyads in the Pennsylvania Medicaid program in which the children were born in the period 2008-11 and followed up for five years. Children with in utero opioid exposure had a lower predicted probability of recommended well-child visit use at age fifteen months (42.1 percent) compared to those with tobacco exposure (54.1 percent) and those with neither exposure (55.7 percent). Children with in utero opioid exposure had a predicted probability of being diagnosed with a pediatric complex chronic condition similar to that among children with tobacco exposure and those with neither exposure (20.4 percent, 18.7 percent, and 20.2 percent, respectively). Our findings were consistent when we examined a subgroup of opioid-exposed children identified as having neonatal opioid withdrawal symptoms.


Subject(s)
Analgesics, Opioid , Opioid-Related Disorders , Analgesics, Opioid/adverse effects , Child , Chronic Disease , Female , Humans , Infant , Infant, Newborn , Medicaid , Opioid-Related Disorders/epidemiology , Pennsylvania , United States
7.
Gerontologist ; 60(4): 776-786, 2020 05 15.
Article in English | MEDLINE | ID: mdl-30726908

ABSTRACT

BACKGROUND AND OBJECTIVES: The Commonwealth of Pennsylvania passed the Caregiver Advise, Record, Enable (CARE) Act on April 20, 2016. We designed a study to explore early implementation at a large, integrated delivery financing system. Our goal was to assess the effects of system-level decisions on unit implementation and the incorporation of the CARE Act's three components into routine care delivery. RESEARCH DESIGN AND METHODS: We conducted a multisite, ethnographic case study at three different hospitals' medical-surgical units. We conducted observations and semi-structured interview to understand the implementation process and the approach to caregiver identification, notification, and education. We used thematic analysis to code interviews and observations and linked findings to the Promoting Action on Research Implementation in Health Services framework. RESULTS: Organizational context and electronic health record capability were instrumental to the CARE Act implementation and integration into workflow. The implementation team used a decentralized strategy and a variety of communication modes, relying on local hospital units to train staff and make the changes. We found that the system facilitated the CARE Act implementation by placing emphasis on the documentation and charting to demonstrate compliance with the legal requirements. DISCUSSION AND IMPLICATIONS: General acute hospitals will be making or have made similar decisions on how to operationalize the regulatory components and demonstrate compliance with the CARE Act. This study can help to inform others as they design and improve their compliance and implementation strategies.


Subject(s)
Caregivers/education , Documentation , Hospitals, General/legislation & jurisprudence , Patient Discharge/legislation & jurisprudence , Delivery of Health Care , Electronic Health Records , Health Personnel , Health Services , Humans , Pennsylvania
8.
J Nurs Care Qual ; 35(1): 88-94, 2020.
Article in English | MEDLINE | ID: mdl-30889081

ABSTRACT

BACKGROUND: Despite the role caregivers play in the delivery of care, the interactions and training methods used with caregivers during an inpatient stay are not clear. PURPOSE: The purpose was to examine interactions and training methods used with caregivers during hospital care. METHODS: A mixed-methods case study was conducted. Observations were summarized and interviews were analyzed using thematic analysis. RESULTS: The frequency of caregiver engagement varied at different points in the care process but was highest among observations during the stay care point. Providers were most commonly using written and verbal instructions to train caregivers. Three themes emerged from the interviews and were described to be both facilitators and barriers to caregiver involvement: experience, time, and relationship. CONCLUSIONS: High-quality person and family-centered care depends upon coordinated efforts among health care systems, providers, patients, and caregivers. Future caregiver initiatives should aim to decrease disengagement, increase assessment, and broaden the use of training methods.


Subject(s)
Caregivers/education , Family/psychology , Nursing Care/methods , Teaching/trends , Caregivers/psychology , Caregivers/statistics & numerical data , Humans , Interviews as Topic/methods , Nursing Care/trends , Qualitative Research
9.
J Sch Health ; 90(2): 135-142, 2020 02.
Article in English | MEDLINE | ID: mdl-31828791

ABSTRACT

BACKGROUND: Initial reports suggest that JUUL, a popular e-cigarette, is being used in schools and other locations in which cigarette smoking is illegal or discouraged. However, there is little scholarly research documenting this. We aimed to make a systematic analysis of JUUL use themes and sentiment on Twitter. METHODS: Data were collected from Twitter's Filtered Streams Application Programming Interface from April 12, 2018 to May 10, 2018. This yielded 67,934 tweets, from which a random sample of 2% was selected for coding. The final dataset included 1209 tweets. Inter-rater reliability ranged κ = 0.64-0.85. RESULTS: The majority (71.5%) of tweets expressed positive sentiment toward JUUL. JUUL use in places where cigarette smoking is illegal or discouraged appeared in 111 tweets (9.2%); approximately one-third of these tweets referring to using the device in school. Nearly 20% of tweets mentioned using the device at home and/or directly in front of responsible adults. CONCLUSIONS: This study confirms anecdotal reports of JUUL use in places where cigarette smoking is illegal or discouraged. Positive sentiment about use of JUUL suggests that the product is being normalized among young people. It may be valuable for educators to discuss the addictive nature of nicotine delivered through JUUL with younger populations.


Subject(s)
Electronic Nicotine Delivery Systems , Smoking/epidemiology , Social Media , Adolescent , Attitude , Databases, Factual , Disclosure , Humans , Information Storage and Retrieval , Students , United States/epidemiology
10.
J Aging Health ; 32(9): 1017-1028, 2020 10.
Article in English | MEDLINE | ID: mdl-31833791

ABSTRACT

Objectives: To examine the association between informal caregiving and caregiver work performance. Method: A systematized review of the literature. Results: We found that caregiving has an adverse impact on work performance: caregivers experience substantial work disruptions and negative work performance outcomes, and these findings were consistent across measures. Our synthesis suggests that caregivers miss a significant amount of work and have reductions in productivity due to their caregiving responsibilities. However, significant methodological limitations with the reviewed studies make systematic interpretations and causal determinations challenging. Discussion: Examining the effect of caregiving on work performance is critical to better understand the full impact of caregiving, especially as demand for caregivers increases as the population ages. This comprehensive review suggests that caregiving has a significant negative impact on work performance, although methodological challenges remain in this area of science. These findings should inform both public policy development and workplace benefits design.


Subject(s)
Caregivers , Employment , Work Performance , Absenteeism , Efficiency , Female , Humans , Male , Presenteeism
11.
Am J Manag Care ; 25(9): e267-e273, 2019 09 01.
Article in English | MEDLINE | ID: mdl-31518098

ABSTRACT

OBJECTIVES: The current Medicare Shared Savings Program (MSSP) accountable care organization (ACO) attribution methodology creates unpredictability for ACOs that are developing and deploying strategic initiatives aimed at improving value. The goal of this study is to determine if ACO network comprehensiveness is associated with the stability of assigned Medicare beneficiaries from 2013 to 2014. STUDY DESIGN: We utilized a beneficiary-level logistic regression model to determine association of network comprehensiveness with stable attribution to an MSSP ACO. METHODS: Using 2013 and 2014 Medicare fee-for-service beneficiary and provider files, we developed a measure of network comprehensiveness based on 2013 provider contracts, determined beneficiary attribution, and generated market-level measures. Additional population and quality measures were obtained from the US Census and the ACO Public Use File. RESULTS: Of the 1,317,858 observed beneficiaries, 84.38% were attributed to the same ACO in 2013 and 2014, and mean (SD) ACO network comprehensiveness was 0.30 (0.20). We found that a 0.10 increase in network comprehensiveness score significantly increased the odds of remaining attributed to the same ACO by 4.5% (P = .001). Patient panel stability was significantly associated with improved diabetes (P = .01) and hypertension (P = .02) control, timely access to care (P = .001), and delivery of health education (P = .03) over the 2-year period. CONCLUSIONS: The comprehensiveness of an MSSP ACO's contracted provider network is associated with stable patient assignment year to year. Patient panel stability may aid in the longitudinal management of some conditions.


Subject(s)
Accountable Care Organizations/economics , Accountable Care Organizations/statistics & numerical data , Cost Savings/economics , Fee-for-Service Plans/economics , Health Expenditures/statistics & numerical data , Medicare/economics , Quality of Health Care/economics , Aged , Aged, 80 and over , Cost Savings/statistics & numerical data , Fee-for-Service Plans/statistics & numerical data , Female , Humans , Male , Medicare/statistics & numerical data , Quality of Health Care/statistics & numerical data , United States
12.
Drug Alcohol Depend ; 204: 107500, 2019 11 01.
Article in English | MEDLINE | ID: mdl-31499242

ABSTRACT

BACKGROUND: JUUL-a novel electronic nicotine delivery system (ENDS)-comprises most of the ENDS market share. Additionally, JUUL has a high nicotine content and utilizes a patented nicotine salt formulation aimed to speed absorption. Many JUUL users are not aware of the nicotine content and therefore may not be expecting acute nicotine effects or potential for dependence. This study sought to analyze Twitter messages ("tweets") regarding nicotine, symptoms of dependence, and withdrawal related to JUUL use. METHODS: Data were collected from Twitter's Filtered Streams interface 4/11-6/16/2018 by retrieving tweets matching the terms "juul," "juuls," and "juuling" that also used words consistent with nicotine effects, symptoms of dependence, and withdrawal. A random 5% subsample (n = 1986) was coded by 2 independent coders. Cohen's κ for inter-rater reliability ranged 0.62-1.00 for all coded variables. Tweets were assessed using a qualitative content analysis approach. RESULTS: A total of 335 tweets mentioned dependence-related themes, including use upon waking and compulsion to use. A total of 189 tweets mentioned themes related to nicotine, with almost 15% of these tweets describing physical effects. Additionally, 42 tweets mentioned themes related to quitting JUUL and/or withdrawal from JUUL. DISCUSSION: This qualitative analysis suggests that users of JUUL are experiencing symptoms of nicotine exposure and dependence. Considering the high nicotine content of JUUL and the rising popularity among young people, more research around initiation of and dependence on JUUL, as well as the impact of recent FDA policy changes, should be conducted.


Subject(s)
Electronic Nicotine Delivery Systems/statistics & numerical data , Nicotine/adverse effects , Social Media/statistics & numerical data , Substance Withdrawal Syndrome/psychology , Tobacco Use Disorder/psychology , Data Collection , Humans , Qualitative Research , Reproducibility of Results
13.
Gerontologist ; 59(5): e535-e551, 2019 09 17.
Article in English | MEDLINE | ID: mdl-30945725

ABSTRACT

BACKGROUND AND OBJECTIVES: Older adults face significant long-term care and health care costs. But some of these costs can potentially be offset through family caregivers who may serve as substitutes for formal care or directly improve the care recipient's health and reduce health care utilization and expenditures. This article reviews the current literature to determine whether it is possible through existing work to compare the costs of care for individuals with versus without family caregivers and, if not, where the data, measurement, and other methodological challenges lie. RESEARCH DESIGN AND METHODS: A mapping review of published works containing information on health care utilization and expenditures and caregiving was conducted. A narrative approach was used to review and identify methodological challenges in the literature. RESULTS: Our review identified 47 articles that met our criteria and had information on caregiving and health care costs or utilization. Although findings were mixed, for the most part, having a family caregiver was associated with reduced health care utilization and a decreased risk of institutionalization however, the precise difference in health care expenditures for individuals with caregivers compared to those without was rarely examined, and findings were inconsistent across articles reviewed. DISCUSSION AND IMPLICATIONS: The number of family caregivers providing care to loved ones is expected to grow with the aging of the Baby Boomers. Various programs and policies have been proposed to support these caregivers, but they could be costly. These costs can potentially be offset if family caregivers reduce health care spending. More research is needed, however, to quantify the savings stemming from family caregiving.


Subject(s)
Caregivers/economics , Health Expenditures , Institutionalization/economics , Aged , Family , Humans , Long-Term Care , Middle Aged
14.
Fam Syst Health ; 36(4): 482-492, 2018 12.
Article in English | MEDLINE | ID: mdl-30148377

ABSTRACT

INTRODUCTION: The role of caregiver health literacy in predicting difficulty communicating with health care professionals and navigating services and supports for older adults was examined and informed by the health literacy skills framework (Squiers, Peinade, Berkman, Boudewyns, & McCormack, 2012). METHOD: Secondary analyses of cross-sectional data from the Pittsburgh Regional Caregivers Survey in 2017 were conducted. A total of 761 caregivers of older adults reported communicating with health care providers and accessing services and supports. Health care provider communication and navigation of services and supports (HCNS) was assessed through self-report questions on communication about needs of the care recipient and caregiver, and the ability to locate and arrange services and supports for the care recipient. Health literacy was assessed with self-report questions on confidence filling out forms, need for help with reading information, and comprehension with written information. A logistic regression was conducted to determine the relationship between health literacy and high HCNS difficulty while controlling for demographic and contextual caregiving characteristics. RESULTS: A fifth of the caregivers demonstrated low health literacy (n = 150, 19.7%). For a caregiver with low health literacy, the odds of having high levels of difficulty with HCNS was 2.52 times larger than the odds for a caregiver with adequate health literacy while controlling for demographic and contextual caregiving factors (odds ratio = 2.52, 95% confidence interval [1.57, 4.06]; p < .001). DISCUSSION: Findings demonstrate that poor caregiver health literacy is an important factor associated with HCNS difficulty. The health literacy of caregivers should be considered for assessments and interventions designed to identify and reduce the difficulty caregivers experience with HCNS. (PsycINFO Database Record (c) 2018 APA, all rights reserved).


Subject(s)
Caregivers/standards , Communication , Health Literacy/standards , Patient Navigation/methods , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Cross-Sectional Studies , Female , Health Literacy/statistics & numerical data , Humans , Logistic Models , Male , Middle Aged , Odds Ratio , Pennsylvania , Surveys and Questionnaires
15.
Cyberpsychol Behav Soc Netw ; 21(7): 437-443, 2018 Jul.
Article in English | MEDLINE | ID: mdl-29995530

ABSTRACT

Social media allows users to explore self-identity and express emotions or thoughts. Research looking into the association between social media use (SMU) and mental health outcomes, such as anxiety or depressive symptoms, have produced mixed findings. These contradictions may best be addressed by examining different patterns of SMU as they relate to depressive symptomatology. We sought to assess the independent associations between active versus passive SMU and depressive symptoms. For this, we conducted an online survey of adults 18-49 of age. Depressive symptoms were measured using the Patient-Reported Outcomes Measurement Information System brief depression scale. We measured active and passive SMU with previously developed items. Factor analysis was used to explore the underlying factor structure. Then, we used ordered logistic regression to assess associations between both passive and active SMU and depressive symptoms while controlling for sociodemographic covariates. Complete data were received from 702 participants. Active and passive SMU items loaded on separate factors. In multivariable analyses that controlled for all covariates, each one-point increase in passive SMU was associated with a 33 percent increase in depressive symptoms (adjusted odds ratio [AOR] = 1.33, 95 percent confidence interval [CI] = 1.17-1.51). However, in the same multivariable model, each one-point increase in active SMU was associated with a 15 percent decrease in depressive symptoms (AOR = 0.85, 95 percent CI = 0.75-0.96). To inform interventions, future research should determine directionality of these associations and investigate related factors.


Subject(s)
Anxiety/psychology , Depression/psychology , Social Media , Adolescent , Adult , Female , Humans , Logistic Models , Male , Middle Aged , Psychiatric Status Rating Scales , Surveys and Questionnaires , United States , Young Adult
16.
Am J Public Health ; 108(8): 1009-1014, 2018 08.
Article in English | MEDLINE | ID: mdl-29927648

ABSTRACT

There is growing interest in conducting public health research using data from social media. In particular, Twitter "infoveillance" has demonstrated utility across health contexts. However, rigorous and reproducible methodologies for using Twitter data in public health are not yet well articulated, particularly those related to content analysis, which is a highly popular approach. In 2014, we gathered an interdisciplinary team of health science researchers, computer scientists, and methodologists to begin implementing an open-source framework for real-time infoveillance of Twitter health messages (RITHM). Through this process, we documented common challenges and novel solutions to inform future work in real-time Twitter data collection and subsequent human coding. The RITHM framework allows researchers and practitioners to use well-planned and reproducible processes in retrieving, storing, filtering, subsampling, and formatting data for health topics of interest. Further considerations for human coding of Twitter data include coder selection and training, data representation, codebook development and refinement, and monitoring coding accuracy and productivity. We illustrate methodological considerations through practical examples from formative work related to hookah tobacco smoking, and we reference essential methods literature related to understanding and using Twitter data.


Subject(s)
Health Promotion , Public Health Surveillance/methods , Social Media , Data Collection , Humans , United States
17.
Tob Control ; 2018 May 16.
Article in English | MEDLINE | ID: mdl-29773707

ABSTRACT

OBJECTIVES: To form population-level comparisons of total smoke volume, tar, carbon monoxide and nicotine consumed from waterpipe tobacco smoking (WTS) and cigarette smoking using data from a nationally representative sample of smokers and non-smokers aged 18-30 years. METHODS: In March and April 2013, we surveyed a nationally representative sample of 3254 US young adults to assess the frequency and volume of WTS and cigarette smoking. We used Monte Carlo analyses with 5000 repetitions to estimate the proportions of toxicants originating from WTS and cigarette smoking. Analyses incorporated survey weights and used recent meta-analytic data to estimate toxicant exposures associated with WTS and cigarette smoking. RESULTS: Compared with the additive estimates of WTS and cigarette smoking combined, 54.9% (95% CI 37.5% to 72.2%) of smoke volume was attributed to WTS. The proportions of tar attributable to WTS was 20.8% (95% CI 6.5% to 35.2%), carbon monoxide 10.3% (95% CI 3.3% to 17.3%) and nicotine 2.4% (95% CI 0.9% to 3.8%). CONCLUSIONS: WTS accounted for over half of the tobacco smoke volume consumed among young US adult waterpipe and cigarette smokers. Toxicant exposures to tar, carbon monoxide and nicotine were lower, but still substantial, for WTS alone compared with WTS and cigarette smoking. Public health and policy interventions to reduce harm from tobacco smoking in young US adults should explicitly address WTS toxicant exposures.

19.
Tob Prev Cessat ; 4: 14, 2018.
Article in English | MEDLINE | ID: mdl-32411842

ABSTRACT

INTRODUCTION: Use of waterpipe tobacco smoking (WTS, or hookah smoking) and electronic nicotine delivery systems (ENDS, such as e-cigarettes) is rapidly increasing. However, legislatures have been slow to update policy measures related to them. Therefore, we aimed to assess knowledge, attitudes and likelihood to take future action regarding WTS and ENDS among Pennsylvania legislators. METHODS: We approached all Standing Members of key Pennsylvania House and Senate health and welfare committees to complete a survey about substances of abuse, including WTS and ENDS. Closed-ended knowledge, attitude and action items used a 100-point scale. Responses to open-ended items were assessed using thematic analysis by three independently working researchers. RESULTS: We received responses from 13 of 27 eligible policymakers (48%). Participants answered a mean of only 27% (SD=20%) of knowledge items correctly. When asked to rank by priority eight issues in substance abuse, WTS ranked eighth (least urgent) and ENDS ranked fifth. Participants reported low likelihood to introduce legislation on WTS (mean=29, median=25) and/or ENDS (mean=28, median=10). Thematic analysis revealed that participants readily acknowledged lack of understanding of WTS and ENDS, and were eager for additional information. CONCLUSIONS: Policymakers exhibit a lack of knowledge concerning newer forms of tobacco and nicotine delivery systems and consider them to be relatively low legislative priorities. However, respondents expressed a desire for more information, suggesting the potential for public health entities to promote effective policy development via improved dissemination of information.

20.
J Palliat Med ; 21(S2): S36-S42, 2018 03.
Article in English | MEDLINE | ID: mdl-29091533

ABSTRACT

BACKGROUND: Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures. OBJECTIVE: We examine the role of caregivers in existing systems of care, identify needed changes in structures and processes, and describe how these changes might be monitored and assessed and who should be accountable for implementing them. DESIGN: Based on a broad assessment of the caregiving literature, the recent National Academy of Sciences Report on family caregiving, and descriptive data from two national surveys, we describe structural and process barriers that limit caregivers' ability to provide effective care. SUBJECTS: To describe the unique challenges and impacts of caring for seriously ill patients, we report data from a nationally representative sample of older adults and their caregivers (National Health and Aging Trends Study [NHATS]; National Study of Caregiving [NSOC]) to identify the prevalence and impact on family caregivers of seriously ill patients who have high needs for support and are high cost to the healthcare system. MEASUREMENTS: Standardized measures of patient status and caregiver roles and impacts are used. RESULTS: Multiple structural and process barriers limit the ability of caregivers to provide effective care. These issues are exacerbated for the more than 13 million caregivers who provide care and support to 9 million seriously ill older adults. CONCLUSIONS: Fundamental changes are needed in the way we identify, assess, and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of healthcare and long-term service providers to effectively engage caregivers.


Subject(s)
Caregivers , Chronic Disease/nursing , Family , Role , Social Support , Humans , Needs Assessment
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