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Outcome Evaluation of the National Family Caregiver Support Program
Abstract
Evaluation of the National Family Caregiver Support Program for the Administration for Community Living (ACL)
... We analyzed the 13th National Family Caregiver Support Program (NFCSP) survey data from outcome evaluation of Older Americans Act (OAA) Title III-E, conducted by the Administration on Aging (AoA) within the Administration for Community Living (ACL) (Avison et al., 2018). This national survey was first conducted in 2003 and has been conducted annually since 2011. ...
... In the first stage, 316 Area Agencies on Aging (AAA) were randomly selected from the frame of 628 agencies. In the second stage, a small sample of clients from each AAA was randomly selected to complete a telephone-based survey in 2018 (Avison et al., 2018). A contracted social science research firm conducted the survey with family caregivers who received at least one service from the NFCSP as well as clients of OAA services (Avison et al., 2018). ...
... In the second stage, a small sample of clients from each AAA was randomly selected to complete a telephone-based survey in 2018 (Avison et al., 2018). A contracted social science research firm conducted the survey with family caregivers who received at least one service from the NFCSP as well as clients of OAA services (Avison et al., 2018). Approximately 80% of the family caregivers who had received services from these entities participated in this survey. ...
Objectives: The purpose of this study was to examine the prevalence of formal and informal support between non-co-resident and co-resident family caregivers of persons with dementia and to investigate the impact of receiving formal or informal assistance on family caregivers’ residential status and their perceived emotional stress.
Method: We used secondary data from the 2018 National Survey of Older American Act conducted by the Administration for Community Living. We selected 751 primary family caregivers of persons with dementia and conducted regression analyses to explore our research questions.
Results: Non-co-resident caregivers of persons with dementia were younger, racially and ethnically diverse, employed, and had higher income than co-resident caregivers. They were less likely to utilize formal support, such as caregiver training or education (p = .005) and respite care (p = .019) but more likely to rely on informal support in their social networks (p = .002), compared to co-resident caregivers. Non-co-resident caregivers who had better informal support systems showed less emotional stress than co-resident caregivers (p = .024).
Conclusion: Findings from our study suggest the importance of engaging informal networks to alleviate emotional stress of non-co-resident caregivers of persons with dementia. Furthermore, it is critical to help them utilize adequate caregiver training and education as well as respite care before their loved ones experience dramatic functional and health declines.
... We developed a survey based on the National Survey of Older Americans Act Participants conducted by the Administration on Aging (AoA) (Avison et al., 2018). The original survey has seven sections, including the use of the National Family Caregiver Support Program (NFCSP) services and knowledge and use of formal services. ...
Background and objectives:
While East Asian American family caregivers are known to underutilize formal support services, there is a lack of evidence regarding the associations of formal service utilization with caregivers' well-being. This study examined the prevalence of different types of home-and community-based formal service utilization among Korean and Chinese American family caregivers of persons with dementia and how utilization of such services was associated with their well-being. We also explored their overall experience in accessing and utilizing formal dementia support services and programs.
Research design and methods:
We employed a convergent mixed methods study design. In a convenience sampling method, we recruited 62 family caregivers. Logistic regression and thematic analysis were utilized to analyze data.
Results:
The results showed in-home services were mostly utilized among family caregivers of these ethnic groups. Out of nine different support services, those who utilized nutrition programs and case management were more likely to report higher overall well-being. Four themes were developed: (1) awareness of formal support services but uncertainty on how to access them, (2) language barriers imposing additional challenges in accessing formal support services, (3) traveling to access culturally appropriate services, and (4) desire for culturally tailored medical and long-term care services.
Discussion and implications:
Findings from this study suggest the importance of case management services to overcome barriers to accessing and utilizing a wide range of formal support services and provision of culturally appropriate food in formal support services to increase East Asian American family caregivers' utilization of long-term care services.
... Those who provided formal/paid care were excluded for this study. Initially, the PI (Lee) developed a survey based on the Administration on Aging administered survey on the National Family Caregiver Support Program (Avison et al., 2018) to quantitatively analyze the data. Since this study was conducted in the midst of COVID-19 (May 2020 -August 2021), the research team was concerned about not having enough statistical power of quantitative analysis, which led to redesigning the study as mixed methods, emphasizing rich qualitative data collected from study participants. ...
Objectives
The purpose of this case study series was to present recruitment and data collection strategies used for Asian American ethnic groups by documenting challenges experienced by researchers in the field of aging.
Summary
We compiled four case studies investigating Asian American older adults and/or family caregivers (i.e., Vietnamese, South Asians, Chinese, and Koreans). Each case study employed unique research methods to overcome experienced challenges associated with recruitment and data collection.
Discussion
Three constructs were organized for effective recruitment and data collection strategies of this racial group and included (1) forming a bilingual and bicultural research team (research-centered); (2) establishing reciprocal partnerships between researchers and community partners (community-centered); and (3) understanding the historical and cultural backgrounds of targeted ethnic groups (participant-centered). Approaches taken to address the range of challenges and limitations identified in this case study series may also help increase the representation of Asian-American older adults and family caregivers in research.
Clinical Implications
Successfully including racial and ethnic minority groups in research, especially Asian Americans, may reduce existing racial disparities in mental and physical health. Any barriers and facilitators affecting the research regarding Asian American ethnic groups should continue to be discussed.
... The relationship between caregiver role and well-being can be impacted by social support and other coping strategies. Caregiver support programs address key factors identified in the Stress Process Model [7,8]. For instance, caregivers with more support or better access to resources may be better able to share care responsibilities. ...
Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.
... No care recipients were present during the focus groups. A brief, self-administered survey collected basic caregiver sociodemographic characteristics (e.g., age, race/ethnicity, gender, insurance) (Centers for Disease Control and Prevention [CDC], 2018), self-reported health (CDC, 2018), comorbidities (Chaudhry et al., 2005) and caregiving characteristics (e.g., relationship to care recipient, years caring for person with dementia) (Avison et al., 2018). Caregivers then reviewed a list of community service types indicated for dementia caregiving and self-care developed using extant literature, expert opinion and dementia caregiver feedback (Figure 1). ...
Community resource referral systems have been implemented into care settings that serve persons with dementia but with little input from caregivers. Focus groups were conducted with African American, Hispanic, and Asian caregivers to describe their preferences for community resource referral information. Caregivers discussed the significance of a community resource list for dementia caregiving and self-care and articulated strategies for effective information delivery during a medical visit. Most caregivers acknowledged that resource needs change with progression of dementia, but no patterns emerged with regard to preference for information delivered incrementally based on disease stage or all at once. Hispanic and Asian caregivers felt that resource information should specify service providers’ language and cultural capabilities. All caregivers agreed that delivery by a member of the care team with knowledge of dementia-specific resources would be most effective. Optimal delivery of community resource referrals is caregiver-centered and customizable to individual and subgroup preferences.
... 24,25 A program evaluation demonstrated that caregiver services were effective in reducing caregiver burden, increasing caregiver confidence and increasing their perception that these services are helping them continue in a caregiving role. 26 More research is needed to determine how much and what types of services are most effective toward supporting caregivers and families. ...
Background:
Caregivers are essential for assisting people with disabilities to fully participate in their communities. Past research has primarily focused on family caregivers in the U.S. providing care to older adults rather than children and adults with disabilities.
Objective:
This paper examines the demographic and health characteristics of caregivers of children and adults with disabilities across the lifespan using data from the 2017 Health Information National Trends Survey (HINTS).
Methods:
Chi square, t-test, linear and logistic regression analyses show differences between caregivers and non-caregivers related to gender, age, employment, and specific health outcomes.
Results:
Of 3285 respondents, 18% self-identified as caregivers of children or adults with disabilities (n = 546). Almost one-third of all caregivers reported being diagnosed with depression or an anxiety disorder as compared to one-fifth of non-caregivers. Psychological distress was associated with an increased risk for a diagnosis of depression/anxiety. We also found that distress decreased with age when controlling for other factors.
Conclusion:
This paper increases knowledge of a growing segment of family caregivers providing care for members with disabilities across the lifespan. Research and policy needs are discussed.
Purpose
The purpose of this scoping review was to document the state of the literature regarding the challenges experienced by rural informal caregivers of older adults in the United States.
Method
We reviewed peer-reviewed academic articles published through December 1, 2021, based on Arksey and O’Malley’s framework.
Results
The initial search resulted in 1,255 articles, of which 12 studies were included for the final review. Thematic content analysis was utilized to identify emerging themes of challenges experienced by rural informal caregivers of older adults. The identified challenges include a lack of knowledge regarding resources, financial difficulties, health-related challenges, and barriers related to geographic distance.
Discussion and Conclusion
The implications of these challenges are used to shape recommendations for social work, service planning, and policy changes that can improve caregiving experiences for rural families.
Dementia affects all these people placed between the age-groups of 50-85 years old respectively. The individuals involved in the care of these patients and the continuation of their everyday life, are the Caregivers, together with the narrow core-family relatives, of the suffering dementia patients. Besides working with the patients, the caregivers nowadays are in need of a more effective education, merging the technological knowledge and the clinical practice.
Policymakers and community organizations have implemented numerous programs and services to support the more than 40 million family caregivers in the United States. However, the existence of such services is not sufficient to ensure equitable and optimal access and utilization. Using data from the Caregiving in the US study (2015; n = 1,185), we estimated that nearly one in five family caregivers do not meet broad eligibility criteria for support services. This resource gap was particularly likely to affect high-priority populations such as those caring for someone with a mental health problem. Furthermore, ineligible caregivers had lower service utilization and increased financial strain. The findings highlight a pattern of vulnerability among caregivers who do not meet broad eligibility criteria for financial support resources. Careful policy consideration is needed to determine how support services should be allocated to maximize caregiver and care recipient outcomes at the population level.
BACKGROUND/OBJECTIVES
To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities.
DESIGN
Cross‐sectional study.
SETTING
National telephone surveys administered from 2017 to 2019.
PARTICIPANTS
Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%).
MEASUREMENTS
We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning.
RESULTS
Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0–47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10‐item Scale score was 11.5 (SD = 7.1; range = 0–30). Caregivers also reported high levels of loneliness and financial strain.
CONCLUSION
Caregivers who care for veterans with trauma‐based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.
Objective:
Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia.
Methods:
A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included.
Results:
Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results.
Conclusion:
Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization.
Objective:
To examine the reliability and validity of the short form (SF) and computer adaptive test (CAT) versions of the Patient Reported Outcomes Measurement Information System (PROMIS) measures of social health of caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI).
Design:
Self-report questionnaires administered through an on-line data collection platform.
Setting:
Hospital and community-based outreach at three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility PARTICIPANTS: 560 (344 civilians and 216 military) caregivers of individuals with a documented TBI INTERVENTION: N/A MAIN OUTCOME MEASURES: 5 PROMIS Social Health Measures RESULTS: All five PROMIS social health measures exceeded the a priori criterion for internal consistency reliability (≥ 0.70); most PROMIS measures met the criterion for test-retest reliability (≥ 0.70) in the civilian sample; in the SMV sample, test-retest reliability was generally below this criterion, except for Social Isolation. For both samples, convergent validity was supported by moderate correlations between the 5 PROMIS social health measures and related measures, and discriminant validity was supported by low correlations between PROMIS social health measures and measures of dissimilar constructs. Most PROMIS scores indicated significantly worse social health in both samples of those caring for individuals who were low functioning. Finally, impairment rates in social health were elevated for those caring for low functioning individuals, especially in the SMV sample.
Conclusions:
The PROMIS computer adaptive test and short form social health measures have potential clinical utility for use in caregivers of civilians and SMVs with TBI.
The purpose of the current study was to test the feasibility of using the Patient-Reported Outcomes Measurement Information System (PROMIS ® ) measures to assess change in self-reported health status for dyads of individuals with advanced Parkinson's disease (PD) and their caregivers. Fifteen dyads ( N = 30) participated and took 11 PROMIS measures. The measures showed good reliability (all Cronbach's alphas > 0.82). Dyads reported worse health status than the PROMIS reference groups at baseline and 6-month follow up. Paradoxically, individuals with PD scored higher in Applied Cognition–General Concerns, Companionship, and Emotional Support than the reference groups at both times. The only domain that changed significantly for individuals with PD over 6 months was Applied Cognition–General Concerns. The results of this study suggest that future research (a) could use the PROMIS measures with dyads, and (b) would be warranted for tracking changes over time using the PROMIS measures with larger samples, garnering more power. In addition, future research could examine if the computer adaptive versions work for individuals with advanced PD.
[Res Gerontol Nurs. 2018; 11(3):129–136.]
Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes.
Objectives: Multiple chronic conditions (MCCs) are common and have harmful consequences in later life. Along with managing their own health, many aging adults care for an impaired partner. Spousal caregiving may be more stressful when caregivers have MCCs, particularly those involving complex management. Yet, little is known about combinations of conditions that are most consequential for caregiving outcomes.
Method: Using a U.S. sample of 359 spousal caregivers and care recipients from the 2011 National Aging Trends Study and National Study of Caregiving, we examined three categories of MCCs based on similarity of management strategies (concordant only, discordant only, and both concordant and discordant) and their associations with caregiving difficulties and gains. We also considered gender differences.
Results: Relative to caregivers without MCCs, caregivers with discordant MCCs reported fewer gains, whereas caregivers with both concordant and discordant MCCs reported greater emotional and physical difficulties. Wives with discordant MCCs only reported a trend for greater physical difficulties. Caregivers with concordant MCCs did not report more difficulties or gains.
Discussion: Spousal caregivers with MCCs involving discordant management strategies appear to be at risk for adverse care-related outcomes and may benefit from support in maintaining their own health as well as their caregiving responsibilities.
To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services. © 2017 Project HOPE-The People-to-People Health Foundation, Inc.
Purpose of the Study: We examined the effect of daily stress, affect, and adult day service (ADS) use on the daily pain experience among caregivers of individuals with dementia (IWD). Participants were interviewed for 8 consecutive days. Caregivers utilized an ADS program on some days and provided care at home on other days. We hypothesized ADS use, care-related and noncare-related subjective stress, and affect would significantly influence and interact in ways to exacerbate or buffer the experience of daily pain.
Design: Participants were 173 family caregivers of IWDs using ADS more than 2 days per week. Participants with IWDs diagnosed with “mild cognitive impairment” were excluded. Daily telephone interviews assessed stress, affect, and pain.
Methods: Multilevel models were used to examine the relation between daily stress and daily pain and interaction effects of other daily experiences within the context of ADS use.
Results: Multilevel models revealed a significant relation between care-related subjective stress and daily bodily pain as well as an interaction between noncare-related subjective stress and daily bodily pain. ADS use and affect did not predict daily pain. Lagged effects revealed a significant interaction between yesterday’s ADS use and today’s positive affect on today’s bodily pain.
Implications: Findings suggest that further studies are warranted for understanding and controlling pain among caregivers. Addressing the physical health needs through pain management interventions, positive affect maximization, and ADS use may improve the overall well-being of caregiving dyads.
Objectives:
To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden.
Design:
Nationally representative surveys of caregivers and older adults in the United States.
Setting:
2011 National Health and Aging Trends Study and National Study of Caregiving.
Participants:
Community-dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks.
Measurements:
Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation.
Results:
Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living-related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance.
Conclusion:
Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health-related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults. © 2016 by the National Academy of Sciences. All rights reserved.