Access barriers to and unmet needs for home- and community-based services among older korean americans

This cross-sectional survey study of 146 caregivers of older Korean Americans explored access barriers to and unmet needs for home- and community-based services (HCBS) programs (respite care, adult day care, personal care, home health, housekeeping, and transportation). Most often reported access barriers were lack of awareness and care recipient refusal. Predictors of unmet needs varied depending on the type of service, but included caregiver gender, relationship, education, caregiving duration, Medicaid coverage, English proficiency, caregiver self-efficacy, care recipient functional dependency, cognitive impairment, and caregiving hours. This study highlighted unmet needs for HCBS in Korean American communities, pointing to the pressing need for a collaborative effort to develop plans that modify and expand HCBS programs for older Korean Americans.     

Medication use among Medicaid users of home and community-based services

This study examines factors associated with access to medications for older persons and younger adults with physical disabilities who use Medicaid home and community-based services (HCBS). Using data from a six-State survey, we find the large majority of this population receives the medications it needs and has needed assistance in taking these drugs. However, 6.3 percent of this population reports unmet medication needs with financial access listed as the primary reason. Lack of transportation increases the probability of unmet need, while increased satisfaction with paid help lowers this probability. This study highlights the need to study the interaction of Medicaid, social services programs, and financial barriers for this disabled population.     

Variation in Older Americans Act Caregiver Service Use,Unmet Hours of Care,and Independence Among Hispanics,African Americans,and Whites

Home- and community-based services (HCBS) are underused by minority seniors and their caregivers, despite greater rates of disability. We examined racial/ethnic variation among 1,749 Hispanics, African Americans, and Whites receiving Older Americans Act Title III caregiver services in 2009. In addition, we identified the volume of services used by caregivers, their unmet hours of respite care, and the relationship between service use and seniors' ability to live independently. Minority caregivers cared for seniors in urban areas who had higher rates of disability, poverty, and Medicaid coverage. Hispanics had the highest rate of unmet hours of care, while caregiver services were less likely to help African Americans remain at home. Minorities sought services through community agencies and were more educated than demographically similar national cohorts. Greater efforts to reach minority caregivers of less educated, disabled seniors in urban areas and through community agencies may reduce unmet needs and support independent living.     

Are community health workers more effective in identifying persons in need of home and community-based long-term services than standard-passive approaches

Consumers prefer home and community-based long-term care (LTC) services (HCBS) but lack information on those services. We examined the use of community health workers (CHWs) to find and help Medicaid beneficiaries with unmet LTC needs access HCBS compared to standard HCBS outreach approaches. We found that CHWs were very effective at finding persons with greater needs and were better able to help them access a greater range of HCBS services. We also found that five times fewer HCBS beneficiaries helped by CHWs had to use nursing home care services than those not helped by the CHWs despite the fact that their health status was poorer than those not helped by the CHWs. Our study provides evidence of the effectiveness of CHWs for HCBS service awareness and navigation.     

Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19

BackgroundIn response to COVID-19, many state Medicaid Home and Community-Based Services (HCBS) programs increased flexibilities and options for self-direction.ObjectiveOur study sought to investigate the experiences of individuals self-directing during COVID-19. In particular we explored the following areas: 1) How have individuals maintained access to HCBS and workers?; 2) how have individuals maintained safety against COVID-19?; and 3) how have individuals maintained their health and well-being?MethodsWe partnered with community-based and national disability organizations for recruitment. We used a semi-structured interview guide to conduct remote interviews with 36 individuals from eleven states. The sample was diverse with regard to age, race/ethnicity, gender, and disability type.ResultsThree main themes emerged related to maintaining access to HCBS and direct care workers: 1) Benefits of authority to hire and fire; 2) benefits of ability to hire family members; and 3) fluctuations in needs and availability of workers. Two themes emerged related to maintaining safety against COVID-19: 1) Strategies for staying safe with workers; and 2) barriers in public health and service system response. Three themes emerged related to maintaining health and well-being: 1) Barriers to basic needs; 2) delaying needed care; and 3) use of telehealth and technology.ConclusionsThis study was among the first to examine the experiences of individuals self-directing their HCBS during COVID-19. The flexibility of the model provided many benefits, which have implications for future policy and practice. Findings also highlight barriers in maintaining health and well-being during COVID-19, illustrating the importance of planning for future public health emergencies.     

Caregiver Stress: Does States’ Expenditure on Home- and Community-Based Services Matter?

This study examined how state expenditure on home- and community-based services (HCBS) and individual factors are associated with caregiver stress. A total of 1,849 cases from the 2004 National Long-Term Care Survey were included. Gender, education, perceived physical strain, and economic hardship, as well as the number of limitations in instrumental activities of daily living (IADL) for the care recipient, were associated with caregiver stress. The cross-level interaction between service utilization and state expenditure on HCBS was significant, suggesting that living in states with a higher expenditure on HCBS is associated with reduced stress regardless of service utilization.     

Program and policy issues affecting home and community-based long-term care use: findings from a qualitative study

This paper describes a qualitative study of factors affecting decisions about use of Medicaid-funded long-term care (LTC) services in Arkansas for the elderly (aged 65+), non-elderly adults with physical disabilities (aged 21-64), and adults with developmental disabilities (aged 18+). From focus groups with LTC service providers and key informant interviews with consumers and other decision-makers, three themes for improving LTC services emerged: (1) Leveling the playing field for home and community-based services (HCBS) and institutional services; (2) information dissemination and counseling; and (3) expanding services to meet unmet needs. Policy recommendations are made to improve access to HCBS.     

Immigrant status and unmet health care needs

OBJECTIVES: To compare whether unmet health needs differ between immigrants and non-immigrants, and examine whether help-seeking characteristics account for any unmet needs disparities. METHODS: The data are from the Canadian Community Health Survey Cycle 1.1, conducted by Statistics Canada in 2000-2001. The study sample includes 16,046 immigrants and 102,173 non-immigrants aged 18 and older from across Canada. The study employs logistic regression models to examine whether help-seeking behaviours explain unmet needs differences. RESULTS: Logistic regression analysis indicates that immigrants have a 12% (95% CI: 6-18) lower all-cause unmet needs risk (odds ratio) than non-immigrants after controlling for differences in help-seeking characteristics. The unmet needs risk among long-term immigrants (15 years of residence and more), however, is similar to non-immigrants after considering these characteristics. We found differences between immigrants and non-immigrants in reasons for unmet needs, with more immigrants believing that the care would be inadequate, not knowing where to access health care, and having foreign language problems. CONCLUSIONS: The Canadian health care system delivers sufficient health care to immigrants, even though the poverty rate and proportion of visible minorities are comparatively higher within this subpopulation. Nonetheless, these results indicate that some immigrant-specific health care access barriers may exist.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Personal care satisfaction among aged and physically disabled Medicaid beneficiaries

We analyzed survey data from 2,325 Medicaid home and community-based services (HCBS) beneficiaries in six States to estimate satisfaction with personal care services. We constructed an eight-item scale rating various aspects of paid assistance and estimated satisfaction for the total sample and for older and younger persons with disabilities. Younger persons with significant health problems and those residing in group settings were less satisfied. Higher unmet need for assistance with activities of daily living (ADLs), and instrumental activities of daily living (IADLs) was associated with decreased satisfaction, and matching race between a client and paid caregiver was associated with significantly increased satisfaction in all age groups.     

The Impact of Family Relations on Caregivers' Positive and Negative Appraisal of Their Caretaking Activities

This study examined the impact of family support and relationship difficulties between the caregiver and the care recipient on caregivers' satisfaction received from caregiving activities and subjective burden. Ninety‐seven individuals caring for a spouse or an adult child with schizophrenia or bipolar disorder participated in the study. Using hierarchical multiple regression analyses, findings showed that relationship difficulties between the caregiver and the care recipient were associated with both satisfaction received from caregiving activities and subjective burden, after the effects of personal, contextual, and stressor variables were controlled. Family support was not associated with caregivers' appraisal of the situation.     

The Costs and Rewards of Caregiving Among Aging Spouses and Adult Children*

Using a social exchange perspective and data from a national sample of 978 spouse and child caregivers of older family members, this study assessed the association between caregiver relationship and gender and the costs and rewards of caregiving. We also evaluated whether relationship and gender moderate the effects of helpfulness on caregiver costs and rewards. Results supported the hypotheses that women, whether wives or daughters, experience more caregiving costs than do men, and that adult children experience more rewards than do spousal caregivers. In addition, care recipient helpfulness was associated with greater increases in rewards for spousal caregivers than for adult children caregivers.     

Caregivers' unmet needs for support in caring for functionally impaired elderly persons: a community sample

Few estimates have been made of the extent to which the needs of caregivers are met. In addition to the inadequate capacity of services, many caregivers lack adequate financial resources, social resources, or other means to access them. Caregivers who provide services to minority or poor elderly may be particularly needy since their care receivers tend to be less healthy and are less likely to use institutional facilities. To address this issue, the authors studied a community sample of 124 caregivers who identified correlates of their perceived unmet caregiver needs and their use of supportive services available for their caregiving. Results indicated that 51.8 percent of women and 67.4 percent of men reported needs for one or more community services that were not met. It was concluded that caregivers who are poor or who required financial assistance are at the highest risk for needing assistance while providing caregiving services. Community services may more effectively target potential needs of caregivers through routine screenings.     

Guardians of health: The dimensions of elder caregiving among women in a Mexico City neighborhood

Little is known about the family care of older adults in Mexico and the role of women in this process. To begin to fill this knowledge gap, this paper describes how a small sample of low-income women in one Mexico City neighborhood conceptualized the caregiver role and identified the forms of assistance they gave to their older relatives on a daily basis. A grounded theory approach was used to collect and analyze the data. Forty-one semi-structured qualitative interviews were conducted with female caregivers. The age of participants was between 19 and 83 years, and care recipients between 56 and 92 years. The relationship of caregiver to care recipient was wife, daughter, daughter-in-law, granddaughter, sibling, and other relative. The mean length of time providing care was 5 years. Most participants were not employed outside the home, and the median monthly household income was 2000 pesos. We found that caregiving was a life-changing event, with 27 of 41 participants viewing themselves as guardians. Caregivers' emphasis was on care recipients' emotional needs in order to provide “the most precious gift” of “time and attention.” Two forms of assistance were ‘keeping company’ and ‘watching out’ as safeguards against poor health or further decline in health. These findings increase the cultural understanding of caregiving in Mexico. Further research is needed to test the caregiving concepts identified in this study.     

Health Care Utilization and Unmet Needs in Chinese Older Adults With Multimorbidity and Functional Impairment

ObjectivesChina has the world's largest aging population, of which 46% have multimorbidity and 38% have functional impairment. Older adults with multimorbidity often suffer functional impairment as well; however, it is not clear how current health care services have been used in this population. This study aimed to compare health care utilization among Chinese older adults at different levels of chronic disease and functional impairment.DesignA cross-sectional design. Multivariate 2-part models were used to examine the probability and frequency of health care utilization.Setting and ParticipantsData were from 5166 adults aged 65 or older from the 2015 wave of the China Health and Retirement Longitudinal Study. The sample included 22% without any chronic condition, 27% with 1 chronic condition, 44% with multimorbidity, and 7% with multimorbidity and functional impairment.MeasuresHealth care utilization included outpatient visits, inpatient visits, and unmet hospitalization needs.ResultsAs the number of chronic conditions and functional impairments increased, older adults tend to access health care more. Older adults with both multimorbidity and functional impairment tend to use health care services most, but still reported the highest level of unmet hospitalization needs among all groups.Conclusions and ImplicationsChinese older adults with multimorbidity and functional impairment may have experienced multiple barriers in accessing health care. Social programs should be created to make health care more accessible among older adults. The health care delivery system could be oriented to home-based medical care, which have been found effective in delivering high-quality care and reducing health care costs.     

An exploration of help-seeking behaviour in older people with unmet needs

BACKGROUND: Despite decades of research showing high rates of unmet need in older people, there currently is little understanding of why these needs remain unmet. This study was performed as part of a larger feasibility study of a multidisciplinary needs assessment tool in primary care. OBJECTIVE: The aim of the present study was to explore patients' and carers' help-seeking behaviour and perceived barriers to meeting unmet needs. METHOD: Four general practices were selected purposefully in inner city and suburban London A random sample of 1 in 20 people aged 75 years and over registered with each practice was selected for a multidisciplinary needs assessment using the 'Camberwell Assessment of Need for the Elderly' (CANE) schedule and unmet needs identified by patients and their informal carers. For each unmet need, a further semi-structured interview was used to explore the help-seeking behaviour and perceived barriers to meeting their needs. Responses were recorded verbatim contemporaneously and a thematic analysis performed on perceived barriers following completion of all interviews. RESULTS: A total of 55/84 (65.5%) of patients and 15/17 (88%) of carers completed the initial needs assessment. For 104 unmet needs identified by 31 patients and 11 carers, a further interview was completed on the barriers to meeting that need. Help had been sought for only 25/104 (24%) of unmet needs and it had been offered in only 19/104 (18%). In those not seeking help, withdrawal, resignation and low expectations were dominant themes. In those that had sought help, there were issues of perceived failure of service delivery and rationing, with themes of resignation and withdrawal again emerging in those declining help offered. CONCLUSION: The majority of older people and their carers do not appear to seek help for their unmet needs for a range of complex reasons, often involving issues of withdrawal, resignation and low expectations. This complexity has implications for the commissioning of services for older people.     

Relationship between Mastery and Caregiving Competence in Protecting against Burden,Anxiety and Depression among Caregivers of Frail Older Adults

Objective

Studies suggest the protective effect of mastery and caregiving competence against psychological stressors of caregiving in the context of dementia, although the interplay between the two with caregiver outcomes is not well understood. This study examines the independent and moderating impact of mastery and caregiving competence on burden, anxiety and depression among caregivers of older adults with frailty-related care needs.

Design, Setting and Participants

This is a cross-sectional study of 274 older adults-family caregiver dyads from a hospital in Singapore. Mean ages of the older adults and their caregivers were 85 and 59 years respectively.

Measurements

We performed hierarchical linear regression models to examine the independent influence of mastery and caregiving competence on caregiver burden, anxiety and depression. We also examined the interaction effect between mastery and caregiving competence for each outcome.

Results

Mastery and caregiving competence were independently negatively associated with caregiver burden, anxiety and depression. Mastery explained more variance than caregiving competence and had a stronger correlation with all outcomes. There was a statistically significant interaction between mastery and caregiving competence for depression (interaction term beta=.14, p<0.01), but not burden and anxiety. High levels of mastery are associated with less depression. particularly among caregivers with below-average levels of caregiving competence. Likewise, high levels of caregiving competence are associated with less depression. particularly among caregivers with below-average levels of mastery.

Conclusion

Our findings suggest potential benefits adressing targeted interventions for mastery and caregiving competence of caregivers to older adults as they independently influence caregiver outcomes and moderate each other’s effect on depression. Mastery-based interventions should be incorporated into current caregiver training which traditionally has focused on caregiver competence alone.

     

Profiles of Met and Unmet Needs in People with Dementia According to Caregivers’ Perspective: Results from a European Multicenter Study

ObjectivesThis exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles.DesignA longitudinal international cohort study.Setting and ParticipantsThe baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis.MethodsA latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles.ResultsFour distinct need profiles were identified through latent class analysis. These comprised a “no need” profile (41% of the sample), a “met psychological needs” profile (25%), a “met social needs” profile (19%), and an “unmet social needs” profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the “unmet social needs” profile.Conclusions and ImplicationsIn this large European sample, there was a subgroup of persons with dementia with high “unmet social needs” whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people.