Service-Specific Surveying to Support Person-Centered HCBS for Older Adults and Their Caregivers

Abstract The Florida Department of Elder Affairs (DOEA) annually surveys clients receiving state funded home and community-based services (HCBS) to measure their satisfaction with services. Historically, the same survey instrument was used each year, to afford question-level comparisons across time. However, in 2015 internal contradictions were identified between individual-level satisfaction ratings and qualitative statements made by the respondents later in the survey. The high rates of satisfaction typical in survey responses were also contradicted by findings from a comprehensive program evaluation which revealed high percentages of clients who terminated their services and many caregivers reporting strain and varying types of personal crisis. To address these issues, the annual Client Satisfaction Survey and methodology was redesigned to be more specific regarding details about the delivery of direct services, and the sampling methodology was revised to constrain to the recipients of discreet service types. The results from these new service-level surveys will be presented for each of three direct services: case management, personal care, and homemaker. Findings revealed differences across regions in the state, and highlighted the frustration experienced by HCBS clients with high worker turnover and low training for special conditions, such as Alzheimer’s or related dementia. Complaints and suggestions collected from clients and caregivers were shared with program managers for consideration in changes to policies, training, and other areas of service improvement toward becoming more person-centered. Overall, this service-oriented approach to surveying has yielded more actionable results and has been adopted by DOEA as the preferred method for all client-level surveying.

problems. There is a growing awareness that caregivers are also at risk for physical and mental health problems and therefore also require support to reduce stress and maintain optimal health. Research suggests that engaging in creative and artistic activities may reduce stress and improve physical and mental health among caregivers. Researchers from Bethune-Cookman University partnered with the Atlantic Center for the Arts in New Smyrna Beach, FL to evaluate their Creative Caregiving program. Approximately 10 informal caregivers and their care partners met for 2 hours each week over the course of 6 weeks from February 3-March 9, 2020. Participants learned how to connect mind, body and spirit by using the arts as a tool of self-care, social interaction, and learning. At each session, participants were asked to rate their overall wellbeing on a scale from 1-10. Pre-and post-session data was analyzed using paired samples t-tests. Results indicate that there was significant improvement in wellbeing and participants reported improvements in their stress, mood and relationship with their caregiver or care partner. These findings were observed for both caregivers and care partners, suggesting that arts programs can benefit both. Such programs are a fun and cost-effective way to improve wellbeing, at least in the short-term.

RELATIONSHIP QUALITY WITH ADULT CHILDREN AMONG GRANDPARENT CAREGIVERS Heejung Jang, University of Michigan, Ann Arbor, Michigan, United States
For the increasing number of grandparent caregivers, relationship quality with adult children has important implications for the well-being of grandparents. Based on solidarity, conflict, and ambivalence, the present study examines how parent-adult children's relationships differ by grandparent caregiving status on depressive symptoms and psychological well-being. This study uses The 2014 Health and Retirement Study from a sample of 1,197 grandparent caregivers age 51 and older. Latent class analysis is applied to measure affection and conflict in older grandparents-adult children relationships. Results from the latent class analysis identified four clusters: amicable, ambivalent, detached, and disharmonious. OLS regression models are estimated the association between relationship types and depressive symptoms and psychological well-being by grandparent caregiving. For the depressive symptoms, disharmonious relationships with adult children increase depressive symptoms among co-parenting and custodial grandparents. Also, ambivalent and disharmonious relationships with adult children reduce the psychological well-being of older grandparents. The study discusses the variances of the relationships with adult children and their effects on grandparents' well-being. The results will shed light on the importance of familial relationships and will be beneficial for the development and maintenance of policies and practices that support the families of grandparent caregivers. The purpose of this concept analysis is to address fundamental gaps in the understanding of self-efficacy in family caregivers of older adults with cognitive impairment, including updating the 26-year-old concept analysis with a contemporary definition. With the first of the baby boomers set to turn 75 in 2021, the growing number of Americans with Alzheimer's disease is predicted to more than double over the next 30 years, while the pool of potential family caregivers is likely to diminish by half. Research demonstrates that increased self-efficacy can help family caregivers of older adults with Alzheimer's and other types of cognitive impairment experience lower burden and depressive symptom severity. This study utilized Walker and Avant's method of concept analysis, an eight-step iterative process that helps to clarify the meaning of ambiguous concepts. A literature review was conducted from July 1993 through March 2019 using PubMed/MEDLINE, Scopus, CINAHL, and Embase. Eight defining attributes of this concept were identified. The revised definition of self-efficacy in this population is "a family caregiver's confidence in their ability to: manage behaviors and other caregiving stresses, control upsetting thoughts, acquire medical information, manage medical issues, obtain self-care, access community supports, assist with activities of daily living and other care, and maintain a good relationship with a relative, friend, or neighbor of an older adult with cognitive impairment." Practice implications include tailoring interventions to improve family caregiver self-efficacy. Policy implications include fostering evidence-based health strategies through payment and delivery incentives that further support caregiver self-efficacy.

SERVICE-SPECIFIC SURVEYING TO SUPPORT PERSON-CENTERED HCBS FOR OLDER ADULTS AND THEIR CAREGIVERS Caitlyn Walsh, and Jessica Tice, Florida Department of Elder Affairs, Tallahassee, Florida, United States
The Florida Department of Elder Affairs (DOEA) annually surveys clients receiving state funded home and communitybased services (HCBS) to measure their satisfaction with services. Historically, the same survey instrument was used each year, to afford question-level comparisons across time. However, in 2015 internal contradictions were identified between individual-level satisfaction ratings and qualitative statements made by the respondents later in the survey. The high rates of satisfaction typical in survey responses were also contradicted by findings from a comprehensive program evaluation which revealed high percentages of clients who terminated their services and many caregivers reporting strain and varying types of personal crisis. To address these issues, the annual Client Satisfaction Survey and methodology was redesigned to be more specific regarding details about the delivery of direct services, and the sampling methodology was revised to constrain to the recipients of discreet service types. The results from these new service-level surveys will be presented for each of three direct services: case management, personal care, and homemaker. Findings revealed differences across regions in the state, and highlighted the frustration experienced by HCBS clients with high worker turnover and low training for special conditions, such as Alzheimer's or related dementia. Complaints and suggestions collected from clients and caregivers were shared with program managers for consideration in changes to policies, training, and other areas of service improvement toward becoming more personcentered. Overall, this service-oriented approach to surveying has yielded more actionable results and has been adopted by DOEA as the preferred method for all client-level surveying. With over 40 million individuals aged 65 years and older in the US, and by 2050 rising to an estimated 89 million, age matters, driving an increased need for long-term care/eldercare. Coupled with the higher costs of care, the search for long-term care/eldercare services can be a difficult prospect for adult children decision-makers. We present the experiences of adult children decision-makers in the US, using two methodological approaches: narrative and case study using autoethnography. In a narrative inquiry of 9 caregivers responsible for making long-term care/eldercare decisions for their parent(s) the zoom model was applied to conduct the analysis. Findings suggest that decision-makers have a strong sense of duty towards helping their loved ones find long-term care solutions. Decisionmakers searched for many types of care solutions ranging from home health care to nursing homes. The experiential response most consistently stated by the participants was stress. These results are augmented by an autoethnographic case study in "six acts" illustrating how sense of agency in the caregiving journey can be enhanced. Participants with industry experience had a minimal advantage over those with no experience when it came to navigating the search for long-term/eldercare. We highlight why stories of family search for long-term care/eldercare matter, and how they can be leveraged for fundraising, advocacy, and healing. Implications for policy, research, education and practice are highlighted.

THE DIFFERENTIAL EFFECTS OF CAREGIVING INTENSITY ON OVERNIGHT HOSPITALIZATION IN THE PREVIOUS 2 YEARS
Kylie Meyer, 1 Zachary Gassoumis, 2 and Kathleen Wilber, 2

UT Health Sciences at San Antonio, San Antonio, Texas, United States, 2. University of Southern California, Los Angeles, California, United States
Caregiving for a spouse is considered a major stressor many Americans will encounter during their lifetimes. Although most studies indicate caregiving is associated with experiencing diminished health outcomes, little is known about how this role affects caregivers' use of acute health services. To understand how spousal caregiving affects the use of acute health services, we use data from the Health and Retirement Study. We apply fixed effects (FE) logistic regression models to examine odds of experiencing an overnight hospitalization in the previous two years according to caregiving status, intensity, and changes in caregiving status and intensity. Models controlled for caregiver gender, age, race, ethnicity, educational attainment, health insurance status, the number of household residents, and self-assessed health. Overall, caregivers were no more likely to experience an overnight hospitalization compared to non-caregivers (OR 0.92; CI 0.84 to 1.00; p-value=0.057). However, effects varied according to the intensity of caregiving and the time spent in this role. Compared to non-caregivers, for example, spouses who provided care to someone with no need for assistance with activities of daily living had lower odds of experiencing a hospitalization (OR 0.77; CI 0.66 to 0.89). In contrast, caregivers who provided care to someone with dementia for 4 to <6 years had 3.29 times the odds of experiencing an overnight hospitalization (CI 1.04 to 10.38;. Findings indicate that, although caregivers overall appear to use acute health services about as much as non-caregivers, large differences exist between caregivers. Results emphasize the importance of recognizing diversity within caregiving experiences. Family caregivers of older adults report lack of preparation for their role, particularly upon acute hospital discharge following a medical event. Addressing the needs of family caregivers in the acute care setting prior to hospital discharge requires the identification of the caregiver, an assessment of caregiver preparedness, and a plan of care to address gaps in preparedness. The Preparedness Assessment for the Transition Home 7-item (PATH-7) is a valid and reliable instrument developed to assess family caregivers readiness for the caregiving role during acute care. The PATH-7 paper-pencil self-administered assessment was implemented in clinical care in medical-surgical nursing units in 2 acute care hospitals. Interventions to address gaps in preparedness were selected from a catalogue of interventions to develop a caregiver plan of care. The most frequent challenge identified by family caregivers was fulfilling the caregiving role on top of their other roles and responsibilities. This illustrated the need to assist family caregivers with exploring options for recruiting others to help with their roles and responsibilities and identify solutions soliciting and organizing help. This novel program promotes addressing the needs of the family unit, moving to a family-integrated are delivery model. Implementation challenges included in-person contact with caregiver to administer assessment, resources to respond to identified gaps in readiness, and lack of technology-enabled assessment administration. Positive staff experience with identifying and addressing needs of caregivers was a facilitator of staff engagement. Identifying, assessing, and addressing the needs of family caregivers of older adults is feasible in the acute care setting.