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In the United States, under the Cash and Counseling or budget authority model of self-directed personal assistance where the participant manages his or her own services and supports, the Support Broker role was established to assist and coach the participant. The support broker role grew out of a person-centered planning process where focus groups and surveys helped ascertain what potential participants wanted to help them establish a self-directed alternative. But, despite this role being described in policy guidance from the Center for Medicare and Medicaid, little research has been conducted examining the functions, activities and usefulness of this position. This study draws on 76 ethnographic case studies with early Cash and Counseling participants, examines what participants and their caregivers actually saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and family caregivers saw support broker duties as falling into four areas: Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these duties. Key aspects of quality included: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowledge and Cultural Friendliness. These findings can provide the basis for establishing quality indicators for self-direction.

PURPOSE: This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home. METHODS: Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews. RESULTS: Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: Caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals. CONCLUSIONS: These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.

The purpose of this study was to understand the value and impact of the Veteran-Directed Home and Community Based Services program (VD-HCBS) on Veterans' lives in their own voices. Focus groups and individual interviews by telephone were conducted to elicit participant perspectives on what was most meaningful, and what difference VD-HCBS made in their lives. Transcripts were analyzed using content analysis. The sample included 21 Veterans, with a mean age of 66±14, enrolled in VD-HCBS an average of 20.8 months. All were at risk of institutional placement based on their level of disability. Five major categories captured the information provided by participants: What a Difference Choice Makes; I'm a Person!; It's a Home-Saver; Coming Back to Life; and Keeping Me Healthy & Safe. Participants described the program as life changing. This study is the first time that Veterans themselves have identified the ways in which VD-HCBS impacted their lives, uncovering the mechanisms underlying positive outcomes. These categories revealed new ways of understanding VD-HCBS as an innovative approach to meeting the person-centered needs of Veterans wishing to remain at home, while experiencing quality care and leading meaningful lives, areas identified as priorities for improving long term services and supports.

Numerous studies have demonstrated the short-term effectiveness of the Cash and Counseling model option of participant-directed home and community-based personal care service programs for Medicaideligible recipients with disabilities requiring long-term care. However, long-term experiences with participant-directed services have yet to be examined for these individuals. We addressed this gap in the literature through participatory action research and qualitative content analysis. Working together as coresearchers with members of the National Participant Network, a peer organization for people interested in or enrolled in participant-directed services, we interviewed 17 adults enrolled in one state’s Cash and Counseling-based program. Participants’ ages ranged from 40 to 83 years, had been enrolled for at least 5 years, and acted as their own representative within the program. Our major findings show (a) the program’s flexibility allowed for adaptation to meet participants’ changing needs over time and (b) that program attendants helped connect participants with community in multiple ways. In this article, we provide important policy and practice implications for participant-directed programs for people with disabilities.

Background and Purpose: The Resistiveness to Care Scale for Dementia of the Alzheimer's Type was developed to quantify care-resistant behavior. The purpose of this article is to explain how the instrument was modified and tested in two clinical studies that examined interventions to improve the oral hygiene of persons with dementia who resist care. Methods: After pilot testing, the revised instrument (RTC-r) was used in 7 facilities (N = 83 residents). Systematic training procedures were implemented to preserve reliability. Results: Clinical validity was confirmed throughout the pilot and interventional studies. Reliability was assessed using inter-rater reliability, which ranged from 0.87 (p < .001) to 1.0 (p < .001) across 2,328 mouth care observations. Conclusions: The RTC-r validly and reliably measures care-resistant behavior in persons with dementia.

Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities. They represented participants with moderate to advanced dementia and ≥ two additional chronic illnesses. Overall preparedness scores were in the pretty well to very well prepared range, with variation across dimensions and between individuals. Preparedness varied according to what has to be done day-to-day in dynamic or unpredictable situations, gauging decisional capacity, anticipating changing needs, ensuring safety, supporting a dementia-capable care team and negotiation. Stress was related to having a safety net of capable back-up supports and dementia care literacy. Areas of strength, individual variation and particular challenges along the trajectory of representing can guide development of support counselor interventions to provide representatives with tailored training and resources as they enable the benefits of PD for persons with dementia.

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

Aims and objectives To investigate the experiences of ischaemic stroke survivors during the transitional period from the hospital through the first 4 weeks after discharge home. Background Ischaemic stroke survivors describe the transition from hospital to home as an important time in their recovery and describe various physical and cognitive concerns early within the recovery period. Adequate transitional care interventions should be informed by such experiences. Design This is a qualitative descriptive study. Method This study used semistructured telephone interviews and an inductive approach to enable thematic analysis of information from 31 persons experiencing an ischaemic stroke. Results Five major themes emerged: (a) the shock of a stroke interrupting a normal day; (b) transition to an unfamiliar home; (c) uncertainty; (d) understanding a new sense of self; and (e) adjusting to a new sense of self. All participants articulated a need to cope with uncertainty and adjusting to a new sense of self. Ischaemic stroke survivors who experienced less uncertainty described that return to their prior daily routine, preventing another stroke, depended on a helpful support system including frequent follow-up and communication with healthcare professionals. Conclusion All ischaemic stroke survivors are at risk for complications during recovery, regardless of stroke severity. This study found that, even after experiencing minimal physical or cognitive symptoms, ischaemic stroke survivors can have difficulty adjusting to life after discharge. Relevance to clinical practice Adjusting to life after a stroke during the first 4 weeks after discharge home is an in individualised experience. For the complex psychosocial and physical needs of ischaemic stroke survivors, nurses can play an important role beyond symptom management by fostering a dynamic relationship through individualised transitional care based on ischaemic stroke survivors experiences.

This qualitative study draws on 76 ethnographic case studies with Cash and Counseling participants, examines what participants and their caregivers saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and their caregivers saw support broker duties as Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these roles. Six attributes that mattered to participants were: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowldge and Cultural Friendliness. These findings from the participant and caregiver perspective have great import for the training of present and future care managers and support broker, and have implications for regulatory and even licensure requirements. These results can be a first step in constructing a quality framework for self-directed supports and services.

The purpose of this study is to learn how the design and implementation of services and supports within participant-directed programs compare with facilitators versus barriers to support experienced by family caregivers. This study uses a sequential mixed methods design. First, telephone interviews with a purposive sample of family caregivers (n=53) explored their perceptions of challenges they face and the usefulness, effectiveness and gaps in family support resources in participant-directed programs across the caregiving trajectory. The second phase involves describing participant-directed program policies and procedures in Medicaid waivers (n= 240) identified as important by caregivers including family assessment, hiring restrictions for caregivers, budget authority, training requirements, accessible resources and qualifications of support brokers. Descriptive statistics are used to identify trends across programs and compare their alignment with best practices and gaps in supportive characteristics identified by family caregivers. Results show variability in the frequency of facilitators and barriers within and across programs, discrepancies between resources available and caregiver perceived gaps and inconsistencies in qualifications of support brokers whose role was perceived as essential. Qualitative data were used to enrich the interpretation of quantitative results, shedding light on barriers to the ability to benefit from program resources such as respite that are designed to be supportive, the impact of policies on caregivers and the benefits of budget, as well as employer, authority enabled through participant direction. This research is part of the Family Support Research & Training Center to inform practice and policy to support family caregivers.

At least 43.5 million family caregivers are providing supports and services to older people and others with disabilities who want to remain in the community. Research on the needs of these family caregivers is growing but far less is known about funding sources for the supports these informal caregivers need. Medicaid is the largest public payer for home and community-based supports, but, other than the seminal work done at AARP’s Public Policy Center (Kelly, Wolfe, Gibson & Feinberg, 2013), the types of supports available under various Medicaid funding authorities in state Medicaid programs around the country has received scant attention. Examining data from 138 state Medicaid 1915c HCBS waivers for people who are self-directing their supports and services, the research presented in this paper examines state Medicaid provisions in eight areas where family caregivers themselves have indicated they could use help. Data show that the majority of these supports are limited to programs serving children, adults with intellectual and developmental disabilities, and people with particular conditions such as autism or TBI. After focusing on states with promising approaches, this poster examines provisions discussed with policymakers and advocates at a June 18, 2018 state of the science meeting examining innovative approaches ranging from care manager training on family needs, to assessing family caregiving needs and then having Medicaid funding to address those very needs. Attention is also given to programs that pay family caregivers or make registries of potential workers available.

Unmet need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of a budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment (CCDE) documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper reanalyzes 76 case studies from the CCDE to, for the first time gain an understanding of what those unmet needs are, who sees them, and what participants, caregivers and support brokers think might reduce this problem. Using a collective or multiple case study approach to understand this phenomenon, unmet needs were sorted into five categories using real life experiences of respondents. Unmet needs for assistance in managing the employer and budget tasks of self-direction were also captured.This paper discusses situations where the clinician researchers documented needs that were not expressed by the care recipients and provides a picture of where and why unmet needs remain.The paper concludes with strategies for reducing unmet needs and training future social workers.

Background Young adults with disabilities face numerous barriers to independence and achieving markers of adulthood. Qualitative evidence suggests that flexible, self-directed budgets for purchasing home and community-based services might help fill an identified service gap and help improve the transition to adulthood for this group. Objective Our aim was to evaluate the effectiveness of the Cash and Counseling model of self-directed budgets for young adults with long-term care disabilities by analyzing secondary data from the Cash and Counseling Demonstration and Evaluation randomized control trial. Methods We compared nine-month community involvement, satisfaction rating, health status rating compared to peers, and unmet needs outcomes using bivariate and multivariate logistic regression. Our sample included 456 participants aged 18 to 30 randomized to treatment groups with the opportunity to receive Cash and Counseling ( n = 207) or control groups eligible for agency-based care ( n = 249), whether self-reported ( n = 128) or by proxy ( n = 328). Results Multivariate logistic regression models showed that compared to controls at nine-month follow-up, treatment group members had significantly greater odds of being very satisfied with life, when care was received, the care arrangement, transportation, help around the house and community, personal care, and getting along with paid attendants, and significantly lower odds of unmet needs with medication and routine health care at home and with transportation. Conclusions Cash and Counseling performed better than or comparable with agency-based care for young adults with long-term care disabilities, suggesting its viability as a service option for this population.

The Veteran-Directed Home and Community Based Services Program (VD-HCBS) operates using a participant-direction approach, allowing Veterans to self-direct services. Only a small body of literature has explored the impact of these programs on caregivers. This study aimed to explore the experiences of caregivers in VD-HCBS. Telephone focus groups and interviews were conducted with caregivers (n = 23; 52.2% spouses; 8.7% male). Conventional content analysis revealed five categories: Coming home and staying home; Taking the pressure off; Providing security; Giving us time as a couple; and Importance of choice. Stories highlighted sources of stress and mechanisms behind stress relief and support.

Background Our aim was to explore previously unknown long-term outcomes of self-directed personal care services for young adults with intellectual disabilities and limitations in activities of daily living. Materials and Methods The present authors utilized participatory action research and qualitative content analysis in interviewing 11 unpaid familial programme representatives of young adults with intellectual disabilities, ages 23–34, who were eligible for income-based Medicaid and enrolled five or more years in a Cash and Counseling-based programme of self-direction in the United States. Results Young adults are represented as receiving services and supports in a supportive and stable environment, with previously identified short-term programme benefits evident over the long-term. Young adults are also transitioning to adulthood at home with their families as primary social support and caregivers, bridging a service gap. Conclusions Our results show that self-direction helps meet these young adults’ personal care and community engagement needs over time.

The “support broker” (also called “coach” or “counselor”) is an essential element of participant directed (PD) programs. The primary function of the support broker is to help participants develop the skills to self-direct. This study explored caregiver perceptions of characteristics of effective support brokers. Family caregivers (n=53) with a range of developmental, physical, and aging-related disabilities enrolled in PD programs were interviewed (age 34–78, M 59.9 ± 8.8; male 19%; spouse 17%; parent 60%). Qualitative content analysis revealed rich information about the characteristics of supportive support brokers, and also about support broker characteristics that were not supportive. Support brokers directly influenced many of the challenges caregivers identified. A responsive, imaginative, and involved support broker was identified as a major source of effective support. Conversely, frequent support broker turnover, limited knowledge and involvement, and the perception that the support broker was simply there to “check boxes” became sources of additional stress. Support brokers are uniquely positioned to help caregivers navigate the complexities of the healthcare system, thereby decreasing stress and strain. For example, many of the roadblocks that caregivers identified as difficult could often be negotiated by a support broker. Support brokers can serve as an avenue for caregivers to find out about additional supports within the PD program, as well as organizations outside of PD, such as disease-specific support groups, which caregivers identified as an additional source of support. This research is part of the Family Support Research & Training Center.

The primary purpose of this pilot study was to test the feasibility of an intervention designed to reduce care-resistant behaviors (CRBs) in persons with moderate-to-severe dementia during oral hygiene activities. The intervention, Managing Oral Hygiene Using Threat Reduction (MOUTh), combined best oral hygiene practices with CRB reduction techniques. Oral health was operationalized as the total score obtained from the Oral Health Assessment Tool (OHAT). CRB was measured using a refinement of the Resistiveness to Care Scale. Seven nursing home residents with dementia received twice daily mouth care for 14 days. The baseline OHAT mean score of 7.29 (SD = 1.25) improved to 1.00 (SD = 1.26, p < .001); CRB improved from 2.43 CRBs/minute (SD = 4.26) to 1.09 CRBs/minute (SD = 1.56, t = 1.97, df 41, p= .06). The findings from this pilot study suggest that the MOUTh intervention is feasible and reduced CRBs, thus allowing more effective oral care.

Purpose The purpose of this study is to explore the attitudes that contribute to psychological insulin resistance (PIR) in insulin-naive patients with type 2 diabetes and to identify predictors of PIR. Methods A prospective study using 2 self-report surveys and incorporating demographic and health variables was conducted to determine the prevalence of PIR among a sample of 100 adult, insulin-naive patients with type 2 diabetes at an outpatient diabetes center in a university-affiliated teaching hospital. Results Thirty-three percent of patients with type 2 diabetes were unwilling to take insulin. The most commonly expressed negative attitudes were concern regarding hypoglycemia, permanent need for insulin therapy, less flexibility, and feelings of failure. Less than 40% expressed fear of self-injection or thought that injections were painful. However, compared with willing subjects, unwilling subjects were more likely to fear injections and thought injections would be painful, life would be less flexible, and taking insulin meant health would deteriorate (P

A conceptual model and objective scale for measuring resistiveness to care in individuals with advanced dementia of the Alzheimer type (DAT) were empirically generated from the perspective of nursing staff caregivers and through observation of residents with DAT. The resistiveness to care scale (RTC-DAT) was judged to have content validity and reduced to 13 items. Quantifiable scoring procedures and methods for rating videotapes and conducting clinical observations were developed. The RTC-DAT was tested with 68 subjects at three sites. The RTC has a range of 0-156. Initial testing provided reliability estimates of .82-.87 for internal consistency and good to excellent kappas. Criterion-related validity with observed discomfort and construct validity by factor analysis support the RTC-DAT. Measurement issues and recommendations for use in research are discussed.

Background Nursing home residents with dementia are often dependent on others for mouth care, yet will react with care-resistant behavior when receiving assistance. The oral health of these elders deteriorates in the absence of daily oral hygiene, predisposing them to harmful systemic problems such as pneumonia, hyperglycemia, cardiac disease, and cerebral vascular accidents. The purpose of this study is to determine whether care-resistant behaviors can be reduced, and oral health improved, through the application of an intervention based on the neurobiological principles of threat perception and fear response. The intervention, called Managing Oral Hygiene Using Threat Reduction, combines best mouth care practices with a constellation of behavioral techniques that reduce threat perception and thereby prevent or de-escalate care-resistant behaviors. Methods/Design Using a randomized repeated measures design, 80 elders with dementia from 5 different nursing homes will be randomized at the individual level to the experimental group, which will receive the intervention, or to the control group, which will receive standard mouth care from research team members who receive training in the proper methods for providing mouth care but no training in resistance recognition or prevention/mediation. Oral health assessments and care-resistant behavior measurements will be obtained during a 7-day observation period and a 21-day intervention period. Individual growth models using multilevel analysis will be used to estimate the efficacy of the intervention for reducing care-resistant behaviors in persons with dementia, and to estimate the overall efficacy of the intervention using oral health outcomes. Activity-based costing methods will be used to determine the cost of the proposed intervention. Discussion At the conclusion of this study, the research team anticipates having a proven intervention that prevents and reduces care-resistant within the context of mouth care. Long-term objectives include testing the effect of the intervention on systemic illnesses among persons with dementia; examining the transferability of this intervention to other activities of daily living; and disseminating threat reduction interventions to nursing home staff, which may radically change the manner in which care is provided to persons with dementia. Trial Registration ClinicalTrials.gov: NCT01363258

Background Hospitalized patients encounter stressors that impact their experience and recovery. There is a need for theoretically-based, empirically supported nursing interventions to create a therapeutic and healing environment that decrease stress and improve patients' experiences. Purpose To determine whether pet therapy interventions improve physiological, behavioral and mood outcomes and experiences of hospitalized patients. Methods A single group pre–post-quasi–experimental design with mixed methods was used in 59 hospitalized patients. Paired t -tests were used to evaluate changes from baseline following a pet therapy intervention. Qualitative data were analyzed using content analysis. Results Compared with baseline, patients had significant decreases in pain, respiratory rate and negative mood state and a significant increase in perceived energy level. Quantitative and qualitative findings provide support for decreased tension/anxiety and fatigue/inertia and improved overall mood. Conclusions Pet therapy is a low-tech, low-cost therapy that improved mood and was meaningful to hospitalized patients.

The purpose of this study is to explore the attitudes that contribute to psychological insulin resistance (PIR) in insulin-naive patients with type 2 diabetes and to identify predictors of PIR.A prospective study using 2 self-report surveys and incorporating demographic and health variables was conducted to determine the prevalence of PIR among a sample of 100 adult, insulin-naive patients with type 2 diabetes at an outpatient diabetes center in a university-affiliated teaching hospital.Thirty-three percent of patients with type 2 diabetes were unwilling to take insulin. The most commonly expressed negative attitudes were concern regarding hypoglycemia, permanent need for insulin therapy, less flexibility, and feelings of failure. Less than 40% expressed fear of self-injection or thought that injections were painful. However, compared with willing subjects, unwilling subjects were more likely to fear injections and thought injections would be painful, life would be less flexible, and taking insulin meant health would deteriorate (P.005 for all comparisons). Poorer general health and higher depression scores also correlated with PIR.The results of the surveys, which were generally consistent, identified several remediable misconceptions regarding insulin therapy and suggest targets for educational interventions.

Purpose: Previous research from the Cash andCounseling Demonstration and Evaluation (CCDE) inArkansas, New Jersey, and Florida suggests thatgiving consumers control over their personal caregreatly increases their satisfaction and improvestheir outlook on life. Still, some argue that consumer-directed care may not be appropriate for consumerswith intellectual disabilities or mental health diag-noses.Thisstudyexamined howCashandCounseling—a new option allowing consumers to manage anindividualized budget equivalent to what agencieswould have spent on their care—changes the wayconsumers with mental health diagnoses meet theirpersonal care needs and how that affects their well-being. Design and Methods: Using the ArkansasCCDE baseline and the 9-month follow-up data forindividuals in the treatment and control groups, wecompared and contrasted the experience of elderlyconsumers with and without mental health diagnosesutilizing logit regression. Results: After examiningseveral outcome measures, including satisfactionwith care arrangements and the paid caregiver’sreliability and schedule, unmet needs, and satis-faction with the relationship with paid caregivers,this study found evidence that, from the perspectiveof consumers, the Cash and Counseling programworks well for participants with mental health diag-noses. Implications: Considering the growing needfor long-term-care services and the limited resourcesavailable, a consumer-directed option makes sense,and it can be a valuable alternative for persons withmental health needs.Key Words: Elderly, Mental health, Consumerdirection, Cash and Counseling

Background: The pressing need for interventions to improve outcomes for vulnerable caregivers of individuals with Alzheimer's disease (AD) is hindered by inadequate knowledge of variables affecting intervention delivery, receipt, and enactment. Objective: To analyze intervention implementation issues encountered within the Bathing Persons with Alzheimer's Disease at Home (BATH) study. Methods: The BATH study, a home-based, randomized, controlled trial of interventions to improve behavioral symptoms and caregiver self-efficacy, consisted of 130 intervention visits to 42 care recipients-caregiver dyads. Data include direct observation, nurse interventionist field notes, case analyses, and caregiver journals, reflecting various perspectives. Content analysis was used to identify key treatment process themes. Results: Issues that affected the delivery, receipt, and enactment of interventions reflect the intersection of in vivo caregiving and research design. Discussion: The primary lessons learned were: (a) early identification of caring dyads prior to crisis must be improved; (b) in vivo observation is essential to individualized interventions targeting behavioral etiologies and developing caregiver skills; (c) intervention delivery depends on the nurse interventionist's skills and a flexible, trusting researcher-dyad relationship; (d) complex caregiver situations affect treatment receipt and enactment; and (e) intervention enactment requires coaching, practice, and support over time. These findings help to explain issues impacting intervention implementation to a vulnerable population. Recommendations for intervention research design to maximize internal and external validity in real-life care contexts can inform future outcome studies, aid in the search for improved care, and lead to supportive public policy for families living with AD.