Unmet needs in self-directed HCBS programs

ABSTRACT

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.     

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.     

Service Barriers of Chinese Family Caregivers in Canada

ABSTRACT

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.     

Preparedness of representatives for people with dementia in a self-directed program

ABSTRACT

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.     

Grief Support Groups Used by Few—

Abstract

Few adult bereaved attend closed grief support groups, yet many of those who do attend say they are extremely helpful. This research explores factors influencing support group attendance, and the extent to which bereavement support needs are being met. Focus group discussions reveal that a broad scope of sources of support is available to the bereaved. Results show what is seen as unhelpful to them, and what might be more helpful to them. The study indicates many adult bereaved suffer from an overall lack of support and would benefit from more caring overtures from those around them. Findings from this small frontline hospice bereavement study point toward ideas for adjustments in support groups and innovative bereavement education and programming.     

清代北京房产交易中的官房牙

在清代北京房产交易中,官房牙协助官方征收房宅契税。本文依据清代北京房契[1]与相关资料,就不同时期官房牙与契税征收的变动情况,官房牙的职能与职能转换、承充年限、活动区域及弊端等情况做一初步考察。     

Changes in Life Satisfaction Among Participants of Adult Day Care and Their Informal Caregivers

This paper examines changes in life satisfaction among participants of Adult Day Care (ADC) in Manitoba, Canada, and their informal caregivers (where applicable). ADC participants (N = 112) and their informal caregivers (N = 34) were interviewed at two points in time. Data analyses reveal that, during attendance at the program, the life satisfaction of both the participant and the informal caregiver tend to improve. Attempts to predict which participants are most likely to improve, remain stable, or deteriorate in life satisfaction were largely unsuccessful. A smaller group of participants in Winnipeg programs were matched on age, sex, functional disability and illness with two control groups. Analyses reveal improvements in life satisfaction among ADC participants appear to be program effects.     

Caregiver Isolation

Abstract

Caregiving to a partner with Alzheimer's disease results in isolation, which impacts on the help/service seeking behaviors of care givers. In-depth interviews done with caregiving wives found that they experienced multiple dimensions of isolation. A tentative ecological model of the dimensions of caregiver isolation is proposed. Research participants did not engage early in supportive help because they were not aware of their isolation, did not know about available supports, and were not identified by medical or social services personnel as needing support and assistance. Social workers need to be aware of the isolating effects of caregiving and reach out to caregivers to avoid or lessen isolation in their caring role.     

Perspectives of South African caregivers in receipt of Child Support Grants: Implications for family strengthening interventions

Cash transfers have delivered measurable benefits for poor and vulnerable children in low‐ and middle‐income countries. However, on its own, a cash transfer is insufficient to promote holistic child well‐being. In the quest for appropriate complementary family support services, known as ‘cash plus’ programing, this qualitative study sought to explore the perspectives of a group of South African caregivers, all of whom were in receipt of a Child Support Grant (CSG), in relation to their own caregiving and family functioning. Critical areas of support to families were identified to further scale up the already positive impacts of the CSG, such as mental health services, social supports for caregivers, decreasing levels of poverty and growing caregiving knowledge and skills. Key conclusions are that improving the quality and integration of public services and developing culturally appropriate and evidence‐based family strengthening programmes are critical to complement and boost the positive impacts of the CSG.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.     

Volunteerism and Older Adults

Abstract

This study was designed to examine differences in care-giver and care recipient characteristics, caregiving and work demands and resources, and role strain among Black, Hispanic, Asian, and White employed family caregivers. Significant differences were found with respect to caregiver and care recipient characteristics, types of assistance provided, and workplace support. Minority caregivers were economically disadvantaged and provided higher levels of care. Whites reported higher levels of role strain than Black and Hispanic caregivers, after controlling for caregiver and care recipient characteristics, demands, and resources. The findings indicate that care giving policies and programs must be broadened to incorporate the strengths and needs of ethnically diverse caregivers. Family practitioners need to be able to assess the applicability and differential impact of particular interventions, policies, and benefits, and to design relevant programs for ethnically diverse care-givers and their families.     

Mosaic of Difference

Summary

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

Experiences of Caregivers in a Dementia Simulation Program

Abstract

Objectives: Simulation-based training has been used in health care to increase clinical knowledge and skills and understanding the experience of others. There is a lack of research in exploring experiences of caregivers of people with dementia in a dementia simulation program and its potential benefits on caregivers. The purpose of this qualitative study was to explore experiences of caregivers of people with dementia who participated in a dementia simulation program, called Dementia Live?.

Methods: Fourteen caregivers were interviewed after participation in DL, and thematic analysis using NVivo 11 software was used.

Results: Three themes emerged, including: (i) the Dementia Live? as an eye-opening experience; (ii) the perceived benefits of the Dementia Live? on themselves; and (iii) recommendation of the Dementia Live? to other caregivers.

Conclusions: Dementia simulation programs such as the Dementia Live? may help caregivers to have more empathy, understand better about the behaviors and feelings of people with dementia, and to use strategies that can help when working with people with dementia. Further experimental research is needed to examine effectiveness of the dementia simulation program on caregivers and people with dementia.     

Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

ABSTRACT

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.     

Impacts of child development accounts on parenting practices: evidence from a randomised statewide experiment

ABSTRACT

This study examines the impact of Child Development Accounts (CDAs) on parenting practices of mothers with young children in a statewide randomised experiment conducted in the United States. The experiment included 2704 primary caregivers of children born in Oklahoma during 2007: 1358 were randomly assigned to the treatment group and 1346 to the control group. Structural equation modelling suggests that the punitive-parenting score among treatment participants was .12 standard deviations smaller than that among control participants (p < . 05). Findings indicate that CDAs reduce punitive parenting, and may serve as an additional tool for positive parent–child interactions.     

Gerontological Social Work Student-Delivered Respite: A Community-University Partnership Pilot Program

ABSTRACT

This study describes a community-university partnership to support a gerontological social work student-delivered respite program, the Houseguest Program (Houseguest). Houseguest was designed using a community-engaged scholarship model of integrating research, teaching, and service. Houseguest was piloted with a small group of community-dwelling, coresiding dementia caregivers and care recipients. We examined caregivers’ experiences with student-delivered respite using qualitative data analysis. Thematic analysis produced 8 themes: (a) respite from full time caregiving role, (b) information on caregiving strategies, (c) no-cost supportive services, (d) opportunity for care recipients to socialize, (e) tailored activities for care recipients, (f) rapport-building between students and family dyad, (g) reciprocity between students and family dyad, and (h) program continuation. We conclude with a proposed community-engaged scholarship model for dementia caregiving. Through a community-university partnership, Houseguest reduced the impact of caregiver burden and created an opportunity for students to serve families affected by dementia through respite and tailored activities.     

The DASH Pilot Project: Developing Community-Based Nutrition Education for Older Adults

ABSTRACT

Nutrition-related chronic health conditions among older adults are a growing concern. In this study, nutrition education materials were created for use in senior centers by graduate nutrition students. After the materials were presented, focus groups were conducted with participants (n = 62) to obtain feedback on the content and presentation. Findings related to the participant’s knowledge of nutrition-related information, strategies to improve future class sessions, and participant recruitment will be discussed. These findings will be useful to program administrators as they develop nutrition programs for older adults who are vulnerable to nutrition-related health problems.