https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(12)60692-8.pdf

Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies.

Encouraging participation by older people in the process of conducting research in the aged care field is paramount for developing an understanding of their experience. While some authors have recognized member checking as a way of ensuring participation in the research process, little information is available on how to conduct it. In this article a pilot study is described in which two older women discuss their experiences around receiving support services in their own home. In-depth and member checking interviews were undertaken, which were informed by Heidegger's interpretive hermeneutic phenomenology. In this study a methodology for conducting member checks is developed that is consistent with participatory approaches and the active negotiation of meaning inherent in this paradigm.

Member checking with older women: a framework for negotiating meaning.

Family caregivers are critical partners in the plan of care for patients with chronic illnesses. Nurses should be concerned with several issues that affect patient safety and quality of care as the reliance on family caregiving grows. Improvement can be obtained through communication and caregiver support to strengthen caregiver competency and teach caregivers new skills that will enhance patient safety. Previous interventions and studies have shown improved caregiver outcomes when nurses are involved, but more research is needed. There is more to be learned about the effect of family caregivers on patient outcomes and areas of concern for patient safety. Nurses continue to play an important role in helping family caregivers become more confident and competent providers as they engage in the health care process.

Supporting Family Caregivers in Providing Care

Costs and consumer preference have led to a shift from the long-term institutional care of aged older people to home and community based care. The aim of this review is to evaluate the outcomes of case managed, integrated or consumer directed home and community care services for older persons, including those with dementia. A systematic review was conducted of non-medical home and community care services for frail older persons. MEDLINE, PsycINFO, CINAHL, AgeLine, Scopus and PubMed were searched from 1994 to May 2009. Two researchers independently reviewed search results. Thirty five papers were included in this review. Evidence from randomized controlled trials showed that case management improves function and appropriate use of medications, increases use of community services and reduces nursing home admission. Evidence, mostly from non-randomized trials, showed that integrated care increases service use; randomized trials reported that integrated care does not improve clinical outcomes. The lowest quality evidence was for consumer directed care which appears to increase satisfaction with care and community service use but has little effect on clinical outcomes. Studies were heterogeneous in methodology and results were not consistent. The outcomes of each model of care differ and correspond to the model's focus. Combining key elements of all three models may maximize outcomes.

/pdf/a-systematic-review-of-different-models-of-home-and-55d07bvaq6.pdf

A systematic review of different models of home and community care services for older persons.

There has been significant expansion and change in the financing, coverage, and delivery of home- and community-based services during the past decade. This article reviews the cost-effectiveness of Medicaid waiver programs, consumer-directed care, capitated models that blend acute and long-term care services, and case management and subsidized community services for individuals with dementia. Generally, these new care models were found to be associated with increased costs, but greater client and caregiver welfare. Depending on the specific features of the program, capitated care models and consumerdirected care were identified as potential mechanisms toward providing services more efficiently. Importantly, however, most recent evaluations have relied on potentially confounded research designs, which leaves open the question of whether the findings relate to the programs or biased selection across the treatment and comparison groups.

/pdf/the-cost-effectiveness-of-noninstitutional-long-term-care-4mqlltrkdp.pdf

The cost-effectiveness of noninstitutional long-term care services: review and synthesis of the most recent evidence.

OBJECTIVE: To examine the service experiences and outcomes of low-income Medicaid beneficiaries with disabilities under two different models for organizing home-based personal assistance services: agency-directed and consumer-directed. DATA SOURCE: A survey of a random sample of 1,095 clients, age 18 and over, who receive services in California's In-Home Supportive Services (IHSS) program funded primarily by Medicaid. Other data were obtained from the California Management and Payrolling System (CMIPS). STUDY DESIGN: The sample was stratified by service model (agency-directed or consumer-directed), client age (over or under age 65), and severity. Data were collected on client demographics, condition/functional status, and supportive service experience. Outcome measures were developed in three areas: safety, unmet need, and service satisfaction. Factor analysis was used to reduce multiple outcome measures to nine dimensions. Multiple regression analysis was used to assess the effect of service model on each outcome dimension, taking into account the client-provider relationship, client demographics, and case mix. DATA COLLECTION: Recipients of IHSS services as of mid-1996 were interviewed by telephone. The survey was conducted in late 1996 and early 1997. PRINCIPAL FINDINGS: On various outcomes, recipients in the consumer-directed model report more positive outcomes than those in the agency model, or they report no difference. Statistically significant differences emerge on recipient safety, unmet needs, and service satisfaction. A family member present as a paid provider is also associated with more positive reported outcomes within the consumer-directed model, but model differences persist even when this is taken into account. Although both models have strengths and weaknesses, from a recipient perspective the consumer-directed model is associated with more positive outcomes. CONCLUSIONS: Although health professionals have expressed concerns about the capacity of consumer direction to assure quality, particularly with respect to safety, meeting unmet needs, and technical quality, our findings suggest that the consumer-directed service model is a viable alternative to the agency model. Because public programs are under growing pressure to address the long-term care needs of low-income people of all ages with disabilities, the Medicaid personal assistance benefit needs to be reassessed in light of these findings. Consumer-directed models may offer a less elaborate and possibly less costly option for organizing supportive services at home. Study limitations may limit the generalizability of these findings. This was a natural experiment, in which only some counties offered both service models and counties assigned recipients to a service model. The use of a telephone survey excluded important recipient subsets, notably people with severe cognitive impairments. A more definitive study would include direct observations as well as survey approaches.

Comparing consumer-directed and agency models for providing supportive services at home.

Purpose. Research on home-care outcomes has highlighted the promise of consumer-directed models that rely on recipients rather than agencies to arrange and direct services. However, there has been little research on workers employed directly by recipients. This study examined differences in work-life and worker outcomes between workers in consumer-directed versus agency care as well as between family and nonfamily workers. Design and Methods. A random sample of 618 workers in the In-Home Supportive Services program in California was selected and interviewed by telephone between September 1996 and March 1997. Interviews were conducted in English, Spanish, and three Asian languages, with a focus on worker stress and satisfaction. Results. Findings indicate a mixed portrait of worker experience and outcomes. Most model differences disappear when other variables are controlled, but some worker-stress differences persist between models and types of worker. Implications. On most dimensions of stress and satisfaction, consumer-directed workers report outcomes equal to or more positive than agency workers. Efforts to improve the work life of home-care workers should acknowledge the strengths of consumer-directed approaches and target all workers across models. Long-term-care workforce issues have become more prominent as demand for supportive services continues to grow among people of all ages with chronic impairments, while doubts increase about society’s capacity to respond. Concerns have been raised about the supply and performance of paraprofessional workers providing personal care and homemaker services at home to the frail elderly and people with disabilities (Feldman, 1993; Stone & Wiener, 2001). Although families and friends continue to bear much of the burden and meet many of the care needs of people with chronic impairments, questions arise about their capacity to do so in coming years.

/pdf/work-life-differences-and-outcomes-for-agency-and-consumer-52thvdpvdk.pdf

Work-Life Differences and Outcomes for Agency and Consumer-Directed Home-Care Workers

Purpose: Supportive services at home are essential for older people with severe chronic impairments. Newer “consumer-directed” models of organizing home-based services rely heavily on service recipients rather than home care agencies to arrange and direct care at home. This study examined differences in service experience and outcomes between recipients over and under age 65 who direct their own services in one large Medicaid program. Design and Methods: A random sample of 1,095 recipients of In-Home Supportive Services in California was selected and interviewed by telephone. Interviews were conducted in English, Spanish, and three Asian languages; those with severe cognitive impairment were excluded from the study. Results: Findings indicate that although younger recipients embrace self-direction more enthusiastically than older ones, age differences are small on a majority of service outcomes. On average, older users embrace this model and manage within it much like younger users. Some differences emerge between the young-old (65‐74) and old-old (75 � ), but these are neither consistent nor determinative. Implications: Old age is far from an inevitable barrier to self-direction. As with other age groups, there are opportunities and obstacles to be addressed as this newer approach to home care is disseminated.

Age, Consumer Direction, and Outcomes of Supportive Services at Home

Purpose: The use of consumer-directed services is expected to grow in coming years, and paying family and friends is a key element of these home-based services. The goal of this study was to understand the careers of these ‘‘related workers’’ (family and friends) and their potential role in the long-term care workforce. Design and Methods: We conducted a telephone survey of 383 former paid home care related workers in California’s In-Home Supportive Services program. Of these, 203 had left caregiving (Leavers) and 180 had continued in other paid caregiving jobs (Stayers). Questionnaire items covered work histories, current employment, and the initial In-Home Supportive Services work experience. Results: About 85% of the sample was female, 39% was White, and the average age was 48 years. Findings suggest that Stayers were more like career caregivers in terms of work history, education, earnings, and reasons for taking a job. Leavers were more apt to care for a close relative and to feel they had less choice in accepting the job. Surprisingly, more than 40% of Leavers indicated they would consider paid caregiving again, even for someone not related. Less surprisingly, more than two thirds of Stayers indicated they would. Implications: The growing number of programs that pay family members to provide home-based services are attracting relatives and friends who had not considered home care as a career option. With more outreach and targeted information about home care employment options, these related workers may help solve the long-term care workforce shortage.

Retention of Paid Related Caregivers: Who Stays and Who Leaves Home Care Careers?.

If anything best describes recent trends in the complex world of long-term care (LTC), it is the growth of interest and investment in home and community-based services (HCBS). Various forces have driven efforts to shift from disproportionate investment in nursing homes to a more diversified set of institutional and noninstitutional services, including home-based services, day care, respite services, case management, and others. The Cash & Counseling Demonstration and Evaluation reported in this Special Issue examines a new approach to the provision of increasingly important home-based personal assistance services (PAS) to people with disabilities of all ages.

Because most people with LTC needs now live in community settings, especially at home, there has been a growing demand for enhanced supportive services at home—in particular, for “personal care” or “personal assistance” services. PAS include help with activities of daily living (ADLs) such as bathing, dressing, eating, and toileting, along with instrumental activities of daily living (IADLs) like cooking, shopping, and housekeeping. These individualized services may make the difference between living independently at home and needing support in congregate or institutional settings (LaPlante, Harrington, and Kang 2002).

Most people with personal assistance needs receive help from unpaid family members, but other options have emerged for those without adequate sources of informal assistance. Private home care agencies provide paid personal assistance in the market place, and public programs provide these services to those with low-incomes and thus limited capacity to purchase routine help privately. While there are now several such public programs, including those funded under the Older Americans Act, the Social Services Block Grant, and state-only sources, by far the most important are financed through the Medicaid program. Medicaid funds PAS modestly through its home health benefit and more generously through HCBS waivers and the optional state plan personal care services benefit. Recent analysis indicates that an estimated 13–15 million persons needed PAS in 2004. Among these, just over four million needed paid (formal) services (Kaye et al. 2006) with one to 1.5 million of these receiving PAS through Medicaid benefits and waivers.

The Cash & Counseling Demonstration was designed to provide a more consumer-centered alternative to the traditional model of PAS delivery by home care agencies. PAS (like most home-based services) typically are provided by agencies that send nurses, therapists, and aides into the home to deliver both medically related home health services and more supportive PAS. For example, when a Medicaid applicant is deemed eligible for PAS, he or she is referred to an authorized provider agency that assigns a worker and schedules service visits. The agency also defines allowable tasks, monitors worker performance, processes any complaints, arranges backup, and otherwise manages service delivery (Benjamin 2001). Critics of the agency-based model argue that all of these decisions are more likely to be made on the basis of agency interests than in response to recipient needs. For example, workers may be in short supply and are assigned as available and rotated as needed, disrupting both nascent and long-standing service relationships. Scheduling is done by the agency with what may be limited regard for recipient preferences about when help is most needed. Timely visits may be sacrificed for agency needs without asking or informing clients beforehand or arranging back-up services. For liability reasons, agency workers are constrained in the tasks they may perform. What training workers receive may involve doing assistance tasks in a prescribed way, even if not compatible with recipient preferences. More generally, critics charge that the professional-agency model tends to assume that people with physical limitations must also have other limitations that restrict their analytical capacities and ability to express preferences and make sound decisions about services.

In consumer-directed approaches, like Cash & Counseling, many of these choices and responsibilities are shifted to the recipient or “consumer.” Consumer direction assumes that most supportive services are essentially nonmedical, low-technology services that do not require either extensive worker training or external monitoring. Instead, the consumer can decide which services are needed, when and how they are delivered, and by whom. In arranging assistance, the consumer may be free to choose a family member or friend to be their personal assistant. From this perspective, consumers should be empowered to make all or most service decisions, and physical (and even cognitive) limitations should not be barriers to expressing preferences and making decisions about services so personal and fundamental to their quality of life. The Cash & Counseling model is a more intensive variant of “consumer directed care,” in the sense that it places in the hands of consumers direct control of monthly cash allotments and considerable discretion to purchase any services or goods they consider essential. In this model, recipients can manage their cash directly or pay a small fee to have a certified fiscal agent manage fund accounting. The counseling part of the program involves professionals who are available to provide consumers with information and advice as they assume the role of “employer” in managing funds and services.

/pdf/putting-the-consumer-first-an-introduction-and-overview-2sjb8q4gjs.pdf

Putting the consumer first: an introduction and overview.

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