Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers’ Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers’ unique concerns and challenges and that build upon their existing care networks are recommended.     

THE USE OF SOCIAL SERVICES BY BLACK AND WHITE ELDERLY

Little is known about the roles of the family, kin, and non-kin support networks in determining the use of social services by the elderly. The purpose of this study was to examine the role of the formal and informal support systems in explaining social service utilization by Black and White elderly. Path analytic procedures are used to test an explanatory model of utilization by a national area probability sample of 3.996 non-institutionalized elderly. The findings indicate that informal family support was more important for Black elderly than White elderly. In addition, family aid was found to be supplementary rather than an alternative support system. In the planning, designing, and delivery of social services to the elderly, it is imperative that racial and cultural differences become explicit input factors. Additionally, future researchers have a responsibility to employ research procedures capable of simultaneously dealing with a comprehensive range of variables in investigating this rather complex phenomenon.     

Utilization of Formal Support Services Among Hispanic Americans Caring for Aging Parents

Abstract

Most studies of formal service utilization among ethnic minority groups reveal little about the within-group variation in formal service use by caregiving families. The present study explores patterns of formal service utilization among 43 Hispanic caregiving families that vary according to differences in level of acculturation. In so doing, the utility of Andersen's behavioral model of health care service utilization is called into question.     

Capability Traps Impeding Homeless Services: A Community-Based System Dynamics Evaluation

Continuums of Care (CoCs) are the primary coordinating bodies for homeless services in the United States. However, the complexities involved in delivering homeless services across interagency networks challenges coordination and system improvement. CoC governance, planning, and service provision have received little attention in academic literature, and thus, Continuums attempt to manage complex systems with little guidance. This evaluation applied community-based system dynamics with homeless consumers and service providers to (1) identify capability traps that impede services delivery and to (2) engage stakeholders in a structured system improvement process. Results revealed organizational structures for governance and planning that inhibit system outcomes. Insights led to policy and practice recommendations for the homeless system.     

A Preliminary Approach to Defining Social Service Outputs for Auditing Service Distribution

An accurate evaluation ofthe effectiveness of social services requires that the unit of output be clearly defined. The problem, which has never really been solved, has become more important with the passage of Title XX of the Social Security Act. The Title XX Amendments to the Social Security Act decentralize planning for social services to state and local governments. Title XX goals do not easily translate into measures of achievement. This paper describes a standardized framework that discriminates among the elements of service output. Data on the services provided by one social service agency are used to support the feasibility of proposed frameworks. The concept of a unit of service output was used in this study for the purpose of developing standardized categories to measure service provision. Two measures of service activity were developed: One measures service intensity, and the other relates to consumers' need for and utilization of services. The study was conducted at a local social service district in an urbanized county of 400,000. The sample of cases consisted of 120 new applicants accepted for public ossistance during the first 3 months of 1964. A retrospective longitudinal analysis of services provided was performed. All components of service provided to each sample care during the period of 1964-19 71 were coded from agency records in units of service output.     

Parallel Service Delivery in Community Long-Term Care

Using data collected in a state-wide study of adult day care (ADC) in Pennsylvania and indices of technicality, routinization and service provision, this study examined the interventive relationship between ADC program staff (n = 59) and participant caregivers, (n = 67). The analysis found the relationship between formal and informal networks to be one of parallel service delivery rather than complementary roles with caregivers providing a wider range of services more frequently than program staff (t = 6.91, p < 601).     

Poverty, Social Exclusion and the Politics of Disability: Care as a Social Good and the Expenditure of Social Capital in Chuadanga, Bangladesh

People labelled with disabilities in Chuadanga, Bangladesh, are denied equitable access to social networks and formal services. In terms both of funding future formal service programmes and of designing community‐based outreach programmes, this lack of access is not a simple reflection of one's impairment but a facet of the social exclusion and stigma that is culturally ascribed to disability in Chuadanga. We utilize a social model to focus on the cultural processes initiated by the onset of illness or impairment. Our participants are drawn from four types of diagnosed disability: blindness, orthopaedic impairment, hearing impairment and mental disorder. Although this inquiry is in line with Daly's focus on how future spending on formal services to promote care and equity in Europe can be helped by searching out information that is often ignored, the particular focus of this study is Chuadanga and the research questions incorporate a disability studies perspective. The authors consider care as a social good and an expenditure of social capital, in reviewing findings from a recent empirical study of disability and employment in the Bangladesh district of Chuadanga. Regardless of disability, poverty can be a morally and socially devastating ordeal. However, the authors conclude that the added loss of social solidarity and equitable access, due to the social exclusion and stigma of disability for the families concerned, make it statistically far less likely that they will access formal services or be able to escape poverty.     

Halfway There? Policy,Politics and Outcomes in Community Care

The community care reforms which followed the 1989 White Paper "Caring for People"were apparently focused on addressing the needs of people requiring long-term care, and on achieving improved outcomes and better quality of life.
The agenda set out by the White Paper was for community care in the next decade and beyond. Half way through this decade, we question the extent to which the objectives of promoting choice and independence for users and carers have been achieved. The paper draws particularly on a programme of monitoring conducted jointly by the Nuffield Institute for Health and the King's Fund, based on national and local focus groups meeting over a two-year period. It proposes a framework for evaluation which consists of four components: the definition of desired outcomes; specification of service systems necessary to deliver such outcomes; promotion of access to services; and the development of supporting operational policies and resource allocation mechanisms.
This framework offers a substantial step beyond much of the monitoring of the community care reforms which has taken place to date. This has assessed progress largely in terms of the establishment of new systems and processes. We conclude that such changes were essential building blocks for delivering better-quality community care services, and in the short term it may have been legitimate to view their establishment as proxies for progress towards delivering user-centred services. However, monitoring and evaluation should now be increasingly oriented towards ensuring that these changes are in fact producing the desired service outputs and urn outcomes. We propose that our framework offers one such way forward.     

Contextualizing Performance of Coordinated Care Network of Veteran Services in Virginia

Abstract

Coordinated care network is an approach to human service delivery that is recognized to improve client outcomes at a reduced cost. However, general mixed findings on the effectiveness of coordinated care networks warrant research contextualization. This article seeks to discover factors influencing the performance of a coordinated care network delivering social services to veterans and their families. The study provides a contextual analysis of a coordinated care network launched in 2016 in southeastern Virginia for two samples of 1,512 and 375 veterans and their families. Results of the regression analyses indicate that initial progress has been made both in efficiency measured as the amount of days a client’s case is open and effectiveness measured as the recorded outcome of a client’s case. However, performance was affected by both client’s characteristics and types of services requested. Therefore, performance was not uniform across the network of providers. Further, indicators could be enhanced to better capture areas of the network needing improvement. Future research may consider adding performance measures and track it over time and across contextual attributes to confirm the effectiveness and efficiency performance of a coordinated care network.     

Resettlement challenges faced by refugee claimant families in Montreal: lack of access to child care

Adult refugee claimants experience several well‐documented post‐migratory challenges. Little is known about the resettlement process for refugee claimant families with children. This study reports on 75 open‐ended, in‐depth interviews with refugee claimant families in Montreal about their resettlement challenges and their proposed solutions to them. These interviews were conducted with 33 dyads and triads of children and parents attending a paediatric hospital. Experiences accessing formal and informal child care in Montreal were addressed. Subsequently, a comparative policy analysis was conducted on residency eligibility criteria for child care subsidization. Twenty‐eight out of 39 parents (73%) report a lack of informal or formal child care and 15 out of 33 families (39%) propose improving access to formal child care services. They describe a lack of informal child care as a result of reduced social networks, and affordability as a barrier to formal child care services. Refugee claimants are not eligible for subsidized child care in Quebec. A comparative policy analysis within Canada and comparable countries reveals that this situation is not unique to Quebec. However, most provinces and European countries offer child care subsidies to refugee claimants. Refugee claimants should qualify for child care subsidies. Social workers and community organizations should consider their clients' child care needs in designing programmes and services.     

Links between social environment and health care utilization and costs

The social environment influences health outcomes for older adults and could be an important target for interventions to reduce costly medical care. We sought to understand which elements of the social environment distinguish communities that achieve lower health care utilization and costs from communities that experience higher health care utilization and costs for older adults with complex needs. We used a sequential explanatory mixed methods approach. We classified community performance based on three outcomes: rate of hospitalizations for ambulatory care sensitive conditions, all-cause risk-standardized hospital readmission rates, and Medicare spending per beneficiary. We conducted in-depth interviews with key informants (N = 245) from organizations providing health or social services. Higher performing communities were distinguished by several aspects of social environment, and these features were lacking in lower performing communities: 1) strong informal support networks; 2) partnerships between faith-based organizations and health care and social service organizations; and 3) grassroots organizing and advocacy efforts. Higher performing communities share similar social environmental features that complement the work of health care and social service organizations. Many of the supportive features and programs identified in the higher performing communities were developed locally and with limited governmental funding, providing opportunities for improvement.     

The Promotion and Disruption of Community Service Delivery Systems

In this paper, we report data drawn from a larger project on the functioning of the Queensland community service delivery system, particularly that providing services to people with disabilities. Our reasoning for focusing at this level is that, from the service user's perspective, support is derived from the service delivery system, not just individual service providers. Defining the service delivery system as formal services and informal support networks, we undertook interviews and focus groups with service providers in six areas in Queensland: inner urban, outer urban, rural and remote. The period on which we report is one in which considerable reform activity had been undertaken by funding bodies of the Commonwealth and State governments. We report on those factors we identified which promote the integrated functioning of the service delivery system, as well as those factors that disrupt it. We conclude with a brief evaluative analysis of the current status of the system.     

What do we know about the social networks of single parents who do not use supportive services?

The role that social support and social networks play in mediating isolation and stress experienced by vulnerable families is well established. However, a major issue facing supportive human services is to find and engage families with limited social networks and link them to supports that could improve outcomes for their families. This paper reports on the results of in‐depth interviews with 20 sole parents with children aged under 5 who were not well connected to services. It documents their social networks with the use of a social network map. Using a social capital lens, the analysis attempts to differentiate the different relationships in the participants' lives. Most participants were not satisfied with their informal networks, with conflicted or ambivalent reliance on family, absence of support and community engagement and fragility of informal networks. Although this group of isolated mothers does encounter the formal service system, the opportunities to increase and strengthen their networks do not eventuate. Better understanding of the nature and extent of social networks can inform practitioners and policy‐makers of the critical factors needed to increase service use for parents with limited resources.     

A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.     

Puerto Rican Elders' Knowledge and Use of Community-Based Long-Term Care Services

We conducted 3 focus groups with 28 Spanish-speaking Puerto Rican elders to explore their knowledge and use of community-based long-term care services, including an exploration of whether their residential setting influences access to services. Analysis revealed themes relating to participants' difficulties and frustrations with formal services. A major theme was a reliance on formal services, given a lack of reliable familial help. Elders living in Latino senior housing reported the greatest access to services, with availability of Spanish-speaking housing staff and informal support from neighbors serving as critical components of their social networks. Practice and policy recommendations are provided.     

Prenatal Care Utilization and Persistence Patterns in a Developing Nation

Utilization of prenatal care services is an important public health issue, in that lack of utilization is associated with poor pregnancy outcomes, particularly among socially and economically high-risk women. This investigation explored factors associated with utilization of prenatal care services in a sample of 185 urban Jamaican women. Data were collected at an initial prenatal care clinic visit, follow-up interviews with those who failed to persist, and from medical records. Findings indicated that the two most important factors in late initiation of prenatal care, and in failure to persist, were cost of service and susceptibility to poor pregnancy outcome.     

Stilling the tremors: Resurrecting HIV services in Haiti's post‐earthquake tent cities

The January 12, 2010 earthquake in Haiti severely undermined HIV service provision in the country. Almost 10 percent of Haitians were displaced and now live in temporary tent communities. Little is known about how HIV services are being provided to Haitians with HIV in these encampments. This study addresses this lacuna by conducting a process evaluation of the manner in which a collaboration among Haitian community‐based HIV service providers, a US‐based HIV service provider, and a US‐based academic research team resurrected HIV services in the encampments. Efforts to set up HIV services in the encampments proceeded through three stages: (i) an initial crisis response that activated established networks and identified feasible goals; (ii) the development of services by building research capacity, conducting needs assessments, addressing logistical challenges, and establishing community‐based services; and (iii) the sustaining of the initiative by targeting resources and negotiating in the political arena. Implications of the protocol for future efforts are discussed. Key Practitioner Message: ● Resurrecting HIV services in post‐disaster zones; ● Utilizing cross‐country, provider–academic partnerships to develop service capacity; ● Targeting structural barriers to establish HIV services in resource‐poor settings.     

Do public services influence patterns of informal care? Informal networks and public home care in three Swedish municipalities

Whether an individual receives home care services depends on two factors: the functional disability of the care recipient and the caregiver's gender, when the living arrangements of the care recipient are controlled. Data from this longitudinal study of social networks and home care organization in 3 municipalities in Sweden show that care recipients with a severe disability received more home care services than others. In cases where the main caregiver lives together with the care recipient, the public services are adjusted to the family situation and are independent of the functional disability of the care recipient. Care recipients who live with the primary caregiver receive less formal help than do care recipients who live alone. When the primary caregiver does not live together with the care recipient, the public services are adjusted to the functional disability of the care recipient and are independent of the primary caregiver's gender. Care recipients supported by a male helper received more formal help than care recipients supported by a female helper. Those supported by a female helper received more informal help. Various models of relationships, supplementation and complementation between informal care and public services are discussed. The dependence on public home services is high. Assistance with basic activities of daily living is the first area requiring complementary contributions from the public services. A special type of kin independene was found, related to the function of public services in a modern and gender-equal society. The results provoke a discussion on research design as well as comments on welfare policy and gender equality in the transformation of the welfare state.     

Aging and Elder Care in Japan: A Call for Empowerment-Oriented Community Development

This article provides a brief overview of the situation of the elderly and their caregivers in Japan, including demographic changes in Japan, development and changes in long-term care policy that have targeted the poorly integrated community care system, and other challenges that the elderly and family caregivers face. Policy direction designed to address these issues is increasingly targeting care by the community versus support care by society (which was initially the main strategy). The potential of empowerment-oriented community development intervention strategies to decrease the gap between available institutional and formal community-based services and the needs of the elderly and their families in their efforts to meet late life challenges is described. The need for an increased role of social workers in community development interventions is explored and strategies are suggested.